How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings.

BACKGROUND: During recent decades, there has been a growing recognition that people cannot be assumed incapable of making decisions about their own care solely on the basis of a dementia diagnosis and international agreements and legislative changes have strengthened the formal right for people with dementia to participate in decisions on care services. This raises important questions about how these decisions are currently made and experienced in practice. In this review, we address this question and highlight directions for further research.
METHODS: We searched CINAHL, PsycINFO, ASSIA, Social Services Abstracts, Science Direct, Academic Search Premier, and PubMed. Twenty-four pertinent articles were identified, all representing qualitative studies. Relevant findings were extracted and synthesized along dimensions of involvement of the person with dementia in decisions on care services, using an integrative approach to qualitative synthesis.
RESULTS: We identified three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions: excluded, prior preferences taken into account, and current preferences respected. Several (10) articles seemed to be based on the assumption that decisions on care services are invariably and solely made within the family and without participation of the person with dementia.
CONCLUSIONS: The review emphasizes the need for more updated research about international debates and agreements concerning capabilities and rights of people with dementia and about the (potential) formal contexts of care decisions in the country concerned. This, we argue, is vital for future knowledge production in the area.