Shared decision-making in dementia: A review of patient and family carer involvement

Dementia (London). 2016 Sep;15(5):1141-57. doi: 10.1177/1471301214555542. Epub 2014 Nov 3.


This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

Keywords: care values; caregiving; decision-making; dementia; personhood.

Publication types

  • Review

MeSH terms

  • Caregivers / psychology*
  • Decision Making*
  • Dementia / psychology*
  • Female
  • Humans
  • Male
  • Patient Participation / psychology*