TY - JOUR
T1 - 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
AU - Kerpershoek, Liselot
AU - de Vugt, Marjolein
AU - Wolfs, Claire
AU - Woods, Bob
AU - Jelley, Hannah
AU - Orrell, Martin
AU - Stephan, Astrid
AU - Bieber, Anja
AU - Meyer, Gabriele
AU - Selbaek, Geir
AU - Handels, Ron
AU - Wimo, Anders
AU - Hopper, Louise
AU - Irving, Kate
AU - Marques, Maria
AU - Gonçalves-Pereira, Manuel
AU - Portolani, Elisa
AU - Zanetti, Orazio
AU - Verhey, Frans
PY - 2017
Y1 - 2017
N2 - 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.
AB - 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.
KW - (un)met needs
KW - Dementia
KW - informal carer
KW - quality of life
UR - http://www.scopus.com/inward/record.url?scp=85032209002&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85032209002&partnerID=8YFLogxK
U2 - 10.1080/13607863.2017.1390732
DO - 10.1080/13607863.2017.1390732
M3 - Article
AN - SCOPUS:85032209002
SP - 1
EP - 6
JO - Aging and Mental Health
JF - Aging and Mental Health
SN - 1360-7863
ER -