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Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

Kerpershoek, Liselot, de Vugt, Marjolein ORCID: 0000-0002-2113-4134, Wolfs, Claire, Woods, Bob ORCID: 0000-0002-6781-651X, Jelley, Hannah, Orrell, Martin ORCID: 0000-0002-1169-3530, Stephan, Astrid, Bieber, Anja, Hopper, Louise ORCID: 0000-0002-9382-5241, Irving, Kate ORCID: 0000-0002-9255-4574 and Verhey, Frans ORCID: 0000-0002-8307-8406 (2017) Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice. Aging & Mental Health, 22 (7). ISSN 1360-7863

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Abstract

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.

Item Type:Article (Published)
Refereed:Yes
Uncontrolled Keywords:Dementia; (un)met needs; informal carer; quality of life
Subjects:UNSPECIFIED
DCU Faculties and Centres:DCU Faculties and Schools > Faculty of Science and Health > School of Nursing and Human Sciences
Publisher:Routledge (Taylor & Francis)
Official URL:https://dx.doi.org/10.1080/13607863.2017.1390732
Copyright Information:© 2017 The Authors. Open Access (CC-BY 4.0)
Funders:EU Joint Programme – Neurodegenerative Disease Research (JPND) [grant number 733051001]
ID Code:27584
Deposited On:18 Aug 2022 13:43 by Thomas Murtagh . Last Modified 18 Aug 2022 13:43

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