Dawn Brooker

What is person-centred care in dementia?

The term person-centred care has become all-pervasive on the UK dementia care scene. It has been suggested that it has become synonymous with good quality care. It seems that any new approach in dementia care has to claim to be pc (person-centred) in order to be P.C. (politically correct). The term is used frequently in the aims and objectives for dementia care services and provision in the UK and the US, although what lies behind the rhetoric in terms of practice may be questionable.

Wellbeing and Activity in Dementia: A Comparison of Group Reminiscence Therapy, Structured Goal-directed Group Activity and Unstructured Time.

A within-subjects design was utilized to compare levels of wellbeing demonstrated by 25 individuals with mild to moderate dementia during three types of activity. The first was simple group reminiscence therapy (RT), using objects and photographs; the second was group activities (GA), involving simple goal directed crafts or games; and the third was unstructured time (UT), during which participants were left to their own devices with little staff interaction. These activities were all part of the usual programme of activities within three day hospitals where the study took place. Dementia Care Mapping was used to measure relative levels of wellbeing or illbeing during these three conditions. The results indicated that individuals experienced a greater level of relative wellbeing during RT than GA. The level of wellbeing in both RT and GA was significantly higher than in UT.

The efficacy of Dementia Care Mapping as an audit tool: Report of a 3-year British NHS evaluation

Dementia Care Mapping (DCM, Kitwood & Bredin, 1994a) was incorporated into the Quality Assurance Strategy of an urban British Mental Health (NHS) Trust. Its role as an audit of the outcome of the care process in formal dementia care settings was evaluated. DCM was used in two day hospitals, an assessment ward, two respite care units and four continuing care units over three annual evaluation cycles. This equated to approximately 1,614 hours of mapping over the three cycles. The way in which DCM was used is described in detail. The results were generally very positive with improvements in the quality of care practice being demonstrated. Although anxious about the observational nature of DCM, staff viewed it as a positive means of improving quality of care. DCM is seen as being a highly appropriate audit tool to use in NHS formal dementia care settings. Information on the experience of managing a DCM project is shared.

Enriching opportunities for people living with dementia in nursing homes: An evaluation of a multi-level activity-based model of care

This paper reports on the evaluation of the Enriched Opportunities Programme in improving well-being, diversity of activity, health, and staff practice in nursing home care for people with dementia. Participants were 127 residents with a diagnosis of dementia or enduring mental health problems in three specialist nursing homes in the UK. A repeated measures within-subjects design was employed, collecting quantitative and qualitative data at three points over a twelve-month period in each facility with follow-up 7 to 14 months later. Two-way ANOVAs revealed a statistically significant increase in levels of observed well-being and in diversity of activity following the intervention. There was a statistically significant increase in the number of positive staff interventions but no change in the number of negative staff interventions overall. There was a significant reduction in levels of depression. No significant changes in anxiety, health status, hospitalisations, or psychotropic medication usage were observed. The Enriched Opportunities Programme demonstrated a positive impact on the lives of people with dementia in nursing homes already offering a relatively good standard of care, in a short period of time. The refined programme requires further evaluation to establish its portability.

Systematic review of services providing information and/or advice to people with dementia and/or their caregivers

Information is a key part of service provision to people with dementia and their carers, but there is no systematic review of the evidence. This study aimed to determine whether information services confer significant benefit for quality of life, neuropsychiatric symptoms and carer burden.

Public health guidance to facilitate timely diagnosis of dementia: ALzheimer's COoperative Valuation in Europe recommendations

ALzheimers COoperative Valuation in Europe (ALCOVE) was a Joint Action co‐financed by the European Commission to produce a set of evidence‐based recommendations for policymakers on dementia. This paper reports on timely diagnosis.

What makes life worth living

The stereotypical image of life in care homes is of residents sitting around the walls of a day-room either sleeping or quietly anxious, waiting for something to happen. There is little spontaneous conversation or activity of any kind. Days are dreary and depressing. The TV is on and sometimes the radio too, but no one appears to pay much attention. Many years ago I wrote a review article called ‘Looking at them, looking at me’, which summed up my experience of undertaking observational research in long-term care (Brooker, 1995). I used the title to illustrate that, during this research, the most interesting thing that occurred for residents all day was the fact that I was trying to undertake so-called ‘fly on the wall’ observations. After many years spent working in the field to improve the quality of life in long-term care, I am still disappointed that this stereotype prevails. Unfortunately, it prevails because this is still the reality for many people living in care homes around the world. In my periods of despondency about the situation, I plan a follow-up review called ‘Still looking at them, looking at me’, in which I conclude that care homes are impossible environments for people to enjoy a good quality of life and are, at best, a necessary evil. Then I visit a care home or housing scheme where I see people having a great time, where life (although not perfect) is fun and meaningful, where care staff help residents to forget their troubles and enjoy life in the moment and where families are welcomed and the home truly feels like a home. I have experienced this many times now, but still not as frequently as I would like. We know that care home life does not have to conform to the negative stereotype, but we still have a long way to go before we can be confident that good practice prevails and becomes the norm. What makes a life worth living is a question that all of us involved in providing long-term care need to be acutely aware of. Will there ever come the day when anyone looks forward to moving into a care home? We know this is a major and traumatic life event that the majority of people try to avoid. The real challenge for us is to make sure that, once someone has moved into a care home, we do all within our power to provide them with a life worth living. There are three papers in this issue of Ageing and Mental Health that report on the perspective of care home residents from three different countries. These help us to clarify some of the things care home providers can put in place to make life worth living. It is refreshing to have three studies that have worked hard at listening to what people living in care homes have said themselves about what is important to them and that all three have so carefully analysed what was said. Choi, Ransom and Wyllie interviewed 65 nursing home residents in five Texan nursing homes about the terrible feeling that consumes us when life is not worth living – depression. The interviews focussed on residents’ perceptions of depression and the ways in which they coped with these feelings. Virtually all (59) said that they had experienced feelings of depression relating to entering the care home that had lasted from a couple of months to a year after admission. On interview around half said they currently felt depressed. Some of the quotes from these interviews are heart-breaking. Theme-based content analysis of the transcripts revealed that residents saw feelings of depression being caused by loss of independence, loss of freedom and a dislocation of continuity with their past life. Although all lived in communal facilities, the pervasive feeling was one of isolation and loneliness. The invasion of privacy caused by sharing a bedroom and the indignity of sharing a bathroom (particularly when you need to use it badly and someone is in there) caused a great deal of distress. All residents who were covered by Medicaid had to share a bathroom. Loss of autonomy and control due to institutional regulations was a further cause of depressed feelings. Many felt ready to die and openly talked of this in the interview. Death was a frequent occurrence and many had experienced the death of other residents they had made friends with. All the residents interviewed were cognitively intact and reported being around people with dementia as depressing, although many expressed sympathy towards them. High levels of staff turnover, staff shortages and poorly trained staff exacerbated feelings of depression further. Although there were some organised activities, the majority of residents wanted more opportunities to get out of the home on trips out – even to the shops. ‘I have not been to the grocery store for five years’ was mentioned frequently. With regards to in-house activities, many reported being bored with doing the same things over and over – even when playing bingo it appeared that the same cards always won! The vast majority reported that they coped by placing their trust in God to get them through, being stoical about the sense that things were as they were and trying to maintain a positive attitude. Family visits and support were particularly important for those residents who reported not feeling depressed. In terms of improving coping, most said that they would prefer better activity programmes as a means of helping them

Enriching opportunities for people living with dementia: The development of a blueprint for a sustainable activity-based model

The aim of this paper is to describe the process of building a multi-level intervention called the Enriched Opportunities Programme, the objective of which is to provide a sustainable activity-based model for people with dementia living in long-term care. It is hypothesised that five key elements need to work together to bring about a sustainable activity-based model of care. These elements are specialist expertise–the staff role of Locksmith was developed as part of this programme; individualised assessment and case work; an activity and occupation programme; staff training; and management and leadership. These elements working together are known as the Enriched Opportunities Programme. This paper reports on the processes undertaken to develop Enriched Opportunities from its inception to the present, and focuses on lessons learnt from the literature, an expert working group and action research in four UK study sites. A blueprint for evaluation in other long-term care facilities is described.

The enriched opportunities programme for people with dementia: a cluster-randomised controlled trial in 10 extra care housing schemes.

Objectives: The Enriched Opportunities Programme (EOP) is a multi-level intervention focussing on improved quality of life for people with dementia. This study compared the experience of people living with dementia and other mental health problems in extra care housing schemes that utilised EOP with schemes that employed an active control intervention. Method: Ten extra care housing schemes were cluster randomised to receive either the EOP intervention or an active control intervention for an 18-month period. Residents with dementia or other significant mental health problems (20–30 per scheme) were assessed on a number of outcome measures at baseline, six months, one year and 18 months. The primary outcome measure was quality of life. Self-reported depression was an important secondary outcome. Results: The EOP-participating residents rated their quality of life more positively over time (4.0 (SE 0.6) units; 14% p < 0.001) than the active control (1.3 (SE 0.6) units; 4% p = 0.003). There was also a significant group–time interaction for depressive symptoms (p = 0.003). The EOP-participating residents reported a reduction of 25% at both six and 12 months and a 37% reduction at 18 months (all ps < 0.001). EOP residents were less likely than residents in the active control sites to move to a care home or to be admitted to a hospital inpatient bed. They were more likely to be seen by a range of community health professionals. Conclusion: The EOP had a positive impact on the quality of life of people with dementia in well-staffed extra care housing schemes.

Staff and patient feedback in mental health services for older people.

OBJECTIVES: To compare the views of patients and staff on the quality of care provided on a psychogeriatric assessment ward over a five year period. To describe the quality improvements which were made as a result of their respective comments. DESIGN: Structured interviews were conducted with both patients and staff to obtain qualitative feedback and suggestions for improvement. An analysis of the percentage of positive and negative comments made by both patients and staff was used to compare the levels of satisfaction on a variety of aspects of the service provided. SETTING: Psychogeriatric inpatient assessment ward. SUBJECTS: 75 patients and 85 staff interviews were conducted. MAIN MEASURES: Structured interviews covering various aspects of service quality. RESULTS: Staff and patients picked up on different aspects of service quality as important. Quality improvements which arose from the interviews were clearly different. Generally patients were more positive about the physical environment and standards of professional care than staff, but less positive about issues of privacy, social interaction, and empowerment. CONCLUSIONS: The perspectives of patients and staff in this area are not interchangeable. Both series of interviews led to several positive changes in the quality of care. Interviews with staff seem to have been valuable in a low morale situation. A structured interview format provided patients with an opportunity to feedback openly and led to changes in service quality which would not otherwise have occurred.