How are decisions on care services for people with dementia made and experienced? : A qualitative synthesis of recent empirical findings
2014 (English)Conference paper, Abstract (Refereed)
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. The aim of this presentation is to address this question and highlight directions for further research.
The presentation is based on a systematic review and qualitative synthesis of recent empirical findings. For inclusion in the review, a publication had to meet the criteria of being published between 2005 and 2013 in a peer-reviewed journal, and be written in English. Twenty-four 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. Three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions were identified: excluded, prior preferences taken into account, current preferences respected. Several 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.
Our study 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.
Place, publisher, year, edition, pages
IdentifiersURN: urn:nbn:se:liu:diva-111546OAI: oai:DiVA.org:liu-111546DiVA: diva2:757542
2nd International Conference - Life with dementia:relations, Centre for Dementia Research, Linköping University, Norrköping, Sweden, 15-17 October, 2014