"Did I make the right decision?": The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia. (July 2019)

• Record Type: Journal Article
• Authors: Fetherstonhaugh, Deirdre; McAuliffe, Linda; Shanley, Christopher; Bauer, Michael; Beattie, Elizabeth
• Is Part Of: Dementia. Volume 18:Number 5(2019)
• Page Start: 1601
• Page End: 1614
• Publication Date: 2019-07
• Subjects: Australia -- dementia -- family caregivers -- proxy -- surrogate decision maker; Psychiatric social work -- Periodicals; Social work with older people -- Periodicals; Dementia -- Periodicals; 362.19683005
• DOI: 10.1177/1471301217721862
• Languages: English
• ISSNs: 1471-3012

Abstract

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014. Five themes were identified: becoming the only – or main – surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support – or not – from family members. An overarching construct tying the themes together is the description of the participants' experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.