Dementia Care Mapping to reduce agitation in care home residents with dementia: the EPIC cluster RCT

Consent for those with capacity

Residents who were able to give informed consent were asked to sign, or make a mark on, the trial consent form [see www.journalslibrary.nihr.ac.uk/programmes/hta/111513/#/ (accessed July 2019)]. For those who were not able to sign, a witness confirmed that informed consent had been given. Given the progressive nature of dementia, a further capacity assessment was conducted at each data collection point by the researcher to assess continued capacity. In the case of residents who lost capacity during the trial, appropriate guidance on consent in the light of changed capacity was followed,106 involving the appointment of a consultee (see Consent for those without capacity). When a resident had capacity and consented to taking part in the trial, consent to approach his or her main carer (relative/friend) was sought regarding their participation as a proxy informant.

Consent for those without capacity

When a resident was assessed and found to lack the capacity to give informed consent, a ‘Personal Consultee’ was appointed to give advice on the resident’s wishes. This was usually a relative or a close friend. When the resident had no close family or friends able or willing to act as Personal Consultee, a member of staff in the care home who knew them well but who was not actively involved in any elements of the research process (e.g. as a mapper or in giving proxy data on the resident) was appointed as a ‘Nominated Consultee’.

If the proposed Personal Consultee was present in the care home, they were approached by the researcher and given all of the appropriate documentation [see www.journalslibrary.nihr.ac.uk/programmes/hta/111513/#/ (accessed July 2019)] in person and asked for written consent to hold their personal details to enable the researcher to directly contact them thereafter. The proposed Personal Consultee was given at least 24 hours to talk to the resident and other relatives/friends about the resident’s wishes. The Personal Consultee was then asked to return the declaration form by post, within a week, expressing their advice on the resident’s wishes regarding taking part in the trial. If the Personal Consultee was not present in the care home, the documentation was sent to them by post, via the care home, on the researcher’s behalf. Details were provided on how to contact the researcher should they wish to discuss the role. For both methods of approach, if the declaration form had not been returned after 1 week, a follow-up reminder was sent by post by the researcher informing the Personal Consultee that a Nominated Consultee would be identified if no response was received within 1 week. If, after a further week, the declaration form had not been returned, the process of appointing a Nominated Consultee was followed.

A Nominated Consultee identified by the manager was approached using the appropriate documentation [see www.journalslibrary.nihr.ac.uk/programmes/hta/111513/#/ (accessed July 2019)] to discuss the potential involvement in the trial with the resident, other staff members who knew them well and any relatives/friends. The Nominated Consultee was then asked to complete the declaration form, providing advice on the resident’s wishes.

Personal and Nominated Consultees were advised that they could approach the researchers at any time to indicate if they felt that the person they were representing had changed their mind about participating in the trial and to withdraw them from participation. Given the potential frailty of those serving as Personal Consultees, a review of Personal Consultees’ capacity was undertaken by the researcher via the care home manager at 6- and 16-month follow-ups, where feasible.

Briefing

Mappers were asked to run at least one briefing session 1–2 weeks prior to undertaking the mapping observations. Briefing sessions informed the care home staff about DCM and the process of implementation, and provided an opportunity for staff to ask questions and for mappers to address any staff concerns.

Observation

Mappers used the standard DCM procedure. They were asked to observe as many individuals as they felt confident to, up to a total of five, for up to 6 consecutive hours on a single day if possible. Alternatively, they could observe for as long as possible on consecutive days up to a total of 6 hours. A detailed description of the DCM tool is published elsewhere83,109 and summarised here: every 5 minutes, the mapper records two pieces of information about each person they are observing, namely a behaviour category code (BCC) and a mood/engagement (ME) value. There are 23 possible BCCs for the mapper to choose from and they capture what the person with dementia is doing within that 5-minute period. The ME value encapsulates the associated mood and engagement level of the person with dementia and is chosen from a six-point scale (+5, +3, +1, –1, –3, –5). A set of rules is used to determine which BCC and ME value to choose. The mapper also records instances when a person with dementia is ‘put down’ by a care worker, known as personal detractions, and examples of excellent care, called personal enhancers. These are recorded as and when they occur. As DCM is grounded in person-centred care, for reasons of privacy and dignity, observations take place only in communal living areas, such as the lounge, the dining room and corridors. Mappers do not observe in bedrooms or bathrooms.

Data analysis, reporting and feedback

For the purposes of trial data analysis, reporting and feedback were considered as a single phase, rather than as the two separate phases of implementation described in the DCM literature. Once the data had been collected, they were analysed by the mappers and presented in a standardised report format for the purposes of feedback to the care team. In the trial, a standard template for DCM reporting was given to the mappers by the research team [see www.journalslibrary.nihr.ac.uk/programmes/hta/111513/#/ (accessed July 2019)]. DCM feedback sessions provided an opportunity for mappers to share their observations with the staff team and for collective discussion about good care practices and areas for improvement. In the trial, mappers were requested to run one or more feedback sessions with as many members of the staff team as possible within 1 month of conducting the observations.

Action-planning

Action plans of ways to improve care were then produced. As part of the feedback session, or in a subsequent meeting, staff and mappers were asked to jointly develop agreed, achievable group (care home-level) and individual resident-level action plans containing short-, medium- and longer-term goals that they wished to implement. Mappers were asked to monitor progress on these actions during the next mapping cycle.

Cohen-Mansfield Agitation Inventory – Observational113

The CMAI-O was developed by the trial team, with the permission of the CMAI’s author, to provide an observational measure of agitation. It is rated on a four-point scale (1–4) ranging from ‘never’ to ‘several times an hour’, based on observations over 1 day. The CMAI-O data collection was completed on participating trial residents in communal areas between approximately 10.00–12.00 and 14.00–17.00 (dependent on meal times in each care home). A copy is available from the authors on request.

Pittsburgh Agitation Scale114

The PAS is an established observational rating of agitation. The scale has good reported reliability and validity. 114 Observations are conducted for between 1 and 8 hours. PAS data were collected on participating trial residents in communal areas between 10.00 and 12.00 and between 14.00 and 17.00.

Dementia Quality of Life measure proxy version116

The DEMQOL measure proxy version (DEMQOL-proxy) is a QoL questionnaire designed specifically for use in people with dementia. It has 32 items covering mood, behavioural symptoms, cognition and memory, physical and social functioning, and general health. It is administered by interview with a carer (formal or family) of the person with dementia. The DEMQOL-proxy has acceptable psychometric properties for measuring QoL in dementia117 and is modelled to enable the derivation of preference-based indices (utility values), with the latter employed in the secondary cost–utility analyses. 118

EuroQol-5 Dimensions, five-level version – self-report and proxy versions119

The EQ-5D-5L is an accepted standardised, five-item measure of health outcomes that provides a single index value for health status120 covering usual activities, self-care, mobility, pain and anxiety/depression, each with five response options (no problems, slight problems, moderate problems, severe problems and unable to do the task). Both the self-report and the proxy versions were used in the trial.

Quality of Life in Late Stage Dementia121

The QUALID scale is an 11-item scale that rates the presence and frequency of QoL indicators over the previous 7 days using proxy report. It is a reliable and valid scale for rating QoL in people with moderate to severe dementia and has good internal consistency, test–retest reliability and inter-rater reliability. 121

Quality of Life in Alzheimer’s Disease (care home)122

The QOL-AD measure is a 13-item self-report measure of QoL with good reported internal reliability, test–retest reliability and convergent validity. 122 It is reported to be reliable in use with people with mild to severe dementia. 123–125 The adapted version of the QOL-AD measure126 is a 15-item questionnaire developed for use in care homes and it uses simple language and a four-response answer that is consistent across all questions (poor, fair, good or excellent). It includes minor changes to the standard QOL-AD measure to ensure relevance to those living in long-term care (e.g. an amendment of the wording of existing items, the removal of questions on management of money and marriage status, and the addition of questions relating to relationships with staff, one’s ability to take care of oneself, one’s ability to live with others and one’s ability to make choices). It has good reported internal consistency. 126

Resident demographics

Standardised demographic information (sex, date of birth, etc.) was collected by the researcher via interview with the care home manager or other senior member of staff and a review of the resident’s care records.

Health-care resource use

This measure was adapted from one developed for a care home feasibility trial. 127 The measure captured the use of primary and secondary care, including hospital-based care [e.g. hospital and accident and emergency (A&E) visits and stays], community-based care (e.g. GP visits and contact with other health-care professionals such as physiotherapists and psychiatrists) and other costs (e.g. adapted beds and other aids) incurred during the previous 3 months.

Prescription medications

The prescription of medications within categories of interest (e.g. antipsychotic, benzodiazepine, non-benzodiazepine anxiolytic, non-benzodiazepine antipsychotic, memantine, antidepressant, cholinesterase inhibitor, anticonvulsant, mood stabiliser and pain relief), and the administration of these if prescribed on an as required (PRN) basis, was recorded on a standardised case report form (CRF). This was completed by the researcher through a review of residents’ medication records for the previous month.

Resident comorbidities

These were collected by the researcher using a standardised CRF through a review of residents’ care records.

Clinical Dementia Rating scale128

The Clinical Dementia Rating (CDR) scale is a well-utilised, standardised scale for rating the severity of dementia, ranging from no cognitive impairment to severe or advanced dementia. 129 Impairment on six cognitive categories is rated and an algorithm is used to calculate the overall severity rating. Severity is rated by a trained assessor via informal interview/conversation with the person, or with a proxy who knows the person well. In this study, the CDR scale was completed by the researcher through interview with a staff proxy who knew the resident well.

Functional Assessment Staging Test102

The FAST is a scale designed to record the functional severity of dementia. Scores range from 1 (no dementia) to 7 (severe dementia) with levels 6 and 7 each having five sublevels. It is designed for use particularly in more moderate to severe dementia. It is completed by proxy report from a caregiver. 102

General Health Questionnaire – 12 items130

The General Health Questionnaire – 12 items (GHQ-12) is a measure of stress/psychological well-being used in the general population. It has good reported psychometric properties. 131 It contains 12 items related to mental health, each scored on a four-point scale of the frequency of symptoms or behaviours (‘less than usual’ to ‘much more than usual’). Owing to poor return rates, the collection of GHQ-12 data ceased during the trial (see Summary of changes to project protocol for further details).

Sense of Competence in Dementia Care Staff scale132

The SCIDS scale is a user-friendly, self-complete, 17-item scale measuring staff members’ competence in caring for people with dementia across four subscales (professionalism, building relationships, care challenges and sustaining personhood). Each item is rated on a four-point scale of confidence (‘not at all’ to ‘very much’). It has acceptable internal consistency and test–retest reliability. 132

Quality of Interactions Schedule133

The QUIS is an observational measure of the quality and quantity of staff interactions with residents during care delivery, at the care home level. It records five types of interactions (positive social, positive care, neutral, negative protective and negative restrictive) and has reported adequate inter-rater reliability and sensitivity. 134 The QUIS was completed via researcher observation, using a time-sampling technique in each setting. In accordance with QUIS guidelines,133,135 observations of interactions at 5-minute intervals were conducted in communal areas in the care home and recorded, then summarised into 15-minute intervals. One-hour observations were completed at two time points (a.m. and p.m.) over 2 days within the same week (7-day period) in line with care home activities (e.g. morning coffee break) in the most populated communal area in the home. For the purposes of analysis in this trial, the proportion of interactions that were positive (positive social and positive care) was used.

Care home demographics questionnaire

This questionnaire, designed by the study team, collected organisational data regarding each care home (size, type, ownership, geography, staff turnover, staff ratios, resident demographics, etc.) and its manager (qualifications, length of time in post, leadership style, etc.).

Environmental Audit Tool136

The Environmental Audit Tool (EAT) is an instrument with reported adequate reliability and validity used to differentiate between the quality of the physical environment in various types of dementia care facilities. 136 It was completed by the researcher with the assistance of a staff member if required.

Group Living Home Characteristics questionnaire137

The Group Living Home Characteristics (GLHC) questionnaire is a measure of the style of care being delivered in the care home. It examines how ‘home-like’ care delivered is. It includes four subscales (physical environment, residents, relatives/other visitors and staff), each containing at least three related statements answered according to a five-point scale (‘never’ to ‘always’). It was completed by the researcher.

Assessment of Dementia Awareness and Person-Centred Care Training audit99

For information on the Assessment of Dementia Awareness and Person-Centred Care Training (ADAPT) audit, see Dementia training audit and provision of dementia awareness training.

Safety reporting and reported unexpected serious adverse events

For information, see Resident safety.

Improved responses to individuals’ needs, personalities and interests

A repeated positive experience was the ability of DCM, and the observational element in particular, to help staff to identify, and so respond to, residents’ individual needs, personalities and interests:

One of our gentleman that we did the observation on, we found that he made his own well-being by playing with food and chucking it. So then I could go to the chef and say . . . ‘This gentleman plays with his food, what can we do?’ We saw him doing it before but because of the mapping it makes you look into it a bit more . . . He was happier, he’d have a lot more things that he could play with.

Mapper 50028/10394

When you’re mapping somebody and you see that they’re not joining the group activities you, we thought, right, let’s just try and see if we can do an activity that’s just for her.

Manager/mapper 50069/10475

Dementia Care Mapping was repeatedly cited as enabling individualised tailoring of care and activities, which helped staff to better meet residents’ preferences, needs and interests. This ability to better identify individual needs extended to groups of residents that staff could find more difficult to care for, as discussed in the following sections.

Improved anticipation and understanding, and prevention of complex behaviours

Examples of better identification of individual needs were related to BSC, which included agitation (the primary trial outcome measure), aggression and distress:

I’m finding this really interesting because we can just observe all of the behaves of our residents, and then we can just think about this, what can we change? How can we make them more happy? . . . How can we reduce of their really low behaves, which make them distract or distressed?

Mapper 50028/10637

In terms of challenging behaviours . . . it became predictable, but then it is preventable through your interventions. The mapping itself helped us identify the individual needs and once that is identified we tried to set up plans and how to deal with or approach the challenge, the behaviour that is challenging.

Mapper 50011/10160

Participants repeatedly described how mapping helped to identify, and so to anticipate, preventable patterns of challenging behaviour by recognising antecedents, warning signs and early points of intervention. This supports the trial’s hypothesis that DCM would have an impact on agitation, although the preceding quotations suggest that reducing agitation would have been a focus only for residents who were identified by staff or mappers as being agitated, rather than a blanket intervention for all residents.

Increased quality and quantity of interactions

Alongside impacts at an individual level, staff also spoke of impacts for all residents at the care home level. The impact most frequently referred to was improvements in the quantity and quality of staff–resident and resident–resident interactions:

You know, they [staff] try and engage with people more.

Staff 50010/10095

We’ve got another lady who’s end-stage dementia who’s just by people chatting with her: she’s actually started speaking again! Now, whether that would have happened anyway I don’t know, but she’s not spoken for ever such a long time, but now odd words are coming out.

Manager 58930/40001

Increases in staff–resident interactions were repeatedly cited, as in the previous example, as having a visible impact on the person’s mood:

Sometimes even one little smile to residents, one little joke, or one interaction can make a big change, for the rest of the day even . . . It’s like our lunchtimes there is around 30 something residents plus six carers in one room, and how someone can still feel lonely, and one interaction can change that.

Mapper 50028/10637

One of our care staff, he just went to her [lady with dementia] with a bright smile and started joking and how that changed her mood! . . . She was much more brighter, she was much more involved in all the situation.

Mapper 50028/10637

These and other quotations included throughout the process-evaluation results suggest a potential link between increased interaction and activity as a result of DCM implementation, and improved well-being for residents in intervention homes.

Increased provision of activities and occupation

Alongside improvements in resident interaction, increased provision of social and therapeutic activities and meaningful occupation was another common impact of the DCM process. These activities were typically instigated in response to recognition from mapping observations that residents were spending large proportions of their time without these types of stimuli:

My activities budget is off the scale! But at least I know if I do a map now on a particular day I know that there’s going to be stuff going on, and I know that if I’m sat there I’m not going to be bored silly.

Manager/mapper 50069/10475

Now we introduce lots of sensory activities . . . all the residents have got some sort of activities . . . because we’ve been observing . . . and we’ve been thinking about what could improve their well-being.

Mapper and manager/mapper 50018/10268 and 10277

In the 2 years that we’ve been here . . . the level of stimulus, activities, has grown.

Relative 58747/40007

Dementia Care Mapping highlighted the importance of providing care that addressed not only the physical needs of residents, but also their social and emotional needs and well-being:

I have to say, that first map I was bored silly, and that made me think we are not doing anywhere near enough for these residents. Yes, we’re ticking all the boxes in terms of care, they’re well looked after, you know, everything is up to date in terms of that person, but what are we doing here to keep their well-being sort of on a good level?

Manager/mapper 50069/10475

This quotation again suggests a link between increased occupation for residents as a result of DCM and improvements in well-being.

Improved responses to the needs of particular groups of residents

Some staff perceived that DCM had a greater impact on certain subgroups of residents. Residents with more advanced dementia or with more limited verbal communication abilities were considered, by some staff, to be more likely to benefit from DCM, as it provided a useful method of identifying their unique needs:

Especially those with end-stage dementia, I think they do tend to get more attention possibly than they did before. I think staff are more considerate towards them and give them a bit more empathy . . . A lot of the residents we have that can still interact . . . they seem to be already getting quite a lot of attention . . . I think it has had more impact on the residents that weren’t getting the attention, possibly.

Mapper 59830/40002

So many of our residents have severe dementia and, you know, their comprehension is very limited so [mapper X] helped us in there to make changes.

Manager/mapper 50069/10475

Residents who were included in DCM mapping were another group that staff considered as gaining particular benefit from DCM participation, as their involvement in mapping provided a focus on identifying their care needs.

Other impacts for people with dementia

Other impacts for people with dementia that were reported by staff included giving people with dementia a voice, enhancements to the environment and improvements to the equipment to better meet residents’ needs at an individual or a care home level:

As we observe them [people with dementia], it gives them a lot of chance and opportunity to express themselves.

Mapper 50011/10160

One lady, she couldn’t lift up the cup and we decided to change from a plastic beaker to two handles, which has helped her a lot.

Mapper 58747/10447

We changed many things, even changed the place where they sit. We try to make them comfortable; those who are watching TV switch off the radio when the TV’s on, because the first time [first mapping] it was kind of noisy. So we try to make it better.

Mapper 58747/10447

These examples collectively illustrate how DCM gave staff the ability to understand experiences within the care home from the perspective of residents with dementia, and so to identify how those experiences might be improved. The ability of DCM to uncover the ‘emic’ perspective of residents is explored further in Perceptions of impacts for staff.

Summary

As the previous examples show, the impacts of DCM for people with dementia reported by staff at both an individual and a care home level indicate that DCM could lead to an increase in staff–resident and resident–resident interactions, an increase in meaningful resident occupation and an improvement in staff identification of individual residents’ needs. Some staff reported that impacts were more likely for particular groups of residents, namely those with more advanced dementia or communication difficulties, or residents who underwent DCM mapping.

Improved awareness and understanding of residents’ needs and care quality

Impacts on staff predominantly related to an improved understanding of the residents under their care and, as a result, improved awareness of the quality of care being provided in the home:

You don’t realise what you’re doing sometimes and it makes you look at things to say I wouldn’t like that type of thing.

Staff 58930/40005

I think the benefits were just along the lines of highlighting to staff a little bit more about the needs of dementia clients.

Manager 50013/60005

Numerous references were made to DCM helping staff to better understand and respond to the needs and behaviours of people with dementia, indicating that this was a key impact for staff. DCM also allowed staff to see the perspectives and experiences of residents with dementia and provided a powerful reminder of the importance of understanding these:

Sometimes you just forget about, you know, the actual person. And to sit in that lounge and that dining room for 6 hours, you go through what they go through every day. If that isn’t the message of Dementia Care Mapping, I don’t know what is.

Manager/mapper 50069/10475

We were looking at it from the residents’ point of view, so we could see what they like, what they didn’t like.

Mapper 50031/10456

Comments from other staff members echoed these suggestions that, prior to DCM implementation, staff were less cognisant of residents’ experiences of care in the home.

Improved understanding of embodied communication

An improved understanding of embodied communication was a repeatedly cited impact. Staff, managers and mappers all referred to an increased awareness of, and response to, non-verbal cues and communication from residents with dementia as a result of DCM:

We’re more attuned to looking for non-verbal cues and very small changes.

Manager 58930/40001

It’s like offering somebody a drink and then, when you are observing it, actually they’re wanting to do it for themselves. So it’s about watching that hand movement isn’t it, and making carers aware.

Mapper 50019/10181

. . . by holding hands or by touch, there is, you can see the difference. The person will be quiet, or they needed that attention.

Mapper and manager/mapper 50018/10268 and 10277

Staff recognition of non-verbal cues of residents’ needs was important, as they helped the staff to identify the resident’s unique personality, abilities, preferences and requirements. Improving embodied communication was therefore particularly important for residents who rarely or never communicated verbally.

Increased confidence and positive feedback for staff

Staff were often reported to feel more confident in their care practices as a result of DCM taking place in the home:

They’re more confident now than they were.

Manager 50019/10195

Care assistants are now confident about doing things with the residents in there . . . I think they’re enjoying their jobs more, I think they’re enjoying being in that unit more.

Manager 50167/10711

Increases in confidence appeared to stem from several sources. These included feedback from the DCM process about the needs of residents, examples of the positive impact on residents when their needs were well met and DCM providing an opportunity to celebrate the sometimes overlooked positive actions of staff:

Sometimes even though you’re seeing the staff are doing very good things to the residents, sometimes you don’t appreciate . . . you don’t get the time to do that . . . but this was the time that we could be able to appreciate the staff.

Mapper and manager/mapper 50018/10268 and 10277

Increases in staff confidence and knowledge could also result from having staff who have been trained as mappers available in the home, as they are a perceived source of expertise and support in relation to problems and approaches to caring for residents with dementia:

After talking with the mappers it presents a greater awareness of what you need to do with and for your clients.

Staff 50010/40010

She’s [mapper] got that extra knowledge that she’ll go, well, it could be this, or it could be that.

Staff 10666/40015

The potential increases in staff confidence and knowledge that could arise from having access to the expertise of a mapper within the home suggests that some impact may have been possible in intervention homes that did not actually implement any DCM cycles. However, this is not borne out in the main trial results.

Summary

The most commonly cited impacts of DCM on staff were an increased awareness and understanding of the needs of residents with dementia, including the embodied communication of residents with limited verbal communication, and increased confidence among staff in providing care for people with dementia.

Smaller, achievable changes to care practices and culture

Relatively small, and therefore achievable, changes in staff behaviour were often considered by participants to make a big difference, despite the relatively little time, cost or effort that they took to implement:

Just tiny little things, for instance, when a staff member walked through the foyer . . . and acknowledged the residents, their faces lit up. That split second, and even a smile, it made a lot of difference to the residents.

Mapper 50031/10456

Now if I’m dealing with anybody, I have a conversation while I’m washing and dressing them. And that way I’m finding out little bits about them . . . about their likes and dislikes, what they used to do in their past life.

Staff 50018/60002

Examples of these small, achievable changes often involved staff making better use of the opportunities available to them to interact with residents, for example as they undertook care tasks or were passing through the home. Despite these examples signifying relatively small changes to practice, they were felt by staff, especially if collectively adopted, to have a significant impact on residents:

It doesn’t have to be a major functional change of the home, these [changes spoken of] are all really, really small things but, holistically and collectively, they make a massive difference.

Manager 50011/10611

The little things can make a big difference for someone who is just, who is not involved in the situation, even in the big group where they are sitting.

Mapper 50028/10637

The significance attached to such changes was also an example of the low levels of baseline interaction seen in some homes during the QUIS observations, in which residents could spend long periods of time with no one to interact with.

Larger, formal changes to care practices and culture

Larger changes to more formal care practices and processes were also reported, such as changes to staff inductions, ‘in-house’ training and care planning approaches. These changes required more effort to implement and could necessitate support at a managerial level or agreement across multiple care homes:

We have made it into a holistic type of care planning, wherein again we have brought in person-centred care.

Mapper 50011/10160

The main difference that it’s had so far is altering our training, ‘X’ does our dementia training across both homes, and we also do dignity training between both homes. And we’ve changed those courses quite a lot, so that it delivers a lot more of the language we learnt across Dementia Care Mapping.

Mapper and manager/mapper 50018/10268 and 10277

Changes to care home culture requiring managerial support were also spoken about, for example in relation to changing the previously held assumptions at a home level that talking to residents did not constitute ‘proper work’:

There’s this culture shift where it’s OK to sit down and have a chat with them [residents], it’s OK to be seen to do that . . . If she [care home owner] saw a carer sitting down [before DCM] it would be like ‘What the hell are you doing? You’re being lazy!’. And actually there’s a massive shift now, if you walk in and see a carer sitting and joking around with residents, that’s a really good responsive service.

Manager 50011/10611

This final example indicates the importance of having senior management that understands and supports the need to change care practices and culture in the home.

A tool for identifying and evaluating changes to care practices and culture

Many of the preceding responses indicate that DCM was used as a tool to identify areas for improvement across a range of care home practices and processes, including training needs, the quantity and quality of interactions with residents and care planning. Managers were particularly aware of the potential benefits of DCM as a structured tool for identifying and providing evidence for practice improvements:

Whereas before we would try to improve but we didn’t really know how, so it was a bit like running around headless . . . I think one of the most positive things about mapping is that it gives you a structure to sort of put dementia and dementia care in . . . So before [DCM], you sort of, you want to improve but it’s very difficult to know how to improve.

Mapper and manager/mapper 50018/10268 and 10277

From the cycles that the girls have done, they’ve identified and can share information with the rest of the employees, to actually improve in any way we can the care that’s delivered.

Manager 50031/11187

Dementia Care Mapping was also used as a means of providing evidence of the impact of improvements to care practices, and thus provided a means of both motivating and maintaining changes to the practice and culture of care:

Until you’ve sat there for a few hours and actually seen someone gain enjoyment from just holding something, it’s something that’s very easy to ignore because it’s very small. So it [DCM] meant we could actually start making small changes, people could see the difference.

Mapper and manager/mapper 50018/10268 and 10277

I’ve always said it’s [sitting and chatting with residents] a legitimate activity, but it is, now it’s been pointed out to them that it actually does have an impact on that person’s health and well-being, then, you know, it’s done more.

Manager 58930/40001

Having managers who were also mappers facilitated the process of getting senior staff to understand, and to provide financial support for, any changes required to care practices in the home. In some instances, significant changes were made to care practices as a result of DCM implementation:

That whole unit is light years away from before it was, before you started doing the mapping, before we started the project.

Manager 50167/10711

Summary

The DCM intervention enabled care homes to achieve change in some of the daily care practices of their staff, most noticeably in relation to the level of interactions with residents. Changes were also noted to formal care practices such as approaches to care planning and staff induction and training. DCM was perceived to be a useful tool through which the need for these changes was identified, with managerial or across-site support required for changes to be made at a care home level.

Conflict among staff

Disagreements over the findings of mapping sessions were reported to lead to conflict among staff in one home, although these differences were subsequently resolved:

There was arguments as well, because you know they say sometimes that you don’t see the residents and how they are being . . . and we cleared everything and they did take it in a positive way eventually!

Mapper and manager/mapper 50018/10268 and 10277

Although this was the only reference made to arguments, some other homes also reported initially negative responses from staff to DCM feedback, highlighting the importance of ensuring that staff understand the DCM process and the importance of providing feedback that celebrates positive examples of care as well as highlighting areas for care improvement.

Fear of scrutiny from past negative experiences

As a result of a home beginning to use DCM, some staff felt scrutinised and fearful, predominantly because of past negative experiences of other forms of care scrutiny, such as CQC inspections:

In most cases when it [feedback on care] happens it’s a negative experience because there’s inspectors from various organisations, so I think it wasn’t until we started giving feedback and there was quite a bit of positives in there that the staff really engaged with the process.

Mapper and manager/mapper 50018/10268 and 10277

The staff . . . it didn’t matter how much time we spent explaining that it wasn’t about spying on them, that’s how they felt about it.

Mapper 50019/10181

It was like being spied on.

Staff 50010/40010

These feelings appeared to be more common in staff members who did not fully understand the purposes or processes of DCM. Such feelings typically, but not always, lessened or went away as the processes involved in implementing DCM became more familiar to staff and better understood.

Inappropriate use of Dementia Care Mapping

Some misunderstandings about the purpose of DCM also appeared to lead to it being used in ways that appeared to be inappropriate or not in line with its recommended use. One home reported using evidence from DCM to assess potential new members of staff and as part of a fee review to provide evidence that a resident’s needs had changed and their fee should be increased:

We ask all new members of staff to come in for training where we dementia map them . . . We also use it [DCM] for fee review, so if we have someone whose needs have really drastically increased I can go to them and say she needs X amount of day care hours a week and there is the evidence.

Manager 50011/10611

In addition, in another home, DCM was perceived as a method for staff to highlight errors in each other’s care practices:

The idea is that if one carer’s working with another they can turn to them and say you shouldn’t have done that you should do this.

Mapper and manager/mapper 50018/10268 and 10277

It is potentially relevant that both these examples came from managers who had not been trained in DCM and appeared, from the content of their interviews, to not fully appreciate the purpose of DCM. This reconfirms the importance of ensuring that care home staff who hold key leadership roles, such as managers, have a clear understanding of DCM for it to be implemented appropriately and effectively.

Summary

In summary, some unexpected and negative consequences of DCM implementation were also identified, including conflict between staff over the results of mapping sessions, fear of being scrutinised and inappropriate uses of DCM. These undesirable consequences were noted more frequently among homes and staff (and particularly managers) for which DCM was poorly understood. In addition, the impacts of DCM were not always easy to identify nor uniformly positive. Some participants struggled to identify any impacts as a result of DCM implementation or to definitively attribute any impacts they did identify to DCM implementation. Participants who could not identify or attribute impacts were often, but not always, from homes that had struggled or failed to implement the trial’s recommended dose of DCM.

Care home context

Contextual features of care homes affected the degree to which DCM was implemented within each care home. This included broad issues, such as the type of setting and staffing levels or losses, and more specific issues, such as the availability of computers in the home and funds to support implementation.

The type of care home may have influenced implementation, with additional complications present in nursing homes. However, the value of DCM in more complex settings was acknowledged:

I think it’s just the workload, really. The amount of work there is sometimes, and with it being a nursing home – the intensity of the workload. Obviously, we have a lot of very poorly people sometimes.

Mapper 58930/40002

Managers of residential homes felt that they were disadvantaged by a lack of qualified staff members with the expertise to help to facilitate implementation:

Because we are only a residential home, erm, y’know, we haven’t got nurses and stuff so my staff aren’t that confident anyway . . . I’m glad we got involved because we got a lot out of it, I’m just disappointed that we weren’t able to continue.

Manager 10666/10722

Larger care homes that were well staffed were able to build time for DCM into their rotas, whereas smaller care homes with fewer staff members could struggle to accommodate the cover required to facilitate DCM:

That’s the reason we pulled out, because they [mappers] couldn’t carry on doing their deputy manager role, or senior care role, and be a mapper with the amount of reports . . . So I think it’s just a bit unrealistic.

Manager 50011/10611

Across all care home settings, high levels of staff turnover were an issue. A level of consistency in staff involvement is needed for understanding the change over time for residents and also to implement changes as a result of DCM:

Care homes are really, really busy. Turnover of staff in care homes can be quite dramatic at times, and the realities are there’s other pressures on them isn’t there. But that’s, that’s it though isn’t it. That’s the reality of anywhere though I suppose.

DCM expert 70005

Particularly important in relation to the staffing of care homes was the turnover of mappers. Not only did this lead to delays in implementing DCM while additional mappers were recruited and trained, but this also had an impact on the confidence of the remaining mappers, leaving some feeling overwhelmed by what was required of them:

I think where I struggled and like with the report and things was because I was the only mapper, they were like ‘I need you to map three people’. And it was like ‘ahh . . . my first map’. And I’m mapping three people whereas if there was somebody with me, then we could’ve both done that together.

Mapper 50028/10394

Care homes with limited access to computers experienced difficulties in completing the computer-based elements of DCM:

We’re not always the most IT literate in care homes. Having access to computers and time to analyse can be quite difficult.

Mapper and manager/mapper 50018/10268 and 10277

Some care homes also had high workloads or competing priorities at the time, such as CQC reports or problems with staffing levels:

It was mainly the home, the crisis that the home was in . . . Knowing the staff we had at the time and the difficulties we had . . . I struggled just to get them to do the health and safety training, the basics.

Manager/mapper 50009/10104

These findings suggest that DCM implementation may be easier in larger nursing or dementia-specific care homes with greater numbers of qualified staff, where there may be greater access to computers and to funds and larger staffing pools to provide cover for mappers to undertake DCM.

Manager

The care home manager was a key individual in the success of DCM. Although managers were not always involved in the implementation of DCM, as they generally were responsible for rotas, allocating staff workloads and supervising the mappers, their engagement either ensured that it ran efficiently or created barriers for the mappers:

I think management support, you know, it can either be amazing when it’s amazing or it can be a real difficulty if the manager isn’t supportive.

DCM expert 70006

Generally, there was thought to be a lack of support from managers. Managers needed to have awareness of the time required for their mappers to be involved and willing to support this process:

The managers delegated all aspects – all of it – to the mappers, and didn’t take any responsibility for ensuring the process. I think the odd manager was supportive, again from the office, but not really understanding about making time.

DCM expert 70004

When there were difficulties in the relationship between managers and mappers, issues arose for mappers, particularly at the feedback stage. The hierarchical nature of care homes sometimes acted as a barrier in the process, meaning that mappers were unwilling or felt unable to challenge the care home manager:

It’s mainly from a confidence perspective, [mappers] were clearly not confident to challenge a manager who was not supporting.

DCM expert 70003

Conversely, when managers were engaged with DCM, this facilitated the process and helped mappers to make changes based on what was observed during the cycles. Furthermore, when managers valued DCM, they could see clear benefits from implementing it. For example, one manager believed that it was a key tool in helping to improve the CQC rating of the care home:

They were very clear that they thought DCM was fantastic, because they saw it as a way of improving the quality of their care to take their home CQC rating from good to outstanding.

DCM expert 70004

Managers referred to the adaptations required to make DCM fit into their home. This included suggested or actual adaptations to the process of DCM itself, such as shorter maps, and hypothetical or actual adaptations to the work of staff, such as changes to rotas and over time:

We’re going to be having to change shifts so they can be on shift at the same time every month because we can do some mapping.

Manager 50010/10755

These findings suggest that managers are key in the implementation of DCM and can act as either a barrier or a facilitator. A good relationship between the manager and the mappers is crucial to successful implementation.

Motivation and enthusiasm for Dementia Care Mapping

Motivation and enthusiasm were key factors when implementing DCM. Expert mappers emphasised that, when managers and staff teams were motivated to be involved in the DCM process, mappers were more likely to implement DCM within the home:

The manager would come in and, you know, be really enthusiastic. They came to the briefing; everybody was at the briefing, the whole home, the manager of the home, do you know what I mean. The company really bought, really bought in to DCM. And the two girls, the two mappers were just really enthusiastic about it . . . and really, really tried their hardest.

DCM expert 70005

To capitalise on this motivation and confidence, some care homes undertook the first cycle of DCM soon after the training session, and this appeared to have benefits, with greater difficulties experienced if mapping was undertaken or attempted a while after attendance at the training session:

They went for that training down in London then there was a gap and I kind of think if they had just gone straight in and done the mapping, they might have done it. But I feel that when a few weeks passed, they were struggling to say how we do this . . . maybe they didn’t have the confidence, you know what, to roll it out.

Manager 10666/10722

The motivation of mappers was sometimes overshadowed by the time constraints within care homes, meaning that the mappers were able to complete the mapping hours, but often struggled to find the time to discuss what had been observed:

When I was actually there we had lots of, you know, creative really, very inspiring conversations about care practice. But it’s trying to nab them, it’s almost like it’s impossible to nab, sit the person down and really discuss what’s going on.

DCM expert 70002

In summary, having motivation and enthusiasm for making changes to practice was key in the success of DCM. However, the challenges faced, such as time constraints, sometimes overshadowed the motivation of individuals.

Staff engagement

As DCM is a home-level intervention, effective engagement with care home staff influenced the extent to which DCM was implemented. Particularly important was having staff who were open to feedback based on the observations and were willing to contribute towards formulating action plans. In some care homes, the mappers were able to engage a large proportion of staff in feedback sessions, which was seen as positive by the DCM experts. Mappers who were in more senior roles may have found it easier to encourage staff to attend feedback sessions, owing to their status within the home:

I was so impressed how they just gathered people up, at busy times as well. And they really saw the worth of that, and great discussion. I was, and that was the first home, so I thought wow this really works.

DCM expert 70002

To implement a care home-level intervention, the involvement of all staff roles was crucial. The importance of staff members in a range of roles attending feedback sessions was highlighted:

There was a really big crowd actually, and it did include lots of different disciplines of staff, including the painter and decorator and maintenance man, which was great.

DCM expert 70002

The degree of engagement of the wider care home staff with DCM influenced the implementation of DCM. High levels of engagement with staff led to more of a ‘whole home’ approach to considering DCM feedback and agreeing on action plans:

You really have to get quite a few people across the organisation thinking in the same way to sort of drive that change.

Mapper and manager/mapper 50018/10268 and 10277

Staff engagement was achieved through multiple strategies. These included providing feedback in staff meetings to ensure good coverage; a focus on ensuring that staff understood DCM, its purpose and the outputs of mapping; and a focus on providing positive, as well as negative, feedback. The latter strategy, in particular, helped to ensure that staff were engaged and that the benefits of DCM were demonstrated:

We sort of ended up picking two or three very small examples of people who were very happy or very sad and just focusing on those, describing in laymen’s terms . . . They did take it in a positive way because they’d been, initially we said it’s for all our residents’ well-being.

Mapper and manager/mapper 50018/10268 and 10277

The selection of mappers influenced how engaged the staff team were. When mappers were not seen to be popular staff members or people to be respected, it was difficult for them to engage with the staff team to implement change:

The second time around we held a meeting and nobody came . . . We did try like, you know, individual [meetings], a few minutes at a time, but I don’t think they took it seriously enough, do you know what I mean?

Mapper 50010/10096

However, when mappers were respected, engagement was facilitated by the fact that implementation and feedback were peer led, as opposed to being conducted by an external person:

It’s people that you know and peer-led, it’s, you know, it’s not like somebody from outside coming and talking with them, it engages the staff.

Manager 58930/40001

In one home, there was a division in the work environment between staff who did and staff who did not support the mapper, which made feedback sessions particularly difficult. This led to further difficulties in implementing DCM, as staff were not willing to make changes to practice. This may have been reflective of the culture in the care home, highlighting underlying issues that existed prior to involvement in the trial:

I would say in that home there’s two very definite groups of staff: the ones who want to see progress, who would support the mapper, who would want to encourage her and make it work, and there was also a very strong group of people who say, you know, ‘what does she think she’s telling us’.

DCM expert 70001

Negative attitudes towards DCM from both staff and managers also acted as a barrier to engagement with DCM. If DCM was not perceived to be a priority, staff often did not take the time to learn about and understand the process:

I felt that the ways that people had been working prior to that, the culture of the place, whilst there was a lot about it which I would really commend it for, there were definitely some things that needed to be looked at. And I felt that there was a reluctance to look at that. And there was quite a lot of defensive response.

DCM expert 70001

Some staff questioned the validity of DCM when the presentation of residents was changeable or they considered that DCM did not suit the residents they provided care for:

. . . some of our residents are quite, quite poorly so it doesn’t work for them, it just depends how well they are.

Staff 58747/40008

However, gathering together to collectively reflect on DCM feedback sometimes made staff feel a part of the process and helped to break down potential barriers and mistrust, for example in relation to being observed and receiving feedback, of which staff may have had past negative experiences:

In most cases when it happens, it’s a negative experience because there’s inspectors from various organisations, so I think it wasn’t until we started giving feedback and there was quite a bit of positives in there that the staff really got engaged with the process.

Mapper and manager/mapper 50018/10268 and 10277

In summary, staff engagement was crucial to the implementation of DCM. Without the support of the staff team, mappers struggled to make practice changes. The mappers needed to be respected by the staff team for DCM to have any influence in the care home. The importance of receiving feedback from peers rather than from external individuals was highlighted.

Mapper qualities

The choice of mappers, including whether or not they had the required qualities, was a key indicator of implementation success. The qualities valued in mappers, namely those qualities considered by managers to facilitate DCM implementation, included confidence in undertaking the mapping and feedback sessions, leadership skills to motivate and influence action-planning in the home, pragmatism, dedication, an interest in and an enthusiasm for DCM and improving the care of people with dementia, and a keenness to learn. Managers were asked to select mappers; this was done based on the skills required to become a mapper but also based on the staff members that were available to choose from in each home, who were deemed likely to remain working at the home for the duration of the trial:

Two team leaders stuck out as being really passionate about people living with dementia.

Manager 50019/10611

Attending the training and implementing DCM improved the confidence of some mappers:

I never thought I’d be able to do it, but when we got back here, and after the training we actually put it into practice . . . It all made sense.

Mapper 50031/10456

Mappers having the motivation to improve the quality of care for people with dementia helped facilitate the implementation of DCM. However, for one mapper, the challenges of implementing DCM over-ruled her motivation and she became disengaged with the process:

I think it impacted on how they felt about it. It became a chore and one lady I can think of in particular was very excited and motivated about it, and became less so because of the challenges. And that’s really sad to see. Someone who had that real passion to just go ‘do you know, it’s just too hard’, but initially is like ‘I’m happy to come in on my day off because I think it’s marvellous’, but when you’re not then getting that support it, you know, wears you out really. Wears you down.

DCM expert 70003

Certain skills and abilities were also perceived as being central to enabling mappers to undertake the various processes involved in implementing DCM. These skills and abilities included computer literacy, writing high-quality reports, fluency in English and sufficient academic ability to undertake the more complex components. Conversely, mappers who did not possess some of the aforementioned qualities or skills, despite the trial processes used to identify and recruit mappers with the required skills, could struggle to implement DCM. In particular, a lack of IT skills, low confidence levels and insufficient fluency in English were cited as barriers to DCM implementation:

For me it was quite difficult because English is not my native language.

Mapper 58930/40002

The selection of mappers in senior roles was perceived to have both positive and negative impacts on DCM implementation. Although senior staff could possess academic, writing and leadership skills that facilitated DCM implementation, it was more difficult to free up staff in these roles to undertake mapping and they could be subject to multiple competing demands on their time, which challenged their ability to implement DCM:

[I chose] two quite strong team leaders that I knew would be able to get staff on their side and would be able to manage the feedback, because they can be quite difficult sometimes.

Manager 50019/10611

I was disappointed that my staff couldn’t continue with the mapping, but I think I made the error in the staff I chose . . . their level of responsibility in the home was too high, so it didn’t enable them to have enough time.

Manager 50167/10711

Although the qualities and skills mentioned previously were identified as important, in reality it could be difficult for managers to identify staff members who possessed many or all of the skills required to implement DCM in a care home context:

If I look at the whole team there are few other people who would have been possible, academically capable of completing that project. And that’s a difficulty.

Manager 50167/10711

An important component of mapper choice was commitment from the potential mapper. Agreement was not, however, always forthcoming, given the length of the DCM course and the often distant geographical locations in which the courses were held. These were logistical issues that were especially problematic for staff with caring or other commitments:

We need someone who would agree to do it, and promise that when they come back they’re going to get the job done.

Manager 50021/11082

Furthermore, although managers recognised the qualities that were important for mappers to possess, in reality the choice of mapper often came down to who was willing and available to undertake the 4-day course, particularly if this would involve staying in another area:

When we found out they would have to do 4 days’ training in London, [mapper initially chosen] wasn’t able to do that. And because we found out almost at the last minute, we just had to grab somebody else that was free really.

Manager 10666/10722

A further example of availability being prioritised above ability was seen in another care home in which, following a mapper leaving, the manager did not pick a staff member to attend DCM training based on their abilities. Instead, the new mapper was selected based on their availability to attend the course:

I think when in one case where a manager . . . didn’t have a clue about who to nominate, she was just, she was looking at the off-duty and sort of picking names off the off-duty.

DCM expert 70005

Mappers who were less qualified or experienced found it harder to implement DCM. The DCM process asked mappers who were care assistants to develop and utilise skills that they were not familiar with using. Having the skills to ask questions as part of feedback sessions, which allowed staff members to give opinions rather than just yes or no responses, was particularly challenging for some mappers:

It was about time, it was about access, it was about computer literacy. And the, for some of the care workers, writing anything was a real challenge. You know, they’re just not, not used to putting descriptions down, let alone sort of feedback-type questions to ask.

DCM expert 70002

There were many conflicting priorities placed on mappers, particularly if they were staff with additional responsibilities, such as completing the medication rounds or conducting assessments for potential new residents. This had an impact on the time available to complete the stages of DCM:

Well it was all just such a squeeze in the day, you know, and I remember being at one home where one of the mappers was late, one of the other mappers was busy doing the drugs, you know, and that was quite a familiar scenario.

DCM expert 70004

In summary, the selection of mappers had a significant impact on the delivery of DCM as an intervention. Recruiting mappers with the appropriate skills facilitates the delivery of DCM, as difficulties with stages of the mapping process, such as analysis and report writing, can result in much more time than anticipated needing to be dedicated to the completion of cycles. For mappers to undertake the DCM cycles, a degree of effort, commitment and time was needed that some mappers had not anticipated or appreciated when agreeing to take on the role. The amount of time that staff would need to be away from their usual roles to undertake DCM meant that it was not viewed by some, in its current form, as a tenable intervention in a care home setting. Ensuring that managers understand what skills are particularly important for mappers helps to reduce the likelihood of these acting as a barrier to the delivery of DCM.

Understanding Dementia Care Mapping

The extent to which mappers, managers and staff valued and understood the benefits of DCM influenced whether or not it was successfully implemented or facilitated. When DCM was perceived as a tool and a process that could improve the quality of care being delivered, managers and mappers were more engaged. In care homes in which DCM was not understood, particularly in terms of the time commitments required, there were issues with the completion of cycles:

The manager that clearly didn’t get it, I think was just so busy with everything else. Absolutely, you know, I did see her running around like this, yeah.

DCM expert 70003

An understanding of the DCM process and its potential for changing the care delivered in care homes is crucial to successful implementation. When some of the trained mappers did not fully understand the process, they struggled to explain it to others:

The trouble is, when they came back [from the training], they weren’t able to explain properly what they had to do. So, you know, they were trying to explain it to us and we were finding difficulty understanding what was actually involved.

Manager 10666/10722

As a result of a lack of understanding of DCM, managers and staff did not always engage with the process:

I still don’t understand it . . . no one has been able to explain it to me fully . . . Every time I asked them [the mappers] to explain they were struggling. So I never got a full grasp of what it was all about.

Manager 10666/10722

When managers did not understand the process or value of DCM, it was perceived as a distraction and it became particularly difficult for mappers to be released from their duties:

I would say the challenges outweigh everything else really.

Manager/mapper 50009/10104

However, for the majority of mappers, the value of DCM was clear and easily understood, even when this was not clear to the managers:

You can see a big difference. You can actually see what goes on through their [the residents’] eyes. When you sit there and watch them for about 3 hours.

Mapper 50019/10180

These findings indicate the importance of mappers, managers and staff having a clear understanding of the DCM process before attempting to implement it. Without this understanding, mappers are unable to be released from their duties to complete mapping tasks, as it is not seen as a priority or a valuable tool within the care home.

Complexity and time demands of Dementia Care Mapping

Dementia Care Mapping was felt to be complex and time-consuming by some participants, with the nature of DCM felt by these participants to be a barrier to its implementation in a care home context. Various aspects of DCM were felt to be too complex, including the observation phase and associated coding, the report writing and the language used:

So the report writing, yeah, was horrific to be honest. Very time-consuming. Obviously we both had different roles at that point so quite demanding, so getting time, and it’s not a very quick process. Like I say it took quite a lengthy period of time. So that were quite bad to be honest, it was very demanding.

Mapper 50069/10476

Particular components of the process were identified as time-consuming or overly onerous, including the length of the training course and the paperwork and report-writing requirements:

Some of the things that certainly I picked up on, some of the things they found more difficult, was around the kind of data analysis and report writing. That was the area that people seemed to find most difficult.

DCM expert 70006

For some mappers, there were delays between them attending the training course and completing their first cycle of DCM, which might have led to them forgetting some of the more detailed parts of the process, such as the observational coding framework. The DCM experts had to give additional, unexpected time to help mappers ‘revise’ some parts of their training before starting the mapping cycle:

I mean one person I worked with, we did our first IRR [inter-rater reliability], our first kind of check of her accuracy and I think we got, our agreement was kind of in the 40s. Like it was very, very low. And that was mapping one person for an hour.

DCM expert 70006

The time required to undertake DCM meant that mappers had to be taken away from their usual roles and defined as ‘off the floor’ and were therefore removed from the core business of care delivery in the case of direct care staff:

The mappers were also carers and nurses and had, you know, activities and tasks and jobs to do as well as the mapping. Yeah, I think they found it quite overwhelming.

Manager 58930/40001

In addition, some managers felt that once the training course was completed they were then left to implement DCM on their own, although in reality every home had access to a DCM expert for 5 days to support implementation of their first cycle. Such views raise questions about the fit of DCM for care homes and suggest the need to consider adapting standard DCM processes for care home staff in the future development of the tool.

Expectations of Dementia Care Mapping and the trial

Expectations of the trial and of what was required to support the implementation of DCM did not meet the realities experienced by participants. In particular, the time and costs exceeded those expected by the managers and mappers. This had an impact on the schedules in place for each care home and led to the expert mappers having to consistently renegotiate schedules:

But from start to finish, although we renegotiated, kind of, schedules for me going down there, it was difficult, I think they would say that they weren’t aware of the time commitments to it.

DCM expert 70005

Some managers were not aware that the mappers could not be included as members in the staff team and thus could not provide direct care on the days when they were mapping. These managers did not appreciate that the mappers were unable to stop mapping to assist residents with any care needs that they had during the mapping process. This led to tensions between some managers, mappers and expert mappers:

They were definitely not aware of that because they were not normally on the part of the numbers, so they didn’t realise that they would have to be off the numbers to do the, you know, preparing the map, for the mapping, for the map itself and to do the rest of their work.

DCM expert 70005

The range of processes and tasks involved in participation in the trial, as well as those involved in implementing DCM, such as the completion of trial and DCM paperwork, seeking consents, undertaking interviews and identification of staff participants, were not anticipated by managers or mappers prior to taking part:

They struggled with the copious amounts of paperwork, they told me that if they knew what was involved that wouldn’t have gone for it.

Manager 50019/10195

In summary, the conduct of the trial may have negatively influenced perceptions of the tenability of implementing DCM in care home settings, with the combined burden of trial and DCM participation proving difficult for some care homes to manage. Mismatches occurred between the expectations of what the DCM intervention entailed and the additional work that was required by managers and staff during the trial, despite having been provided with detailed written and verbal explanations of the processes and the time involved by the research team. Care home managers and mappers were not fully aware of the expectations of them during the trial, particularly in relation to the time involved in each stage and component of the trial, and the requirement of mappers to focus on all aspects of the DCM intervention while in the mapper role, with the consequence being that they were unable to attend to their usual care work at these times. This had a negative impact on the ability of mappers to implement DCM, as they were frequently not released from the staff roster to complete the DCM procedures.

Expert mapper support

Expert mappers viewed themselves as incredibly valuable to the implementation of DCM, suggesting that, without their input and support, DCM would not have been successfully implemented in the majority of care homes:

If the expectations had remained the same, I don’t think it would have worked without the expert mappers.

DCM expert 70006

However, two DCM experts felt that the mappers would have completed the cycles regardless of whether they supported the mappers or not. They thought, instead, that the observation data or the implementation process would have been of a lower quality without the support they provided to the mappers:

I think some of the classic mistakes that can be made in DCM would’ve been made . . . and if they hadn’t been picked up and supported or changed, it can have a really devastating effect on DCM.

DCM expert 70002

Support provided by the expert mappers helped to clarify any uncertainties and alleviate mapper doubts:

It is nice to have somebody sat with you whilst you’re actually doing it practically, to be able to say ‘Am I using this code or that code?’, ‘Am I observing this right?’

Mapper 58930/40002

When DCM expert mapper support was delivered flexibly and with a friendly manner, it was valued by care homes. There were, however, also times when support was perceived as problematic:

The expert mapper was a little full on. Knew her subject, very passionate, but very, erm, timescale orientated. Which kind of pushed, I think, added to the stress.

Manager 58930/40001

The DCM expert mappers believed that they went above and beyond their expected roles to provide support within care homes. They were allocated 5 days of time to support each care home; however, they felt that much more time than this was required. Certain situations led to an increased need for DCM expert mapper support, such as a care home having only one mapper, or tensions in the relationship between mappers:

I’ve tried to support her individually because the other mapper hasn’t supported her in the individual care summaries. So I’ve tried to support her extra by phone and do that, but I don’t think she was, she had the skills to do that by herself.

DCM expert 70005

Despite support from the DCM expert mapper being provided to all homes during the first cycle of DCM, not all homes felt supported:

I feel as if we were, had the training and then left to our own devices really.

Mapper 50024/10349

Conversely, some mappers felt that they did not need the support and that, as they knew the residents well, they had a better insight into the residents than the DCM expert:

When you learn anything really you just want to go and do it on your own don’t you. You don’t want someone looking over your shoulder going ‘yeah, yeah you’ve not done that right’ or ‘I didn’t get that’ or ‘why did you put that’ . . . well I know that resident and I know.

Mapper 50069/10476

For other homes, the mappers benefited from DCM expert mapper support during the first cycle, but felt that they required more than what was provided to continue to undertake DCM cycles:

When she’d gone the support had gone.

Mapper 50010/10096

One DCM expert mapper suggested that, for future DCM research, research assistants should support mappers in completing DCM paperwork. However, this does not represent the standard use of DCM within care homes and thus the pragmatic trial design employed in the present trial:

I think you would’ve really struggled if they hadn’t had someone going in. Be that an expert mapper or be that a research assistant, to go in and support them with doing the paperwork and completing that, which obviously would unblind the researchers. But they would need some kind of support to be able to engage with the research.

DCM expert 70006

These findings suggest that DCM expert mappers felt that their influence had a positive impact on DCM delivery and resulted in substantially more cycles being completed than would have been without their input. However, this support was not always appreciated by the mappers. The implementation data, which show only 26% of intervention homes completed further acceptable DCM cycles after the first cycle supported by the expert, highlight the value of expert mappers’ input in supporting DCM implementation in care home settings.

Summary

There were many barriers to and facilitators of implementing DCM, owing to the complex nature both of the intervention and of care home settings. The selection of appropriate staff as mappers was key, as it was important to ensure that they had the necessary skills to implement all aspects of DCM, including suitable language skills, the time to undertake all aspects of DCM within their day-to-day role, being well respected by the staff team and having leadership capabilities and influence among the staff. It was crucial that the expectations of DCM were understood by both care home managers and mappers before training was completed. Implementation was easier in larger care homes, where there was a larger staff budget to allow mappers to be released from their usual roles. The support of expert mappers was felt to be particularly important in the beginning to implement DCM. Although this is not a standard component of DCM, unless purchased as an addition to standard training, it was a necessary feature of mapper support during the trial. These findings have implications for considering the way that mappers are currently trained and the support that may be required to implement DCM in practice (i.e. to fully engage mappers in the four phases of a DCM practice development cycle).

Barriers to identifying impacts

Challenges to identifying impacts arose primarily from the perceived difficulties in accurately identifying the impacts of any care improvements on people with dementia. For example, some staff and relatives felt that people with dementia would not be able to recognise the impact of any changes made, and some relatives (who may have been involved in completing outcome measures) felt that it was difficult for them to identify changes in their family member, owing to the infrequency of their contact with the resident:

They [people with dementia] will not acknowledge it [DCM] as having an impact on them.

Mapper 50011/10160

I think their life has perhaps been improved by it, but I don’t know whether they would be able to express that or realise that.

Manager 58930/40001

I think it’s amazing and probably essential, and you know, it’s hard to get data because . . . the residents themselves aren’t particularly reliable.

Relative 50016/20114

Barriers to achieving positive impacts

Interviewees spoke of multiple challenges to achieving positive impacts from DCM. Some of the more predictable barriers included staffing, the costs of making changes and competing priorities for staff, such as high workloads or emergencies. For example, if competing priorities meant that action plans were not always carried out, then the potential impacts from DCM were not always realised:

You are trying to carry action plans out, but the day-to-day everything means that you can’t carry them out as much as you’d like to because, like I say, you end up with short staff, you end up with emergencies.

Mapper 59830/40002

The understanding and perceptions of DCM (e.g. of its purpose, quality and reliability) and the perceptions of the current quality of care in the home appeared to shape the degree to which the outputs of mapping sessions were attended to or seen as indicating a need for change:

They [staff] don’t understand what it is.

Mapper 50010/10095

The main issues [with DCM] are, some of the things we got on the feedback were, well, you were looking at so and so, they hadn’t slept last night so that’s why they’ve been nodding off the whole time. So even for that resident it sometimes doesn’t give you an accurate picture.

Mapper and manager/mapper 50018/10268 and 10277

[Answering a question about whether changes to care have occurred] No I don’t think so, because they’re all pretty good anyway. The staff here are pretty good. So we do sort of pride ourselves on person-centred care.

Mapper 50031/10456

Additional barriers to achieving positive impacts included staff who were not open to change and a lack of managerial or financial support for changes proposed as a result of DCM cycles:

Obviously you always get a few who don’t want to take on board anything.

Mapper 58930/40002

When we do the briefing we, let’s say, decide to do some things a different way, and they agree. But later on they found some difficulties, like I said, to change the chairs or something. And then maybe that’s cost then.

Mapper 58757/10446

Barriers to maintaining positive impacts

Some care homes experienced challenges in maintaining positive impacts from DCM over time. These challenges included difficulties in maintaining staff engagement with the DCM process, in particular with the feedback and action-planning sessions, and difficulties maintaining momentum as staffing teams changed over time:

People stopped turning up . . . The first time around . . . we had maybe eight or something in here, and they did, you know, we had a good meeting. But then the second time around we held a meeting and no one came . . . we put posters up all over and we let everyone know that we were doing these feedback sessions . . . and nobody turned up.

Mapper 50010/10095

I think sustained changes certainly from the staff who were here then, but the staff who haven’t actually had that form of training, the momentum has waned actually.

Mapper 50024/10349

Of note in relation to achieving and then maintaining positive impacts for care home residents generally is the fact that many examples of impacts for residents were specific to the individuals who had been mapped. These findings suggest that the impacts of DCM may be greater for mapped individuals than for residents who were not involved in mapping:

The ones that we mapped, I’d like to think are more gainfully employed with their time.

Manager/mapper 50069/10475

We have observed a resident then we have made a care plan specific to that resident’s needs.

Mapper 50011/10160

As mapped individuals were a small minority of the trial sample, producing and maintaining a positive effect on residents more generally may have been difficult for those homes that focused predominantly on action-planning for mapped individuals and focused less on the development of home-level action plans. Given that mappers could select any care home residents to be observed during DCM cycles, those mapped were not necessarily trial participants. In addition, a focus in some homes on addressing the needs of mapped individuals may have reduced the longer-term impact of DCM, as the high rates of death and transfer to other care settings made it likely that many mapped individuals were no longer residing in the homes at follow-up:

Even to be observed, for them [mapped individuals], was kind of benefitting . . . but unfortunately most of them are not here anymore . . . so we can’t say ‘oh it’s brilliant, working . . .’

Mapper 58747/10446

Action plans and impacts for mapped residents were not necessarily transferable to other residents, or were not viewed as such by staff, which may have affected the degree to which positive impacts from DCM were able to be maintained over time.

Facilitators of achieving and maintaining impacts

As well as identifying challenges to achieving positive outcomes from DCM, interviewees reported a number of factors that facilitated the achievement or maintenance of impacts. Changing staff perceptions of the quality of care they were providing and/or their perceptions of people with dementia and their needs was a key impact facilitator:

You don’t realise, when you’re walking through the room, that you’ve passed 10 people and you haven’t even spoke to them.

Mapper 50010/10095

It encourages the staff to think more of them as people . . . because obviously they [people with more advanced dementia] don’t respond as much . . . so it has helped in that way, to make them more aware that they still have to have the same contact, the same explanations for them.

Mapper 58930/40002

As creating change in care practices was dependent on staff recognising the need for change, mappers needed to clearly demonstrate the issues with the current care for these to be recognised and addressed by staff:

It’s really tempting to go in gung-ho and start talking about PEs [personal enhancers] and the different codes, and it’s like trying to sit the staff down and talk about trigonometry. It’s not something interesting that makes much sense to them . . . We sort of ended up picking two or three very small examples of people who were very happy or very sad and just focusing on those, describing it in layman’s terms.

Mapper and manager/mapper 50018/10268 and 10277

It was good and clear to see, you know, which areas we really needed to improve on.

Manager/mapper 50069/10475

Making DCM feedback accessible helped staff to understand the need for changes in their care practices, and the purpose and value of DCM, a lack of understanding of which was identified as a barrier to impacts. Creating a shared understanding of the need for improvements was felt to be an important driver for change:

You really have to get quite a few people across the organisation thinking in the same way to sort of drive that change.

Mapper and manager/mapper 50018/10268 and 10277

One thing I am more aware of is how staff, certain staff, sometimes talk to residents . . . in the inductions now that we do, we make it really clear about what we want a new member of staff, how we want them to interact, how we want them to speak . . . I go through how I would like people to speak to residents.

Manager/mapper 50069/10475

Embedding DCM data, feedback and action plans into the work of the care home, through their inclusion in care plans, handovers and staff meetings, and engaging staff across the home in identifying care improvements were strategies through which mappers tried to ensure a home-level approach to care improvement:

We implemented it in our handovers as well as through all the team leaders.

Mapper 50019/10181

Putting together a dementia group which has carers, cleaners, people across the organisation, and you talk to them and try and actually get them on board. You try and sort of instil in them what person-centred care looks like.

Mapper and manager/mapper 50018/10268 and 10277

So then I could . . . say to the chef ‘This gentleman plays with food, what can we do?’

Mapper 50028/10394

Some of these actions to embed DCM into usual-care practice also helped to ensure that changes were maintained. In addition, the identification of achievable changes, such as when staff were encouraged to interact more with residents on a routine basis, was considered by participants as a good strategy for facilitating impact.

Summary

Multiple barriers to and facilitators of identifying, achieving and maintaining impacts were identified by participants. These included difficulties in measuring impacts for people with dementia; competing care priorities; levels of managerial, financial and home-level support for change; and staff members’ understanding and perceptions of DCM, of current care quality, of the need for change and of people with dementia. A focus on care improvements for mapped individuals can limit impacts for other residents and the maintenance of impacts over time.