Age and Ageing Advance Access originally published online on January 19, 2007
Age and Ageing 2007 36(2):171-176; doi:10.1093/ageing/afl161
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Person-centred dementia services are feasible, but can they be sustained?
1 Division of Rehabilitation and Ageing, B Floor Medical School, Queen's Medical Centre, Nottingham, NG7 2UH, UK
2 Division of Psychiatry, A Floor South Block, Queen's Medical Centre, Nottingham, NG7 2UH, UK
3 Duncan Macmillan House, Porchester Road, Mapperley, Nottingham, NG3 6AA, UK
Address correspondence to: J. R. F. Gladman. Email: john.gladman{at}nottingham.ac.uk
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Abstract |
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Background: we evaluated a specialist community-based dementia service to establish whether high quality care was being delivered and the conditions for doing so. The service was in an urban part of Rushcliffe Primary Care Trust, Nottinghamshire, United Kingdom. The service comprised an assessment team of an occupational therapist, a community psychiatric nurse and a community care officer, supported by 235 h per week of care delivered by a team of specially trained community care workers.
Methods: a qualitative study was performed using non-participant observation, semi-structured interviews and focus groups, and analysed using a thematic framework approach. There were 2 focus groups involving staff, 11 interviews of staff and stakeholders, and interviews of 15 carers of people with dementia.
Results: the care provided was appreciated by carers, and the service was approved by staff and stakeholders. Care was delivered using a rehabilitative style that aimed to maintain personhood, rather than to promote independence. Clients were usually referred with the object of preventing unwanted admission to institutional care but, over time, moving into an institution ceased to be a uniformly undesirable outcome. The service's resources were reduced during the evaluation period, in part to meet mental health needs in intermediate care services.
Conclusions: an appropriately resourced and constructed specialist service using an adaptive rehabilitation approach aimed at maintaining personhood can deliver good individualised care to people with dementia, but specific and appropriate commissioning for these services is needed to nurture them.
Keywords: dementia, service evaluation, rehabilitation, elderly
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Introduction |
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The care of people with dementia is one of the greatest challenges facing modern societies because of the increasing numbers of people with the condition and the nature of the suffering and distress associated with it. Services provided for people with dementia have been criticised in reports such as the UK Audit Commission's ‘Forget-Me-Not’ [1] which found them inflexible rather than person-centred, with poor integration of health and social services. The UK National Service Framework for Older People identified one of its ‘standards’ as ‘mental health in older people’ and called for services that are ‘comprehensive, multidisciplinary, accessible, responsive, individualised, accountable and systematic’ [2].
Specialist services for people with dementia have been developed in recent years in response to these requirements. One example was the Daisy Chain dementia support service, set up in an urban part (West Bridgford, population approximately 36,000) of Rushcliffe Primary Care Trust, Nottinghamshire, United Kingdom. The service comprised an assessment team of an occupational therapist (who was also the service co-ordinator), a community psychiatric nurse and a community care officer, supported by 235 h per week of care delivered by a team of specially trained community care workers. Prior to this service, there was no specific service for people with dementia, whose needs were met by usual social services (e.g. home care, day care) and health services (primary care services with support of secondary care old age psychiatry services). Regarding its caseload, from the Daisy Chain service database, 120 new referrals were accepted during 2002 and 2003, of whom 29 (24%) were closed within 6 weeks, and 52 (43%) were open for longer than 6 months. Regarding case-mix, clients had a mean age of 83 (range 62–97), 83% were female, 82% lived alone, 13% lived with a spouse, 4% lived with another relative, and none lived in an institution at referral. Twenty-eight percent of those on the service database were in institutional care when their cases were closed. We have previously described the role of the occupational therapist in this service [3].
Little is known about whether new specialist dementia services such as the Nottingham Daisy Chain service are effective or about the conditions for effectiveness. The opportunity to evaluate this service arose when the service co-ordinator approached the rest of the research team, who had no clinical relationship with the service, asking for an external independent evaluation. We evaluated the Daisy Chain service using qualitative techniques aimed at illuminating the relationship between aspects of structure and process upon outcome.
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Methods |
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Data were collected over 18 months from February 2003. Local research committee approval was granted.
Two researchers observed the Daisy Chain team at work, its meetings, documentation and database. Field notes were kept and compared between researchers.
Two focus groups were arranged where Daisy Chain home care staff described their practice and their views of its effectiveness. Findings from the first focus group were explored in the second focus group. Six local General Practitioners in the locality, the old age psychiatrist for the sector, NHS patient advocates, the team manager, representatives of the Carers' Federation, and a representative of the Alzheimer's Society were interviewed. These interviewees were asked to describe their roles and comment upon the effectiveness of the Daisy Chain service. The project co-ordinator was interviewed, and asked to discuss the areas covered in the staff focus groups.
We initially aimed to study and interview two cohorts of 15 users of the service, the contents of the second set of interviews being informed by the findings from the first. We also examined and summarised the clinical notes of each participant with dementia to aid the interpretation of the interviews.
Permission to approach typical clients of the service was sought via the project co-ordinator, who discussed the matter with patients and their carers.
All 15 cases had been living alone and had been at a point of crisis when they were referred to the Daisy Chain service. Examples of crises included wandering or behavioural disturbance, and lack of self-care including inadequate eating, drinking or personal hygiene, or suspected alcohol abuse, each of which required consideration of the need for institutional care. These problems were often associated with the person with dementia being unwilling to accept care. Permission to approach the patient directly for an interview was not given in any of the cases, but the carer agreed to be interviewed in each case. The carers were children, nephews or nieces, or family friends. Interviews were semi-structured: respondents were asked to describe the health and welfare issues arising with the patient, describe the involvement of the Daisy Chain service, and comment upon its value.
While analysing the first set of interviews, we became aware that several of the patients had moved from their home into long-term care. In view of the fact that reducing institutionalisation was a core objective of the service, we chose in our second set of interviews to interview as many of the first cohort as possible instead of a new cohort. Fifteen interviews were undertaken in the first set of interviews, and repeat interviews were performed in seven of these (seven others declined and one was in long-term care at the first interview).
All field notes, focus groups and interviews were tape recorded and transcribed. Consent was obtained for all interviews. Assent was obtained to examine the clients' medical records.
The analysis used a framework approach [4] in which a framework of themes was identified from all available data through a process which had coded, indexed, charted, mapped, interpreted and, where necessary, re-coded them. Three researchers (JG, EW, KR) discussed the emerging themes.
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Results |
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Outcomes
From carers' perspectives, good outcomes were characterised by the person with dementia coming not only to accept care, but also to enjoy doing so. This greatly reduced the stress experienced by carers. Carers deemed the service good because the care workers were kind, showed patience and understanding, and enjoyed the company of the person with dementia. Good communication with carers was reassuring and another mark of success. A well-used communication book in the patient's home for staff and carers was cited as an example of this. Carers contrasted their experiences of the Daisy Chain service with those of previous care services, where specific care tasks were undertaken in fixed periods of time and where little pleasure appeared to be drawn from doing so. Table 1 shows the range of carers' quotes illustrating the overall impression of the service, and its benefit to both the person with dementia and the carer.
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Staff of the service independently expressed similar views, also drawing comparisons from their previous experiences in other services providing care for people with dementia. Other professionals such as GPs and patient advocates expressed positive views: GPs reported being less troubled by patients receiving the service than hitherto, and advocates felt that the style of care was more appropriate to the patients' needs than usual (non-specialist) care.
Not all views about clinical effects were positive: one carer at outset, two carers at follow-up and the old age psychiatrist expressed differences of opinion about how long patients should be maintained at home rather than in an institution, with these respondents indicating that the service persevered in avoiding institutionalisation too long. Figure 1 provides positive and negative illustrative case vignettes.
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Style of Care
The style of care, as ascertained from all our sources, was articulated by the project leader, an occupational therapist. She referred to a ‘rehabilitative approach’. This meant a careful assessment of a client's ‘whole day and how it is structured’ and ‘the way a person functions within his/her life’. She proposed that this assessment process took up to 12 weeks during which a bespoke package of care was established. Examples of care included improving compliance with medication (e.g. ensuring that eye drops were given), taking a person to the doctor, or taking the client for a walk by the riverside, as had been their previous habit. Aids and appliances were provided (e.g. bath aids, a stool for kitchen use or a commode). Illustrative Case 1 in Figure 1 provides another example of intervention. Formal, restorative physical or cognitive exercises aimed at impairments were not used. Liaison with other agencies was common, including going to the district nursing service for promoting continence, and to the old age psychiatry day hospital. Episodes of care were often daily or several times daily. The assessment team communicated frequently with the home care worker to ensure that the reason for the support activity was understood and that the home care worker had the necessary time, skill and resources to undertake it.
The special care workers were in little doubt about what enabled them to achieve these outcomes. Special training was required, in particular, to understand behaviour in dementia, welfare rights, human rights, suicide risk, and compliance with medication. They also needed the time to act outside their traditional task-focussed and time-limited roles. Providing emotional support, where necessary, was an intervention that was seen as part of good-quality care: in their previous experience in ordinary services, visits were justified only to perform a specific task such as helping with washing or dressing. To act in this new way, they needed supportive contact with senior professional staff. They also explicitly recognised a shared autonomy-respecting ethos (making specific reference to education about the concept of ‘personhood’) that influenced their actions.
The aim of this rehabilitation intervention was not the promotion of independence in task performance, but to enable the person to live as normal a lifestyle to their chosen one as possible, by the tailored provision of support.
Avoiding institutionalisation
In the service documentation and in focus group discussions, the prevention of unwanted institutionalisation was acknowledged as one of the Daisy Chain service's core objectives. At the point of referral, most carers wanted the person for whom they cared to remain in their own homes.
However, avoiding institutionalisation per se was not the objective, as in illustrative Case vignette 2 (Figure 1). Table 2 gives examples of interviewee quotes illustrating the complex and changing views on the desirability of institutional care. The reason for the change in view over time appeared to be that as time went by the awareness of the person with dementia deteriorated to the extent that they no longer seemed to take overall pleasure from being at home or when the risks of being alone were unacceptable. Avoiding institutionalisation when unwanted was an objective at one point in time, but facilitating a smooth move into an institution could be an objective later on in the same person's care.
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Management and policy
The project co-ordinator convened the bi-monthly Daisy Chain steering group meetings. The local commissioners sought evidence of activity and effectiveness, and discussed the service in terms of the implementation of higher level policy issues.
There was a lack of common understanding between the clinicians and commissioners at steering group meetings. The health and social services funding for this service had been allocated on the basis that it was supporting the development of intermediate care services, for which explicit targets had been set for both organisations. The justification for doing so was that the Daisy Chain service might prevent hospitalisation or institutionalisation. However, commissioning health and social services staff were increasingly vexed that referrals to Daisy Chain were not being accepted rapidly, e.g. from hospitals, and neither were clients being discharged. The rehabilitation approach applied by the Daisy Chain team appeared to be misunderstood by commissioners familiar with intermediate care services. Hearing the word ‘rehabilitation’, they expected to see evidence of the restoration of independence over a short time frame (such as restoring the ability to make a meal independently) allowing the client to be discharged and the case closed.
In contrast, the Daisy Chain staff perceived that a long-term service was required for this progressive condition: the concept of discharging the client made no clinical sense unless another skilled service (which did not exist) could take over. Similarly, the assessment process was one which prepared for subsequent care delivery and required the development of a therapeutic relationship: it took time. Neither the commissioning nor clinical staff articulated this difference in their understanding of the underlying models of rehabilitation, even when pointed out by the research team. Neither the theoretical background to the service nor the evidence base upon which the service was modelled were discussed in steering group meetings. Instead, reference was mainly made to policy documents such as executive letters from the Department of Health and the Department of Social Services.
During the study period, explicit plans to enlarge the service to cover the remaining two localities of the PCT were not made, nor even were plans for its continuation in the current locality made. Indeed, at the end of 2003, half of the community psychiatric nurse's time was re-allocated to work with other intermediate care services (providing short-term rehabilitation at home or in specific care homes). Subsequently, a reduction in the number of specialist care worker hours available to the service from 235 to 90 was made. We were not able to examine the impact of these changes upon client and carer experiences.
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionKey pointsConflicts of InterestsReferences |
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We found that this specialist dementia service delivered a different style of care from standard service provision to people with dementia. Instead of impersonal, task-focussed and time-limited interventions, this dementia support service provided a personalised and flexible package of care, which involved pleasurable social interaction. It appeared to deliver a service that was in accord with modern advice about good dementia services. This care was highly appreciated and preferred by both carers and staff. The specialist service dealt with needs that the usual service was unable to meet, most of its referrals being clients in crisis despite support from such services. Clearly, specialist dementia services are feasible. The successful delivery of this style of care required the creation of a health and social services team, with a skilled and knowledgeable leader, an increase in resource levels, and improved staff education and training.
Despite the fact that our service user sample was small, our findings are unlikely to be unrepresentative since the reports from service users accorded with observations from service personnel and other professional and interested parties. A drawback of this study is that we did not obtain data directly from people with dementia themselves. We think it likely, but cannot be certain, that the improved quality of life and care observed, and reported by carers and staff, would have been reported by the people with dementia themselves, if we had been able to ask them. We were aware that interviewing people with dementia themselves is possible and valuable, particularly, in the early stages of the condition [5, 6] and indeed we planned to do so if possible. However, we respected the views of the clinicians who gave us access to our interviewees that many of the people with dementia in the service were either too impaired or disturbed to be interviewed, or that their carers were reluctant to assent to the interview process fearing that it might upset the person with dementia. It follows that a potential bias of the study is that the project co-ordinator who negotiated access to interviewees could have influenced the likely responses we obtained. Being aware of this we specifically requested cases where outcome was known to be less than ideal and all analyses were undertaken independently of the project co-ordinator.
We studied a new service, which may have been staffed by unusually motivated or skilled personnel. This does not mean that the success observed here cannot be replicated elsewhere, nor maintained. However, ensuring good teamwork and ongoing team education seem important for achieving this. Fortunately, working in this way increases job satisfaction, and therefore may be sustainable in individuals and stabilises the workforce [7]. The service we studied was small, but the sort of clients it dealt with and the way it did so are not likely to be unique to this geography. Overall, our findings, that high quality community dementia care can be delivered, are likely to be replicable in other settings where such specialist support services for dementia do not exist and where meagre health and social service provision lacks co-ordination. Our findings are similar to another study of a similar small service [8].
We have shown that high quality home support for people with dementia can be delivered, but we also suggest that examining their cost-efficacy using quantitative designs may not be easy because of the difficulties of identifying and measuring the appropriate meaningful outcomes. Measuring quality of life in dementia is problematic [9]. Institutionalisation rates or levels of dependence in activities of daily living do not seem adequate indicators of the value of the outcomes. Valid and routinely usable quantitative measures of personhood are required.
The importance of rehabilitation is now widely recognised in health service policy, but ambiguities in the understanding of this term may be partly responsible for the decisions that led to the reduction in the capacity of this service. We suggest that the staff of this dementia support service delivered an adaptive style of rehabilitation but that the commissioners of the service assumed a restorative model of rehabilitation [10]. Adaptive rehabilitation aims, in the terms of the World Health Organisation's International Classification of Functioning and Health [11], to optimise role performance or participation—in the case of people with dementia to preserve their social integrity and value. The term ‘personhood’ [12] refers to a similar concept. Interventions required to do this include those that maintain co-operation from others (such as the provision of respite to support key carers), or provide assistance (such as home care workers) or make task performance easier (such as aids or adaptations). Restorative rehabilitation aims to promote recovery, typically of impairments or activities. Adaptive rehabilitation is suitable for progressive conditions, where attempts to achieve independence in task performance are likely to be ineffective or rapidly lost. The adaptive rehabilitation approach typically requires long-term contact yet restorative rehabilitation, as assumed in intermediate care, demands a short-term approach. The service staff and the commissioners may have been at cross-purposes because of their understanding of rehabilitation.
The UK National Service Framework for Older People [2] supports the development of good dementia services through standards related to patient centred care and mental health services. However, explicit targets were only set in the standard for the development of intermediate care services, presumably as intermediate care was expected to deliver important benefits with pressures on NHS hospital beds. This study suggests that, in such a target policy climate, while services may flourish where appropriate targets encourage them to do so, services without appropriate targets, such as important support services for people with dementia, may wither. This study suggests that ill-judged pursuit of target driven policy can therefore damage high standard person-centred services, presumably to the detriment of quality of life for patients and carers.
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Key points |
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- High quality dementia care in the community can be delivered using a skilled, dedicated dementia team.
- High quality dementia care uses an adaptive rehabilitation approach aimed at maintaining personhood and participation rather than independence.
- Preferences for and against moving into an institution changeover time and institutionalisation rates are not good targets for dementia services or indicators of their success.
- Appropriate health service targets are needed to sustain new dementia services.
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Acknowledgements |
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The College of Occupational Therapists, UK funded this study. We are grateful for the willing involvement of the Daisy Chain staff, particularly for enabling contact with clients of the service without the research process itself causing them distress. We are also grateful to the participants, particularly the carers of those with dementia, for whom participation in research is understandably a challenge.
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Conflicts of Interests |
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None.
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References |
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TopAbstractIntroductionMethodsResultsDiscussionKey pointsConflicts of InterestsReferences |
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Audit Commission. (2000) Forget Me Not: Mental Health Services for Older PeopleLondon Audit Commission.Department of Health. (2001) National Service Framework for Older PeopleLondon Department of Health.Radford KA, Walker L, Gladman J, Hewitt D. (2006) Evaluation of the daisy Chain service: the role of the specialist general practitioner of occupational therapy–executive summary. Br J Occup Ther 69 196–8.Ritchie J and Spencer L. (2002) Qualitative data analysis for applied policy research. In Huberman AM and Miles MB (Eds.). The Qualitative Researcher's CompanionLondon Sage Publications.Pearce A, Clare L, Pistang N. (2002) Managing sense of self. Coping in the early stages of Alzheimer's disease. Dementia 1 173–92.
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