Emerald publishing Ltd

Purpose: In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

PURPOSE: The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. DESIGN/METHOOLOGY/APPROACH: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England.

Purpose The purpose of this paper is to examine the structural relationship between the emotional and social support provided for individuals with caring responsibilities for elderly relatives, and the quality of care actually delivered. In addition, the moderating role of gender is explored. Design/methodology/approach A quantitative research design was utilised in which 200 usable questionnaires were collected from 250 respondents comprised of young adults who adopt a caregiving roles in respect of elderly parents or other close elderly relatives.

Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups.

Purpose: The purpose of this paper is to review and synthesise the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach: Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed.

Purpose: The purpose of this paper is to describe a case study to test the applicability of the discrete choice experiment (DCE) method to assess the preferences of carers of people with dementia. The focus of enquiry was home care provision. Design/methodology/approach: A multi-method approach was adopted for this pilot study. A literature review identified key characteristics of home care for dementia. This informed consultations with lay representatives. Key attributes of home care for the DCE were identified and formed the basis for the schedule.

Purpose: The purpose of this paper is to describe the development of Compass workers: a commissioned peer support model to support those caring for someone with dementia. Design/methodology/approach: The paper offers a descriptive summary of how Compass workers came to be and is informed by consultations with key stakeholders and a service evaluation encompassing both quantitative and qualitative aspects.

Purpose: The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia. Design/methodology/approach: A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives.

Purpose: Dementia cafes (also known as Alzheimer’s or memory cafes) have been running in the UK since 2000. The purpose of this paper is to report on the recommendations from recent research that interviewed family carers on their experiences of using the cafes. Design/methodology/approach: The research was carried out in cafes in and around London, and focussed on informal, unpaid carers’ experiences of using them. In total, 11 carers from five different dementia cafes were interviewed, using semi-structured questionnaires.

Purpose The purpose of this paper is to investigate the impact of various employment characteristics on the health of Canadian caregiver-employees (CEs), who are working full-time in the labor market while also providing informal/family care to adults. Design/methodology/approach Framed with Pearlin et al.’s (1990) stress model and using data from Statistic Canada’s General Social Survey Cycle 26 (2012), several work-related variables for caregivers were considered, including the availability of various forms of caregiver-friendly workplace policies (CFWPs)