User views

The needs of carers have become more visible since the Carers Recognition & Service Act (1995). Although the demand for respite care is apparent it has proven much harder to establish its precise benefits using quantitative analysis. Some studies have shown no benefit at all to carers and the only clear benefit to emerge from more elaborate randomized controlled trials is a modest reduction in caregiver distress. Quantitative instruments may miss some of the benefits.

This study aimed to compare care recipient and caregiver perceptions of quality of life in patients (QoL-p) with Alzheimer's disease (AD) and to identify associated factors, and the concordances-discrepancies. A cross-sectional analytic study of 236 patients and their carers was carried out using the Quality of Life in Alzheimer's Disease (QoL-AD) scale, socio-demographic data and clinical examination. Patients scored the QoL-AD more favourably than did caregivers. Cognitive deterioration did not affect the perception of QoL-AD.

Scotland's National Dementia Strategy calls for people with dementia and their carers to give voice to what they see as the priorities for dementia research. We sent questionnaires on dementia research priorities, locus and type of research, desired outcome measures and willingness to volunteer, to two groups of dementia research stakeholders: (1) people with dementia and their carers who may or may not be participating in research and (2) those who are directly participating in research. We also made the questionnaire available on a national dementia research website.

Background  Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services.

Materials and Methods  Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers.

Background: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital.

Objectives: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes.

Argues that there has been global neglect of service users' and carers' experiences of dementia care provision in rural areas. The  paper draws on a qualitative study of service provision for people with dementia and their carers in remote and rural Scotland. It draws on interviews with 15 people with dementia and 16 carers to explore their views about health and social dementia care service provision in rural Scotland. A further 14 carers of people with dementia participated in one of three focus groups.

This study uses focus groups of users, carers, and structured staff interviews to explore the physical health needs of mental health services users and the barriers that make it hard for them to seek or gain access to services. Results found that despite the inextricable link between physical well-being and mental health, professionals in both primary and secondary care fail to view users holistically. Professional role ambiguity and poor communications result in access difficulties for users and add to the burden felt by carers.

Reports on a small research evaluation of the Early Onset Dementia (EOD) Service for younger people in North Tyneside. Results found that the service they provide in North Tyneside was well regarded by both carers and people with dementia.

Six recorded stories giving first-hand personal accounts of carers of people experiencing dementia or those nearing the end of their lives. Each story can be used to highlight and support areas of learning covered by the Care Council's Knowledge Sets for dementia and end of life care.