The CrISP project sought to respond to carers’ identified needs for better, earlier information to help them care for people with dementia. Carers had spoken of the need for information with support. This evaluation explored the impact of the courses on carers and caring relationships. It addressed the role of information in supporting more effective care giving and more positive caring relationships. It also considered how access to information in a supportive environment impacted the experience of caring for someone with dementia.
This evaluation, commissioned by the Alzheimer’s Society, was carried out between April 2012 and February 2013 by a team of researchers at the Ογ½ΆΦ±²₯.
The research team carried out 25 in-depth interviews with carers who had attended CrISP courses. Interviews used a narrative approach enabling carers to talk about their experience of caring and reflect on the impact of the courses on that experience.
Carers were invited to take part through information circulated by the university through the Alzheimer’s Society local staff. Interviews were carried out in seven areas in London and the south of England including urban, rural and coastal areas.
The 25 carers were wives, husbands, daughters, sons and siblings of a person with dementia and were aged from 48-85. Those they cared for were aged between 78-94, with a variety of diagnoses. 68 per cent of carers lived with the person they cared for.
Overall the analysis showed that the information provided on the CrISP courses supported caring practices and carers’ needs, improved their understanding of dementia and its progression, and helped them access practical suggestions for support of the person with dementia. A few found the information difficult to handle.
The environment in which information was provided was important. Hearing from and sharing information and experiences with other carers and a knowledgeable facilitator contributed to understanding, enabled reciprocity and made carers feel supported.
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Research team
Professor Marian Barnes
Professor Flis Henwood
Naomi Smith
Professor Diane Waller
Output
External Evaluation of the Alzheimer’s Society Carer Information and Support Programme (CrISP) full report
Barnes, M and Henwood, F (2015) Information with care: Ethics and Information in care for people with dementia, Ethics and Social Welfare, 9 (2): 147-63. Barnes, M, Henwood, F and Smith, N (2014) , Dementia.
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