The effectiveness of collaborative care for people with memory problems in primary care: results of the CAREDEM case management modelling and feasibility study

Job description and person specification

The development group was mindful to ensure that the job description and person specification did not overlap with existing roles. The group agreed that nurses would be a first obvious choice for this role (as in the PREVENT trial) but that other allied health and social care professionals might also be suitable. Therefore, the development of the job description focused on skills rather than specifying professional qualifications. The group was mindful that some professionals, for example doctors, were expensive and, therefore, possibly unaffordable. Important themes raised in the discussions included:

• Interaction. Case managers would benefit from sharing knowledge and experiences with each other on a regular basis.

• Mapping resources. Case managers would need to be proactive, ready to identify current resources to support people with dementia and their carers and able to identify gaps in the provision of services and the accessibility of resources.

• Managing the risk of overload. There was a risk that the role might overwhelm the case manager (physically or emotionally) and the feasibility study (WP2) needed to highlight any such overload. This risk could be mitigated by developing close working relationships with specialist teams.

Educational needs assessment

The challenge for those seeking to change clinical performance is to find ways of working with the grain of professional knowledge and practice. One approach to working with the grain is to use educational needs assessments. 55 Assessment of educational needs has the potential to accommodate variations in individual understanding and competence, learning preferences and skill mix. Such tailoring of an educational ‘intervention’ to the specific identified needs of practitioners also draws on diffusion theory (as mentioned earlier) in that the ‘intervention’ itself can be modified in such a way as to make it more likely to be adopted. The educational needs assessment was constructed to take into account practitioners’ knowledge of the local health and social care systems, to reflect the complexity of the potential care processes for people with dementia, and to acknowledge the complexity of the disease process itself. 56 It was intended to foster reflection, allow practitioners to create time and space to plan changes and enable them to tolerate tension and discomfort. 57

During the development of the educational needs assessment, the group discussed case management tasks, competencies required or desirable for them, risks to minimise and tools required to undertake the case management role successfully. These conversations resulted in the production of a ‘task matrix’, which informed the job description (see Appendix 1) and person specification (see Appendix 2) as well as the educational needs assessment tool (see Appendix 3). This matrix was designed to be work in progress, with the expectation that some further risks and tools might emerge in WP2.

The overarching topics considered most important by the group were how existing competencies of case managers should be assessed in meeting the emotional needs of a person with dementia and their carers, and how to develop the skills of the case manager in areas where these could be improved. This was seen as important as each case manager was likely to bring different experiences and attributes and an adult learning approach would build on these and not assume that a common training package would suit all.

The competencies, risks and tools identified in the task matrix were used as the basis for an educational needs assessment tool. This mapped competencies onto the dementia disease trajectory under five headings:

1. supporting patients at the time of diagnosis

2. managing breakdown of support systems

3. managing acute illness and hospital admission

4. supporting decisions about relocation

5. supporting the person with dementia and his or her family at the end of life.

Subheadings were agreed for each of the five main headings (see Appendix 3). This educational needs assessment was designed not only to be used in the case manager induction process but also as a topic guide for mentoring during active case management.

The group viewed mentoring as essential to the introduction of case management approaches in primary care, as the new case managers would be learning through the experience of working with a diverse patient and carer group. The task of the mentor was to support the case manager in ‘absorbing’ the needs of people with dementia and their carers, ‘digesting’ these needs to understand what was tractable and needed solution and ‘providing’ where possible for unmet needs. 58

The manual

The manual focused on topics such as communication with the person with dementia, behaviour problems, mobility, personal care, sleep, legal and financial issues, physical health, depression and anxiety and how to respond to psychotic or distressing symptoms.

Rules were implemented in the adaptation of the PREVENT manual, to systematically alter the language and tone of the US version. These included:

• Removal of all references to the person with dementia as the ‘loved one’ and replacement of this term with ‘relative’.

• Use of words such as ‘try’, ‘consider’ and ‘may’ to make the manual less directive and prescriptive and deletion of phrases such as ‘instruct the carer’.

• Replacement of phrases with a negative tone (advising carers not to do things) with more positive actions or things to try. Here the group added explanations for why the person with dementia might behave in a certain way and tried to make the manual more person centred by explaining that symptoms and difficulties were likely to vary from time to time and from person to person.

Information about local NHS and social care services and about the Alzheimer’s Society and local support organisations was added to the manual. Suggestions that the carer should speak to the case manager were included to make the manual more interactive. ‘Key points’ boxes and subheadings were added and the order of the contents was changed to provide a more coherent structure. Images were removed when these were inappropriate for the English context and distracted from the content. The development group felt that the manual required some additional sections and so it added an introduction and contents page; it also developed pages on asking for help, looking after yourself, physical health, aggression and agitation, depression and anxiety, and planning for the future.

London

In December 2011, the researchers wrote to 26 GP practices in Camden and Islington, inviting them to take part in the CAREDEM pilot study. Eight practices contacted the research team requesting more information; however, seven of these practices declined participation. Reasons given for declining participation were concerns about time, resources and current commitments, meaning that they were already very busy. One of these eight practices invited the researchers to present the proposed study at its practice meeting. After this meeting the practice agreed to participate in the study on the condition that the research team could guarantee Service Support Costs for a practice nurse, to backfill their time whilst working on CAREDEM.

Additionally, in January 2012 the researchers made contact with the North Central London Research Consortium (NoCLoR), which put them in touch with two further GP practices from NoCLoR’s local research clusters. One of these practices agreed to the researchers presenting the proposed study at its practice meeting in January 2012 and this practice subsequently agreed to take part in the research. At this point, as it was not possible to guarantee the Service Support funding, the practice that wished to take part unconditionally was recruited. During this process the researchers were further assisted by NoCLoR, whose staff negotiated with local commissioners on the study’s behalf to obtain Service Support funding for the CAREDEM study in London. This process facilitated engagement with the local research network and the researchers have retained the details of four GP practices who were interested in taking part in the main trial or in further research in this area but who could not commit to the pilot study. The list size of the recruited practice is 15,510 patients and the practice is served by 8.5 whole-time equivalent (WTE) GPs. The practice serves a population spread across two London boroughs, with deprivation scores of 21.5 and 27.

Norfolk

In Norfolk, 30 practices were contacted through the primary care research network and the DeNDRoN local research network and 12 expressed an interest in participating in the study. Practices were visited and the first to confirm involvement was recruited. The practice recruited covers a mainly rural setting with one large market town at the main practice and two satellite practices. The main practice was located adjacent to a community hospital. The practice had a list size of 14,400 patients and is served by 4.5 WTE GPs. Its deprivation score is 18.77.

Newcastle

Two GP practices were approached by the site lead and agreed to participate in the study. Adult services in one local authority were approached to assist with recruitment of the case manager and offered a seconded role of a full-time case manager to provide the intervention across the two GP practices. Funding for the role was brokered by the locality PCT. A social worker with considerable experience of working with people with dementia and their families was initially recruited but accepted another post at the beginning of the recruitment screening. A second experienced social worker with knowledge of dementia took over the role. Recipients of case management were unaffected by the change in personnel. The social worker was primarily located at the larger practice but also spent a significant proportion of time in adult services, which afforded access to social work systems.

Patients were recruited across the two sites. One was a large, two-centred practice with a central and a satellite practice covering the city centre plus a broad radius of suburbs; the other was a smaller practice covering one area of the city. The larger practice had a list size of 28,396 patients served by 15 WTE GPs, and the practice’s deprivation score was 27.8 (putting this practice in the fourth most deprived centile). The smaller practice had a list size of 6501 patients served by 4.25 WTE GPs, and its deprivation score was 29.7. Recruitment was more successful in the larger practice.

Inclusion and exclusion criteria

The target patient population for the CAREDEM WP2 study was people of any age with a diagnosis of any type of dementia (confirmed by secondary care assessment). Potential participants had to be living in the community at the point of recruitment and to have a carer (spouse, close relative, friend or other informal carer) who maintained regular contact. Those resident in care homes or being seen regularly by specialist dementia services were deemed to be being case managed already and were therefore excluded. Those unable to read English language information sheets about the study were also excluded.

Delays in achieving approval from local PCT research and development departments meant that recruitment of patients could not begin before July 2012. Practices recruited people with dementia and their carers over a 6-month period between July and December 2012 and followed them up for 5 months, the last interview being on 31 May 2013.

The WP2 protocol stated that patients would be invited to take part by their GP; however, in the London and Norfolk practices this was not realistic and eligible patients were screened and invited to take part by the practice nurse working in the case manager role, with the agreement of their GP. In the Newcastle practices the invitations were offered by the patients’ GPs and followed up by the research team.

The case manager or GP sent the patient and carer an information sheet, an opt-in form and a prepaid envelope and followed this up with a telephone call. Once the opt-in form or verbal consent form had been received, the research team was informed and contacted potential participants to answer any questions that they may have had. If the patient and carer were happy to proceed, the researcher arranged a visit at home or in another place specified by them to obtain informed consent and collect the baseline data. At the end of the baseline interview the researcher explained the next stages of the process and agreed with the participants that they would contact them for a follow-up appointment.

Directly after the baseline appointment the researcher informed the local case manager that the baseline assessment had been completed so that they could commence the intervention and completed a reflection log on the informed consent form process. Mentoring was provided by an Admiral nurse seconded to the project from Dementia UK, who visited the practices, carried out joint assessments with the case managers, communicated by telephone and e-mail with case managers on a regular basis and used the educational needs assessment and task matrix as the framework for discussing the case management role. Patients were followed up at 5 months (instead of 6 months as specified in the protocol) to allow completion of the study.

Quantitative data collection methods

Following the process of informed consent, interviews were conducted with the carer and the person with dementia individually, unless either person preferred the interview to take place with their relative in the room.

Demographic details, including date of birth, gender, marital status, level of education, employment status, ethnicity and relationship to care recipient, were obtained from participants at the baseline interview.

The carer completed the following assessments:

• The Neuropsychiatric Inventory (NPI)59 (on which the current sample size calculations are based). This is a validated instrument with 12 domains, completed in an interview with a carer to assess the prevalence of behavioural and psychological symptoms experienced by the person with dementia he or she is supporting.

• The Bristol Activities of Daily Living Scale (BADLS)60 was used to assess the functional impairment of the person with dementia.

• The 28-item General Health Questionnaire (GHQ-28)61 was used to provide a measure of the carers’ mood and quality of life.

• The European Quality of Life-5 Dimensions (EQ-5D) (see www.euroqol.org/about-eq-5d.html; accessed 23 June 2014) was used to assess carer quality of life and to generate quality-adjusted life-years (QALYs).

• The Client Service Receipt Inventory (CSRI)62 captures service utilisation data for the carer and the patient (including institutionalisation, extra patient care during therapy), unpaid carer support and other aspects relevant to health economics. The rates and dates of entry into institutional care are recorded.

The person with dementia was assessed in the following ways:

• The Mini Mental State Examination (MMSE)63 was used as a measure of cognitive function.

• The Dementia Quality of Life (DEMQOL) scale33 was completed if the patient scored ≥ 11 on the MMSE, in line with guidance. The DEMQOL scale is a generic measure from which it is possible to generate QALYs.

Qualitative data collection

In-depth qualitative interviews were conducted with members of a range of stakeholder groups to explore different perspectives on case management. Those interviewed included people with dementia (patients), carers, case managers, the case manager mentor (hereafter ‘mentor’), health and social care professionals and members of the research team. Separate interview topic guides were developed for each stakeholder group to reflect different levels of engagement with case management. During data collection, interview topic guides for all stakeholder groups were adapted through an iterative process in light of low levels of intervention delivered in practice and emerging themes.

Interviews were conducted by members of the research team at various stages of the feasibility study to capture processes and experiences of case management at different time points and to capture key events such as case manager training. The majority of interviews were conducted face to face with individuals; however, when this was not practically feasible, a small number of interviews were conducted with two or three participants in a group or by telephone.

Qualitative data management and analysis

All interviews were audio recorded, transcribed, checked and anonymised. In the initial stage of analysis individual team members (CB, KB, MP and LR) read and reread a number of transcripts to familiarise themselves with the data and identify preliminary themes. A series of data workshops were then held in which team members discussed these preliminary themes and developed a draft coding frame. This was then applied to a small number of transcripts and the findings were discussed in subsequent data workshops. Following a series of iterations, and informed by the theoretical domains framework,66 a final coding frame was agreed. All transcripts were coded in NVivo (version 9; QSR International, Warrington, UK) to facilitate data management using the final coding frame. In the next stage of analysis, the output for different stakeholder groups was reviewed. This led to the combination of some codes, the identification of new subcodes and the production of a narrative summarising the key themes for each group. These narratives were then compared and overarching themes identified across the stakeholder groups.

Recruitment and follow-up by site

In London, six participant dyads (12 participants – six people with dementia and their main carer) were recruited between 17 August 2012 and 18 December 2012. Three potential participants agreed to speak with the researcher but declined to participate in the study. Reasons provided for this were not having the time to participate (two people) and not wanting their relative with dementia exposed to research questioning (one person). In London, a female patient was referred to the study and agreed to meet one of the researchers but it became apparent that she was unlikely to have dementia. The researcher checked with the surgery, which had placed her on the QOF dementia register without a diagnosis of dementia confirmed by secondary assessment. The researcher wrote to her to thank her for her time and withdrew her from the study. Follow-up appointments for the recruited participants in London were completed at 5 months. Six dyads were successfully contacted and follow-up data were collected.

In Norfolk, nine participant dyads (18 participants – nine people with dementia and their main carer) were recruited between 7 August 2012 and 24 September 2012. Three patients who were invited to participate returned the opt-in form stating that they would not be interested in taking part but gave no details about why they were declining participation. In Norfolk, all 18 participants recruited into the study completed a follow-up appointment at 5 months.

Thirteen dyads plus one carer-only participant were recruited in the north-east. Ten dyads were recruited through the larger practice. Recruitment took place between 30 July 2012 and 27 November 2012. Only one patient returned the opt-in form stating that she was not interested in participation.

A further four participants were agreeable to their details being passed to the researcher; however, either the patient or the nominated carer declined participation when approached by the researcher. Reasons for declining participation included patient illness/hospital admission and other family or care commitments. Despite multiple attempts, the researcher was unable to contact an additional two patients who had expressed an interest in participation through the GP contact. Table 4 shows the derivation of the denominator for outcome assessment at all sites.

Demographics of participants at baseline

Tables 5 and 6 show the characteristics at baseline of the carers and the people with dementia, respectively.

Outcome measures

For each variable we provide an indication of the distribution of responses at baseline, usually in the form of a box and whiskers plot. Additionally, we present descriptive statistics for each of the measures of outcome and quality of life used in the pilot study. The purpose behind this is to facilitate the planning of any future studies. In particular, measures of variability are likely to inform sample size calculations; it is not intended that the data be used to make comparisons between the particular sites that participated in this study.

Neuropsychiatric Inventory

The NPI was chosen as the likely primary outcome measure for a definitive trial. The NPI assesses 10 behavioural disturbances occurring in dementia patients: delusions, hallucinations, dysphoria, anxiety, agitation/aggression, euphoria, disinhibition, irritability or emotional lability, apathy and aberrant motor activity. Higher scores suggest higher levels of disturbance. The distribution of total scores for the patients recruited to the feasibility study is provided in Table 7 and Figure 3.

FIGURE 3.

Neuropsychiatric Inventory total scores: box and whiskers plot of baseline values.

In Figure 3 (and subsequent box and whiskers plots), the horizontal line within each box corresponds to the median value, the lower and upper edges of the box correspond to the 25th and 75th percentiles and the whiskers indicate the range, except for any outlying values, which are indicated by circles and or stars. Figure 4 plots the NPI scores at 5 months against the baseline scores.

FIGURE 4.

Plot of NPI scores at 5 months against scores at baseline.

Most of the scores at 5 months are greater than the scores at baseline. There are four exceptions, three of which correspond to responses from London carers or patients. The mean increase in NPI total score is 4.3 (95% CI –0.31 to 8.56) (based on 50,000 bootstrap samples).

European Quality of Life-5 Dimensions visual analogue scale

This general health rating scale (0–100) was completed by carers. Higher values suggest a higher quality of life. Table 8 shows the descriptive statistics for the EQ-5D visual analogue scale at baseline and at the 5-month follow-up and Figure 5 shows a box and whiskers plot of baseline values.

TABLE 8 - European Quality of Life-5 Dimensions visual analogue scale: descriptive statistics

SD, standard deviation.

Time point	Centre	n	Minimum	Maximum	Median	Mean	SD
Baseline	Norfolk	9	65	90	80.0	77.22	7.120
	London	6	60	92	77.5	75.00	11.900
	North-east	14	20	100	72.5	68.57	21.700
	Total	29	20	100	75.0	72.59	16.571
5-month follow-up	Norfolk	9	40	95	75.0	72.78	18.047
	London	4	40	80	69.5	64.75	17.231
	North-east	4	70	95	80.0	81.25	10.308
	Total	17	40	95	75.0	72.88	16.507

FIGURE 5.

European Quality of Life-5 Dimensions visual analogue scale: box and whiskers plot of baseline values.

Bristol Activities of Daily Living Scale

The BADLS was designed specifically for use in patients with dementia and assesses 20 daily living abilities. A score of 0 suggests total independence and a score of 60 suggests total dependence. Table 9 shows the BADLS scores at baseline and at 5 months’ follow-up and Figure 6 shows baseline values as a box and whiskers plot.

TABLE 9 - Bristol Activities of Daily Living Scale total scores: descriptive statistics

SD, standard deviation.

Time point	Centre	n	Minimum	Maximum	Median	Mean	SD
Baseline	Norfolk	9	1	44	24.0	22.78	17.548
	London	6	8	40	17.0	19.83	12.937
	North-east	14	1	32	13.0	15.00	10.720
	Total	29	1	44	15.0	18.41	13.550
5-month follow-up	Norfolk	8	4	48	23.0	24.00	15.381
	London	4	8	30	14.5	16.75	10.372
	North-east	4	1	29	4.0	9.50	13.178
	Total	16	1	48	17.5	18.56	14.325

FIGURE 6.

Bristol Activities of Daily Living Scale total scores: box and whiskers plot of baseline values.

General Health Questionnaire

The GHQ-28 has possible scores across four domains in the range from 0 to 84, with higher scores suggesting higher levels of psychological disorder. The four domains are (A) somatic symptoms, (B) anxiety and insomnia, (C) social dysfunction and (D) severe depression. Table 10 shows the GHQ-28 total scores at baseline and at 5 months’ follow-up and Figure 7 shows the GHQ-28 total scores at baseline as a box and whiskers plot. Table 11 shows the domain scores at both time points and Figure 8 shows the baseline domain scores as a box and whiskers plot.

TABLE 10 - General Health Questionnaire total scores: descriptive statistics

SD, standard deviation.

Time point	Centre	n	Minimum	Maximum	Median	Mean	SD
Baseline	Norfolk	9	14	54	20.0	24.44	13.182
	London	5	7	21	20.0	17.00	5.958
	North-east	14	9	71	15.0	23.00	16.530
	Total	28	7	71	17.5	22.39	13.974
5-month follow-up	Norfolk	7	8	45	18.0	21.00	12.728
	London	3	11	32	16.0	19.67	10.970
	North-east	4	9	28	11.0	14.75	8.921
	Total	14	8	45	15.5	18.93	10.930

FIGURE 7.

General Health Questionnaire total scores: box and whiskers plot of baseline values.

TABLE 11 - General Health Questionnaire domain scores:a descriptive statistics

SD, standard deviation.

A, somatic symptoms; B, anxiety and insomnia; C, social dysfunction; and D, severe depression.

Time point	Centre		Section A	Section B	Section C	Section D
Baseline	Norfolk	n	9	9	9	9
		Mean	5.56	6.44	9.44	3.00
		SD	2.455	3.712	4.157	4.416
	London	n	5	5	5	5
		Mean	3.20	5.60	8.00	0.20
		SD	1.789	2.510	2.915	0.447
	North-east	n	14	14	14	14
		Mean	5.79	6.29	8.43	2.50
		SD	4.264	5.902	2.503	5.460
	Total	n	28	28	28	28
		Mean	5.25	6.21	8.68	2.25
		SD	3.460	4.677	3.116	4.600
5-month follow-up	Norfolk	n	9	7	9	8
		Mean	7.22	6.57	7.22	2.13
		SD	3.898	4.036	2.682	3.643
	London	n	3	3	3	3
		Mean	4.33	6.67	8.00	0.67
		SD	4.041	4.509	2.646	0.577
	North-east	n	4	4	4	4
		Mean	3.25	4.75	6.75	0.00
		SD	2.872	6.850	0.500	0.000
	Total	n	16	14	16	15
		Mean	5.69	6.07	7.25	1.27
		SD	3.911	4.714	2.236	2.764

FIGURE 8.

General Health Questionnaire domain scores: box and whiskers plot. A, somatic symptoms; B, anxiety and insomnia; C, social dysfunction; D, severe depression; and Tot, total.

Mini Mental State Examination

The range of scores on the MMSE is from 0 to 30, with lower scores suggesting worse cognitive impairment. Table 12 shows the MMSE scores at baseline and at 5 months’ follow-up and Figure 9 shows the baseline MMSE scores as a box and whiskers plot. A MMSE score of < 10 suggests advanced dementia (Table 13).

TABLE 12 - Mini Mental State Examination scores: descriptive statistics

SD, standard deviation.

Time point	Centre	n	Minimum	Maximum	Median	Mean	SD
Baseline	Norfolk	7	9	27	19.00	17.57	7.786
	London	5	12	29	23.00	20.20	7.050
	North-east	13	4	26	21.00	20.15	5.757
	Total	25	4	29	21.00	19.44	6.436
5-month follow-up	Norfolk	6	7	24	20.00	17.17	7.548
	London	3	22	29	23.00	24.67	3.786
	North-east	4	15	27	20.00	20.50	5.196
	Total	13	7	29	22.00	19.92	6.512

FIGURE 9.

Mini Mental State Examination scores: box and whiskers plot.

TABLE 13 - Mini Mental State Examination category at baseline

MMSE category	Centre			Total
	Norfolk	London	North-east
≥ 10	6	5	12	23
< 10	3	1	1	5
Total	9	6	13	28

Dementia Quality of Life scale

The DEMQOL is a quality of life measure in which higher scores imply better quality of life. Participant total scores at baseline and at 5 months’ follow-up are shown in Table 14; Figure 10 displays baseline values as a box and whiskers plot. The DEMQOL scale includes five domains, three of which are reported in Table 15 (‘feelings’ = health and well-being; ‘memory’ = cognitive function; and ‘everyday’ = daily activities and looking after yourself). Baseline domain scores are provided in Figure 11 as a box and whiskers plot.

TABLE 14 - Dementia Quality of Life scale total scores: descriptive statistics

SD, standard deviation.

Time point	Centre	n	Minimum	Maximum	Median	Mean	SD
Baseline	Norfolk	4	91	107	96.50	97.75	7.274
	London	4	84	98	96.00	93.50	6.455
	North-east	12	72	108	97.50	92.67	13.282
	Total	20	72	108	97.00	93.85	11.008
5-month follow-up	Norfolk	4	90	111	98.00	99.25	9.979
	London	3	80	103	84.00	89.00	12.288
	North-east	4	75	111	92.50	92.75	17.017
	Total	11	75	111	92.00	94.09	12.888

FIGURE 10.

Dementia Quality of Life scale total scores: box and whiskers plot.

TABLE 15 - Dementia Quality of Life scale domain scores: descriptive statistics

SD, standard deviation.

Time point	Centre		DEMQOL: feelings	DEMQOL: memory	DEMQOL: everyday
Baseline	Norfolk	n	4	4	4
		Mean	42.75	20.25	34.75
		SD	6.397	1.500	1.500
	London	n	4	4	4
		Mean	42.25	19.50	31.75
		SD	1.708	3.109	3.686
	North-east	n	12	12	12
		Mean	39.42	19.92	33.33
		SD	8.372	3.848	2.674
	Total	n	20	20	20
		Mean	40.65	19.90	33.30
		SD	7.066	3.243	2.755
5-month follow-up	Norfolk	n	4	4	4
		Mean	44.00	20.00	35.25
		SD	5.715	4.082	1.500
	London	n	3	3	3
		Mean	38.67	17.67	32.67
		SD	6.351	4.726	3.215
	North-east	n	4	4	4
		Mean	38.75	21.00	33.00
		SD	10.532	2.944	3.830
	Total	n	11	11	11
		Mean	40.64	19.73	33.73
		SD	7.632	3.744	2.936

FIGURE 11.

Dementia Quality of Life scale domain scores: box and whiskers plot.

Safety: serious adverse events

In London, two serious adverse events were reported. One involved a carer being admitted to hospital and one involved a patient (from a separate dyad) being admitted to hospital. These admissions were the result of falls and were unrelated to the study but were expected because of the nature of the patient and carer population. In the north-east, four serious adverse events were reported. One patient was hospitalised twice, both times because of a fall. Another patient suffered a fall and one patient was hospitalised with suspected pneumonia. Again, these serious adverse events were expected because of the age of the patients recruited. No serious adverse events were reported in Norfolk.

Costs

Case management salary costs for WP2 amounted to £52,890 across all sites. Training and mentoring by an Admiral nurse cost £5201 and £6273, respectively.

Outcome measures for patients

Only two outcome measures were administered to patients: the MMSE and the DEMQOL scale (a measure of health-related quality of life for people with dementia). The MMSE was administered first as the DEMQOL scale is not appropriate for people with severe dementia (MMSE score < 10). In general, the assessment with patients took between about 30 and 60 minutes. Although some patients seemed to take the assessment in their stride, it was clear that others became anxious and, at times, seemed stressed by the questions:

After the assessment, I asked the patient how he had felt about answering all of these questions. He said that there were quite a lot and he was worried that he hadn’t done very well. I reassured him that he had done well.

Field notes, B04

Outcome measures for carers

Given the option, carers generally preferred the self-completion questionnaires to be administered by the researcher rather than completing them independently.

Type and frequency of contact

Details were recorded for 63 contacts, the majority of which were with patients and/or carers (n = 59); it was not clear whether the case manager had seen the patient, the carer or both for 15 contacts. Only four contacts with other professionals were recorded: two with GPs, one with an old age psychiatrist and one with staff from the local Alzheimer’s Society.

The number of contacts with patients (either alone or with the carer) ranged from zero to eight (mean 1.08) whereas the number of contacts with carers (either alone or with the patient) ranged from zero to six (mean 1.42). The median number of contacts per patient–carer dyad differed significantly by case manager (independent samples median test p < 0.001) (Table 20). Although two of the case managers predominantly had a single contact with each of the patient–carer dyads recruited to the study, one case manager had an average of just over five contacts per patient–carer dyad. This case manager was also the only one to record any contacts with patients only (see Table 20). It is noteworthy that the case manager with the greatest number of contacts was one of the practice nurses who had only half a day per week allocated to case management.

To achieve this number of contacts within the allocated hours, the case manager relied extensively on telephone follow-ups, although she also had an initial face-to-face meeting with each patient–carer dyad. The type of contact varied significantly by case manager (applying an extension of Fisher’s exact test p < 0.001) (Table 21).

Needs identified

The 14 areas of need included in the paperwork were grouped into five broad areas for analysis: daily living and routines (including informal or social networks); physical well-being and medication; emotional well-being and support (including willingness to accept help, adjusting to diagnosis and managing transitions); coping with dementia-related problems (including behavioural and psychological symptoms); and financial and legal needs (including access to benefits and lasting power of attorney). The frequency with which needs in each of these areas were identified for patients and carers is shown in Table 22. Case managers were more likely to document unmet needs than met needs or areas in which there were currently no needs for both patient and carer. Unmet needs were more likely to be recorded for patients than for carers in all areas with the exception of financial and legal needs, which were documented more frequently for carers (see Table 22).

Examining the needs identified by different case managers indicated that, although they identified a similar range of needs in relation to patients, there were significant differences in the types of carer needs identified (p < 0.01). The areas of need with most variation between case managers were daily living and routines (which accounted for between 9.1% and 50.0% of carer needs identified); emotional support and well-being (accounting for between 0% and 47.1% of carer needs identified); and financial and legal needs (accounting for between 5.9% and 54.5% of carer needs identified). When examined by the professional background of the case managers, there were no significant differences in the areas of need identified, suggesting that the variation reflected personal differences in style rather than professional training.

Actions taken

The actions taken for unmet needs are summarised in Table 23; as can be seen there was a discrepancy between the number of unmet needs identified (n = 116) and the number of actions recorded to address these (n = 58). Although a small number of actions were recorded that were not specifically linked to unmet needs, there was no documented evidence of any action being taken for almost half of the unmet needs identified. There was only one recorded instance of a case manager giving a patient–carer dyad one of the leaflets produced in WP1.

The extent to which actions were taken by area of need is summarised in Table 24. Seven unmet needs that were being addressed by another professional have been excluded. Overall, at least one action was recorded for 25.7% of patient unmet needs and for 48.6% of carer unmet needs. The proportion of needs for which actions were recorded varied significantly by area of need for carers (p < 0.001) but not for patients. Actions were most likely to be recorded for financial and legal unmet needs; this may reflect the clear referral pathway for such needs.

There were significant differences between case managers in the likelihood of some actions being recorded for unmet needs (range 25.0–51.8%, p = 0.05); further analysis indicated that the proportion of patient unmet needs with actions was similar for all case managers, whereas the proportion of carer unmet needs with actions varied significantly (from 25.0% to 81.8%, p < 0.05). The differences between case managers were not linked to their professional background. Case managers were equally likely to record actions for patient and carer unmet needs in all areas of need with the exception of needs relating to emotional well-being and support, which were more likely to be addressed when identified for carers than for patients (p < 0.05).

The discrepancy between unmet needs and actions recorded may in part reflect the different judgements of the researchers and case managers, as in several sets of notes the case manager explicitly stated that the patient and carer had ‘no unmet needs’ despite having clearly documented a number of areas in which there appeared to be unmet need. One example of such a discrepancy, mentioned earlier, is illustrated in Table 25.

Views on the documentation

During interviews and informal discussions with case managers and other team members we explored the reasons for the limited use of the documentation and lack of systematic recording of activities. Given that the case managers were experienced professionals within their own disciplines and were used to the requirement to record contact with patients/clients, we had not anticipated the problems with documentation. Key reasons for the limited use of the documentation are summarised in Box 1 and explored in detail below.

Core knowledge and skills

In terms of knowledge and skills required by case managers, participants expected them to be able to provide information around dementia and local services. Participants felt that case managers should have sufficient knowledge to signpost people to appropriate services and provide information. Access to information about dementia was crucial in enabling participants to manage the practicalities and uncertainties of the condition and to empower patients and carers to understand their condition and plan for the future:

Professional carers that’s their vocation they understand it, they’ve been trained for it. If you’re a son, the child, who’s been doing something else you don’t know what the nature of the beast is and if you misunderstand it you can say ‘well that person is just being difficult’ even though they’ve never, they’ve been a beautifully loving person up until that point when they sort of change. If you don’t, if you haven’t been counselled, it hasn’t been explained to you, you misinterpret that can cause for stress. The more you understand this disease and the behavioural symptoms then the better you are to deal with it. So again somebody like [case manager] you know being a point of contact.

Care, A04

Professional background

Most patients and carers expressed no strong preference regarding the professional background of case managers. Although one participant felt that the nursing/medical status was important, another patient–carer dyad felt more comfortable with a non-medical professional as so much of their life was already medicalised. Benefits of both a nursing and social work background were identified, but neither was seen as a core requirement. From the perspectives of patients and carers, nurses were perceived as providing a more direct link to the GP and advice and support around comorbidities and minor ailments:

And obviously [case manager] is a nurse and is that important to you that she’s got a nursing background, a medical background?

Yes, oh yes it’s always very important, yes it’s because as I say I have got different things wrong with me but I feel pretty good most of the time, I don’t feel like an invalid, not yet anyway.

Patient, A02

In contrast, social workers were seen as closely linked to formal or paid support services. There was also a feeling that there were established routes for seeking help with medical issues, whereas patients and carers were less familiar with where and how to seek help for social problems and therefore valued the specialist knowledge of case managers with a social work background:

I don’t think the clinical side probably comes into it, it’s probably more having access to knowing what services are available and more helpful in that way. I mean obviously the doctors would be the ones that would be doing the medical side of things as regards the illness, but it’s more about managing the problem and it wouldn’t make any difference to me where it came from, and what department or whatever, so no, it’s not a problem.

Carer, B01

Interpersonal skills

In describing the skills needed for case management, patients and carers emphasised interpersonal skills such as empathy, the ability to listen, making people feel at ease and not rushing people. Advocacy was also suggested as an important professional skill by one carer. In addition to skills, personal attributes of case managers were considered important. Case managers were described positively and adjectives were used such as ‘nice’, ‘pleasant’, ‘bubbly’, ‘lovely’, ‘easy to talk to’, ‘a friendly face’, ‘comforting’ and ‘supportive’:

I think the most important thing is the care. That’s what I think. Because having worked in that sort of industry there were people who came along that obviously had fantastic qualifications to see the people that I was looking after but they didn’t seem to have any empathy.

Carer, A02

Potential and actual benefits of case management

The perceived and actual benefits of a case manager from the patient and carer perspective included acting as a first point of contact and also as a ‘safety net’ for all concerns, potentially providing a one-to-one, therapeutic relationship for future ongoing support and offering information and direct links to the practice and other services. Some participants suggested that the case managers should also be able to take on a more active role in negotiating or brokering with local services. Participants valued the ability of case managers to address both health-care and social care problems. Patients and carers were generally satisfied with their experience of case management and several participants were clear that they wished the service to remain in place (both for their own benefit and to benefit others). The service created feelings of security or comfort for some patients and carers. In addition, a number of practical benefits were reported, including easier access to GP appointments, benefit checks and links with other services:

What was very useful was when I told her that trying to get appointments is really difficult; she’s actually used a pop-up system now in the surgery to get the earliest appointment without me having to say ‘is it possible, can you bring the appointment a bit forward?’ Because I might be off on a particular day. She used the pop-up system so it comes up on the screen to let us have, without debating, the earliest appointment in view of my being a carer and at work and mum being not been able to wait a long time for an appointment.

Carer, A06

At the minute, we’re going through a care plan [for a personal budget], and that’s where you get an amount of money and it’s done through the council, which we never know about. It was [case manager] who directed us in that way and we can go and spend it like – [patient], basically, can go out and spend it. It covers your care needs and everything, and that’s something we never knew about. It was just [case manager] directed us in that, and checking that our benefits were in place.

Carer, B02

However, outcomes were less positive for some patients and carers. For example, one carer was waiting for information on whether or not her mother could keep a cat in sheltered accommodation:

It’s the one thing that my mum said that she really, really would love to happen but as I say I don’t know whether it would be possible.

And has there been any follow up with [case manager]?

We haven’t heard anything. No we haven’t heard anything yet. But it wasn’t that long ago so maybe she’s tried to get in touch with them.

Carer, A02

A key aspect of case management valued by patients and carers was the idea of background support that could easily be called on at a time of need. This was described as providing a sense of back-up, a safety net, security and knowledge that help was available if needed. This concept of contingency was considered key to avoiding or averting crisis:

She [case manager] was good. She said if there was anything, ‘Don’t sit there worrying. Pick up the phone and we’ll sort something out.’

Did you ever have the opportunity to pick up the phone and call her?

No, no, but it was just nice to have that safety blanket there, because I’ve got her number in my phone now, so if there’s anything that comes up, or anything like that, I know the phone number is there to get in touch with [case manager]. So it’s really good.

Carer, B02

For patients and carers to feel comfortable about contacting the case manager in the event of difficulties, there needed to be time and opportunities to develop a deeper relationship. Regular contact, the provision of case management from the early stages of the condition and continuity were seen as crucial for establishing a good relationship:

I think it needs to be regular […]

Right, even from that early stage?

I think so.

Yes.

So that then when it gets to a stage when we really do need help we’ve got the confidence in the person you’ve been seeing all along.

PWD and carer, C04

Face-to-face and telephone contact were both considered acceptable, although face-to-face contact was often preferred as it facilitated relationship building better than telephone contact. One participant would have preferred more face-to-face visits at regular intervals rather than just telephone follow-ups:

I was hoping that we’ll get regular support and I think visits on a regular basis . . . it would be nice to think that I know that we are going to have another visit say every 3 months or something like that.

Carer, C04

Clarity over the case manager role

The remit of case managers was unclear to some patients and carers and there was a degree of uncertainty about the specific areas of support available:

Do you think a case manager could have helped to support you in that role, or . . .

Eeh, I don’t know, is it their job to do that is it?

Well, case managers can support the carer and the person with dementia as well, so, or did you feel that you navigated it fine by yourself?

Well no, I didn’t – I had to go to the, I’m still going to the council, I was there yesterday.

Carer, B13

In addition, there was some overlap of roles, with dementia advisors (piloted in one site) and case managers being perceived as offering similar types of support. The potential for case management to offer continuity of care was one aspect of case management that was potentially distinct from other services. Participants reported having been discharged from other services and even in primary care found it difficult to consistently see the same GP unless they were prepared to wait for an appointment:

We never had that [ongoing contact] before. It was just like, we’d got the diagnosis, go to the doctors’ appointments and things, and then that was it; we were just sort of left.

Carer, B02

Because very often you can’t get in to see a doctor

Right, is it difficult?

It can be. It is yes. I mean I just see whoever, not like the old days when you used to see your doctor.

Patient, C02

Implementing case management in practice

Key issues for patients and carers included access to and availability of the case manager, the most appropriate time for them to access case management and the perceived severity of the problems that the case manager would deal with.

Core knowledge and skills

Participants generally felt that having an interest in working with people with dementia was the most important aspect of the role:

I think it’s knowing something about dementia and handling dementia.

GP

It seems to me that you need to be a dementia specialist but you don’t necessarily need to be a nurse.

Voluntary sector worker

It was suggested that knowledge about dementia was crucial for supporting carers, who often had limited understanding about the behavioural changes and illness trajectory of dementia. For carers, an empathic approach and practical strategies were seen as more important than medical knowledge:

So a lot of carers who come to us are struggling with coming to terms with how different that person has become, with perhaps that they’re beginning not to recognise them, that they are in some cases quite difficult, their behaviour is difficult at times. So it’s about information but also a discussion then around how that impacts and kind of validating how that person feels about that and helping them to think about strategies and communication techniques that will improve that, because they’re dealing with it all day every day. So slightly the medical knowledge is almost less important than how you deal with that day in and day out.

Voluntary sector worker

Professional background

The professional background of the case manager was not felt to be crucial to adopting a case manager role.

Well I think that the important thing is really the background of the worker and the fact that they’ve got experience in working with people with dementia and an interest in continuing to do so. So their professional background is less important I think than that. But I wouldn’t have said that it needed to be a role that any particular profession is best at, I think it very much depends on the individual rather than what their background is.

CMHT worker

Although many respondents felt that a clinical background was not important, some professionals thought that a nursing background would equip case managers with appropriate skills:

I do think the nursing team are the place where most of the skills are to help to do things like case management. Yes, there’s the medical and there’s tablets now so doctors suddenly and neurologists suddenly get all excited about dementia, but actually a lot of it is to do with a more nursing perspective and looking at problem-solving around practical things a lot of the time.

GP

One participant thought that the stigma associated with having a social worker might prove to be a barrier to accepting case management in the early stages of dementia and suggested that a nurse might be more acceptable to patients and carers:

We do get people who find it very difficult to feel that they’ve got social workers involved, there’s still that certain stigma involved isn’t there? Having you know, in your family, having a social worker. So I can see that particularly at an early stage there could be some advantages in it being a practice nurse.

Voluntary sector worker

Interpersonal skills

Some participants identified the importance of good interpersonal skills and the need to build up the relationship with the patient and carer over time:

Going into someone’s home and assessing the situation fully takes a lot of time and my own experience is that carers are often a little bit anxious about what you’re going to suggest and what you’re going to try and do and whether you’re going to be critical of – they might know that their care is falling short of the ideal a lot of the time but it’s their husband or their wife and they want to carry on. I think people are very scared and it takes a while to build up a relationship, to actually develop that – so I think half a day a week in a practice like this which has got a large elderly population, you could easily use that and double it and possibly more.

GP

Although some professionals recognised the value of a series of face-to-face contacts, they suggested that telephone calls could also be an effective way of maintaining links with patients and carers:

Well I think it depends on the patient but . . . I don’t think it has to be a rigid structure. I think it doesn’t necessarily have to be visits; I’m a big fan of the phone call. I think because they take two minutes, you know, but actually people just really appreciate the ringing up to say ‘oh you know we talked about this last time, how’s it going?’ and ‘oh it’s great!’ or ‘no it’s not quite working’ or ‘we’ll do some tests’. It takes no time at all but patients really appreciate it, or patients and carers.

GP

Holistic approach

Professionals thought that case managers needed to use a holistic approach that allowed them to ‘see the bigger picture’. Rather than a medical focus an in-depth exploration of the impact of the disease was required:

If there were specific medical questions they [case managers] would be able to direct somebody to whoever could give them those answers. It’s more important from our point that it’s a sensitive discussion around ‘how does that feel for you?’ ‘Do you feel you are going to be able to look after, is the family going to be able to do some of this looking after?’ ‘What impact is that going to have on you, do you need some support around you?’ That sort of thing. In a, you know [laughs] a more sensitive way maybe than I’ve just done but that’s the discussion that we need somebody to have and I think that’s about the way you have that discussion rather than a particular expertise around the medical side of dementia. I can’t see that that would make that much difference.

Voluntary sector worker

The lack of attention of existing services to the psychosocial aspects of diagnosis was highlighted by the recent professional experience of a dementia support worker:

I saw a couple in [place] last week and it’s a recent diagnosis. She said, ‘of all the medical professionals, no one has asked me how I feel about it’. This had been going on 2 months. Had the diagnosis, she was seeing someone about medication. ‘Nobody has said to me, except for you, how are you feeling?’

Voluntary sector worker

Potential and actual benefits of case management

Professionals focused on potential benefits to those with dementia, their carers and then finally the GP practice. Case management was seen as potentially benefiting the person with dementia by providing continuing care, with an individual maintaining contact over a long period of time and dealing with problems at an early stage. It was seen as complementary to existing secondary care and social services, neither of which had the capacity to monitor patients and carers nor to provide support at an early stage in the illness trajectory:

We do know that people with dementia, their needs change dramatically over time in different ways and ideally we would keep them on and monitor and follow up and provide support as their needs do change, but that’s impossible. So they have to be discharged, and then hopefully are re-referred before a crisis occurs but sadly it’s often at the point of crisis so, that’s one area where the case manager in primary care can plug that gap.

CMHT worker

So people at the beginning of their dementia actually don’t come to us. It’s when they’re wandering or they’re not safe or if they’re a risk to themselves.”

Commissioner

The lack of routine reviews for people with dementia was highlighted as a shortcoming of existing services (although the introduction of the dementia reviews within primary care will ensure at least annual follow-up):

That would be great if everybody who was given a diagnosis had a review a year later because they don’t at the moment. . . . I sit there at these multidisciplinary team meetings, and people write in and say: ‘Mr Bloggs has got dementia and it’s got worse. Can he be re-reviewed?’ Basically, the mental health team will say, well, unless there are any specific behavioural problems, unless there are any other particular problems, and something has changed; if it’s just the fact the dementia’s got worse, they won’t pick them up.

Voluntary sector worker

By introducing regular, informal contact with patients and carers, case management was seen as having the potential to identify problems at an early stage and facilitate appropriate support:

I think that if you can induce sort of joined up care and if you can almost form a circle around a patient, these vulnerable people and if something happens or you’re worried or something goes wrong or they’re not quite so well, if you can communicate with other people involved often you can catch them. Whereas if you don’t know who’s involved it can take you ages or it can send you off on another referral pathway or get too many cooks involved and I think that’s the secret of looking after these people – is to have a few people involved but who are involved all of the time. The advantage of it is that I think the patient gets better care, things get picked up sooner, there’s less upheaval for them if they’re moved from one person to the other, there’s less duplication of investigations and possibly conflict even of treatments and from a personal point of view as a GP it’s actually less hard work if you know who to ring and you’re all on the same page.

GP

It was also suggested that carers would benefit from early and ongoing support:

From our point of view, the earlier that the carer is recognised as part of the care that needs to be given, the better, so if they’re part of care planning right from the beginning then they’re going to feel recognised and valued. They’re also going to recognise some of the stresses on themselves and be able to make informed decisions about how much care they want to give and how much they want to ensure is given by other services. So you just get a more balanced development in terms of a caring role. I think unfortunately what quite often happens is that carers arrive here at the point where they’ve hit a brick wall.

Voluntary sector worker

There were also perceived to be benefits for the practice, in terms of potentially saving appointment time, having a specialist in dementia within the practice and, on a personal level, the opportunities for professional development for any practice nurse who took on the role of case management:

I think several things for the patients and their carers, someone in the practice who was known to them as having an interest in dementia and would be a point of contact for them. And also some professional, not, professional development is not quite the right word, but some increasing professional self-esteem really for [case manager] who was doing it.

GP

All participants found it difficult to evaluate the extent to which these potential benefits of case management had been realised in practice. The lack of feedback from case managers about their work with patients meant that GPs were often unaware of which patients and carers had received the service:

To tell you truthfully, I have no idea if you had picked the two, the people up that I referred and I have no idea what has been done with them on behalf of the project and I have no idea if it’s made a difference.

GP

Health and social care professionals beyond primary care similarly found it difficult to assess the impact of case management other than having received a small number of referrals or requests for information from the case manager. Even when positive feedback from patients and carers had been received, there was recognition that they were often very grateful for help and that it was often difficult to get anything other than positive feedback:

Certainly one or two, and certainly good feedback, they like her . . . I think patients and carers obviously kind of value almost anything that’s offered and that they’re very grateful for any additional support that can be provided and particularly if it’s just on their doorstep . . . you get good feedback, but actually in terms of being constructively critical you need to actually dig a bit deeper don’t you?

CMHT worker

Clarity over the case manager role

Although, in theory, professionals could see that case management potentially ‘plugged a gap’ in services, in practice there was confusion over the boundaries between case management and other professional roles. Concerns were expressed over potential duplication of roles and the difficulties of identifying the most appropriate referral pathway:

I just remember at the time we all sat there and said, ‘Well, where do you fit in?’ This was the mental health nurses and myself: ‘Where do you fit in compared to all the people who are already visiting these people with dementia?’ . . . I think it was felt that there was going to be some duplication.

Voluntary sector worker

The provision of support for people with dementia and their care is so stretched that somebody else providing a kind of direct link between if you like the primary care and other services would be a good idea. So yes, I was very supportive of the plan . . . I think that the problem sometimes is that roles aren’t clearly, or maybe not clearly defined enough, between for example our community mental health nurses, the dementia advisor that we work with and the case manager. And I do admit sometimes that, when I’ve got somebody who I know needs support, I’m not at all sure necessarily who would be best to refer to. And so, if I think if anything I think the definition of roles and responsibilities needs to be much clearer for it to be most effective.”

CMHT worker

Implementing case management in practice

Several practical issues were raised about the implementation of case management in practice. The time required for the role was identified as a potential issue by several professionals:

I know [case manager]’s feeling quite pressured in actually trying to find the time to do this – my impression was that this was feeling like something additional that had to and I think it’s just that whole thing of having to, even if you’ve got funding for something, you still have to fight for the time and fight for other people to recognise it as being important, and that’s quite hard sometimes.

GP

Although home visits were recognised as taking significant time, there was a strong view that the ability to offer home visits was essential with this client group, partly because of mobility issues for older people but also to gain a better understanding of their social environment:

You know you see the nicest turned out people who they make an effort, they come into the doctors but you go home and then you realise there’s mouldy food in the fridge and the milk’s still on the doorstep or they’re sleeping downstairs or you walk in and you get a picture straight away usually, particularly about circumstances. . . . If they know they’re coming to the doctors, often you dress and think appropriately and plan that out. Also, the other thing is quite often if they do have dementia and unfortunately they quite often forget their appointment and it means that you don’t get any follow-up anyway.

GP

For the purposes of the feasibility study, patients with dementia were identified from the practice dementia registers and so the patients who were included were at different points on the illness trajectory. We asked professionals when they felt that case management should be provided. Overall, early intervention was seen as the best practice, although views varied whether it should be offered at diagnosis or slightly after diagnosis (e.g. on discharge from the CMHT at the memory service):

Probably it should happen at diagnosis so that the patient and the carers are aware that the service is there without being awfully intrusive, so that they get used to the idea. So I would have thought from the word go . . . and then we go in say once every 3 months or if there’s a crisis, or even once every 6 months depending on what they’re like.

GP

I don’t think it should be offered at diagnosis, because I think that’s where in fact patients get the most contact from us, and in particular if somebody is starting on Alzheimer meds [medication] then they’re seen sort of fairly regularly by ourselves. I think what would be helpful would be for us to be able to offer the case manager at the point of discharge from ourselves and . . . maybe we’ll arrange for you to see her once just so you can say ‘hello’ and then you know that she’s there if you’ve got any concerns. I think that as I said before, I think that would kind of plug the gap really, and to some extent at least, rather than people feel they’ve been discharged so they’re not quite sure where they can go now to get help.

CMHT worker

Some of the GPs noted that similar systems of providing a contact for a known person within the primary care team were already in place for other patient groups, such as those with cancer:

We’ll have a cancer watch list so as soon as they’re diagnosed there may be absolutely no need at that time but I’ll make contact and the district nurse will make contact so at that point there might be nothing, but at least they’ve met us, we’ve said ‘hello, we’re available get in touch’.

GP

Potential barriers to case management were that some people often do not identify themselves as a ‘carer’, particularly in the early stages of their relative’s dementia, and that people from some minority ethnic groups were reluctant to be diagnosed because of the perceived stigma:

So if you look at some of the minority ethnic communities often there’s a reluctance to get a diagnosis for dementia; there’s still a lot of stigma attached to it . . . and even more of a difficulty in terms of people recognising themselves as a carer because it’s just seen as the role within the family. I’ve done some work with older Bangladeshi women . . . and one of the things that that you discover is that there isn’t a word in their language that directly translates the word carer because there isn’t that concept. Do you see what I mean? It’s just seen as within the family, that’s what happens.

Voluntary sector worker

Advantages and disadvantages of siting case management in primary care

A range of advantages and disadvantages of case management being based in primary care was identified (Box 2). Ease of access was identified as a key benefit; professionals working for a local voluntary service felt that being based at the GP surgery would facilitate uptake of support:

If we sat in a surgery we’d pick up a lot more trade, wouldn’t we? We’d have a lot more people than we do at the minute, if we were based in the surgery.

Voluntary sector worker

Overall, the benefits of being based in primary care far outweighed the disadvantages identified.

Although primary care was seen as the most appropriate site for case management, the importance of being linked with other local services (either the voluntary sector or CMHTs) was highlighted. It was thought that this would help clarify role boundaries and facilitate joint case work. One suggestion was for the case manager to attend CMHT meetings:

I know she’s on the end of the phone but . . . maybe not weekly, but maybe every now and again [she could come to the CMHT meeting] to discuss the people that she’s got on her caseload and the people we’ve got on our caseload, and in particular the ones that are shared.

CMHT worker

Embedding case management in primary care

A key advantage of being based in primary care was the potential for the case manager to liaise with colleagues in the event of concerns about individual patients and carers. The extent to which these links were enacted in practice varied considerably. There seemed to be particular challenges in developing effective working relationships for the case manager from a social work background who had not previously been known to the practices. From the GPs’ perspectives, the lack of visibility of the case manager, together with the lack of feedback on work carried out with patients and carers, meant that liaison had been minimal:

If I’m honest we hardly ever saw [case manager] within the practice. We only saw the person twice, once at the very start and once after I think I’d met with you and said we haven’t heard or seen her and she then turned up once again.

GP

Two participants suggested that the lack of embeddedness of this particular case manager was perhaps more to do with the individual than the role:

That might be an issue with her rather than the role as a whole.

GP

Even in practices in which existing practice nurses took on the role of case manager, it was unclear exactly how familiar their colleagues were with their activities:

Do you think the other practice staff knew what [case manager]’s role was when she was doing this other role?

I don’t think they did necessarily because you are right, we are a large practice. We’ve got 15,500 patients. We’ve got 19 doctors, three nurses, etc. Nine or eight loads of people to staff, receptionists, etc. So I don’t think, everyone just gets on with their parts of the work and one or two might decide to find out and so on. But we might have mentioned it in the newsletter or one of the staff meetings on a couple of occasions last year, but I don’t think anyone really knows. But then if you ask me ‘do they know that there’s a midwifery service?’ I don’t think they know what’s on here. Do you see what I mean?

In general, primary care staff had little knowledge of what was actually being delivered to patients. This was compounded by different approaches to recording case management work in the primary care notes. Only one case manager made detailed entries; one simply noted times and dates of contacts; and the final case manager felt that it was inappropriate to record any details in the GP notes. Instead, a summary of the work with each patient–carer dyad was sent to the GPs at the end of the project; however, although the GPs found this very useful, they would have preferred more timely feedback.

A number of participants felt that having a summary or key points recorded in the patients’ notes would facilitate communication; it was suggested that the model of recording used by counsellors attached to GP practices would be ideal. It was also suggested that regular feedback through practice meetings would have been beneficial. Furthermore, appropriate meetings were identified that a case manager might usefully attend, including CMHT meetings, district nurse meetings or the multidisciplinary team meeting:

Every 3 months we have a meeting with [name] who is our consultant psychiatrist and I think that could be a useful tag on to that. It could be, if that was inconvenient, it could be a tag on to our regular meetings with the district nurses.

GP

I think for benefit further would be for [case manager], and maybe [mentor], to host an education meeting for the GPs, and to cascade what they’ve learnt. I know we do have, every Friday lunchtime, an education meeting and . . . if it wasn’t ever discussed, it’s a route that we ought to go, so the nurses, peers and the GPs, they all can learn.

Administrative staff

The value of informal ad hoc meetings was also mentioned:

I think if it could be from somebody who was in and around the building who you bumped into or who you could have internal e-mail contact with that would be the ideal.

GP

The extent to which the practice nurses engaged in these meetings within their own practices was unclear, although no comments were made about their integration (or lack of it) in the interviews with their primary care colleagues. Although the practice nurses had the advantage of already being embedded within the practice, the potential difficulties of integrating an ‘outsider’ were not seen as insurmountable, provided that they had the necessary communication skills and desire to link with the primary care team. There were, however, other advantages to having existing members of the team act as case managers. These included their existing knowledge of patients and practice information systems, the benefits to the practice of developing the skills and roles of existing team members and the perception that using an existing member of staff was somehow more holistic:

But how would she know how to use the system? Time wise because obviously she’d have to go to someone to find out, how do I source these patients, how do I go through their records, just to get to know a medical system I know from just my experience here that you know it isn’t just a quick lesson, there really isn’t. My gut feeling would say it’s a downside. I would think it’s far better where people are familiar with the system.

Administrative staff

I think it makes her work seem more valid, rather than just being an add-on. And I think for patients it feels – I think for our patients, we know our patients, they like the surgery here, they like the nursing team, and it feels more solid, it feels more a part of their overall health care and their overall, that they’re being looked after holistically rather someone else coming in and doing an add-on.

GP

The one benefit of being an ‘outsider’ to the practice and coming in to the case manager role was the perceived ability to legitimately ‘ring fence’ one’s time. Professionals working in small practices felt that it would not be appropriate to have a case manager embedded within their practice, but suggested that a different model was needed, such as a mobile service that could attach itself to the practice at certain times:

You can’t have an embedded person because actually they haven’t got the resources to do it so you’re probably looking at a model where you do have one person covering several practices. So for example we have, I know it’s not the same thing but one of the things that’s come up, is the 24-hour blood pressure monitoring which is a new NICE [National Institute for Health and Care Excellence] guideline. We have a lady who comes in every two weeks because our population’s smaller and that suits our population so they get seen quickly and efficiently and it actually only takes one afternoon a week to cover our patient load.

GP

Supervision and support of case managers

Although existing line management arrangements continued for all case managers, there was little evidence that this had included any detailed discussion of work with clients for the practice nurses involved. Only minimal contact between the lead GP and case managers was reported in three of the four participating practices:

But I’ve just let her get on with things really, and I sought her out I don’t know, probably end of November time, a bit before Christmas just to see how things were going and touch base at that point.

GP

The extent and form of supervision provided by existing line managers seemed inadequate to support the case managers in their new role. There was no evidence that line managers facilitated or encouraged case managers to participate in relevant practice meetings, checked that work was being recorded in the primary care notes, helped them to ring fence the time available for case management or reviewed their work with individual clients:

So what [case manager] was doing was she was also going on home visits to meet these patients on our register. When she went on these visits she’d either let me or her colleagues and the nursing team know that she’s on these visits. I think they took about over an hour or so, a long time for a consultation. She’d come back and do the documentation, etc. and so on. My question with her was ‘Do you need as much time as you’re spending for six patients?’ . . . I always received the answer ‘Yes’. I didn’t bother going beyond that really.

Administrative staff

With more robust practice-based support and supervision, it is possible that the case managers could have achieved more within the time and resources available.

Core knowledge and skills

There was recognition by the mentor and members of the research team of the range of knowledge and skills required by the case managers. Knowledge of dementia and available interventions and awareness of local services were highlighted as core skills. Existing knowledge of dementia varied significantly between case managers; although one person had no direct experience of working with people with dementia, two case managers had a specific interest in dementia and were keen to develop or utilise their skills in this new role:

Dementia’s my special interest anyway; I’ve worked for many, many years in dementia care. I’ve got a diploma in dementia care as well.

Case manager

The process of recruiting case managers varied between sites; whereas the social workers had to formally apply for secondment to the role, arrangements for the practice nurses were less formal:

I was nominated and I had the right to refuse but I was nominated . . . I suppose as soon as they got a whiff of my case management experience my fate was sealed.

Case manager

Although this practice nurse had extensive case management experience (in paediatrics), she had little knowledge or experience of dementia. The feasibility of developing sufficient expertise within the time available was questioned and it was suggested that a more formal interview process, perhaps including discussion of scenarios, would be useful in ensuring that the case managers had core knowledge and skills relating to dementia:

For me one of the fundamental flaws was perhaps recruiting people into a dementia case management role where not everyone had a basic understanding around dementia.

Mentor

The value of knowledge of local services was emphasised by the case managers and mentor, who saw signposting as a key part of their role:

I think families will want to know about ‘what’s the name of that day centre, two streets away?’ but I think that will come with the practitioner’s knowledge and I think that’s when I would say ‘well actually I’ve got a leaflet on [a particular] day centre, here it is’ or ‘I can talk about that’.

Case manager

Although the case manager with a social work background had a good knowledge of local services (and often had contacts within such services that further facilitated the process of referral and liaison), developing this knowledge was challenging for practice nurses, particularly in one setting where the practice population spanned two local authorities:

I’ve learnt a lot about different services and networking and I feel like there’s a lot to learn still, loads and loads and loads, I still feel ‘oh, I don’t know who to turn to with this’.

Case manager

Professional background

Views on the relative merits of different professional backgrounds for case management varied. In addition to their knowledge of local services and their skill set, social workers were also more familiar with working independently in the community, visiting people at home and working within existing policies for activities such as out-of-hours working. Practice nurses were used to working within the GP surgery and had some concerns about home visits:

They [practice nurses] don’t see themselves as doing many home visits and they are concerned about insurance cover for doing that.

Team member

Whereas the practice nurses were familiar with the primary care environment and culture, being based in primary care was a significant shift for the social worker, in terms of both the physical environment and the lack of formal structure for their work:

I suppose it’s quite a unique situation where you’re not tied down by statutory frameworks, I suppose what I’m conscious of is that sort of freedom, that flexibility that’s quite a unique situation to be in; I don’t need to see the person every 6 weeks, I don’t have to make sure that I’ve done that document in time and I’ve done particular things. I suppose I’ve just absorbed so much organisational policy that I’m so used to and it’s just putting that different hat on, that’s going to be hard.

Case manager

In addition to bringing their own professional knowledge and expertise, the case managers also brought their preconceptions about other agencies to the role. The views expressed by one case manager from a social work background may have impacted on her ability to work effectively with primary care colleagues:

I think medics have a very different approach from social workers. Obviously medics are quite problem orientated there is something wrong, we shall fix that, move on. Whereas obviously adult services, social services are more looking at the wider aspects, the bigger picture, more long-term changes which is certainly the way I see the care manager’s role. It’s [a] more holistic approach; it’s not about there’s a problem, diagnose it, cure it.

Case manager

Although one of the social workers argued that a social work background was essential for case management, none of the other case managers had a strong view on the relative values of different professional backgrounds.

Interpersonal skills

Developing relationships with people with dementia and their carers, and managing potentially conflicting needs, were seen as key skills for the case managers. Again, case managers with a social work background felt that their training had equipped them with the necessary interpersonal skills:

The core social work skill is in communication, it’s in observing, reflecting, evaluating information, being analytical with information, being able to probe deeper into systems, into relationships and from that being able to problem solve a situation.

Case manager

She knows how to think about information, synthesise it, check it with people and so on. She’s aware of a lot of the issues around things like capacity and engaging family and social networks, managing the dynamics that can emerge.

Team member

Potential and actual benefits of case management

Among the case managers and members of the research team there was strong commitment in theory to the case management approach. A range of potential benefits of case management was identified (Box 3). The key differences between case management and other services related to continuity of care and flexibility over input:

It would be supporting people across the whole journey, and that’s what families need and that’s what they ask for, and they’ve been asking for it repeatedly for many, many years.

Team member

Only one potential negative consequence of case management was identified and this was the risk of creating dependency and disempowering patients and carers:

certain people will hold on too long and do too much for people and with the best will in the world, the best intentions will foster dependency . . . the potential [is] there for crossing a boundary of being too close, of de-skilling people and making people dependent.

Case manager

There was a sense of frustration among the case managers and mentor that there had been insufficient time in the feasibility study to really demonstrate the potential of case management. The time available for case management had been curtailed by the considerable delay (of almost 5 months) in obtaining ethical approval for a substantial amendment relating to recruitment and slow recruitment. As a result, the case managers had had relatively little time to develop their work with patients and carers and could identify relatively few concrete benefits for participating patients and carers. Several participants had gained financially through claiming benefits or a council tax reduction, and feedback from patients and carers to the case managers had generally been positive.

I mean all I’ve really been able to put in has been a few sort of like basic stuff things like welfare rights checks, benefits checks, some equipment like grab rails.

Case manager

they [patients and carers] all said the same thing to me anyway that it was nice to know somebody was there and they all kind of appreciated that although I wasn’t there 24/7 I was still a name and they could put a face to the name as well and they weren’t always expecting me to know all the answers but they knew that I would do my level best to help them find the answer to whatever that may be.

Case manager

it was such a short project I feel almost frustrated we didn’t have a bit more time to get through what I think are natural initial hurdles and actually get our teeth stuck in and make a proper go of it, so that’s just a sense of frustration.

Mentor

Although the primary focus was on the benefits for participating patients and carers, there were also benefits for the case managers and their practices:

I think it’s just flagged me up as being a member of the team who does have the special interest, does have some skills that I can bring to the practice concerning dementia care and now that’s got the ball rolling with me doing the dementia QOF and reviewing patients that way.

Case manager

Clarity over the case manager role

A key issue for case managers (and team members) concerned the lack of understanding over what case management involved and how it differed from existing services such as Admiral nursing and dementia advisors:

Well I think there’s a big question about what we mean by case management. I don’t think there’s any kind of real clarity about what the term means.

Team member

Certainly in the early stages it didn’t seem very clear at all to me what was expected or what I was supposed to be doing, or how I was supposed to go about it. And I was relying on [mentor] a lot more, I didn’t really fully understand what I was doing. But, now that I’m kind of on the road as it were, I feel, yes, a bit more confident in my own skills really.

Case manager

This lack of clarity occasionally led to case managers having misconceptions about their role. For example, one case manager carried out some ‘informal’ assessments with carers. When asked how these ‘informal’ assessments differed from the more usual assessments, the case manager explained:

I mean obviously the project is designed to work with the patient as opposed to the carer, so the informal ones have been basically where the patient hasn’t wanted to be involved.

Case manager

Even towards the end of the project, case managers still expressed confusion about their role. The situation may have been compounded by the interest/background in Admiral nursing among some members of the research team and the mentor. This led to some concepts from Admiral nursing being incorporated into the project and also to inappropriate comparisons of case managers with their own role and that of the mentor:

I mean I don’t really still understand the role of a case manager anyway I don’t feel, I feel like I’m still learning because I’m not a case manager, I feel like I’m probably just giving people advice, I don’t see it as case managing as such, not like [mentor] does.

Case manager

In contrast to the other case managers, the practice nurse with previous experience of case management felt that there was ‘clear guidance’ about her role.

Implementing case management in practice

A range of issues concerning the practical implementation of case management was highlighted, including time constraints for case management, the timing of the intervention and identification of needs. Issues relating to the documentation of case management activities have been explored in Chapter 6.

Advantages and disadvantages of primary care

Views varied on whether or not primary care was the most appropriate place for case management and a range of advantages and disadvantages were identified (Box 4). Although the key task for the social worker was to become integrated and embedded into the primary care team, the challenge for the practice nurses was to have their new role recognised and to be given the time to do it. The importance of support from the practice to enable the practice nurses to have protected time for case management was highlighted:

They need to be fully supported by the practice and I don’t see that happening. It seems to be a bit tokenistic to me. They need that dedicated time and everything to be in place to support them in their role.

Mentor

The potential difficulties for the social workers of integrating into the primary care team were recognised by members of the research team:

My experience of working with multidisciplinary teams is that’s it’s been really very hard for social workers to become part of the system in that way.

Team member

Embedding case management in primary care

All of the participating practices had identified a lead GP with a particular interest in dementia; however, the contact between the lead GP and case manager varied between practices. Although one lead GP held regular meetings with the case manager, in other practices contact was limited, typically to one or two meetings to discuss case management throughout the whole period of implementation:

I think people are interested but people have to have the head space to be interested and yes they know I’m doing it but it’s probably not that relevant to them on a daily [basis].

Case manager

It’s been challenging to be honest. I’m quite confused over the reaction from the surgeries. . . . I don’t know, it’s whether it’s a priority or whether it’s been lost in the mix, or people just don’t know, quite know what expectations of roles are, but they don’t seem as involved as I would desire . . . there doesn’t really seem a huge interest in it through some quarters.

Case manager

One case manager was proactive in taking on the dementia reviews and thereby created a continuing specialist role within the practice. However, there was little evidence that either of the other case managers thought strategically about their role or sought to create structures to support their activities within the practice:

I would imagine if the role became a permanent one, case managers and the GPs would have regular meetings and they would go through the lists, and discuss people, not just reliant on the QOF but a much more robust examination of who’s on the books, as it were. And you know targeting people that way.

Case manager

Although this would have been a useful way of increasing the case manager’s profile within the practice, there was no attempt to arrange any such meetings or to become involved in existing meetings within the practice that might have been relevant. The lack of involvement of other members of the primary care team became clear towards the end of the project when we asked case managers to suggest colleagues whom we could interview about their perspectives on case management:

Regarding the interviews – I’m not sure who to suggest really. I doubt if anyone here at the surgery would have any inkling of how the case management I have done will have impacted (or not) on the practice as a whole.

E-mail from case manager

Supervision and support of case managers

Clarifying the purpose of case management

The uncertainty expressed by professionals, people with dementia, carers and case managers themselves indicates the need for a clear definition of the theoretical concept of case management and hence the case manager role, as suggested by our review. 24 This study provides empirical evidence about the limitations of implementing a case management approach in primary care for people with dementia, which can inform the theoretical debate that is needed. One aspect of this debate might involve establishing the boundaries between a practice-based case manager and existing professional roles within the NHS, for example Admiral nurses and social services care managers.

Revisiting which skills and attributes are required for case management

Specific experience of working with people with dementia and with local service and support networks, and understanding how dementia impacts both patients and their families is essential. In addition, good interpersonal skills and the ability to work holistically, proactively seeking out ‘day-to-day’ issues that may become tomorrow’s crisis, are required. For practice staff seconded to the case management role, time management skills were required to balance competing demands and protect time for delivering the intervention. Professional background is less important than the above skills and a positive attitude and enthusiasm to work with patients and families living with dementia. Practice nursing experience may facilitate links with GPs but social workers have experience of independent working in the community. The feasibility study highlighted the need for robust line management arrangements, peer support and supervision for case managers, especially in the early stages of implementation.

Embedding delivery of case management

Primary care is the preferred environment for implementation and contact with patients; this was thought to ‘normalise’ case management and provide opportunities for ad hoc proactive care. The primary care QOF dementia annual review provides further opportunities for case manager contact with those with dementia and their carers along the disease trajectory if, for example, patients or their families are not ready to engage at the time of diagnosis. However, for primary care-based case management to succeed, the practice must be supportive of the case manager role and allow protected time from other conflicting duties. When case managers work part-time, flexible arrangements are needed to enable a timely response if patients or carers need assistance outside the formally agreed hours.

Even when existing practice staff took on the role of case management, time and effort were required to ‘embed’ the case manager within the practice team and local mental health services. Attendance at joint meetings (e.g. district nurse meetings in primary care and CMHT meetings) was seen as a possible way of embedding case management in practice. Recording case management activities in primary care notes was seen as essential to ensure that colleagues were aware that the case manager was involved and to build links within the practice. An alternative model of case management (suitable for smaller practices) would be to have one case manager covering a number of practices. The most appropriate alternative site proposed for case management was within secondary care memory clinics as this would ensure that the service was available at diagnosis. Regardless of location, the ability to visit patients and family carers at home was seen as essential to facilitate detailed assessment of patients and their environment.

Establishing when case management is likely to have maximum effect

The timing of the introduction of case management may matter. If case management were available from the point of diagnosis, it might help establish a relationship and let people with dementia and their carers know that they have a named contact for future support; this is similar to the current primary care management of newly diagnosed cancer patients. Although patients and carers valued the idea of a ‘safety net’, it was clear that they would not necessarily seek help; this was partly because of an unwillingness to make demands on busy professionals but also reflected their lack of knowledge of the range of support available. Regular informal contact between case managers and patients and carers, case manager led but negotiated with clients, is required to facilitate identification of areas of low-level need and allow proactive intervention to prevent future crises and/or reduce family stress. It is difficult to make recommendations about the time required for case management given the low rates of contact and intervention observed in the present study. It was clear that one session a week was not sufficient to deliver anything beyond signposting and brief follow-up telephone calls. Within the context of future research trials, adequate time needs to be allowed for research-related tasks, training, supervision and completion of any study-specific documentation.

Recruitment and follow-up

A complex, co-designed induction and training programme on case management for primary care workers can be embedded in practice, but the amount of time needed to fulfil the role is greater than we anticipated and the rate of case identification is slow. Delays in recruitment partly reflected the need to balance case finding with case management tasks and partly reflected the inconsistent recording of dementia diagnoses in electronic medical records in general practice. In some sites the recruitment of practices willing to take part in this study was more challenging than we anticipated; this experience alone suggests that a full-scale trial (initially anticipated as involving 56 practices) would be time-consuming and expensive to carry out, at least using the model of case management that we have evaluated. The recruitment target of 11 patients per practice was nearly achieved in two of the four participating practices and one practice would probably have achieved the target had the nurse case manager had more time available each week. Overall, we recruited 28 of the planned 44 dyads, a recruitment rate of 64%.

The inclusion criteria tested in this project were narrow. Our original assumptions about those attending specialist clinics or living in care homes not needing case management were generous; these two patient groups could be included among those invited to take up primary care-based case management in future studies although the case management intervention may need modification. Recruitment periods would need to be extended to > 6 months to reach the targets proposed in the original study protocol.

Follow-up rates were good. In total, 24 out of 29 patients (83%) were successfully followed up at 5 months (either by providing data or indicating a willingness to provide data), which was consistent with the retention target of nine out of 11 (82%). The response to the evaluation of the intervention, and to the idea of case management, was largely positive among people with dementia and their carers. However, the actual collection of data was variable. For example, the NPI outcome at 5 months was missing for 13 out of 29 (55%) overall but for only four out of 14 (29%) in the north-east. Likewise, follow-up data collection for secondary outcomes ranged between 50% and 59%.

Case management intervention

Only one of the four practices achieved a level of case management activity that might have had an impact on outcomes, with nine dyads recruited (and recruitment stopped to concentrate on follow-up work). There was an average of five contacts per dyad (compared with contact rates of less than two in the other practices) although most of these contacts were by telephone. In this practice the nurse acting as the case manager had a background in care work with people with dementia, but no previous experience of case management methods.

There was evidence that the threshold for identification of unmet needs was high, that identification of unmet needs did not necessarily lead to action and that data capture for research purposes was burdensome to the case managers, who had not had previous experience of research.

University College London

Steve Iliffe led the funding application, was co-chief investigator and finalised this report.

Amy Waugh and Allana Austin were research assistants working with the London and Norfolk practices respectively. Amy Waugh drafted Chapters 1–3 of this report

Cornelius Katona was a co-applicant, chaired the study management committee and contributed to this report.

Gill Livingston was a co-applicant and site principal investigator for London and contributed to this report.

University of Newcastle

Louise Robinson led the funding application, was co-chief investigator and site principal investigator for the north-east and contributed to this report.

Katie Brittain was a co-applicant and was responsible for the qualitative research (with support from John Bond) and contributed to this report.

Claire Bamford and Marie Poole were a senior research associate and research associate, respectively, working with the north-east practices, and were also responsible for carrying out the qualitative research. They drafted Chapters 5–7 of this report.

Nick Steen was a co-applicant and the study statistician and drafted Chapter 4 of this report.

Elaine McColl and Chris Speed of the Newcastle Clinical Trials Unit advised on study design.

Vanessa Hogan of the Newcastle Clinical Trials Unit administered the study and contributed to this report.

Dementia UK

Barbara Stephens was a co-applicant, worked on WP1 and contributed to this report.

Pat Brown was the mentor for the case managers in WP2.

University of East Anglia

Chris Fox was a co-applicant and site principal investigator for Norfolk and contributed to this report.

King’s College London

Jill Manthorpe was a co-applicant, helped co-ordinate WP1 and PPI involvement and contributed to this report.

Keele University

Carolyn Chew-Graham was a co-applicant and the study’s expert on care co-ordination and contributed to this report.

University of Kent

Simon Coulton was a co-applicant and advisor on service modelling for the intended full trial.

London School of Economics and Political Science

Martin Knapp was a co-applicant and advised the study on economic evaluation methods.

Publication

Koch T, Iliffe S, Manthorpe J, Stephens B, Fox C, Robinson L, et al. (2012) The potential of case management for people with dementia: a commentary. Int J Geriatr Psychiatry 2012:27:1305–14.

Session 1: Where we are now?

No researchers were present at this session to allow case managers and Pat Brown an opportunity to confidentially discuss their experiences of case management. The mentor and case managers then summarised their discussions to feed back to the wider group in session 2.

Session 2: Discussions of lessons learned (all)

Pat Brown summarised the key points of the discussion of what had worked well and not so well in case management. She encouraged the case managers to contribute to the discussion. The following key points were included.

Session 3: Case managers’ input into practice records (all except Amy Waugh)

Marie Poole asked the case managers to describe how they were documenting case management. There was consensus that the paperwork designed for the study was not user-friendly and, as a result, each case manager had developed her own approach.

One case manager had recorded the initial assessment in the study documentation and the GP notes but felt that this was an inefficient use of time. Subsequently, she had written a narrative summary of each contact in the practice notes and then cut and pasted this and kept a copy in a Word document for each patient and carer. This enabled her to quickly review her caseload each Monday. Although another queried whether it was appropriate to record case management in the GP records, this case manager felt that it was helpful for her colleagues.

Two case managers were not inputting any data on to the practice systems (EMIS; Egton Medical Information Systems), with the exception of one noting when telephone calls were anticipated. The other raised the issue of patient confidentiality as one patient had specifically requested that certain information not be shared with the GP. Pat Brown suggested that this could be managed by noting brief details of the contact in the GP notes but writing fuller notes elsewhere (perhaps even omitting details from these notes but including sufficient information to act as an aide memoire).

Marie Poole asked whether there should be some standardisation of recording data in the practice systems. It was agreed that at a minimum the GP notes should indicate that the patient was involved in the CAREDEM study. Steve Iliffe suggested that, if there was a READ code for case management, this could be used to code each contact with the patient.

Marie Poole had drafted a QOF letter and proforma that could be completed by case managers and used to meet the requirement for annual review of patients on the dementia register. None of the case managers had used these to date. One case manager had now taken over responsibility for the annual reviews in her practice; however, these documents may still be relevant to the other practices. Another had discussed with the general practitioner adding scanned versions of case manager assessment documents to the patient notes, but had not yet done this.

Pat Brown raised issues around the practicalities of using paper compared with electronic documentation.

Session 4: Identification of cases for interview and observation (all except Amy Waugh and one case manager)

Claire Bamford asked the case managers about opportunities to carry out observations and interviews in London and Norfolk. She emphasised the value of including patients and carers with different characteristics in terms of the relationship between patient and carer (e.g. spouse vs. adult child), level of need, availability of social support and stage of dementia. She clarified that it is important to include cases in which the case manager had limited input rather than ‘cherry-picking’ cases with more substantial involvement that would demonstrate the positive impact of CAREDEM.

Claire Bamford and Marie Poole will liaise with case managers to arrange observations and interviews.

Session 5: Summary of the day and moving forward (all except Amy Waugh and one case manager)

Steve Iliffe summarised the key discussion points of the day:

• the utility of this meeting in terms of discovering important ‘lessons learned’ for case management in practice and the trial phase

• whether GP practice is the ideal setting for the delivery of case management and what the alternatives are

• whether case management can be an additional role or should be a distinct role, perhaps covering a broader practice base

• whether a second feasibility study is required to specifically focus on the outcomes of case management.