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.

This paper is one of a number reporting on the Access to Timely Formal Care (Actifcare) study. It reports on the domains and levels of need among 451 community dwelling dyads of people with dementia and their caregiver. The paper also discusses the relationship between needs and quality of life (QOL) from the perspective of the person with dementia and their caregiver. The greatest needs reported by people with dementia related to company, information and day time activities but overall they reported less unmet needs than their caregivers or the researchers, suggesting a significant difference in perspective. The authors suggest this may be linked to the person's efforts to remain autonomous resulting in an underplay of needs or it may be related to a lack of insignt on the part of the person with dementia. Most met needs are found to be met through informal care and the study found that as care needs increased there was a decrease in carer's QOL. The authors comment on the potential for differing perspectives among dyads to create conflict and the need for professionals to be trained in this area. They also sugest the identifed domains should be the primary focus for interventions aiming to improve quality of life.
Title: 
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.
Date: 
2017
Journal Area: 
Theme or key words: 
References: 
Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., Stephan, A., Bieber, A., Meyer, G., Selbaek, G. and Handels, R., 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, pp.1-6