Errollyn Bruce

Defining the outcomes of community care: the perspectives of older people with dementia and their carers

There is growing recognition of the need for outcome measures which reflect the aims of services for people with dementia. The development and application of existing outcome measures has often marginalised people with dementia. ‘Experts’ and carers have been viewed as primary sources when identifying relevant outcomes or domains of quality of life, and proxy respondents have often been responsible for rating outcomes on the resulting measures. This paper reports a small consultation with people with dementia and their carers to identify the desired outcomes of community care. While there was considerable overlap in the outcomes identified by people with dementia and their carers, a number of limitations of relying solely on carers as proxy respondents were identified. A key outcome, which has been relatively neglected in previous work, was maximising a sense of autonomy. A range of outcomes related to the ways in which services are delivered were also identified. Future evaluative studies should encompass both quality-of-life outcomes and service-process outcomes (the impacts of the ways in which services are delivered) in addition to other outcome measures relevant to the aims and objectives of the service.

REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicentre randomised trial

OBJECTIVES The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care. DESIGN A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point). SETTING Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the persons home, and treatment groups were held in a variety of community settings. PARTICIPANTS A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study. INTERVENTIONS The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group. MAIN OUTCOME MEASURES The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties. RESULTS The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimers disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed. CONCLUSIONS This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions. TRIAL REGISTRATION Current Controlled Trials ISRCTN42430123. FUNDING This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 16, No. 48. See the HTA programme website for further project information.

REMCARE: pragmatic multi-centre randomised trial of reminiscence groups for people with dementia and their family carers: effectiveness and economic analysis

Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the persons home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA) identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes (self-reported QoL-AD mean difference 0.07 (-1.21 to 1.35), F = 0.48, p = 0.53). Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a General Health Questionnaire-28 sub-scale at the ten month end-point (mean difference 1.25 (0.25 to 2.26), F = 8.28, p = 0.04). Compliance analyses suggested improved autobiographical memory, quality of life and relationship quality for people with dementia attending more reminiscence sessions, however carers attending more groups showed increased care-giving stress. Economic analyses from a public sector perspective indicated that joint reminiscence groups are unlikely to be cost-effective. There were no significant adverse effects attributed to the intervention. Potential limitations of the study include less than optimal attendance at the group sessions—only 57% of participants attended at least half of the intervention sessions over the 10 month period, and a higher rate of study withdrawal in the control group. Conclusions This trial does not support the clinical effectiveness or cost-effectiveness of joint reminiscence groups. Possible beneficial effects for people with dementia who attend sessions as planned are offset by raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions. Trial Registration ISRCTN Registry ISRCTN42430123

The role of higher education in transforming the quality of dementia care: dementia studies at the University of Bradford.

There is now widespread concern about the inadequate care and support provided to people with dementia from diagnosis to death. It is acknowledged that while there is a range of effective ways to care for and support people with dementia and their families from diagnosis to death, these have yet to become integral to practice. In England, for example, the National Dementia Strategy seeks to transform the quality of dementia care. One of the key components to transforming the quality of care is to ensure we have an informed and effective workforce. We argue here that in order to transform the quality of care we need to distinguish between the aims of training and education. Whilst there is a place for skills-based workplace training, Higher Education in dementia studies has a key role to play in the provision of specialist knowledge and skills in dementia care emphasizing as it does the development of critical thinking, reflection and action. In this paper we describe dementia studies at Bradford University available at both undergraduate and postgraduate levels. We outline their aims and learning outcomes, curricula, approach to teaching, learning and assessment. We describe the nature of students who study with us, noting their fit with the Higher Education Funding Council in Englands agenda for widening participation in higher education. Higher Education in dementia studies has a unique role to play in equipping practitioners and professionals with the information, skills and attitudes to realize the potential for quality of life for people with dementia and their families.

‘It's in the eyes’: how family members and care staff understand awareness in people with severe dementia

Objectives: In this study, we explored how family members and care staff understand awareness in people with severe dementia and what this awareness means to them. Method: We conducted four focus groups between 2007 and 2009 in the UK with 11 family members and 12 care staff. Transcripts of the focus groups were analysed using thematic analysis. Results: A model of awareness emerged in which the perceived level of awareness in the person with dementia was influenced by an interaction between attributes of the person with dementia and the environment, with expressions of awareness being hindered by environmental factors and facilitated through appropriate stimulation. Awareness did fluctuate, and differences in interpretations of awareness were linked to the meaning assigned to particular kinds of responses. For family members, awareness was intrinsically linked to their emotional connection with the person with dementia. For care staff, identifying signs of awareness helped them to do their job and enabled them to feel that they had connected with the person with dementia. Conclusion: The findings of this study suggest that care staff would benefit from training both on identifying awareness and on providing suitable activities for people with severe dementia. Care staff and family members would also benefit from greater sharing of information about the person with dementia. This could help to enhance quality of life for person with dementia and improve quality of care.