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Changing practice in dementia care for people in care homes towards the end of life
- Authors:
- EVANS Catherine, GOODMAN Claire
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 8(3), August 2009, pp.424-431.
- Publisher:
- Sage
This paper reports on the background and design of an innovative study seeking to develop and test a dementia specific approach to palliative care for older people in care homes, entitled Evidence-based interventions in dementia towards the end of life (EVIDEM EoL). The study uses a two-phase prospective design. Phase I intends to explore and document characteristics and support needs for people with dementia in care homes towards the end of life. Data from phase I informs phase II, the development and testing of a dementia specific education and support tool for palliative care in care homes. This paper reports on the study's background and phase I design. The study is part of the EVIDEM research programme (Evidence-based Interventions in Dementia) ( www.evidem.org.uk ).
Culture, consent, costs and care homes: enabling older people with dementia to participate in research
- Authors:
- GOODMAN Claire, et al
- Journal article citation:
- Aging and Mental Health, 15(4), May 2011, pp.475-481.
- Publisher:
- Taylor and Francis
This paper examines factors that support and inhibit recruitment of research subjects living in care homes. It describes the methods used to recruit people with dementia to a study that tracked events and care that older people with dementia experienced over two years in six care homes. Recruitment involved meetings with staff, residents and relatives. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment. One hundred and thirty three older people with dementia were recruited in five months. The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staff's understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers. The paper concludes that there is a need to develop infrastructures of support that enable people with dementia to participate in research studies.
End of life care for older people with dementia living in a care home
- Authors:
- EVANS Catherine, GOODMAN Claire
- Journal article citation:
- Journal of Integrated Care, 16(6), December 2008, pp.15-25.
- Publisher:
- Emerald
This article reviews policies and research evidence on services for people with dementia at the end of their lives, and looks at future commissioning priorities.
End of life care for community dwelling older people with dementia: an integrated review
- Authors:
- GOODMAN Claire, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 25(4), April 2010, pp.329-337.
- Publisher:
- Wiley
This paper reviews the literature for end-of-life care for older people with dementia living in the community. Reviewing studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included, a user representative group informed decisions on the breadth of literature used, with each study selected being screened independently by two reviewers using a standardised check list. Of the 68 papers included, only 12 were exclusively concerned living and dying with dementia at home, and 6 studies included evidence from people with dementia. The studies grouped into four broad categories: dementia care towards the end of life; palliative symptom management for people with dementia; predicting the approach of death for people with dementia; and decision-making. The few studies that developed dementia specific tools to guide end of life care and outcome measures demonstrated both what could be achieved, and how much more needs to be done. The authors concluded that research pertaining to end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses, and that there is a need for further investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.