title: Shared decision-making in dementia: A review of patient and family carer involvement.
abstract: 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.
authors.affiliation: Oregon Health & Science University, Portland, OR, USA Millerly@ohsu.edu.
authors.forename: Lyndsey M
authors.initials: LM
authors.lastname: Miller
authors.affiliation: Benjamin Rose Institute on Aging, Cleveland, OH, USA.
authors.forename: Carol J
authors.initials: CJ
authors.lastname: Whitlatch
authors.affiliation: Oregon Health & Science University, Portland, OR, USA.
authors.forename: Karen S
authors.initials: KS
authors.lastname: Lyons
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D003704:Dementia / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010358:Patient Participation / Q000523:psychology*
keywords: care values; caregiving; decision-making; dementia; personhood