Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care

Types of participants

Studies that included, and papers that were about, people with dementia or Alzheimer’s disease (including ‘confusion’ or ‘memory problems’).

Phenomena of interest

Studies that evaluated or that elucidated the theoretical underpinnings of LSW with people with dementia.

Types of outcomes

Any outcomes reported.

Study designs

Any study design, qualitative or quantitative.

Date

Studies published in or after 1984.

Data extraction headings

Data extraction headings were developed after the first reading of the included studies and were discussed both in the research team and with the project steering group. The headings were then used to create data extraction forms in Microsoft Excel^® (Microsoft Corporation, Redmond, WA, USA).

For the best practice part of the review, the final data extraction headings in relation to ‘doing’ LSW were format of the LSW, contents to include, contents to exclude or avoid, style of the LSW product, which people with dementia should do LSW, who should be involved in doing LSW, when LSW should be done, and ethical issues. Headings for organisational ‘best practice’ issues were the culture of care, leadership and management support for LSW, resources and time, support for staff doing LSW, training and preparation for staff/volunteers doing LSW, and incentives.

For the theory of change review, we were interested in any causal links that authors argued – either explicitly or implicitly – existed between doing LSW and outcomes (whether for people with dementia, family members or care staff).

For this part of the review, then, the data extraction headings were type of LSW (as defined by analysis of the first stage of the review – see Results, Good practice in life story work), argued causal links between LSW and outcomes, types of primary outcomes, types of intermediate or process outcomes, and contextual influences and factors that might affect outcomes.

All data extraction for both parts of the review was carried out by one researcher (GMP). The progress and initial findings of the extraction process were shared with other members of the team and with the project steering group.

What is a narrative approach to life story work?

Publications in this category were those that most frequently talked about LSW as a process tantamount to writing a novel. Thus, LSW was not about documenting ‘objective facts’ but rather about the personal interpretation of facts24 and identifying the strength of the person living with dementia and the wisdom that they had accumulated during life. 25 As a result, the main issue in doing a life story was not accuracy, but capturing the emotions that accompanied that story, engaging with the person and hearing what they had to say about their identity and feelings. 25,26 Similarly, it was felt that there was no one way to ‘do’ LSW or to decide what content it should have; rather, it should be regarded as a process whereby doing one element of LSW might lead to another. 27,28

Given this narrative approach, it was not surprising that the person living with dementia was seen as being firmly at the centre of the work29 or as the virtual director (of a filmed life story). 30 LSW was a process, not just a form to be filled in,29 and the story produced, via a dignified and respectful process, enhanced a person-centred approach. 28 Some also felt that a narrative approach produced a life story that was easier to read and engage with, both for the person living with dementia and for those who lived and worked with them. 28,31 Further, a narrative could be a living thing that recorded not just the past but also the present. 29,30

Even in the description of an entirely carer-led life story process, a distinction was made between ‘social histories’, typically gathered in nursing homes, and the attempt in LSW to illuminate as well as report on a life. 32–34 These papers did talk about capturing facts, but also about communicating the essence of the person living with dementia and what made them unique.

Good practice in narrative approaches to life story work

Fourteen of the papers that represented a narrative approach also included details about how best to do LSW, although three of these were about the same intervention. There was a high degree of consistency about what this approach should contain and the process it should follow.

The strongest common message was that the LSW process should focus on feelings, opinions, meaning and emotions25,28,31 and reflect the themes, topics or objects that are most important to the person living with dementia. 31,35,36 This means that the person living with dementia should choose the topics and material to be included and the way in which these are presented. 35,36 This orientation was reflected in some commentators’ views that carers could be involved with creating a life story, but only with the permission of the person living with dementia. 29,36

As outlined above, we did find accounts of a strongly narrative approach to LSW that was entirely carer led, but, even here, it was argued that the emphasis should be on key themes that illustrated the person’s life rather than a list of facts about them. 32–34

Several writers also talked about the importance of the life story not just being about the past but also being a ‘living’ or continually evolving account. It should thus be able to include current hopes and future wishes,26,29 record aspects of current life,30 add new stories and ideas and allow ‘editing of the past’ to match the current viewpoint of the person living with dementia. 24,31

The emphasis on meanings and emotions underlines a need for a high degree of emotional intelligence in the person facilitating the life story production. One paper emphasised that the person who helps the person with dementia to create the life story needs to be ‘emotionally present’, prepared to be the ‘validating witness’ for the story, and receptive, open and non-judgemental about the story being told. 27 This recognised that whatever story is being told, it is of consequence to the teller and has been shared at an emotional cost. Others talked more generally about the importance of building strong rapport and a trusting relationship, without which nothing can happen. 30,35

However, this emphasis on feelings and meaning may bring up issues that the life story process cannot resolve, in and of itself. One writer clearly states that LSW should not try to resolve either past or present problems; it is not therapy, even if it might be therapeutic. The issues of material that should not be included in a life story, and with whom the life story might be shared, are thus important too. Some researchers acknowledge that, although people with dementia are likely to express a wide range of preferences in relation to sharing and privacy,25 the process might reveal issues that should never be revealed to anyone else without ‘express permission’. 27 This means that the person to whom the life story belongs must be able to choose how much of it they want to share with others. 24

When the process is carer led, carers themselves should choose to tell only the stories that they believe the person with dementia would tell, and keep private those they would keep private,32–34 thereby viewing the process in the same way that they would view surrogate decision-making. 34 By contrast, two descriptions of a narrative approach argued that, although carers could be involved in LSW, this should be only with the permission of the person living with dementia. 29,36 Although some papers included clear statements about ownership of the LSW, one gave a somewhat confused account, reflecting the experience that if ownership is not properly negotiated at the start of the process, then problems and conflict may emerge later. 30

The issue of what material should and should not be included and/or shared in a life story was also related in some writers’ accounts of which people living with dementia should or should not be offered the opportunity to do LSW. Some publications advocating a narrative approach stated that LSW could be done regardless of the stage or type of dementia26,37 – which may be true – or that it should be started as early as possible. 31 However, it is necessary to select carefully those to whom LSW is offered,38 taking into account both personal preference and the likelihood of causing distress. 26,36

What is a biographical or chronological approach to life story work?

The approach evident here is distinct from a narrative approach in its emphasis on a relatively ordered, chronological recording of the life of the person living with dementia. Writers thus talked about a final product that follows the life course, from birth to the current day, with material that is displayed or recorded chronologically, even if it is not necessarily gathered systematically. 39–42 There is thus an emphasis on remembering and memories,43 on lists of topics to be addressed39 and on timelines,41 rather than on feelings and meaning. Perhaps as a corollary to this more structured approach, there is less reference here to validation of the life portrayed (Gibson and Carson39 being a notable exception).

Good practice in biographical or chronological approaches to life story work

The more structured underlying approach here gives rise to a more directive feel to recommendations about how life stories should be recorded. Books, albums, workbooks and topic-based templates are recommended or described,39–41,43 while timelines and visual and auditory ‘prompts’ and triggers to memory are suggested as useful adjuncts. 41,42,44 There are also recommendations about ensuring that books and albums are attractive40,41 and immediately recognisable as belonging to the person living with dementia. 40

The involvement of the person living with dementia does not seem as central in these approaches as in the narrative ones. In two of the models described, the person’s memories are recorded and transcribed by others, based on audio-taped ‘life review’ sessions43 or weekly, one-to-one reminiscence sessions in which a member of care staff acts as an ‘amanuensis’. 39 One account suggests that a life story can be constructed based on what the ‘helper’ already knows about the person living with dementia, but points out that both the process and the end product are more meaningful if the person is included in the process. 41 This seems a much weaker commitment to the centrality of the person living with dementia than was evident in the descriptions of narrative approaches.

The role of family members or carers in LSW is also more evident here, with suggestions that they can encourage or facilitate the involvement of the person living with dementia40,43 or indeed that they are ‘integral’ to the process. 44 One account reported that, although family members had been initially reluctant to discuss the past with their relative, fearing that they would cause distress, they had actually managed to have meaningful and pleasant discussions while doing LSW. 40

One publication in this group (in which the production of a life story was tied in to ‘life review’) was clear that LSW was best done with people who were in the early stages of dementia and with those who were interested and had the cognitive, emotional and physical capacity to participate in life review activities. 43 By contrast, the authors who described an evaluation of a video photo show approach to LSW felt that it worked best for people with moderate to severe dementia, because they were less likely than people with lower levels of impairment to lose interest while watching the video on multiple occasions. 42

The only other practical recommendation that emerged from this set of publications was the importance of using statements rather than questions in the final LSW product; this was in relation to a video-based life story, but might well also apply to text- or audio-based products.

The publications in this group were, overall, less reflective than those in the narrative group about how to deal with ‘difficult’ material. Some accounts simply suggested that the person might not want to discuss some things and that LSW should ‘avoid’ some types of memories or topics and concentrate on enjoyable memories;41,42 most did not refer to the possibility of difficult issues arising at all. There was, similarly, little routine acknowledgement of issues of privacy or confidentiality. The single publication in the whole review that was specifically about people living with dementia who were lesbian or gay45 talked about the person needing to feel comfortable with the level of detail included in their ‘autobiography’ and that LSW could raise issues of privacy and confidentiality. However, only one description of LSW in this subgroup talked specifically about issues of consent and future use, which, it was suggested, should be logged and recorded in the life story, and, in the case of consent (or assent), should be assured on a continuing basis. 39 Perhaps in implicit recognition of the possibility of having to deal with ‘difficult’ issues, two papers did suggest that untrained staff, or volunteers (even if trained), should not do LSW. 39,43

What is a care-focused approach to life story work?

We defined a third group of publications about LSW based on their strong focus on practical advice about LSW done in care settings or by care staff. They are distinct from the other two groups described above by their emphasis on ‘how to do it’ and a generally lower level of reflection on ‘why’ and ‘what for’ questions about doing LSW. Indeed, only four of the publications in this section reflected on what LSW might be. One discussed the role of LSW as a device for ‘cognitive stimulation’, with the aim of maximising independence, engagement and well-being. 46 Another spoke of LSW as an opportunity to focus on ‘memory windows’ for people living with severe dementia and to identify specific and personally relevant triggers to memory. 47 A third publication spoke of the importance of seeing a life story as an ‘interactive tool-box’ for the person living with dementia, family and care staff, and not just as a source of information. 48 A single publication referred to the need for an holistic approach to underpin LSW. 49

Good practice in care-focused approaches to life story work

Many different life story formats were referred to in these publications: books, collages, photo albums, videos, digital versatile discs (DVDs), boxes of items, and albums with both text and relevant artefacts. As this might suggest, many writers argued that there should be no rigid approach to the LSW ‘product’: that the chosen format should be discussed and agreed with the person living with dementia;49 that life story ‘albums’ should be as individual as the person they were about;48 that it was important to avoid a ‘story book’ format and to include belongings and photographs;50 that any artefacts included should be personally meaningful and significant for the person living with dementia;46 and that the topics in life stories should also follow no rigid format. 51

Although these papers that were advocating a wide range of formats underlined the person-centred decision-making that should determine choice, others suggested that choice was more likely to be or should be determined by the stage of dementia51 or the care setting. 52 Thus, collages were suggested as more appropriate vehicles for life stories in continuing care settings. 52 Further, in contrast to the laissez-faire approach to format, two publications suggested the use of topic lists or templates for creating a life story. 53,54

There seems to be more emphasis in the publications in this group on other people being involved in collecting and recording information than just the person living with dementia and a life story worker. Thus, one publication states clearly that family members compiled the life story books;51 others state that staff recorded memories prompted in reminiscence sessions,54 typed up notes about memories and added photos to them54 or found or added photos and sensory objects related to the ‘main themes’ addressed during LSW. Two writers, however, do underline the importance of ensuring that information recorded by staff, and its use, should then be agreed with the person living with dementia. 49,55 One of these further states that it is the role of the care worker not to ‘steer’ the person living with dementia but to value their reflections and negotiate where in the life story content should be placed. 55

The role of family members is more prominent in this group of publications, although not all writers agree about their role. Views included that mentioned above – that family members should actually compile the life story – and an assertion that the life story should belong to the carer when the family member is living with dementia. 7 Some writers suggest that staff should gather family members’ and friends’ recollections7,47,54 and that they could provide photos or other supplementary material. 46,47,54 Only one paper suggested that the person living with dementia should be asked to give their permission before staff talked to family members and carers. 55 Overall, then, publications in this section see family member or carer involvement in LSW as unproblematic. Indeed, one suggests that staff should ensure that family members are happy with the life story’s contents, but does not make the same suggestion about the person living with dementia. 56

Perhaps because of the care-focused nature of these publications and, therefore, the possibility that they were targeted at care staff working with people living with later stages of dementia, some of them position LSW clearly within the routines and processes of the care setting. Thus, LSW is argued to start with assessment46,49 and to draw on information about the person living with dementia drawn from files, from other staff members and from interactions and observations in the care setting. 46,47,49

Only one publication in this group talked specifically about consent in relation to LSW and this emphasised that consent should be an ongoing and renegotiated process. 54 Another talked about the need to establish trust before any LSW was started. 7 Privacy and confidentiality were raised more often and particularly in relation to ‘personal’ information;7,55 one paper reported LSW where ‘sensitive’ information about the person with dementia was collected from family members but not ‘posted’ in the life story itself. 56

Responding to sensitive or difficult issues was also mentioned, with recommendations that staff helping people with dementia to do LSW should be aware of what type of material might provoke strong or upsetting emotions47,49,54 and perhaps avoid or move away from such material. 54,55 By contrast, it was also important to acknowledge or empathise with strong feelings during LSW,49,55 not least because not acknowledging ‘difficult’ things could be a barrier to understanding. 56 One publication went so far as to say that LSW could be a good vehicle for exploring feelings if staff had counselling skills. 51 Alone among all the publications included in the good practice part of our review, a publication in this subsection raised the ethical issue of the loss of close personal communication that might be experienced by the person with dementia when LSW was completed. 55

What is a hybrid approach to life story work?

A small number of publications (five, reporting four different types of LSW9,57–60) were hybrids, in that they were mainly about LSW in care settings but included some narrative elements in the description of how LSW should be carried out. These publications were least likely of all those reviewed here so far to articulate a view about what LSW actually is. What characterised them as having elements of a narrative approach, however, was their emphasis on the centrality of the person living with dementia. They argued that a life story should reflect the issues and events of most importance to the person living with dementia,9,57 that it should use the words of the person living with dementia58 and that it should be written in the first person. 59

Good practice in hybrid approaches to life story work

Although publications in this group emphasised that there was no single format that LSW might use, in effect all were predominantly about life story books. 9,57–59 One publication emphasised the importance of making the life story product attractive to hold and look at, involving the person living with dementia in the choice of colours and design, and using high-quality materials to avoid any association with ‘childish’ activity. 58

The two publications related to life review suggested recording life review sessions to guide the process of creating the life story,57 using the Haight Life Review and Experiencing Form as a framework for the LSW process. 60 For others, objects and photographs could be ‘starting points’ for the reminiscing that informed LSW and served as illustrations for the book. 9,58 When such ‘starting points’ were absent, however, one publication suggested that finding alternatives or taking new photographs might stand in their stead. 60 Illustration might also be more useful than text in the later stages of dementia.

The authors in this section also pointed out that a life story did not have to be chronological, could include current information and details, should be kept up to date and could be edited to add new material. 9,58,59 However, one publication warned against the ‘diary/log of outings’ approach to keeping a life story up to date. 59 The life review-based publications did not talk about these sorts of issues, presumably because once a life review is finished it is considered complete.

Several authors acknowledged that LSW was not for everyone, whether because of personality or stage of dementia. Some people simply might not want to reminisce. 9 At later stages of dementia it might be difficult to do LSW,9,58,59 particularly if the work relied on life review;58 and in later stages people needed a product that they could look at rather than being involved in producing it themselves. 58 Overall, then, it was better to do LSW earlier rather than later. 9

Despite what appeared to be a commitment to the centrality of the person living with dementia, the publications in this group took different views about who should be involved in LSW and when. Those that saw the life story as a product of life review work were consistent in their view about family carer involvement. While acknowledging that family carers could contribute material to LSW, they argued that carers could not and should not direct the contents of a life story book, and that any involvement in the book should be after life review work was complete, and then only with the permission of the person living with dementia. 57 As a result, staff and participants carried out LSW. 60 There was also a suggestion that family carers should do their own life story at the same time as the person living with dementia. 57 By contrast, other publications suggested that carers could provide material for LSW, after it had been fully explained to them, and that when people living with dementia were too severely affected to do LSW themselves, then carers could contribute. 9 One also felt that templates were useful for LSW because they provided questions and prompts for staff and family members not experienced in LSW,58 suggesting that family members might themselves be doing the LSW with the person living with dementia.

Despite this divergence of views about who could be involved in doing LSW, most publications in this section were clear that the life story product was the property of the person living with dementia,9,57,58 although they were less likely to deal with access issues. One suggested that during the process of gaining consent for doing LSW, the person living with dementia should be shown an example of a life story book and be given clear examples of who might see and use the book once produced. 9 Another said that the person living with dementia should guide the current use, access to and future use of the book. 57

Only one publication in this hybrid group specifically mentioned issues of what and what not to include in the life story product, stating that the boundaries of what should be included or not should be provided by the person living with dementia and their carer and then respected during LSW. 9 Further, this publication warned that perceptions of an invasion of privacy might be more evident when a ‘task model’ of LSW was predominant.

Only two publications9,59 dealt with what to do if difficult issues came up during LSW. They counselled against ignoring expressions of emotion and underlined the importance of skilled listening, but also acknowledged that staff involved in LSW were not there to resolve problems and ‘make things better’. 9 One also talked about the importance of not letting the person with dementia get ‘trapped’ in negative memories. 59

Support for staff carrying out life story work

Related to the issue of resources and time was the theme of the nature of support offered to staff involved in doing LSW. Here, training for LSW was the main concern,7,40,58–60,65 to enable staff to both do LSW and use its products. Only two publications, however,54,65 suggested that staff might be encouraged to create their own life story.

Life story work training might not be enough in itself, however; staff might need help to develop their communication skills,40 or support and encouragement to enable them to explore the stories of people living with dementia without feeling ‘nosey’ or ‘intrusive’. 60 Appropriate supervision or mentorship should also be in place to support staff in setting appropriate professional boundaries and in case ‘difficult’ material is revealed while helping a person living with dementia to create their life story. 11,14,37,63

Finally, there was a subtheme about the importance of a team approach to LSW. LSW should be developed as a mutually supportive team effort, even if not everyone is involved in actually doing it; it should not be left to a limited number of staff whose work might be ‘sabotaged’ by others who do not understand or respect the approach. 39^. 52,56,60 The role of a facilitator in developing LSW and supporting staff in this way was seen as crucial in one study that followed the implementation of LSW in a long-term care setting. 52

Training for life story work

Twenty-three of the included studies mentioned training as an issue in LSW. Most were clear that anyone doing LSW should be trained7,11,38–40,52,64,70 or that trained facilitators or ‘champions’ were essential to good practice. 32,33,39,52 Training for ‘other’ staff, or at least ensuring that all staff understood LSW and could support its use in the care setting, was also recommended. 7,31,39,52,59

Other publications placed less emphasis on the need for training, suggesting that LSW could be done with minimal training if it was accompanied by supportive supervision,66 or that volunteers could ‘graduate’ from family LSW workshop groups to run groups themselves. 33 However, one publication cautioned against the use of volunteers in LSW because of their potential vulnerability and the possibility that ‘difficult’ issues might emerge during LSW,43 while another – that had used an informal ‘monitor’ approach to rolling out LSW training to staff – had had to put in additional training to make this model work. 7

In terms of suggestions about the content of training, publications fell into two main groups.

First, there were those that were mostly practical in orientation. These recommended that training should include information about dementia itself25 and how to ‘select’ people with dementia to do LSW;38 about the different ways in which LSW might be presented;25,38,54 about technical support for LSW such as scanners and computers, library and internet resources;54,65 and about the principles of capacity and consent. 36

The second group of publications concentrated more on aspects of emotional intelligence in relation to LSW, where learning to deal with ‘difficult’ issues was predominant. This grouping included methods for recognising and dealing with difficult issues11,38,60 and emotions;9 developing communication skills and empathy;40 learning how to maintain boundaries37 or, by contrast, becoming willing to scrutinise interpersonal relationships with care home residents;60 and learning to be sensitive to family members. 56 Producing one’s own life story product54,65 or reflecting on one’s own life story more generally49 and reflective practice learning39 were possible routes to enhanced emotional intelligence in LSW practice with others, but could also be empowering for staff in their own right. 65

Recruitment

Recruitment was purposive and designed to include people with dementia from a range of community settings and experience of LSW. Stages of recruitment were:

1. Innovations in Dementia CIC approached some groups they already worked with, as well as new contacts, via group facilitators.

2. Innovations in Dementia then visited interested groups (usually with KG) to inform potential participants about the project, answer their questions and invite them to take part (see the information sheet in Appendix 5).

3. If the group, or a number of the group’s members, were interested in taking part, a date was set for KG and Innovations in Dementia to return to conduct a focus group. Consent was taken at this stage (see below).

4. After the focus group, a further visit was planned to feedback to participants (and group facilitators).

Details of the people with dementia that took part are included in Table 13 (see Appendix 1, where other tables for this chapter can be found). In total, 25 participants with dementia (15 female and 10 male) took part across four groups.

Consent

Only people with the capacity to give informed consent were included in this stage of the project, as participation in a focus group requires an understanding of the concepts under discussion and the ability to express views. Group facilitators discussed capacity before the first visit from Innovations in Dementia to gauge whether or not at least some of the group members would have the capacity to consent. At the first visit, Innovations in Dementia and/or KG talked through the project information sheet with the group and answered any questions, and then revisited the information sheets with each individual on the day of the focus group before consent was given.

The use of written consent forms (see Appendix 5) was not straightforward, and in some cases presented an active barrier to participation. People with dementia who understood the premise of the research and expressed (verbally) that they were happy to take part sometimes struggled when presented with a lengthy consent form with a number of separate statements for them to agree to before signing. These statements are a SCREC requirement and must be included on all participant consent forms. However, asking people to agree or disagree to each of these and then sign, after they had already discussed each point (while talking through the information sheet) and indicated verbally an intention to proceed, was burdensome and fatigued some before the focus groups had even begun. Moreover, some people with dementia found it physically difficult to hold a pen and sign their names. Signing a document may also feel like a significant act for a person who is losing control over aspects of their life and we became concerned that this might be causing unnecessary worry for some of our participants. We decided therefore to build the facility for verbal consent with a witness into future consent processes with people with dementia, and received approval from SCREC to use these in the final stage of the project (see Chapter 6).

Format of the sessions and topics covered

We had planned only to include people with dementia with experience of LSW in the focus groups. However, after further consideration we agreed to include people with a range of experience of LSW. This recognised that some people with dementia may have actively chosen not to undertake LSW, while others might not have come across the idea but still have views on recording and sharing aspects of their life. To understand good practice we needed to hear from the full range of potential LSW participants, not just from those who had successfully engaged in it.

To ensure that all participants understood what we meant by LSW, we produced four specimen life stories and took these to each session to share with the group. These were:

• a structured life story book, based on a template

• an unstructured life story folder, with photographs and text

• a life story box with objects, photographs and documents

• a digital life story accessible via a touchscreen tablet.

On the advice of our advisory group, we also encouraged participants to bring in their own life story products or an object or photograph that they would be happy to share with the group. The focus groups then began with a discussion of these specific products and artefacts before moving on to more general topics such as the outcomes of recording and sharing life stories and the best ways to do this (see Appendix 6 for the topic guide). Sessions were co-facilitated by Innovations in Dementia and KG, with the existing group facilitators on hand in case participants required support from a familiar worker.

Recruitment

Carers were recruited through the Uniting Carers e-network as follows:

1. Invitations were circulated to the e-network of carers of people with dementia.

2. Interested carers contacted Uniting Carers who gave full information (see participant information sheet in Appendix 5) and answered carers’ questions.

3. Dates for focus groups were confirmed by telephone or e-mail and participants confirmed attendance.

4. KG and Uniting Carers co-facilitated three focus groups. Consent was taken at this stage.

5. Feedback on the overall findings from this phase of the research was circulated to participants by e-mail and comments were requested.

Table 14 (see Appendix 1) gives details of the focus groups held and the types of carers who took part. In total, 21 carers (16 female and 5 male) took part across three groups.

Consent

Written consent was given on the day of the focus groups (see Appendix 5). All participants received the information sheet in advance and again on the day of the focus group and had the opportunity to ask questions.

Recruitment

Professionals were recruited as follows:

1. Invitations were circulated to a number of e-networks including the Life Story Network, local DeNDRoNs and a dementia-training network.

2. Interested professionals contacted KG, who gave full information (see participant information sheet in Appendix 5) and answered questions.

3. Dates for focus groups were confirmed and participants confirmed attendance.

4. Three focus groups were facilitated by the research team. Consent was taken at this stage.

5. Feedback on the overall findings from this phase of the research was circulated to participants by e-mail and comments were requested.

Table 15 (see Appendix 1) gives details of the focus groups held and the types of professionals who took part. In total, 27 participants (26 female and 1 male) took part across three groups.

Consent

Written consent was given on the day of the focus groups (see Appendix 5). All participants had been given the information sheet in advance but received it again on the day of the focus group and had the opportunity to ask questions.

Format of the sessions and topics covered

As well as the topics addressed with all groups, professionals were also asked about drivers of resource use in dementia care settings and what changes, if any, they would expect to see in these if LSW was carried out (see Appendix 6 for the topic guide). This material was used specifically to inform data collection in the feasibility study (see Chapter 6).

Outcomes for people with dementia

It was clear that some people with dementia gained immense pleasure from talking about their memories. Reminiscence activities have been used in dementia care for some time8 and LSW can involve a specific form of reminiscence: that which focuses on the individual’s life history. In each focus group with people with dementia some participants told us they found it enjoyable to talk about memories. More specific to LSW, some felt that it was important to record memories, so that they had them to look back on and could share them with others:

What are you going to use them [the life story books] for?

[Pause] For memories.

For yourself?

For myself, and the family, they’ve all seen them. It’s – I think it’s nice just to have a look and think – I used to look like that once!

However, the benefits of this tool for looking back, highlighting and sharing important memories seemed to go further than simply the ‘comfort in recall’ (as one participant put it).

We asked participants in the dementia groups to bring in objects or photographs of something from their lives to act as a starting point for the discussions. Most brought things that reminded them of people or achievements that they were proud of, such as their children’s certificates or photographs from their wedding day. Highlighting and celebrating past achievements was clearly a priority and one that appeared to bring much pleasure. Moreover, each object or photograph came with a story.

The literature suggests that storytelling may be an important tool for all of us, allowing us to communicate and, in the process, reaffirm our identity. 9,112 Through storytelling we have the opportunity to review, construct and reconstruct our own identities, both in the eyes of other people and for ourselves. Yet people with dementia may find themselves increasingly left out of such conversations and storytelling,113 as illustrated here:

So, do you talk about your life much?

No, not really. Not now. Used to at one time . . . I didn’t mind. I haven’t done for a long time now.

And why’s that?

‘Cause nobody asked.

Life story work might, therefore, offer a valuable opportunity for people with dementia to continue to make and remake their identity, helping them to communicate aspects of themselves. This benefit may be of particular significance to people with impaired speech, as life story products can give visual hooks from which to hang verbal and non-verbal communication. Another participant had limited speech but was able to indicate to the group that she had a book of photographs that she valued, as it helped her to communicate with her friends and family. However, she did not see this as something to share with a wider range of people (such as care home or hospital staff): it was a private book which she used to help communicate with those close to her.

Some participants were clear that the primary purpose of LSW for them was to review their past in order to help them have a better idea of who they are today and who they might be in the future:

. . . in writing this, I can’t say that I’m writing it for posterity or for my children . . . But it is important to me . . . because I’ve never really looked back at the whole of my life at any stage, and taken stock of what I’ve done and what I aim to do, . . . it does make you think about your life . . .

DF3R3

In this way, LSW can cross over into life review;114 indeed, life review and LSW are sometimes combined, with the suggestion that making a book might help sustain the benefits of life review. 66,115 Moreover, some of the professionals we spoke to suggested that simply listening to people and validating their feelings could potentially resolve issues that were bothering a person.

Finally, in addition to celebrating past achievements and helping people to understand or reassess who they are today in the context of their histories, LSW was seen as providing an opportunity for people with dementia to achieve something today. Some of the people with dementia we spoke to were clearly very proud of the life story books they had made, seeing the process not only as an enjoyable activity but as a personal challenge they were pleased to be able to meet.

Table 2 summarises the outcomes identified for individuals with dementia. All of these potential immediate outcomes may have the potential to feed into a larger outcome, that of improved QoL, which we have added here as an hypothesised outcome.

Interpersonal relationships

Life story work tends to be a shared activity, and a number of potential outcomes were identified that went beyond the individual. Both family carers and staff suggested that LSW could bring people with dementia and others (extended family, other residents in care homes or those attending social clubs, as well as staff in these settings) together through the identification of common ground and interests. Some of the participants with dementia (although by no means all) said that they would be interested to see other people’s life stories, and both carers and staff recounted examples of life stories acting as a catalyst for relationship building.

Improved understanding and the establishment of common ground may also be important to family carers themselves seeking to connect, or reconnect, with their loved ones, as one carer explained: ‘I find it comforting, in a way, that we can still have some things in common . . .’ (CF2R7). In some cases, engaging in LSW could lead to family members learning things about their loved ones that they never knew before and found interesting or were proud of:

By . . . producing this album, I was getting to know her even more, and admiring her more as a person. So, for me, I think it probably had more beneficial – [laughs] and more impact for me than my mum.

CF1R3, son of person with dementia

In other cases, however, families learnt of things that appeared to have been concealed for good reason and there was concern about how to deal with this information.

For some, LSW provided an opportunity for an enjoyable shared activity, and a wider range of topics for conversation. Indeed, there was a suggestion from the professional focus groups that LSW might attract a wider range of visitors to care homes and hospital wards by providing new triggers for conversation. For some, however, the opportunities for conversation sparked by a life story were limited by the severity of the dementia and associated communication impairments. Nevertheless, there was a suggestion that LSW might still provide a ‘way in’ for the families and carers of people with limited speech:

And that’s when a life story book’s quite good, because they can go in. There’s no speech, but they can look at the photographs . . . I think that life story books can bring everybody in, and the children, and when she saw their faces, even though she didn’t know their names, she’d go like that and smile.

CF3R3

This could have benefits both for the person with dementia and for those around them. Even in situations when the value for the person with dementia was questioned, several family carers said that they themselves valued the life story products and the memories that the objects and images brought back.

We saw earlier that LSW might help people with dementia to express aspects of their identity to others. There was a suggestion in the focus groups that the benefits of this could go beyond the individual, challenging assumptions by helping others to understand better the person with dementia. As one woman with dementia put it:

. . . the younger ones today ought to realise it, even though I’m 82, I still feel just like I did feel when, you know? . . . even though you’re 83, you can still be falling in love . . . you don’t have to be all glamorous and young.

DF1R3

Improved understanding could have a number of benefits. Feeling understood, in itself, may be important to an individual’s well-being. In addition to this, improved understanding may alter other people’s attitudes and responses towards people with dementia. Tom Kitwood116,117 highlighted the ways in which the actions and responses of caregivers could affect the well-being of people with dementia. It was suggested in the focus groups that staff may form negative perceptions of patients or residents from reading their medical histories before meeting them, which could in turn affect how they acted towards them. Learning about people’s life stories might help to redress the balance, as this hospital occupational therapist (OT) explained:

. . . staff receive a report about who’s coming in. ‘Oh, we’ve got somebody coming in that’s done this, this, this, and this,’ and it immediately triggers those . . . negative attitudes. But . . . when people have arrived with a life story . . . once people have had a chance to look at it . . . the attitudes change completely.

PF1R1

A summary of the potential interpersonal outcomes identified in this section is given in Table 3. As with the individual outcomes, the result of any of these outcomes might be an improvement in QoL. However, these outcomes might lead to improved QoL not only for the person with dementia, but also for family carers and others involved such as wider family and friends.

Outcomes for care

We saw above that LSW can provide a hook for conversations and non-verbal interaction, helping to identify common ground and build relationships. Participants in the professional and family carer focus groups, in particular, suggested that this outcome could have the additional effect of influencing the way care staff viewed the people they worked with, which in turn could improve the care they provide. As an OT explained:

I think that process of helping people recognise the common ground . . . helps humanise people again.

PF3R10

It could be argued that people receiving care should not have to be ‘humanised’; however, we know that receiving care can have a dehumanising effect and that people with dementia in particular can too often be viewed in terms of their disease first and their personhood second. 3 LSW was therefore seen by professionals and carers as a tool with the potential to remind care staff that the people they care for are people first (with equally important hopes, fears, achievements and relationships as those of the care staff themselves) and the recipients of care a distant second.

‘Seeing the person’ is an outcome in itself, implying respect and the recognition of shared humanity. In addition, it could help to personalise care, as this day centre manager suggested:

LSW in itself is maybe the way to get to that person-centred care, because by . . . helping people see the person as an individual, you can move forward to then working with them as an individual . . .

PF1R3

Life story work should tell us not only what a person has done and achieved, but what they would like to do, what they value, and how they would like to spend their time and who with. Such information is crucial to person-centred care planning. It may also shed light on the reasons why a person with dementia reacts negatively to a certain situation or approach to care. There were numerous examples given in the focus groups of people acting in ways that confused or challenged care staff until they discovered, often through LSW, that there was a perfectly rational explanation for that behaviour:

. . . one of the key factors is what somebody did for a living, what their daily routine was, you know. ‘Go on, Fred, get back to bed, it’s only 4 o’clock in the morning.’ But if you were a bus driver . . . or a postman, you were up at that time and those are the memories that stay . . . it’s about understanding the person, and then you can understand some of the behaviour, and it doesn’t challenge then.

PF1R8

Once something is understandable, it may seem less problematic. However, information pertinent to problem solving will not always be included in a life story product, particularly if the LSW is led by the person with dementia him- or herself rather than by a member of staff or carer (see Challenges and good practice, What is it for and how much control will I have?).

Even where it is difficult to understand or manage a person’s actions, LSW may still be a useful tool in helping to put people at ease without recourse to medication:

He’s rattling the doors, trying to get out, and you start talking about all his achievements, ‘cause he’s so proud of all his achievements through his life. And immediately, he comes down and PRN [pro re nata] medication [antipsychotic medication issued as and when required] isn’t needed . . .

PF1R1

Similarly, some family members found that LSW helped to calm or orientate the person they cared for:

I think it is useful for my husband, although we don’t know how much he recognises . . . but it’s about the familiarity of it . . . So it is all part of that comforting, assuring familiarity of having these things . . .

CF3R4

This carer went on to explain, further, that, although she could not know for certain whether or not the photographs of their life together were meaningful to her husband, they certainly were meaningful to her.

One effect of staff getting to know and understanding the people they work with better could be that they themselves gain more satisfaction from their work. If LSW sheds light on the ways in which a staff member can meet the needs or desires of a person better, then it may be easier for them to deliver care in a way that elicits positive feedback for them. This in turn may motivate care staff to find new ways to further the person’s well-being, as this extract indicates:

. . . the staff do get very excited when they learn new things about people and very encouraged, and, you know, it’s good for them, too.

And they start connecting, as well, and go . . .

‘Oh, I’ll have to bring that in because I was a horse rider and she was a horse rider.’

Yeah.

‘So I’ll bring in my helmet’ and finding things in common, that’s really important . . .

This suggests that measuring job satisfaction or staff motivation could be one way to assess the effectiveness of LSW.

A final area of potential outcome related to people moving from one care setting to another. We heard above how LSW could challenge the negative assumptions of staff by revealing the person behind the dementia. This effect was felt to come from seeing not only who the person was, but also who they still were and what they could still achieve. In one hospital ward, for example, they took photographs of patients taking part in activities and sent these with the person when they were discharged:

. . . those photographs went in the life story book [made on the ward and passed on] to the residential home or the nursing home. So the care staff didn’t just see Joe Bloggs who needs X, Y, and Z, but Joe Bloggs that actually can still do a bit of this and can still do a little bit of that . . .

PF2R2

Table 4 summarises the outcomes for care identified in this section, including outcomes for care staff.

Theory of change

As we have seen, LSW may have a variety of outcomes, arrived at via numerous different routes or mechanisms. Figure 8 shows the various mechanisms, immediate outcomes and broader consequences (overall outcomes) identified through our focus groups.

FIGURE 8.

Mechanisms and outcomes of LSW.

Not everyone wants to engage in life story work

First, not everyone thinks LSW is for them. Some people simply did not see the point:

I tend to just, sort of, say, ‘Right, this is done’ and it’s done, and then move onto the next thing, rather than talking about it a lot.

DF3R4

Others actively rejected the notion that reminiscence was a desirable thing: ‘. . . you say, “Mind your own bloody business” . . . Sometimes you want to forget’ (DF4R2). Similarly, some carers confirmed that people they cared for had not wanted to participate in LSW, with responses ranging from indifference to considerable distress:

. . . my dad’s not that interested in that sort of thing . . .

CF2R4 (daughter)

He’d rather be on his allotment.

CF2R2 (granddaughter)

. . . a couple of times, people have tried to do LSW with him . . . but it wasn’t very successful . . . he did ancestral research and he collected old postcards of Dover and so, everyone thought, oh, this is great, he – but he didn’t want to go back. And very, very early on, he really didn’t like looking at photographs, and particularly photographs of people who were dead . . . a few months on, we had another helper from the Mental Health Team who wanted to have another crack at this, but it was just as bad.

CF2R6 (wife)

Our advisers with dementia had suggested that some people might be reluctant to embark on LSW because of its focus on the past at the expense of the present and future. They were keen for people not to be ‘set in stone’ by a life story document. Some focus groups participants also flagged this up as a risk. Professionals noted that a person may actively reject an activity which they used to enjoy because they are no longer able to engage in it proficiently. There was general agreement that it would be good practice to update life story products regularly and that the life story should not be given precedence over the current expressed preferences of an individual. However, in practice there were mixed views on the practicalities of this: who would update it/would there be time? One suggestion was to combine LSW with daily reporting, as this manager of a community day service had done:

. . . [the life story includes] the important information that we need to report [such as medication use], but it also includes photographs of where we’ve taken the person. And we work with the person to compile this reporting, so they’re involved and they don’t feel like . . . ‘What’s she saying about me?’. . . we encourage them [families] to include information in the book, as well . . . we use a lot of scrapbooking techniques . . .

PF2R8

Upsetting topics and the need for staff training

Professionals and carers pointed out that families might not want to engage in LSW because it could highlight the losses that they and the people they care for had experienced. Realising that a parent no longer recognises what were once favourite holiday destinations, for example, or even members of their own family, is distressing. By contrast, this was not a strong theme among the people with dementia. However, this could be explained by a lack of insight or a perfectly understandable reluctance to imagine what it may feel like to struggle with greater memory loss as dementia progresses.

Even where differences in perception are not the issue, LSW still has the potential to cause upset, simply because delving back through people’s personal histories can be emotional and there is always the possibility of stumbling on upsetting topics. Suggestions were made for avoiding such topics, but some argued that discussing emotional subjects is not necessarily a bad thing:

But, you know, for that person to have the opportunity to have their feelings validated and acknowledged, and even if it means having to . . .

Having to cry and be upset.

. . . have those feelings again, can still be very . . .

Positive.

. . . beneficial to them.

There were mixed views in the focus groups with people with dementia about whether or not they would choose to include upsetting memories in their life stories but our advisers with dementia reiterated that those wanting to discuss difficult issues should be supported to do so. However, staff facilitating LSW are unlikely to be psychological therapists and should not be expected to handle emotional issues unsupported. Training is essential, but support should also be on hand to help handle sensitive information (including potential safeguarding disclosures) and to judge when an onward referral is required:

. . . closing the can of worms . . . for a Level 2 care staff, that could be an incredibly difficult feat to achieve . . . it’s about leadership . . . and training . . . to make sure that staff feel that they’re empowered and they’ve got the skills to be able to do it.

PF3R6

What is it for and how much control will I have?

Analysis of the outcomes that professionals, carers and people with dementia themselves hoped for indicates that people with dementia may have very different motives for embarking on LSW from, in particular, the professionals who work with them.

Professionals were concerned about recognising personhood and tailoring care to meet the needs of individuals. They also saw great potential for LSW to help ‘problem solve’, for example to help to understand and deal with behaviour that could be challenging. People with dementia, on the other hand, undertook LSW for personal reasons: to preserve memories, to share and enjoy with friends and family, to celebrate achievements or simply to prove to themselves that they could still do something like this. Even when asked directly if it might be useful for life story information to be shared more widely with care staff and professionals, there was a feeling from most that, while they had ‘nothing to hide’, this was not a priority for them personally:

I might do one for myself, just for me, my life . . .

And would you show it to people?

Yes, if they asked. Yeah, you know, I wouldn’t go out and say, ‘Look, look at this, look at this’. But if someone said, ‘Oh, what are you doing?’ I’d quite happily show it when I’d finished with it.

If you were taking a book with you about you and your life into the respite home so that they knew a bit about you, what would you put in it?

Everything about myself I suppose, and so, I left school and so forth, up to the present time. I’ve got nothing to fear. I’ve got nothing to hide.

But would you want them to know certain things about you?

Pass.

Most of the people with dementia felt that some support from professionals to help make a life story could be helpful, especially for people who did not have family carers. However, they seemed unaware of the possible motives professionals might have for encouraging a person with dementia to do this. This is important, as people may choose to put very different information in a life story for their own personal use from the information they would put in something to be used by other people. Moreover, some people felt strongly that a life story should be ‘a private thing’ (DF2R4), or at least that they should be present when other people looked at it. Good ethical practice, therefore, means that professionals should make explicit the possible uses of the life story at the start of the process and check whether or not and with whom the person is happy to share it.

Similarly, professionals need to be aware that people select what information to share based on the image of themselves they would like to project or remember. Thus, the life story product may not tell staff everything they need to know in order to solve a problem or understand behaviour. One of our focus group participants, for example, spoke at length about some difficult times in her life before revealing that she had included none of these events in her life story book:

None of that’s in my book.

What’s in your book?

. . . this book, it tells all the nice bits, but [pause] I don’t know why I did that. But that [referring to the story she had told] is the truth on it, and this [referring to the book] is also the truth . . . I suppose it’s part of me, so I should have put it in, but at the time I was doing this, I just wanted to look back at pictures, and I would still only have pictures of the nice things.

Confidentiality and data protection were common topics in our focus groups. Some felt so strongly about data protection that life story books were locked away in staff offices: ‘. . . it boils down to confidentiality. We can’t have them lying around in the lounge in case another patient picks them up or a relative sees them’ (PF2R2). However, others argued this undermined the ownership of the life story by those whose life it was about and would make the achievement of certain individual and interpersonal benefits less likely. Instead, they suggested that consent be obtained (ideally from the individual, but if they lacked capacity then from a family member or other consultee) for information to be shared and that this should specify who was allowed to see what.

One suggestion to help care staff understand how it might feel for life story information to be shared with others (or, conversely, how it might feel to make a life story and then not have easy access to it) was to encourage staff to make their own life story products. Some participants felt that this had the potential to create greater equality between staff and service users and build relationships. Rather than information flowing in only one direction, people with dementia and their families could learn about the staff working with them. This would clearly be important to some people with dementia, as was illustrated by the participant who said, when we asked her if she would like staff to know more about her, ‘I would like to know who you are [referring to the staff in the room]’ (DF2R4).

Is it ever ‘too late’?

Carers and professionals discussed a range of approaches to making and using life stories. The extent to which the people they cared for were involved in the process depended to a large degree on the severity of their symptoms, which ranged from mild to severe. The people with dementia we spoke to, on the other hand, all had capacity to consent to take part in the focus groups and, as such, tended to have only mild to moderate symptoms. This group were, therefore, all able to take an active role in making a life story (usually with some degree of support) and most identified personal motives for doing so (see Challenges and good practice, What is it for and how much control will I have?).

The experiences of family carers, many of whom had cared for a person until his or her symptoms had become very severe, confirmed that a person’s ability to take an active role in LSW could reduce over time. As a result, the motivations for doing LSW might change, along with the approaches that were most likely to give benefit. This carer, for example, initiated LSW with his mother to help her maintain her writing skills:

. . . I did it initially for my mother to have practice in writing. The story was almost secondary . . . there was a lot of confusion there. So I dictated it . . . [But] there were things that she did contribute . . .

CF2R1

As her dementia progressed, the mother’s ability to participate in making the life story deteriorated, but she did still seem to benefit from being reminded of its content:

. . . this angel from Crossroads charity . . . she took the book, took it out and read everything to my mother and my mother does respond . . . I think what she remembers is a nice feeling.

CF2R1

The outcomes of LSW in the later stages of dementia may be different from those achievable in earlier stages (more about stimulating a ‘nice feeling’ than offering people something they can actively engage in to review their life and share their memories), but such outcomes are no less important. Professionals agreed that LSW was best started early, when people are still able to express their views and take a lead in the process. However, they also felt that there could be numerous benefits (not only around problem solving, but also by raising opportunities to invoke a ‘nice feeling’) throughout the dementia journey and that it was thus never too late to get started.

It is what you do with it that counts

Family carers felt that the outcomes of LSW depended largely on whether or not care staff took on board and used life story information when planning and delivering care. Unfortunately, many life story carers were doubtful that this happened and several gave examples of lovingly crafted life story documents packed with useful information that were ignored in care settings:

. . . I put it in her bedroom, and I just, in my naivety, thought that they would share it . . . She was given dreadful antipsychotic drugs to keep her sedated, and the input from the care home was, ‘She has a condition,’ and they ignored what I’d put together . . . They didn’t use it at all.

CF3R7

Well, I don’t know if, as a carer, I, sort of, invested too much in the life story thing, thinking that the people who were helping me care for [husband] . . . would pick these things out of this, which they haven’t done, because they haven’t had time . . .

CF2R6

It is not enough simply to produce a life story and expect it to make a difference, if the route to improvement is through the actions of busy staff who may not even realise that the life story product exists.

Some participants suggested making different versions for different uses or audiences: flash cards, a collage or a one-page summary of key information that would be easily accessible to staff, for example, and a more comprehensive book or digital product that the person with dementia might enjoy looking through, sharing and adding to him- or herself. The former might also be useful for transitions, for example if a person is admitted to hospital. There are several short templates available which have been designed specifically for this purpose. However, it is important to recognise that a one-page summary or a template detailing only key facts is not the same as a comprehensive life story and is unlikely to be something owned or designed by the person with dementia him- or herself.

A good practice approach to LSW would be tailored to the individual preferences of the person with dementia. Some participants were intrigued by the digital life story we had produced and felt that this was something they would like to pursue, whereas others were put off by the technology and preferred formats they were familiar with. Few of the participants with dementia who were interested in making a life story felt that a short written summary could take the place of something more comprehensive that they themselves had created.

Organisational barriers to achieving outcomes

There was consensus among the professionals that LSW could benefit people with dementia and those who cared for them. However, they identified barriers to achieving benefits, many of which were organisational. The most common barrier discussed was lack of time, which professionals in all groups said posed a problem, if not for them then for their colleagues.

Lack of time seemed to be linked to low prioritisation, both by care staff and by their managers, so that those who viewed LSW as an optional extra struggled to find time for it once all the ‘essential’ work was complete:

. . . we work with an excellent team . . . But they’re already overwhelmed with huge amounts of paperwork and that’s where . . . we’re struggling to engage people . . . it’s another job, another thing to do . . .

PF3R3 (OT with community team)

Even when staff recognised that an investment of time in LSW could lead to benefits in the end, they felt pitted against a system that prioritised short-term targets over such longer-term gains:

We’ve got incredibly strong targets at the moment, which is having a heavy impact on our therapeutic work with the patients, because it’s more important that people are seen within a certain length of time . . .

PF1R1 (OT on acute ward)

In order to be successful, participants felt that LSW needed to be an integrated part of care rather than ‘just another task’. Training was important but, crucially, needed to be coupled with a supportive management and organisational culture:

. . . staff have been very good as well, taken it on board. I mean, the luxury I have is that when we’re in a new care home, it becomes part of what we are and what we’re doing, so they’re coming into that. . . . So, you know, they take the training very well and have done some fantastic work.

PF3R6 (care home manager)

Another factor that influenced the successful take-up of LSW by staff was their perception of its purpose: was the aim to make a useful product, or was it the process of collecting and recording information that helped build relationships and inform care? Professionals reported colleagues’ concerns that they did not have time to produce a glossy life story product. However, they themselves felt that collecting information and learning about the person behind the diagnosis was the most meaningful part of LSW, and argued that this could be undertaken concurrently with routine care (e.g. chatting to someone about their life while helping them dress). Nevertheless, focusing solely on the process could raise problems: if information is collected but never recorded or shared, how can it be used to improve care; and without a product to look through, will wider interpersonal benefits be realised?

An alternative solution to the problem of limited time was to encourage family carers to put life story documents together, which could then be used by care staff, wider family and people with dementia themselves. However, in this case staff would not be actively engaged in the collection of information from people with dementia, which was felt to be the most meaningful part of the process.

The focus groups arrived at no definitive solutions to these problems. However, we continued to grapple with them as a research team during the feasibility study, in which we observed different theory of change approaches to solving this dilemma (see Chapter 6).

Sampling

Five parts of the health and social care pathway were the sampling frame for the survey: memory assessment services (MASs), inpatient dementia assessment services (IPAs), community dementia support services (CDSs), generalist long-term care homes and dementia-specialist long-term care homes (SCHs). Given the different numbers of each of these types of services, we planned to use proportionate sampling to generate 100 services in each category.

We explored a range of sources of national information about services to identify the best sampling frames for the five categories (see Appendix 1, Table 16). It soon became clear that we could not easily judge whether or not identified organisations had the services we were interested in, before making direct contact with them. We therefore increased the initial sample size for each to 150. For some categories, there were fewer than 150 identified services and so we took a 100% sample for these. Table 16 (see Appendix 1) shows how we generated the final sample and the stages of personal contact and filtering required.

We planned an electronic survey, and so we needed an e-mail contact for each service. We contacted all of them to identify the person best placed to complete the questionnaire. In some cases, organisations were unable or unwilling to provide an e-mail contact. We had a final sample of 567 services to which we could send the electronic survey.

Developing the questionnaire

We established benchmarks for good practice in LSW based on findings from stage 1 (see Chapters 2 and 3). This generated the domains to be covered in the questionnaire: knowledge and use of LSW; timing; type of records used; one-to-one or group work; people involved in LSW; use of LSW in the service; types of information included and excluded; temporal focus; access to the life story by different people; LSW policies and practice in the organisation; resources to support LSW; and the benefits and challenges of LSW. The questionnaire also asked for information about the service and basic sociodemographic information about the respondent.

Wherever possible, the question wording was the same as or as close as possible to that already used and tested in the questionnaire for carers (see Survey of carers of people with dementia).

The final draft was tested repeatedly within the research team and pre-piloted with members of the project advisory group. For final wording of the questionnaire, see Appendix 8.

Distributing the questionnaire

The link to the survey was e-mailed to the 567 service contacts in the first week of February 2014, with a message explaining the survey’s purpose and how to contact the research team.

Mailing to the NHS-based organisations was problematic and caused significant delay to the distribution, with the e-mails to NHS services not finally sent until mid-March 2014.

Challenges of using an electronic survey

Qualtrics (version 2013, Provo, UT, USA) is a high-quality, web-based service, with EU-based servers, making it ideal for designing, hosting and distributing research questionnaires. However, as well as the distribution problems, other challenges arose.

First, despite first contact with organisations to obtain e-mail addresses, some participants were puzzled about why they had received the survey link or how we had obtained their contact details. We sent a further e-mail explaining how we had identified them. If they responded that someone else was a more appropriate recipient, we reissued the survey to that other person.

Second, although most NHS staff have direct access to computers, this is rarely the case in social care settings, and particularly within care homes. A single e-mail address is often used for the whole care home, making it difficult to target the person who could respond to the questionnaire.

Third, e-mail addresses given were often inaccurate and bounced, requiring further personal contact with the organisation. Even after such contact, e-mail addresses were not always accurate.

Fourth, social care organisations can change significantly over short periods of time, which meant that details we were given in December 2013, when contacting the organisations personally, were no longer accurate in February 2014. Again, we used personal follow-up to deal with this. This revealed organisations that had changed e-mail provider, had closed or were no longer contracted to provide relevant dementia services, or where the nominated member of staff no longer worked there.

Response rate

Several NHS services had multiple sites, all doing LSW. In some, the service returned a questionnaire for each. In others they returned a single questionnaire but informed us that the answers applied to all the sites, in which case we replicated the responses given to all the sites. This increased the number of ‘returned’ questionnaires by eight.

Given the technical challenges of getting the survey to NHS organisations and the structural challenges of systems in flux, we adopted a rigorous approach to follow-up in order to achieve the best response rate we could. Even so, the response rates for CDSs (52%) and generalist long-term care homes (32%) were not what we would have wished. However, we achieved good response rates from the MASs (64%), IPAs (70%) and SCHs (61%) (see Appendix 1, Table 17).

How many services are doing life story work?

The number of respondents who had heard of LSW was highest in IPAs (100%) and MASs (97%), followed by SCHs (91%), generalist long-term care homes (82%) and CDSs (72%).

Our sampling strategy allowed us to estimate the numbers of all services that are currently carrying out LSW in England. In doing this, we made the conservative assumption that no non-respondents did LSW. We also assumed that respondents who had never heard of LSW were also not doing it. We then estimated the minimum extent of LSW across our chosen services (see Appendix 1, Table 18). This suggested that perhaps two-thirds of IPAs and just under half of SCHs offer LSW. Under one-third of MASs, just over one-fifth of generalist long-term care homes, and slightly more than one-tenth of CDSs may do LSW.

The remaining analysis is confined to the 189 services that currently did LSW, excluding those who referred people elsewhere for LSW.

How is life story work done?

How is the life story used?

We asked respondents both to select as many options as they wished about use of the life story in their care setting and which they felt was most important (see Appendix 1, Table 20).

Responses varied by type of service. MASs (79%) and inpatient settings (78%) were somewhat less likely than SCHs and generalist long-term care homes (both 90%) and CDSs (93%) to choose helping the person to remember important parts of their lives. By contrast, SCHs were most likely to choose helping to soothe or calm the person (85%), followed by IPAs (78%), generalist long-term care homes (77%), CDSs (73%) and MASs (61%). This difference seems likely to reflect the different stages of the dementia journey that predominate in these different settings.

Again, perhaps reflecting the nature of their work with people with dementia, IPAs (82%) and MASs (79%) were more likely than generalist long-term care homes (67%), SCHs (59%) or CDSs (47%) to say that they used the life story so that health and social care staff elsewhere could provide better care. This difference reached statistical significance (χ² = 11.79, df = 4; p = 0.019).

Although the option of using the life story to help staff to see the person behind the dementia was a common choice, MASs were less likely than other services to choose this option (χ² = 9.613, df = 4; p = 0.047).

When it came to choosing the most important use of the life story, similar differences between the services were also evident (see Appendix 1, Table 20). Again, these seem likely to be influenced by the type of people using the services and the nature of the service involvement.

What information is included in the life story?

Respondents were asked whether they always, sometimes or never included particular types of information in the life story.

Tables 21–24 (see Appendix 1) show the answers given across all respondents and whether or not we found significant differences between services.

Leaving things out of the life story

Overall, 61% of respondents said that things were sometimes left out of the life story, with little difference between services; 62% reported that this was because some things were too private to include and 84% reported that some things were too upsetting to include. Other reasons given were related to memory problems (11 of the 32 respondents who gave an additional reason) or to the general difficulty of getting relevant information about the person with dementia (10/32). Again, there was little difference between the services.

We then asked who made the decision to leave things out of the life story. Sixty-eight per cent of those who had said that things were sometimes left out said that the person with dementia made this decision; 90% mentioned carers and 22% mentioned staff.

Services reported significantly different levels of involvement of the person with dementia in the decision [MASs (93%), CDSs (89%), IPAs (71%), generalist long-term care homes (56%) and SCHs (55%); χ² = 10.40, df = 4; p = 0.034]. MASs were least likely to say that family members or others close to the person with dementia made the decision (73%), compared with IPAs (96%), SCHs (94%), generalist long-term care homes (89%) and CDSs (89%). However, this difference did not reach statistical significance, perhaps because numbers were small. Again, these differences may reflect the stage at which services see people with dementia and carry out LSW with them.

Is the life story static or dynamic?

Life story work literature suggests that the life story should be a dynamic product, adding material as new information about the past comes to light and as new memorable events take place.

Overall, 28% of respondents said that items relating to both past and recent events were added to the life story, suggesting that they adopted a dynamic approach to LSW (see Appendix 1, Table 25). IPAs were most likely to say that the life story was a one-off product. Along with MASs, they were also less likely to add recent events, while SCHs were most likely to refer to adding items related to recent events. This difference reached statistical significance and, again, seems likely to reflect the different work different settings would be doing with people with dementia.

Who can look at the life story and who gives permission for this?

Good practice suggests that the life story should be seen, first, as the property of the person with dementia.

Table 26 (see Appendix 1) indicates that ‘ownership’ of the life story by the person with dementia is almost, but not completely, universal. Carers in CDSs and MASs were slightly more likely than carers in other settings to be able look at the life story. The pattern of staff access to the life story was low, with only 24% of all respondents saying that all staff in the service could look at the life story. Differences between the services were very striking and statistically significant, with over two-thirds of IPAs saying that any staff could look at the life story, while no respondent in a generalist long-term care home chose this option. SCH responses were surprisingly low here.

As might be expected, IPAs were more likely to say that staff in other settings could look at the life story; indeed, some respondents in these services added further detail, pointing out that the life story was often specifically intended to accompany the person with dementia to their next, often long-term, care setting. By contrast, MASs and care homes, of whatever sort, were unlikely to suggest that staff in other care settings could look at the life story.

If the life story belongs to the person with dementia, we might expect their permission to be sought before others look at the life story. Further, seeking permission might explain some of differences in the involvement of staff in looking at the life story. We asked respondents directly about whether or not the person with dementia was asked for their permission and in what circumstances this might not happen.

There was substantial and significant variation between settings here (see Appendix 1, Table 27), mostly explained by the extent to which IPAs said that they ‘sometimes’, rather than ‘always’, asked the permission of the person with dementia. This may reflect the acute nature of confusion encountered, by definition, in IPAs. CDSs were most likely to report that they ‘always’ asked permission of the person with dementia.

Who could look at the life story did, indeed, vary according to whether or not the person with dementia was asked for their permission for this. When the person was always asked for their permission, it was less likely that any staff working in the service would be able to look at the life story (15%). By contrast, if the person with dementia was ‘sometimes’ asked to give permission, it was much more likely that any staff would be able to look at the life story (41%). These differences reached statistical significance (χ² = 13.45, df = 2; p = 0.001).

We also asked if carers were asked to give their permission for other people to look at the life story; 54% said that carers were ‘always’ and 29% said that carers were ‘sometimes’ asked for their permission, when they were available to be asked. There were few differences between services in this aspect of LSW practice.

Although two-thirds of respondents said that the person with dementia was always asked for their permission for others to look at their life story, very few (15%) reported that this permission was formally recorded in the life story itself. CDSs (33%) were more likely than MASs (9%), SCHs (13%), IPAs (14%) and generalist care homes (19%) ‘always’ to include such a statement in the life story, but this difference did not reach statistical significance.

Access to the life story

Policies and practices to support life story work

Sample

The Uniting Carers database contained the details of over 700 carers of people with dementia; this included both current and past carers. Uniting Carers regularly communicated with carers in the network via e-mail, and agreed to send an e-mail to members informing them about the survey and providing a link to the questionnaire. It was then up to the carers whether or not to click the link to the survey. A copy of the e-mail is in Appendix 9. Based on previous experience, Uniting Carers expected between 10% and 20% of carers in their network to complete the survey (n = 78–156).

Survey development

Learning from stage 1 and expert advice from coapplicants and our advisory groups informed the content and design of the survey. We also pre-piloted the draft survey face to face with members of our carers’ network of advisers to ensure face validity and comprehensibility.

The questionnaire was designed to take around 15–20 minutes to complete. No explicitly emotive issues were included, and during the pre-piloting stage we asked participants to flag up any aspects of the questionnaire that could unwittingly cause distress. Some people might have been caring for more than one person with dementia or have done so in the past, so we designed the questionnaire to deal with this possibility and asked people to provide answers only about the person who they spent or had spent the most time supporting.

Once the questionnaire was finalised, we entered it into Qualtrics. A text version of the final questionnaire is given in Appendix 9.

Survey administration

The questionnaire front sheet gave more information about the project and stated clearly both that participation was optional and that by completing the questionnaire carers were consenting to the information they provided being used for the research. The research team’s contact details featured prominently so that anyone who wanted to discuss the research before deciding whether or not to take part could do so. The e-mail also made clear that we could provide paper copies of the questionnaire on request.

One reminder e-mail was circulated around the entire network 2 weeks after the first e-mail but no further correspondence was received by non-responders. Those who completed the questionnaire were asked whether or not they would like to receive a summary of the study findings in due course.

We included information about who to contact for further support at the end of the questionnaire, and repeated the research team’s contact details in case respondents had any questions or concerns.

Response rate

One hundred and three carers responded to the survey, and 96 completed enough of the survey to allow analysis of their responses. This response rate is in line with the 10–20% that Uniting Carers had predicted (see Sample). There is no way of knowing whether or not respondents were representative of all carers in the Uniting Carers network, nor would it be sensible to compare those who responded with all carers of people with dementia, even if such comparative data were available.

Of the 96 respondents, 52 were current carers and 44 had cared for someone with dementia in the past. We compared the current and ex-carers across the full range of questions and found very few differences between them. We therefore combined the results for the two groups.

Carer characteristics

Three-quarters of carers were female, and the majority (74%) were aged ≥ 55 years, with 40% aged ≥ 65 years. Most (98%) classified themselves as white; only two carers reported non-white ethnicity. One-third (33%) were caring for a spouse or partner and over half (57%) were caring for a parent or parent-in-law. Men were significantly more likely to be caring for a spouse or partner and women for a parent/in-law or other relation (χ² = 4.41, df = 1; p = .036), while those aged ≥ 65 years were much more likely to be caring for a spouse or partner (χ² = 47.89, df = 3; p< 0.000). As a result of this patterning, male carers among the respondents were significantly more likely than females to be aged ≥ 75 years (χ² = 8.58, df = 3; p = 0.035).

These patterns are all broadly what we might expect to see in a population of carers of people with dementia.

Characteristics of the person with dementia

Sixty-three per cent of the people who were or had been supported by carers were female.

Current carers were most likely to be supporting someone aged ≥ 75 years (69%); 19% were supporting someone aged between 65 and 74 years. Forty-eight per cent reported that the person with dementia’s memory loss had become apparent between 6 and 10 years previously, with 35% reporting that this had happened between 1 and 5 years previously.

We asked those who were no longer carers how long they had cared for the person with dementia; almost two-thirds had done so for ≥ 6 years, and 21% had done so for ≥ 11 years. We also asked ex-carers how old the person with dementia had been when their memory problems had first become apparent. The majority (63%) reported that this had happened when the person was aged ≥ 75 years.

Among current carers, the largest group (44%) were those supporting someone who lived at home with them, followed by those supporting a person with dementia living in a residential or care home (23%) or nursing home (15%).

Knowledge of life story work

Three-quarters of respondents (75%) said that they had heard of LSW, but only 41% (39 carers) reported that the person they supported had ever done LSW. Carers under the age of 65 years were more likely to have heard of LSW (χ² = 9.38, df = 3; p = 0.25) but there were no other obvious relationships between carers’ characteristics and their knowledge of LSW.

The most common source of information for carers about LSW was a voluntary organisation (46%), followed by a health or social care professional (37%). A small proportion had found out about LSW via the internet (13%) or from published material (13%). Some respondents mentioned more than one source of information.

There were no apparent relationships between whether or not LSW had been done and the characteristics of carers or those of the person with dementia.

The 36 carers who said that they had heard of LSW but that the person with dementia had not done it were asked about the reasons for this. The most important reason given (16 carers) was that LSW had never been offered to the person with dementia. Four said that it had been offered but that the person they supported was not interested in doing it and four said that they had not been sure of the benefits of doing LSW or were worried about it raising painful memories for the person they cared for. Four carers also mentioned that by the time they had heard about LSW it was ‘too late’, as the person they cared for had deteriorated too far or had died.

We explained the general principles of LSW in our questionnaire introduction. We therefore asked those who had not previously heard about LSW whether they felt that it might help or could have helped the person they supported; most (13/24) felt unsure about whether or not doing LSW might be of value.

Doing life story work

The remainder of the analysis is based on the 39 carers with experience of LSW and should be read in the light of small numbers.

How is the life story used?

Most carers reported more than one use of the life story; over two-thirds reported five or more uses (see Appendix 1, Table 30).

The final column in Table 30 shows some interesting patterns. Helping the person to remember important parts of their lives was chosen most often (n = 31 carers) but when it came to the most important use, helping health and social care workers to provide better care was chosen most often.

What information is included in the life story?

Different methods of doing LSW and different uses to which the life story is put both influence and are influenced by the information that is included in the life story (see Appendix 1, Table 31). Most of the life stories carers had experienced were based more in ‘facts’ than in ‘feelings’. Thus, most reported that the names of family members and others close to the person with dementia were included, but only one-third said that the reactions of the person to these individuals were in the life story. Similarly, while many life stories included lists and details of important events, dates and so on, a record of the person’s feelings about these was much less common.

Analysis of the clustering of these different types of information showed two fairly distinct models of LSW, each accounting for around half of the responses. One concentrated on the names and descriptions of family members and the other on close people, lists and details of events, and people’s preferences for food and activities. The first model was more likely to include spiritual and care needs, people’s clothing and conversational preferences, and their feelings about family members and events. The second type tended to be more associated with a life story that was in written summary form, which was done in care homes and for which the most important use was helping health and social care workers provide better care.

Leaving things out of the life story

Just under half (n = 18) of the carers said that something had been left out of a life story, the most usual reason being that some things would have been too upsetting (nine carers) or too private (eight carers) to include. Five felt that the life story needed to be positive and, therefore, presumably, some less positive aspects of the person’s life had been excluded.

Carers were more likely to report that they had made the decision to leave something out (14 carers) than that the person with dementia made the decision (six carers). In two cases, the decision had been a joint one. Other family members (three responses) and health or social care workers (one response) were also mentioned as having influenced the exclusion of something from the life story.

Is the life story static or dynamic?

Just over one-third of carers (14) said that the life story was a ‘one-off’, with nothing added to it subsequently. Another one-third (13) said that photos, descriptions or other items about the past had been added to the life story along the way, and 10 said that items related to recent events had been added as they happened.

It was unusual for the life story to include the person’s hopes and views about the future and LSW was dominated by recollection of the past (see Appendix 1, Table 32). Overall, 16 carers reported that the life story was exclusively about the past, containing no information about the person’s current life or about their hopes and views for the future. Life stories that were classified as the second ‘type’ (see above) were more likely to include information about the person’s current life (14/19) than were those classified as the first ‘type’ (8/20) and this difference reached statistical significance (χ² = 4.50, df = 1; p = 0.034). This perhaps reflects the use of this type of life story in care home settings.

Who can look at the life story and who gives permission for this?

The majority of carers said that they and the person with dementia were able to look at the life story (34 in both cases). Family members were next most likely to have access (32 responses). Only 17 carers reported that selected health and social care staff could look at the life story, and 14 that any health or social care staff could look at it.

Eighteen carers reported that the person with dementia had given explicit permission for the life story to be seen by others (or not); eight reported that the person with dementia had not given explicit permission and 11 did not know or could not remember. Rather more carers (27/39) reported that they had given permission. However, the majority of carers said that there was no written statement of permission included in the life story record that allowed others to look at the life story or that they could not remember such a statement.

Access to the life story

Design

We chose a stepped-wedge design to allow us to test the feasibility of not only evaluation but also rolling out the LSW approach to these new care settings. In this design, each setting receives the intervention at some point during the period of the study (ensuring equity), but roll-out is staggered, rendering implementation across multiple sites more straightforward than attempting a simultaneous start. 134

We worked with a single, not-for-profit care home provider that was keen to introduce LSW across its services. The provider selected a purposive sample of six care homes. None of the homes currently practised LSW but all had managers who were disposed to introduce it.

The project was designed so that one care home introduced LSW each month for 6 months, with baseline data collected immediately before implementation and follow-up data collected 1 month, 2 months and 6 months after LSW was due to begin. The first care home entered the study in January 2014 (with training taking place in the previous month) and the following care homes entered at monthly intervals; thus, care home 6 entered the study in June 2014.

Intervention

A training package was designed, informed by the findings on good practice from the development stage of the project (see Chapters 2 and 3). This consisted of:

• a 2-hour training session for care home staff (delivered by the care provider’s dementia care consultant)

• printed guidance and hand-outs on good practice in LSW

• a template, ‘some important things’, to help staff get started (it was emphasised in the training that the template need not be followed – the form LSW takes should be led by the needs and desires of the individual – but it could be used as a starting point).

Sample

Ten residents with dementia or dementia-like symptoms (and their family carer, if they had one) in each of the six care homes were randomly selected and invited to join the study. All staff who undertook the LSW training were also invited to take part.

Design

The stepped-wedge approach was not appropriate in the acute settings, as we were working with three mental health assessment units in which LSW was reported to be a routine part of care for all patients with dementia already. We instead opted for a pre-test post-test design in the acute settings, with a comparison setting providing a control, and collecting data over a 6-month period from baseline. All three wards in the intervention site joined the study in February 2014 and the comparison site joined in April 2014.

Intervention

In the intervention site, a group that included the NHS trust’s clinical lead for psychological therapies for older people had initiated LSW some years previously. In October 2013, we attended the trust’s Service Line Planning Group meeting for older people’s services and agreed with service managers to focus on three short-stay assessment units for older people with mental health problems where LSW (usually in book form) was routinely practised.

In the comparison site, LSW was not practised but the ward manager was keen to introduce it. We agreed that, once the 6-month participant recruitment period was over, the project team would support the ward to access LSW training.

Sample

Ten people with dementia (and their family carer, if they had one) were to be recruited sequentially from each of three inpatient assessment units that practised LSW as or soon after they were admitted and 10 were to be recruited sequentially from each of three comparison sites as or soon after they were admitted. In addition, data were to be collected from a cross-section of staff on the wards at three time points over the 6-month period.

Quantitative data collection

We planned to measure selected outcomes for all participants with dementia and family carers at baseline (for those in the LSW groups, before any LSW had commenced) and then follow them up at 1 month, 2 months and 6 months after baseline, wherever they were then living. We had originally considered training staff on site to use some of the outcome measures, but it soon became clear that this would not be workable without additional funds to backfill staff time. Two researchers in the project team (KG and JB), supported by a research assistant employed on a casual basis (LC) for the care homes study, collected data at all time points.

Innovations in Dementia provided advice on consent and data collection processes with people with dementia, and observed the researchers in action at one care home to ensure that ethical practices were in operation.

We also planned to collect data from participants’ care records about dementia diagnosis and severity at baseline, and on relevant drug use and adverse events for the 3 months prior to entering the study and the final 3 months of follow-up.

Levels of staff burnout, staff assessments of personhood and staff approaches to working with people with dementia were assessed using existing measures. In care homes, consenting staff provided baseline data and were followed up after 1 month, 2 months and 6 months. In the hospitals, cross-sectional data were collected at three time points over the 6-month study period.

Qualitative data collection

We gathered in-depth, qualitative information about experiences of LSW and the processes involved in its evaluation from carers, staff and (where possible) participants with dementia. The aims here were to:

• develop a qualitative understanding of causal links between LSW and the outcomes measured in the quantitative element of the study

• explore the acceptability of the processes involved in evaluation

• understand any implementation issues, including barriers and facilitators to LSW, and any unanticipated consequences (including how these could be managed in future).

We conducted a mix of face-to-face and telephone interviews with family carers (guided by their stated preferences) and guided conversations with participants with dementia who were able to communicate verbally (and were happy to do so). We also conducted focus groups with staff, covering both their views on the use of LSW and their experiences of taking part in the study.

Ethical approach

Research ethics approval for the feasibility study stage of the project (including the qualitative work discussed in Chapter 9) was obtained from the NIHR SCREC on 28 November 2013 for people with the capacity to consent to take part, and on 2 December 2013 for those without the capacity to consent.

Recruitment of care home study sites

As planned, we recruited six care homes to the study through the care home provider already partnered with the project. Selection of sites was purposive, to provide a range of research settings (some more and some less research ready) all within 2.5 hours’ travel of York. Recruitment was initially straightforward: the coapplicant on the project made the initial approach to regional managers, who in turn approached individual care home managers. In April 2013, when the Social Policy Research Unit held a meeting for the care homes for them to learn more about the project and contribute to the design of the study, all six sites were enthusiastic about taking part. However, by the time fieldwork was due to commence, managers had changed in two of the six sites and a further two sites had withdrawn, citing staffing and capacity issues. Both of the sites that withdrew were replaced before fieldwork started (CH1 and CH6), using the same purposive sampling criteria.

The researchers visited each care home in advance to familiarise themselves with the setting, to ensure that managers were still committed to the research and to build rapport with staff. Nevertheless, the change in management at two sites did appear to have an adverse effect, as both seemed less engaged in the research for the remainder of the study period. Indeed, continuity continued to be an issue at both of these sites throughout the fieldwork, with the new care manager in one home leaving part way into the study and both the care manager and the business manager leaving the other before final follow-up was carried out.

Table 35 in Appendix 1 summarises the characteristics of the six care homes that were finally included.

The ethical issues regarding the assessment of people for dementia in a research project, when no formal diagnosis exists, are considerable. This is particularly the case in relation to people who live in residential care homes where diagnosis may have considerable financial consequences for those who are self-payers. We also know that diagnosis rates are below 50% in England. 135 However, even when a formal diagnosis had been made for a care home resident, this was not always recorded in the resident’s care records. We therefore decided to rely on the professional views of the care home managers in relation to the assessment of the presence of dementia and/or cognitive impairment.

Recruitment of specialist mental health assessment units

As planned, we recruited the three intervention sites through the NHS trust already partnered with the project. The site had six eligible wards and the final decision about which three to include was taken by the older people’s service-level managers after a meeting with the research team. As ward managers themselves did not actively opt into the study, this may have influenced ongoing engagement.

The research team visited each ward before fieldwork started, meeting ward managers and available staff. However, as ward staff work shifts and a high proportion of bank staff work on the wards, it was not possible to meet the entire staff team before the research started. Again, this may have affected engagement with the project.

There was one change of manager at one of the intervention wards immediately before the study commenced but this did not appear to influence engagement.

Recruitment of a comparison site was less straightforward. We had originally planned to recruit three comparable mental health assessment units through the survey of care providers. However, it took longer than anticipated to identify the survey sample, and, once the sample was identified, responses from the NHS in particular were slow to come in (see Chapter 5). It was not possible to recruit through the NHS Portfolio at this point, as we had not yet received research ethics approval for this stage of the project. We opted instead to utilise existing contacts and relevant networks to identify comparable sites. However, comparable sites were not in abundance. There seemed to be two main reasons for this. First, there has been a recent move towards greater community provision, meaning that fewer trusts now appear to provide inpatient mental health assessment. Second, several of the sites that expressed an interest already employed LSW in some form on their wards and so were ineligible as comparators.

The site eventually recruited was identified through a national database of clinical psychologists and related practitioners. The trust had only one mental health assessment unit but this was larger than the three intervention wards in total. Further, the ward manager and local principal investigator agreed to continue recruitment until we had reached the target of 30 comparison patients (as opposed to 10 patients per ward, in the intervention sites) or the 6-month recruitment period ended, whichever came first. Table 36 (see Appendix 1) summarises the characteristics of the specialist mental health assessment units recruited for this part of the study.

Selection and recruitment of staff

People with dementia in care homes

We planned to select 10 eligible residents from each care home, using random selection, and invite them to join the study, either directly (if they had capacity to give informed consent) or through a consultee. After we met with representatives from the included care homes in April 2013, it was agreed to keep the eligibility of care home residents as broad as possible. At this meeting, three basic criteria were set for inclusion/exclusion, as follows.

• Include:

  • residents with dementia or suspected dementia.

• Exclude:

  • residents considered by the care home manager to be reaching the end of their lives

  • residents who had been at the care home for < 3 months (in order to ensure that 3 months’ baseline data were available from the person’s care records).

In addition, recognising the importance of learning throughout the feasibility study, it was agreed that if managers identified further reasonable grounds for exclusion once selection began, these would be considered by the research team and, if agreed, applied throughout.

Ten eligible residents were to be randomly selected in each care home in the month prior to the intervention being introduced. However, obtaining a sampling frame of eligible residents from each care home was challenging, as pertinent information to establish eligibility (whether a person had dementia or suspected dementia) was not routinely recorded in care records. We decided therefore to ask each care home manager to make an assessment based on their knowledge of their residents and supply the research team with an anonymous list of all residents they considered to be eligible.

A researcher at the University of York who was independent of data collection and analysis then randomly selected residents, using the eligible participants’ room numbers and a random number table. These allocations were communicated back to the researchers. In the case of CH3, the independent researcher was unavailable and so resident numbers were picked out of a hat by the two researchers in the presence of two members of staff.

The situation of people with dementia can change so suddenly that it is not always possible to exclude potentially ineligible residents before selection. For example, one resident, who was well when the random selection took place, became severely ill the following week and died soon after. Further, in two care homes, staff felt unable to approach some selected residents because a change in the residents’ circumstances meant that the approach might now cause distress. We therefore added a further selection criterion, whereby residents were not entered for random selection if care staff had reason to believe that approaching the resident or (where necessary) their consultee would cause distress.

This openness to amending the criteria meant that we had to select some additional residents after the original selections, by generating a new random number table from the remaining eligible participant list. This approach does not meet the criteria for full randomisation but as this was feasibility work, and as participants were difficult to recruit, we felt it appropriate to randomly generate further participants where necessary. We also set a limit of selecting a maximum of two additional residents per care home, to preserve as much of the random approach to selection as possible.

Table 39 (see Appendix 1) shows the numbers of residents selected and reselected at each care home and the final numbers invited to take part (either directly or via a consultee).

Recruitment

The first 10 randomly selected residents were approached by a researcher and invited to take part in the study.

In consultation with care home staff, a researcher (supported where necessary by Innovations in Dementia) looked into what arrangements were necessary to support each potential participant to understand and retain information about the research, to weigh up this information and to communicate their decision (e.g. through the use of communication aids or the support of a trusted member of staff or family). If the person had capacity to consent, the researcher supported them to read through the participant information leaflet (see Appendix 10) and answered any questions they had. The information sheet was clear and easy to read, and project advisers with dementia had contributed to its design. If the person wanted to take part in the study, they were asked to complete a consent form or to give verbal consent witnessed by a family member or member of staff (see Appendix 10).

If the researcher had reason to believe that the resident did not have capacity to give informed consent, a consultee was identified and asked to advise on the potential participant’s wishes. Again, this decision was made in consultation with care home staff and Innovations in Dementia, but responsibility for the final decision lay with the researcher. In most cases, consultees were family members or close friends (i.e. personal consultees). Nominated consultees (members of staff who knew the person well) were approached only if no close family or friends could be identified or if those approached felt that staff knew the person better than they did.

Contacting personal consultees was not always straightforward as, for data protection reasons, the researchers could not be given contact details without the consultee’s agreement, and so care home staff had to make initial contact. We gave care homes consultee information sheets and asked them to make contact in whichever way they felt was most appropriate (passing information sheets on when the consultee came to visit, telephoning the consultee or sending an information sheet through the post). Success was patchy and we had to send several reminder calls and e-mails to prompt care homes to contact potential consultees and let us know the outcome.

At this stage, potential consultees were simply asked whether or not it was acceptable for a researcher to make contact to explain more about the study (i.e. consent to contact). However, this proved to be a critical gateway (or barrier) to recruitment, as the majority of the people with dementia selected for the study did not have capacity to give informed consent (43/59). Without agreement from the potential consultee that we could make contact, we could not progress (effectively excluding the person with dementia from the study). Moreover, the indirect nature of first contact means that we do not know the reasons for refusal or non-response from those who did not agree to initial contact.

Some consultees actively advised against including the person they cared for, for reasons that included the person with dementia’s mental health status, lack of interest and current physical health.

Table 40 (see Appendix 1) summarises the numbers of people with dementia selected in each care home who had capacity to consent and their decisions, as well as those without capacity and the responses of consultees. The majority (14/16) of people with capacity to make a decision consented to take part, whereas fewer than two-thirds (25/43) of the people without capacity were included. Of these, seven were not included on consultee advice and a further 11 were effectively excluded because potential consultees did not agree to the researchers contacting them in the first place. In total, we recruited two-thirds (39/59) of potential participants (66%) sampled.

Family carers of people with dementia in care homes

If a person with dementia was recruited to the study, we also invited a family carer or close friend to take part, as findings from our focus groups and literature review suggested that carers’ QoL and relationships could be affected by LSW. Often, where a person with dementia did not have capacity to give informed consent, the family carer was the same person who had been contacted as a personal consultee. However, this was not always the case; in some families one person visited regularly but someone else took responsibility for managing the person’s affairs, and we were guided by the family as to who should be involved in which capacity. For the 14 people with dementia who consented to join the study themselves, we needed to make contact with the family carers to invite them to take part in their own right, and this was again a lengthy process relying on care home staff having time to obtain consent to contact. Once this was obtained further information (see information sheets in Appendix 10) could be given via post or e-mail and consent discussed over the telephone or in person. Written consent was always obtained (see carer consent forms in Appendix 10).

Table 41 (see Appendix 1) shows the number of family carers recruited against the numbers of people with dementia included and gives the reasons for the lower number of carers. In total, we recruited 31 family carers.

In summary, the factors contributing to success of recruitment of people with dementia and of family carers were:

• capacity of the person with dementia to consent directly

• time and enthusiasm of care home staff for making contact with potential consultees/carer participants and obtaining consent to contact

• consultees’ concerns about health issues (mental and physical) and how these might be affected by the research.

People with dementia in specialist mental health assessment units

Recruitment from the mental health assessment units (hereafter referred to as ‘wards’) was intended to be sequential and followed similar inclusion/exclusion criteria to those applied in care homes, as follows.

• Include:

  • new patients with dementia (i.e. new to the model of care, so patients transferred from one of the other study wards were excluded).

• Exclude:

  • patients considered by the ward manager to be reaching the end of their lives

  • if there was reason to believe that approaching the patient or (where necessary) their consultee would cause distress.

Wards agreed to notify the research team when a new patient with dementia was admitted and our links in the trusts’ own research teams also agreed to track eligible admissions. A researcher contacted the wards each week for details of any new admissions who might be eligible for the study. After some discussion about the slow start to recruitment, an e-mail reminder was also sent at the start of each week reminding the ward manager (or a nominated member of staff) of the eligibility criteria and asking them to notify us of any new patients who might meet these. Where possible, we cross-checked these figures with admissions figures from the on-site research team/trials unit at our sites but suspect strongly that we were not notified of all new admissions.

We were advised by service managers not to assume capacity to consent in the ward sites, as the majority of patients admitted did not have the capacity to make complex decisions. Instead, we asked ward staff to give an initial assessment (which would later be confirmed by a researcher in consultation with the individual and/or their consultee). Ward staff considered that none of the patients identified as potentially eligible had capacity to consent, so we sought a consultee in every case.

As in the care homes, data protection issues meant that consultees had to be contacted through the wards. However, this approach was even less successful in the wards than it had been in the care homes. The most frequent reason given for delays in staff obtaining consent for a researcher to contact a potential consultee was lack of time, as this extract from our field notes about one of the intervention wards illustrates:

20th May 2014 – Recruitment has stalled somewhat at this site. Despite being notified of four new patients on the ward we have heard nothing about whether they would like to [be contacted about] the study. Moreover, it appears that LSW is not happening, at least while the ward is very busy . . .

2nd June 2014 – Had a long chat with [name], a nurse on the ward. She said that the staff have been so busy recently that they haven’t had any time to approach any of the family members about the research (or do much LSW) . . . She said really they could do with someone on the ward whose job it is to do this (not clear if she is talking about LSW or recruitment for the research – possibly both). It turned out that several new people had been admitted to the ward in May that we hadn’t been told about . . .

Field notes

As a result of such delays we developed our exclusion criteria further.

• Exclude:

  • patients whose consultee has not been approached 2 months after admission

  • patients whose consultee has not been approached 1 month after recruitment period finished (or the month recruitment ended at the comparison site, to allow sufficient time for follow-up).

It also transpired that some ward staff were reluctant to approach some families because of concerns that this could cause distress, given the already-stressful situation the families were in. People with dementia tend to be admitted to a mental health assessment unit only when they and/or the people who care for them reach crisis. Their family carers are thus likely to be at a different point on the dementia journey from the families of people who have been living in long-term care. Indeed, we saw from the responses of consultees we did make contact with that ward admission was not always felt to be a good time to be engaging in research, either because the person they cared for was already distressed or because they themselves were overburdened with form filling and other caring responsibilities. Reasons given by consultees who decided not to proceed with the research included:

• Wife said she was tired and worried about her husband.

• Daughter did not want people ringing her when she was busy.

• Husband said that as long as his wife was getting good care he was not interested in taking part in research.

• Partner said he did not want the patient to be involved because he was already distressed by the things people were asking him on the ward.

• Son said it was not the sort of thing his dad would want (or would ever have wanted) to get involved with as he was quite wary of authority figures/people asking questions.

Reasons given by staff for not approaching potential consultees included:

• Staff member rang to say that the patient’s wife was poorly at that moment so they decided not to approach her.

• Staff were reluctant to approach niece as the person had just had a fall and it would seem as if they had got their priorities wrong.

• Staff forgot to ask family member about the research last time she was in and now they did not want to approach her because she herself was poorly.

Table 42 (see Appendix 1) sets out the numbers of potentially eligible participants and the stages they moved through before inclusion in the study. From an initial pool of 50 patients, we received consultee advice to include just 12 patients (24%). Sixteen potential participants were lost simply because the research team did not receive consent to contact (which could be arranged only by busy ward staff) in time and a further 15 were lost because consultees actively (or passively, by not responding) declined/advised against inclusion, or because the patients’ circumstances changed after the consultee was approached.

There was a similar refusal rate among consultees for people with dementia on wards (48%) as there was among consultees for residents in care homes (42%), but, coupled with the high numbers of consultees who were never approached by staff and the fact that none of the patients had capacity to consent themselves, the recruitment rate on the wards was much lower than in the care homes.

Four potential participants were excluded because of doubt over their diagnoses. Although we had expected some uncertainty about diagnosis in the care homes, we had not anticipated this in the hospital sites. However, questions about diagnosis were largely related to newly admitted patients, so this is perhaps not surprising, given the focus on assessment in these settings.

However, even for patients for whom diagnosis was secure, there was little in their notes about severity. Discussion with the on-site research team suggested that this was because many patients on the wards were not able to undertake the Mini-Mental State Examination. 136 The information we did receive about severity of dementia was, therefore, more likely to be based on a consultant’s clinical judgement (found, for example, by the on-site research team searching through correspondence).

This uncertainty and inconsistency in recording makes it difficult to envisage receiving accurate data on dementia severity for a full trial without conducting additional assessment with participants specifically for the research.

Not all consultees who agreed to participation were happy for the person with dementia to be approached to answer questions about their QoL and relationships. In most cases, consultees agreed to a researcher meeting the person and seeing if they were able to answer any questions, but in some cases consultees said that they would prefer the person not to be approached. In such cases the person could still be included in the study, but data were collected from proxies and/or their care records only, reducing further the amount of information available.

In summary, the recruitment of and gathering of data from people with dementia in specialist mental health settings was less successful than in care homes. The main reasons for this were that:

• None of the patients on the wards had capacity to consent and so, without consultee agreement, they could not be approached.

• Researchers could not make contact with over one-third of patients’ potential consultees because they were never approached by staff for consent to contact.

• Even when consultees agreed to the person with dementia being approached, some placed restrictions on the type and nature of data to be collected.

The recruitment process through the mental health assessment units was also labour intensive, with multiple telephone calls and e-mails often leading to nothing, as the following extract from our field notes illustrates.

1. . . . email on 3rd March said two people had been admitted to [ward] in the previous fortnight – one of them . . . is potentially eligible (the other has been transferred out).

2. KG tried to ring on 5th March but was asked to ring back on Friday 7th.

3. Rang on 7th March – manager not available – staff member said they would pass on a message for [manager] to ring me. Not heard by afternoon so rang at 4.40 pm but no-one answered.

4. Spoke to manager on 11th March . . . said [staff member 1] would ring me back that day but no-one did.

5. I rang again the next day (12th March) and spoke to [staff member 2] who said that manager is now away until Monday, [staff member 1] is also off and [staff member 3, who might be able to answer my questions] is currently busy. I asked for [staff member 3] to ring me back and left my mobile number . . . [no phone call received]

6. Rang on 21st March but [manager] not there.

7. Rang again on the 24th – left a message for [manager] to ring me back. Rang again in afternoon and spoke to [manager] who explained the patient had since had a fall and they were reluctant to approach him.

Field notes

• Exclude In this instance, it took 3 full weeks (and eight telephone calls) to speak to someone on the ward about obtaining consent to contact a family member. Eventually staff decided not to approach the family as, during the 3-week period since the research team had been notified of the patient’s admission, the patient had fallen, and it was felt that approaching his family would now cause distress.

Family carers of people with dementia in mental health assessment units

As in the study in care homes, we also invited the family carers of participants with dementia to join the study. In all cases this was the same person who was contacted as a personal consultee. However, carers were given a separate information sheet regarding their own participation (see Appendix 10) and it was stressed that their inclusion was voluntary and would not affect whether or not the person they cared for could take part. Information was given via whatever means carers felt would be most convenient for them (by e-mail, by post or face to face). No carers joined the study without at least one telephone conversation in which they had the opportunity to ask questions and researchers could explain the consent process. As with the care homes study, all included carers gave written consent to take part (see carer consent forms in Appendix 10).

Table 43 (see Appendix 1) shows the number of family carers recruited against the numbers of people with dementia included and gives the reasons for the lower number of carers. In total, we recruited 10 family carers across the four wards.

Implementation of life story work in care homes

The stepped-wedge design relies on an intervention being implemented at each site in turn over the period of a study. Our first observation in this feasibility study was that implementation varied considerably from care home to care home, despite the commitment of the care home provider (including training and resources) being the same at each site.

The training emphasised the role of all care home staff in making LSW a routine part of care rather than an additional ‘task’ to be completed. In keeping with this, homes were encouraged to enter as many staff as possible for the training, which ran twice at each care home at times agreed to be convenient with managers. It was also limited to 2 hours so that staff could attend without being kept too long from their core duties.

The numbers attending the training at each site ranged from 6 to 15. However, in care homes that went on to implement the intervention (carrying out at least some LSW with at least half of the study participants), one individual co-ordinated and in most cases also carried out the majority of the LSW single-handedly. In three care homes this person was the activities co-ordinator; in a fourth the activities co-ordinator left near the start of the project but another member of staff then took on LSW, fitting it around her other responsibilities. At these care homes other care staff were supportive of the process but found little time to engage in it themselves.

In the two remaining care homes the activities co-ordinators set up systems to support care staff to collect life story information during their day-to-day routines. Both created a folder for each resident: in one, care staff were then issued with notepads to note down life story information gleaned during everyday interactions and were encouraged to add this to the folders. In the other home, staff were allocated 20 minutes’ protected time per day to work with named residents. However in both cases, according to the logs that assessed how long staff spent on LSW (see Chapter 8), it was still the activities co-ordinators who collected most information and they alone who spent time constructing the life story products.

Thus, although care staff did spend time talking to and learning about residents as part of their day-to-day routines, they found it difficult to find time to put this information into a format that could be used by others or enjoyed by the individual or their family. If we refer back to the potential challenges identified in the development phase of this study (see Chapter 3), this supports the argument that outcomes for care, as well as wider interpersonal benefits to people with dementia and their carers, may be lost if staff have time only to focus on the process of collecting life story information without then having time to do anything with it. Sites that appeared to have the most success in implementing LSW were those that combined a shared responsibility among staff to collect information with a designated worker who took responsibility, and had dedicated time, for pulling information together and presenting it in a way that others, including the people with dementia themselves, could use.

The approaches to LSW undertaken in each care home also varied and, crucially, tended to differ from the approaches often depicted in LSW literature and envisaged by those discussing the outcomes of LSW in our earlier focus groups. In Chapter 3 we set out a range of approaches to LSW or ‘mechanisms’ through which LSW was intended to produce an outcome. These ranged from approaches focusing on the individual, such as LSW as a personal memory aid, a personal challenge or an approach to life review, through more interpersonal approaches, such as LSW as a shared memory aid, communication aid or platform to enhance connection between people with dementia and others, to LSW as a tool for care. The training given by the care home provider emphasised the full range of possible outcomes.

A template entitled ‘some important things’ was provided, which staff could use as a starting point. However, it was emphasised that completing this did not constitute LSW: it could be a useful tool to get the process started, but the approach and resultant products should be individually tailored and informed by the needs and preferences of the person with dementia. This tailored approach was taken in four care homes (in that personalised books, boxes or other items were created) but in all cases the design and construction of the life story products were led by staff, not by people with dementia or family carers. It appeared that in almost all cases residents were not considered to have the capacity to take a lead in the LSW themselves. This reduced the chances of seeing the outcomes anticipated by the people with dementia who took part in our focus groups, many of whom had a greater degree of capacity than those in the feasibility study, and who thought that LSW could provide a satisfying personal challenge or opportunity for reflection on achievements and identity. Moreover, family carers were only sporadically involved – perhaps to provide some photographs or view the ‘finished’ product – and so improvements to their QoL and relationships with the people with dementia also seemed unlikely. As evidenced in the focus groups with staff at study sites, the primary intention was that life story information could be used to improve care, which in turn might improve residents’ QoL (see Chapter 9).

The organisational context at individual sites appears to have influenced the success or otherwise of the implementation of LSW. Although the care home provider as a whole was supportive of LSW (indeed, they provided the initial training and guidance), care home managers were essentially left to their own devices after this to bring about change in their own settings. In homes where managers proactively led this process and/or actively supported individual members of staff to dedicate time and energy to LSW, there was a degree of success.

A key factor appeared to be the consistency of management, with all four care homes that had retained the same managers from initial sign up to the 6-month follow-up seeing the most success. In the two sites where there had been a change in management there was less sense of ownership of the intervention, and while, ostensibly, managers had sanctioned staff to undertake LSW, there seemed to be confusion about whose responsibility this was, as this extract from field notes suggests:

Popped up to see business manager who didn’t recognise me (and didn’t seem to be expecting me), and who also said she didn’t know about any LSW, but the care manager [who was currently off site] would . . . She said the staff would know if they’d done any LSW.

Field notes

At some of the sites that did undertake LSW, staff were also unsure at the start about how they should proceed, but were supported by managers, or enthusiastic/more experienced individuals who the managers encouraged to take a lead, as illustrated in this field note:

Spoke to manager on [date] who said that staff are feeling a bit overwhelmed and as a result are struggling to get going with LSW (they have lots of good ideas but are struggling/or don’t have the confidence to put these into action). Has decided to back fill the activities coordinator for two full days to support the other staff to get going with LSW. The activities coordinator is experienced in this sort of work.

Field notes

In one of the sites, staff had only recently finished a previous project that had left them feeling disillusioned, and this ‘project fatigue’ was cited as a reason why there was little enthusiasm for LSW (see Chapter 10).

Table 44 (see Appendix 1) summarises the approach to and organisational context of LSW implementation in the homes.

In summary, the factors that influenced the implementation of LSW in the care homes were:

• Care staff finding it difficult to find the time to put life story information into a format that could be used by others or enjoyed by the individual or their family.

• Sites that combined a shared responsibility among staff to collect information with a designated worker who had dedicated time to compile and present information appeared most successful in implementing LSW.

• The design and construction of life story products being led by staff, not people with dementia or family carers, might have reduced the chances of seeing certain types of outcomes such as improved relationships or carer QoL, thought to be associated with LSW.

• In sites where there had been a change in management, there was less sense of ownership of the intervention and some confusion about whose responsibility LSW was.

It should be noted that the above relates only to whether or not and in what ways care homes undertook the collection of information and creation of products necessary for LSW. It does not cover how life story information or products were used, something that the participants in our development stage focus groups (see Chapter 3) felt was key to achieving positive outcomes from LSW. Qualitative data about the use of life story information and products were collected through interviews and discussions with people with dementia and carers and focus groups with staff at study sites towards the end of the study (see Chapter 9).

Life story work on mental health assessment units

In the three ‘intervention’ wards, LSW was considered a routine part of care and we were not, therefore, expecting to see any marked differences in the use of, or commitment to, LSW between the three wards. Instead, we wanted to assess how feasible it was to compare individual outcomes and costs on these three wards with those on a ward where LSW was not done. However, it soon transpired that the three intervention wards were not using LSW in similar ways or to a comparable extent: indeed, there appeared to be as great a difference between these wards as there was between them and the ‘comparison’ site. As such, rather than considering the wards as three intervention sites and one comparison site, it makes more sense to consider them as a continuum: from a ward that does LSW with most patients with fairly routine procedures for this to a ward that does no LSW at all (the comparison site); and two in between that did some LSW elements. Table 45 (see Appendix 1) summarises the approaches at each site.

The resources available to do LSW at each of the wards differed considerably. In intervention ward (IW) 2, LSW was a core part of the work of three part-time occupational therapy technical instructors (OTTIs). They had dedicated time and access to a computer and scanner to produce the life story documents and were able to collect and use life story information during activities they ran with patients on the ward. IW1 and IW3 had had similar resources in the past but these had been lost some time before the research began and, thus, during the study period, IW1 nursing staff and assistants had no additional support to undertake LSW and IW3 had access to an OT only 1 day per week. Chapter 9 provides a more thorough discussion of the reasons staff on IW1 and IW3 found it harder both to find time to undertake LSW and to participate in the research, but one factor was clearly the additional resource on IW2. By way of illustration, permission for the research team to contact the consultees of three out of the five patients recruited through IW2 was obtained not by ward staff but by the OTTIs. Without their support it is likely that recruitment on IW2 would have been no higher than it was on the other wards.

QoL-AD measure

The QoL – AD produced the largest amount of usable data on QoL for the person with dementia.

Because the person with dementia did not always answer all questions, and because some questions were not relevant to people living in care homes (e.g. ability to do chores around the home), we converted total QoL-AD scores into an average, using the number of completed questions as the denominator, and then scaled the score back up. Given that the QoL-AD produces a simple additive total score, we felt that this was acceptable and, again, this allowed us to use all of the data we had collected rather than discarding large numbers of questionnaires that had missing data.

Higher scores indicate better QoL (with total scores ranging from 13 to 52). Negative mean differences, therefore, indicate improvement.

Dementia quality of life measure (DEMQOL)

DEMQOL allows the imputation of missing values when at least half the questions are answered, and provides SPSS instructions for doing so. Despite this, we could calculate overall DEMQOL scores for only a few people with dementia. Data collection was somewhat more successful when carers completed the proxy DEMQOL.

Higher values of the total DEMQOL score indicate higher QoL. Negative mean differences thus indicate improvement.

QCPR

CBI measure

The CBI measure has three subscales: work-related burnout, personal burnout and client-related burnout. In all cases, higher scores indicate higher levels of burnout. Negative mean differences thus indicate a negative outcome (higher mean burnout at follow-up).

In care homes, the intention was to track change in burnout for individual members of staff before and after LSW was introduced to the care setting. In the hospital wards, with the different research design, the intention was to ask whichever members of staff were available at a given point to complete the measure in order to assess the overall morale of the workplace. The underlying hypothesis was that we might expect better overall morale in the intervention wards because they used LSW.

ADQ measure

The ADQ produces an overall score and two subscale scores: one that is said to reflect ‘hope’ and one that is said to reflect ‘person-centredness’. The authors of the questionnaire state that ‘it is hope that especially predicts staff behaviour e.g. engagement in social interaction with residents, involvement in purposeful activity and stimulation, and the quality of physical care interactions’. 129

In all cases, higher scores indicate positive attitudes. Negative mean or median differences, thus, indicate improvement.

PID measure

The PDQ is a 20-item test of people’s beliefs about personhood in dementia. Higher scores indicate more positive views; thus, negative mean or median differences indicate a positive outcome.

CES

The CES assesses a range of issues for family carers or others who provide support to the person with dementia. It covers the extent to which carers feel that they can carry out activities outside caring, the support they receive from others in their network and from statutory organisations, the fulfilment they get from caring, the amount of control that they feel they have over caring and how well they get on with the person they are supporting.

Higher scores indicate better experiences; therefore, negative mean differences indicate positive change between baseline and follow-up.

Care homes

All staff were asked to log the time they spent on LSW with each participant. This included time spent with the resident/patient creating and using the life story, as well as time spent creating the life story while the resident/patient was not present, for example sticking photographs into a booklet. Time spent by all staff members as well as by volunteers, students and residents’ family members should have been included.

The LSW log-sheets for care homes were completed with few problems in three care homes. However, it was not usually possible to tell whether LSW required additional resources or the redirection of existing resources; sometimes, life story information was collected or discussed during a meal time or other routine activity. The information collected was useful in shedding light on how LSW was used as part of routine care, but not in identifying additional, LSW-specific resource use.

The person who co-ordinated, and in most cases carried out, the majority of the LSW completed the logs in these three care homes, even when recording another person’s time spent working on the life stories. We originally anticipated that the logs would be kept in residents’ care records and be completed by whichever staff members engaged in LSW. However, in each care home one member of staff took responsibility for the LSW, and kept the logs with the products as they were made. This staff member kept the products until they were ‘finished’ and given to the resident. Had residents been more involved in the LSW process, and the product kept in their room while it was in progress, keeping the log in their care records might have been more practical.

The majority of the activity recorded on the LSW logs related to the collection of life story information and the construction of life story products. However, life story ‘work’ also covers the use of the life story to improve care and QoL. This is much harder to capture and might arguably involve a wide range of people. Were the life story products used to trigger conversations with previously unresponsive residents, for example, or to understand why a person exhibited behaviour that challenged? There was little evidence of this type of use of the life story in the logs (or the reporting of adverse incidents and challenging behaviour) but staff did identify this use as important in the end of study focus groups (see Chapter 9). We cannot assume, therefore, that the life stories were not used in this way. To capture this routine use of LSW in everyday care, a different approach may be required, such as observation or ethnographic methods.

Life story work logs were not completed at all in the two care homes that did very little LSW and where no single individual took responsibility for it. In the final care home, the activities co-ordinator reported that extensive LSW logs were completed not just for study participants but for all care home residents, for the first 2 weeks of the study. After this, the logs were considered too time-consuming. None was provided to the research team.

Hospital wards (intervention wards only)

Completed LSW logs were received from one of the three intervention wards. In this ward, three OTTIs took responsibility for LSW, although they were not based on the ward continuously. One OTTI completed the logs but covered the activities of all three. The OTTI explained that the logs did not capture any LSW activity undertaken by nursing or other ward staff. For example, ward staff routinely used life story information to put patients at ease while they were providing personal care, or for ‘de-escalation’ (i.e. calming or distracting a person when they became agitated, without recourse to medication).

Thus, LSW logs were missing from two intervention wards and those that were returned did not capture all use of the life story for all staff.

Care homes

At baseline, a researcher and member of care staff together completed the data collection forms for service use, challenging behaviour and adverse incidents, with the staff member navigating participants’ care records and the researcher entering information into the forms. However, this process was labour intensive (taking two people up to half an hour to collect data for each participant). The research team concluded that it would not be feasible to employ this approach in a full trial.

For the follow-up data collection, we issued the forms to care homes in advance and asked them to enter the information without the researcher’s support. This resulted in some inconsistent and incomplete data collection. In some cases, the dates of incidents were outside the requested period, despite the dates of the follow-up period being pre-printed on the form. One possible reason for this is that care records were on paper in ring binders, which can be difficult to navigate.

Some adverse incidents and episodes of behaviour that challenges were recorded in separate sections of the care records, while others were recorded in the ‘daily records’, which were lengthy and not always filed in date order. Care staff would thus have found providing complete and accurate data very time-consuming. Without appropriate training and ring-fenced time, it is unlikely that care home staff could provide data for a full evaluation. If researchers were to collect these data without the support of care staff, ethical approval for unsupervised access to care records would be needed and explicitly agreed to by participants or their consultees.

Hospital wards

For intervention wards, the trust’s central research team offered to provide data on service use, adverse incidents and challenging behaviour. Data collection forms were converted to Excel spreadsheets in accordance with the team’s preferences. Despite the small numbers of patients with dementia recruited to the study from each ward, it proved labour intensive to collect the required data. Indeed, the process highlighted issues with record keeping that this NHS trust is now looking to address.

As with the care homes, incidents and behaviour that challenges were usually entered only in the patients’ daily care records (which in the intervention wards were paper records) rather than being reported separately. The trust’s research team searched through large quantities of paper records. For one patient they found over 250 entries of behaviour that challenged; they entered every incident onto the spreadsheet, but this was time-consuming and clearly would not be feasible with a larger number of participants.

The trials unit covering the comparison ward found it easier to gather the information requested, as their records were electronic and could be accessed remotely. However, it was still time-consuming to collect the information, with at least three entries per participant per day.

The intervention wards used a 25-point challenging behaviour scale to identify incidents,146 which might mean that they considered a wider range of incidents than the comparison ward. In a full trial it would be important to standardise the data collected.

We planned to collect data on service use, falls/other incidents and behaviour that challenges for 6 months after admission. When patients were discharged before 6 months, we tried to collect data from the care home or other discharge destination. This proved difficult, perhaps because the research team had no prior relationship with these organisations and they were not engaged with the project (see Chapter 6). Follow-up data were provided by only one of these organisations: the one the researcher visited in person.

Care homes

We developed a list of relevant antipsychotic, anxiety, hypnotic and antidepressant medications, in consultation with the care home provider, the project advisory group and a general practitioner (GP). The list was intended to represent medications that might be prescribed differently as a result of LSW. We designed a data collection form so that data could be collected from care home medical administration record sheets and then costed.

Care home managers anticipated that collecting these data would be time-consuming, as multiple paper records (which were stored separately from the care record files) would need to be retrieved for each participant. To minimise disruption, in one home the researcher agreed to collect data on baseline and follow-up medication use on a single day, at the 6-month follow-up visit. However, many medical administration record sheets had been archived and were not easily located.

In five care homes, on-site staff located the medical administration record sheets and extracted the data themselves. However, the results were variable, with forms not returned for all participants, those that were returned having gaps in the dates covered and/or entries made for medications not on the list of relevant medications. Again, it does not appear to be feasible to expect care staff to provide this type of data without training and ring-fenced time.

Hospital wards

The hospital sites were asked to report all medication, both routine and as required (PRN), during the patient’s stay on the ward. At the comparison trust this information was recorded electronically. Although it was easier to access data here than in the care homes, extraction and reporting took considerable time.

Medication for anxiety and depression (including antipsychotics) was also reported on the incident sheets. For the intervention wards, data on prescribed medication were provided as part of the incident reporting.

Care homes

We asked the six care homes to provide data for the whole care home for the 6 months from baseline. We did not suggest how this should be done; rather, we were interested in understanding how these records were kept and their accessibility. By the end of the fieldwork period (January 2015), one care home had provided all of the information requested, another had provided details of staff sickness and a third had given information on prescribing. Data were provided on staff sickness as number of hours per month, on prescribing as number of residents receiving named antipsychotic drugs and on incidents as total recorded incidents including falls.

Hospital wards

The control ward provided details of staff sickness and turnover, and incidents, but not prescribing. Data on sickness were provided as number of days over the 6-month period, and incidents as number of falls and number of other incidents.

All three intervention wards provided data on staff sickness, prescribing and falls, and one ward provided data on staff turnover. Staff sickness was reported as percentage of staff off sick over the 6-month period, to comply with the NHS trust reporting requirements for monitoring target sickness levels, and could not easily be reported as number of days. Data were provided on falls but not on other incidents. This was because not all behaviour that challenges was recorded as an incident, for example if such behaviour was ‘usual’ for that patient.

Care homes

Incidents and examples of logged behaviour in the care homes included falls; residents being agitated, distressed or unsettled; verbal abuse of other residents or staff; shouting; slapping, pushing or biting another resident or member of staff; unco-operativeness with care or refusing to take medication; and taking items from other residents/flats.

The highest number of incidents reported in any 3-month period for one resident was 18. The data are based on only 32 residents, but appear to suggest a decrease in the number of residents with one or more reported incidents over the 3-month data collection period (see Appendix 1, Table 59).

Hospital wards

In the hospital control ward, the number of incidents per patient was recorded over approximately 6 months. In the three intervention wards, the number of incidents per patient was recorded over, on average, 12 weeks.

Data were reported for three patients from the control ward and for one, four and three patients from the three intervention wards (see Appendix 1, Table 60). The types of incidents were similar to those in the care homes except for falls; only one fall was recorded in the control ward and three were recorded in the intervention wards. The highest number of incidents reported for a single patient was 255 over 16 weeks.

Care homes

We received data for 38 residents from six care homes about the use of the NHS and social care services, residents’ trips out with family and safeguarding referrals. These are reported as totals across all care homes to give an indication of the size of any changes.

Table 61 (see Appendix 1) shows there were very few hospital admissions either before or after the implementation of LSW. Table 62 (see Appendix 1) shows that there were fewer reported attendances at hospital outpatient services after than before implementation of LSW. Table 63 (see Appendix 1) shows that there was little difference before and after implementation of LSW in the number of telephone calls to participants’ GPs for advice or to the NHS 111 service.

Table 64 (see Appendix 1) gives the number of appointments that primary care and community-based health and social care professionals attended at the care homes. GPs and district nurses undertook the most appointments. Except for the dietitians, the number of visits by all staff, particularly GPs, reduced during the follow-up period.

Table 65 (see Appendix 1) shows the number of visits study participants made to the GP and other professionals outside the care home, and trips out with family or friends. There were no attendances at day centres (NHS, local council, for profit or not for profit). The number of trips out with family or friends appeared to increase after the implementation of LSW.

Data were collected on the number of safeguarding referrals made. One initial report was completed in the baseline period and one in the follow-up. There were no investigations and no visits from the local council safeguarding teams and the Care Quality Commission was not informed of any incidents.

Hospital wards

Tables 66 and 67 (see Appendix 1) show the number and types of services received on the wards and as outpatient/day cases, respectively, for the 11 patients in the study. Two patients moved temporarily from the control ward to another ward in the same hospital (one for 3 weeks and the other for 4 weeks). The most commonly used service was occupational therapy. Patients received art and music therapy on the control ward only.

No patient in either the control or intervention wards was reported to have used any community-based services during their hospital stay.

Care homes

The use of prescribed medications for anxiety and depression was reported for 27 residents from six care homes at baseline and for 23 residents from five care homes at follow-up (see Appendix 1, Table 68). Antipsychotic medication was reported to have been prescribed twice during the baseline and three times during the follow-up period. Hypnotics and antidepressants were prescribed 15 times at baseline and 13 times at follow-up. For the majority, the date on which the drug was first prescribed was provided, but the end date was not; this suggests that most were being taken on an ongoing basis rather than PRN. None was specifically stated as PRN.

Data were collected on the strength and dose of each drug prescribed, with the intention of applying a monetary value to drug use before and after LSW implementation. 143 However, given the overall low usage and minimal difference between the two data collection periods, drug use does not appear to have been a main driver of LSW-related costs in these care homes. Drug use for individual residents has, therefore, not been valued. These care homes may not, however, be typical of all homes.

Hospital wards

In the hospital wards, details about the use of medication were extracted from data on reported incidents. In the control wards, PRN medication for anxiety and depression was given 67 times over the total of 72 weeks the three patients stayed on the ward. In the intervention wards, PRN medication was prescribed 97 times over a total of 94 patient-weeks. PRN medication for anxiety and depression was therefore prescribed approximately once per patient week in both control and intervention wards. Antipsychotic medication was prescribed PRN more often in the control ward (see Appendix 1, Table 69). However, these data are based on very small numbers of patients and are not generalisable. Medication was also given on an ongoing basis (see Appendix 1, Table 70).

It is not clear from the data whether few patients were prescribed medication for anxiety and depression on a regular basis or whether these data were not reported consistently.

In-the-moment reactions to the life story product

Of the 10 people with dementia interviewed, only two recalled having any involvement in making the life story product, which may have contributed to a lack of a sense of ownership of the product. When asked to talk about his life story book, for example, one care home resident said ‘I didn’t do it, you’d better ask her [the member of staff who made it]’ (RC3P01), and this was a sentiment expressed by others: ‘it’s just something they did, you know’ (IH2P04). Some people gave a distinct sense of being underwhelmed – ‘I read it once and then put it away’ (RC3P01) – or said staff ‘shouldn’t have bothered’ to make it (RC1P08).

Some of the people with dementia had not seen their life story book before looking through it with the researcher. Most had no recollection of making it, and some found this disconcerting (recognising photographs, for example, but not knowing how these had come to be there). Others were confused by the format of the book, or why certain things had been included. One book opened using an unusual mechanism which the person struggled to operate alone, while another person was unsure why there were heart shapes stuck onto her photographs, and one memory box contained birthday cards, which caused the participant to say, ‘I didn’t think it was my birthday’ (RC3P06).

One person noted that the information in his book was wrong, and others felt that the book did not cover their whole lives, that there was more that they could have added: ‘Well you’ve only seen the gist of my life in it, you know, it takes in my early days a bit. I have more photographs at home’ (IH2P04).

However, several people with dementia did seem to enjoy looking at the life story product with us. For some, this was indicated non-verbally; for example, one woman who could not speak looked intently at each photograph for a long time while smiling broadly, and others expressed similar sentiments in different ways:

Resident was happy and chatting generally, hard to make out words. Sometimes seemed to be talking about something relevant, for example when I said ‘is this a picture of your dad?’ she said ‘he was the one . . .’ (but didn’t finish the sentence) and said ‘he was a lovely man’ and laughed. Seemed happy, laughing and smiling, and talking to me.

Field notes, RC1P06

Others were able to tell us how they felt: ‘Had a long chat with [person with dementia] about his life story, prompted by his folder but continuing long after he had put it down. He said he had enjoyed talking to us about his life story’ (field notes, RC4P03).

It is impossible to say to what extent this enjoyment was derived from the LSW itself, and how much from the opportunity for social interaction more generally. However, it was clear that the life story product did provide a hook for interaction.

The life story product as an aid to memory and interaction

The presence of a life story product in some cases prompted memories of places, people and events:

I remember them, yeah [referring to people in photographs].

Would you have remembered without the book, do you think?

No, I don’t think so.

When people did not recognise people or places at first, captions and writing proved useful. In some cases, people with dementia could read the captions themselves, which then prompted them to talk further about the pictures. In other cases, we as researchers could read the captions or writing, and engage the person in a more detailed conversation than was possible without them. Even when photographs did not have captions, people were able to talk about them in some way, commenting on the clothes or appearance of the people in them, for example.

However, participants had mixed feelings about remembering the events and people depicted in their life stories. Some expressed sadness at recalling people who had died, or who they had lost contact with, but people also found it pleasurable to look back and see pictures of friends and family looking happy.

One woman appeared to enjoy looking at her book at the time, but staff reported that she later became upset, saying that the more recent information in the book was not true. Here, the life story book, although acting as an effective memory aid, appeared to highlight conflicts between the person’s sense of reality and the memories recalled. Remembering, of itself, may not always be a positive outcome.

Overall

Overall, people with dementia had little recollection of involvement in making their life story products, and this perhaps led to a lack of a sense of ownership. Looking at life story books could prompt some sad memories, but the in-the-moment interactions tended to be positive, and in many cases there was much smiling and laughing during the course of looking at the books. Although some might have felt underwhelmed by their life story book, a physical product has an important role to play in facilitating interactions, particularly with people who do not know the person with dementia well. However, there is the potential for confusion or distress if, for example, unfamiliar objects are included, or information is wrong or contradicts a person’s understanding of their present reality.

Doing and using life story work

Carers expressed mixed feelings about doing LSW. In many ways, it was seen as a positive experience for families: it was pleasant to remember happy times, and gathering stories and memories could build bonds between family members. Some carers found sharing life story information with others to be a positive experience; one described the process of writing her husband’s life story after he was taken into hospital as ‘cathartic’, and how it gave her a sense of pride in his achievements:

I think it was because I realised how much I knew of him and . . . I’ve always sort of been really proud of him, because he’s achieved things, you know.

IH1C01

However, some carers also expressed grief or sadness at the person no longer being ‘the person we knew’, or realising a sense of their relative’s fragility.

Carers talked about the difficulty of involving their relatives in the process of doing LSW when the relatives could not talk, could not remember photographs or stories, or had no interest in looking back over their lives. Overall, however, carers seemed to be willing to be involved in the LSW process and pleased to be asked to be involved, as they considered it a worthwhile activity.

Outcomes of life story work

Carers observed a range of outcomes of doing LSW. One of the most important benefits identified was that LSW could help staff understand the person with dementia, including elements of their past and more up-to-date information (e.g. about their current likes and dislikes). Part of this was preserving the identity of the person with dementia:

You’re never past it, are you, I guess, because there should always be an element of trying to keep some of that history for him even though he can’t retain it himself; and still, I mean he’s still the same person he just can’t always tell us who he is.

RC4C03

Another benefit observed by carers was the power of LSW (both the collection of information and a physical product) to facilitate conversations with both staff and visitors. This was felt to be particularly valuable in hospital wards, where temporary staff had no previous knowledge of the person. In such cases a memory board on a wall provided a valuable starting point for a conversation. For hospital patients who had been discharged and were now living in care homes, carers felt that having a life story product had played an important role in passing on information about the person and helping new staff to get to know them:

I think that’s very good because it’s informative to them, you know, and it’s good that they can talk to [person with dementia] then a bit; but it’s not that she really understands, well none of us know how much she understands, you know, but at least they can talk to her about it and see if they get a response.

IH2C11

In care homes, staff turnover was lower, and residents stayed for longer, so there was less need for quick access to life story information. Instead, carers felt that life story products were mostly used to facilitate conversations with them, as well as with grandchildren or less frequent visitors:

There’s another lady that comes to visit mum now and again and she, likes to get the box out and look at the pictures with her, so, you know, it’s something else to do; ‘cos mum can’t speak any more, so I think people that don’t know what to do are at a loss.

RC4C06

One carer identified LSW as ‘something to keep [mum] occupied’ and several thought that their relative enjoyed looking through the life story product, and in some cases felt it even helped their relative to remember more: ‘I didn’t think mum got anything out of it, but as the days went on you would get names of people who she’d never mentioned before’ (RC1C04).

Although carers identified these elements of LSW as of benefit to staff and carers themselves, they could also have distinct indirect benefits for the person with dementia, in terms of increased interaction and understanding and, possibly, more personalised care.

Some carers were not convinced that LSW had had any positive outcomes for their relative. Some reflected that relatives did not remember people in the photographs, or did not have any interest in looking at them, and therefore the benefits of doing LSW for the person with dementia was limited, although there may have been positive outcomes for other people.

Challenges of using life story work

Some carers found it both time-consuming to find photographs and difficult to choose which pictures and stories to select. One said that receiving a list from a staff member including categories such as ‘pictures from childhood’ and ‘pictures from work’ had helped to narrow it down. Another carer, whose friend had dementia, found it particularly difficult to find information, as all of the person’s relatives had died, and so ‘there was nobody there to ask really’ (IH2C11). Several carers found it frustrating when their relative could not remember events and people in photographs. Some also felt that doing LSW might be ‘emotional’ for the person with dementia, although this had not actually happened to any of the participants when doing LSW, and was based only on carers’ past experiences of, for example, looking at family photographs.

Carers felt strongly that LSW should have been started much earlier. Depending on the person’s circumstances, this might have been when they were admitted to the care home, or even when they were first diagnosed with dementia. This might have allowed the person with dementia to play a bigger role in putting the life story together, and given carers more time to collect information.

Overall

Carers had mixed views about the benefits of LSW for people with dementia. Although some direct positive benefits were described, other carers felt that there was no benefit to people with dementia at all, as they could no longer recognise people in photographs.

However, positive benefits were identified for both family carers and staff working with people with dementia. Families enjoyed looking back at their photographs and memories, remembering positive things about their relatives’ lives and reaffirming their relatives’ identities. Carers felt that staff had benefited from knowing more about the lives of the people with dementia in their care, and could build relationships with them through doing and using LSW. Carers suggested the presence of a physical life story product both encouraged and facilitated interactions with both staff and visitors, particularly those not well known to the person with dementia, or who struggled to make conversation. This could lead to indirect benefits for the person with dementia themselves, through more interactions and perhaps more personalised care.

Doing life story work

The process of doing LSW differed between research settings, as discussed in Chapter 6. In both care homes and hospitals, some life story information was collected on the person’s arrival (usually using a template), or soon after if they were unwell or the family was distressed. In some sites, more LSW was done later.

Staff usually attempted to collect information from the person with dementia themselves first, but explained that this could be difficult as people were often unable to recall details about their lives. Family involvement was, therefore, seen as important, although this was not always forthcoming.

In most sites, templates were used for the initial collecting of information. Some staff saw these as a useful starting point and a way of collecting the same information from everyone. Others felt them to be restrictive, lacking space for photographs or asking questions that were not always applicable, for example about a person’s role during the war. In two care homes, activities co-ordinators set up a folder for each resident to enable all staff to collect life story information during their daily work. This was in addition to the use of templates.

Not all LSW in our care home and hospital sites resulted in the construction of a life story product. In some cases completed templates were considered to be a ‘life story product’; however, in other sites further LSW was done and another, more personalised, product was made. On the ward with the OTTIs, this usually took the form of both a book and a memory board. Books were A4 folders with typed information in plastic wallets, which could be added to if further information became available later. Memory boards were put on the walls in patients’ rooms. In care homes, life story products included photo albums with captions, memory boxes, folders with written information and photographs, scrapbooks and, in one case, a memory blanket.

Completed templates were usually stored in a person’s care records and, although theoretically people with dementia and their families could look at them, it was rare for anyone other than staff to do so. Where a more comprehensive life story product was developed, a staff member often kept this until it was ‘finished’, with families sometimes unaware that the product was being made. Once complete, it was then kept in the person’s room and more usually used by both residents and families, and sometimes by staff who looked at it with the person.

Outcomes of life story work

For people with dementia, staff described the emotional aspects of LSW, both good and bad. For some, LSW had provided an opportunity to ‘open up’ about aspects of their lives that they had previously been unable to talk about:

I think she knew she was coming towards the end of her life and I think she just wanted to offload and tell people that, look, you know, I’m not really this person, this is really what I am . . . she broke her heart, but afterwards she said thank you.

RC1FG1

Staff talked about people being proud of the achievements recorded in their life story books, and had observed people feeling valued because others were taking an interest in them.

Some staff also felt that doing LSW allowed them to tailor activities to residents’ preferences, although they pointed out that it was important not to assume that people would still want to do the same activities they had done in the past. LSW had also uncovered opportunities for new activities, for example gardening.

Staff reported using life story products primarily for getting to know people better, but also for calming people down, understanding behaviour and problem solving. In the hospital ward that had made memory boards for patients’ rooms, these were valued as communication aids for temporary staff in particular, giving them something to talk to the person about, which was seen as having value for the patient too:

We take that information from the life story book and put it in a simple form on the wall . . . and it’ll just have the patient’s name on, the wife, the daughter, maybe where they’ve worked, where they’re from, a little bit of information, so that when bank staff or someone who doesn’t know the patient very well . . . they’ve got that communication aid, which just helps them providing the care that the patient needs.

IH2FG2

Staff in intervention hospital wards also talked about the value of LSW for easing the transition to a new place after discharge from hospital.

Staff described how a physical life story product was beneficial for families as well as being an aid to concentration for people with dementia, as it provided something for them to look at together, to stimulate conversation or even just an activity for the carer if the person with dementia was not very responsive.

Staff noted that sometimes people with dementia could remember more when prompted with a visual life story product, and that families were sometimes surprised by what the person could remember. However, others felt that the main benefits had come from spending time with people, rather than creating a life story product as such:

I think he just enjoys the company more than anything. So I don’t know whether or not the life story, although it’s something you can talk to him about, it’s something he relates to, I think it’s the company he’s getting and the time you’re spending with him more than the life story.

RC1FG1

Some staff felt that knowing more about a person helped them to see that person as an individual. They had used LSW to help them to calm an agitated person, and found that knowing more about people made it easier to have conversations with them, and even provide better care or more appropriate activities. This helped staff to build relationships with the people with dementia in their care.

Challenges of life story work

Not everything about LSW was seen positively by staff. Some found it difficult to do LSW with people with dementia, when people were reluctant to give information or unable to remember things about their lives. Some staff mentioned the difficulty of getting at ‘the truth’ about a person’s history, and having to follow up information given by the person themselves by asking their family clarifying questions. Other staff members were happy to write down and use the information given by the person, but some noted that family members could be distressed if the information written in a life story product was wrong.

Doing LSW could be emotional for people with dementia, families and even staff, although this was not always considered to be a negative. Staff sometimes found it difficult to know who would respond well and who would not, and people with dementia responded differently at different times. Staff acknowledged that there was a degree of judgement in deciding who to do LSW with and when, and what to include in any written life story product.

Family involvement in LSW varied, and some staff found it challenging to involve families. Families were often asked to provide photographs, and also information about their relative’s life if the person with dementia could not provide this him- or herself. Some care home staff had struggled to engage families, and in some cases there was a sense of disappointment about this:

I think that it would be fair to say that I think the families could have a lot more responsibility in doing this . . . [S]ome have been fantastic, but I think the easy part for them is just bringing you some photographs, I do think they could spare some time during visiting to sit and help put these things together, they just don’t, it’s another task for the staff to do.

RC1FG1

Families were sometimes reluctant to get involved in LSW, for example because their relative was very ill or had been admitted to hospital in difficult circumstances, or if they felt that it was ‘too late’ for LSW to have any benefit for the person themselves. If the person with dementia was in hospital, families could feel too overwhelmed to fill in a template, or might fear that upsetting information would come out. There might also be conflict within families, which could make it difficult for staff to do LSW with them. Staff also raised the question of how to do LSW when a person has no family or known friends:

Sometimes we get people in we know nothing at all about, they’ve got no relatives alive, they’ve got no visitors visiting them, so the only thing you can do is find out what they’re interested in, and maybe centred around the football team that they like . . . show them the pictures, see if they prompt any memories of anything.

IH2FG2

A common observation from staff across all settings was that, although they did have time to collect information about residents’ lives (and some felt that they knew their residents very well), they did not have time to sit and make a life story product. LSW, in that sense, was more successful when one member of staff (or team, in the case of the OTTI team on the hospital ward) took responsibility for leading LSW, collating information (even if this was collected by other staff members) and creating a life story product. However, in several sites this had been done solely for the purpose of the research, and only one care home site planned to continue doing LSW in this way. This site had been involved in a project with the local school to collect life story information, and three members of staff were trained as dementia champions, each taking responsibility for a particular aspect of LSW in the home (memory blankets, memory boxes near residents’ doors and birthday celebrations). This concentration of effort and commitment from several staff members meant that there was confidence at this care home that LSW would continue after the research was over.

Creating a product not only was considered to be time-consuming, but in some cases also provoked anxiety. Reasons for this included finding it difficult to connect with the person they were working with (and so being unable to collect information about their life) and worrying specifically about making a product: it not being ‘good enough’, their handwriting being unreadable or their being unable to use a computer:

You two [other staff in focus group] don’t like computers but I’ve got awful handwriting and I think it’d just be easier for somebody to see it and read it, if it was like typed up, it’d probably last longer as well.

IH1FG1

Both staff literacy and skill levels and the availability of technology such as computers and scanners were influential here. Care homes, in particular, had few available computers, and in some cases staff used their own computers at home (in their own time) to make the life story products.

Overall

Staff were mostly enthusiastic about doing LSW and positive about the benefits it could bring, particularly for their own practice but also for carers and people with dementia. However, there was little time allocated to do LSW, and staff sometimes felt unable to do it in addition to their normal duties. In hospitals, where there were many temporary workers and a more regular turnover of patients, a physical product was considered valuable to facilitate staff interactions with people with dementia and help them to manage behaviour that might otherwise be challenging. In care homes, many staff members felt that they already knew the people they worked with well and some questioned the need for a physical product.

Good practice learning points for life story work

1. Whether someone wants to take part in LSW is an individual thing. It should not be assumed that a person necessarily wants to make or share a life story and no one should be pushed into doing so.

2. A person’s life story is never finished and LSW needs to reflect this. To avoid setting people ‘in stone’, ensure that life story documents can be added to and updated.

3. LSW can be emotional and may raise sensitive issues. Some people will value the opportunity to talk about these issues, but staff require training to handle this and should not be expected to do so without support.

4. A person with dementia may have very different views from others about what their life story is for. Respect the person’s wishes about what goes into the life story and who will see it, now and in the future. If they do not have capacity to express their views, consult someone who knows them well.

5. Staff should consider making and sharing their own life stories. How does this feel? Who would they share them with?

6. Beginning the process early will enable people with dementia to take a more active role in producing their life story and communicate how they would like it to be used in the future. However, it is never too late to use LSW to improve care for a person and invoke a ‘nice feeling’.

7. Outcomes for better care will only come about if care staff take (and, indeed, are granted) the time to absorb life story information and the flexibility to use this to inform and improve the care they provide.

8. Short summaries might be useful for busy staff, helping them to achieve better care, but they cannot replace a life story owned, shared and added to by a person with dementia him- or herself.

9. The process of collecting life story information enables staff to connect and build relationships with people with dementia and their families. However, in order to have wider benefits it is also important to produce something that can be used and enjoyed by others.

Stage 2 was intentionally exploratory. Although we did observe effects in this stage of the work, particularly in relation to staff attitudes in care homes, it is clearly not right at this stage to draw out implications for health and social care providers.