Subjective needs of people with dementia: a review of the literature

OBJECTIVE: Insight into the individual care needs of the growing number of people with dementia is necessary to deliver more customized care. Our study aims to provide an overview of the literature on the subjective needs of people with dementia. METHOD: Electronic databases were searched for publications on subjective needs between January 1985 and July 2005, and reference lists were cross-referenced. Extracts of needs were classified within problem areas of the (Dutch) National Dementia Program and quality of life domains, and the extracts were classified as a "need" (an implicitly communicated felt state of deprivation), "want" (expression of a need) or "demand" (suitable solution to fulfill a need). RESULTS: Subjective needs were found in 34 studies with various research aims, such as awareness and coping. Few studies aimed to measure needs of people with dementia. The most frequently reported needs of people with dementia were the need to be accepted and respected as they are, the need to find adequate strategies to cope with disabilities, and the need to come to terms with their situation. Explicit wants or demands were reported less frequently than needs. CONCLUSION: The high number of reported needs and the limited number of wants and demands show that people with dementia do not frequently mention how they want their needs to be met. Most reported needs are not instrumental, but are related to well-being and coping. Further research to inventory these needs could help achieve more demand-directed and better attuned care in the future.