Planning for the rest-of-life, not end-of-life: Reframing advance care planning for people with dementia

Yapp, G; Sinclair, C; Kelly, A; Williams, K; Amgarth-Duff, I; Agar, M

Planning for the rest-of-life, not end-of-life: Reframing advance care planning for people with dementia

Yapp, G Sinclair, C Kelly, A Williams, K Amgarth-Duff, I Agar, M

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Publisher:: Routledge
Publication Type:: Chapter
Citation:: Dementia as Social Experience: Valuing Life and Care, 2019, pp. 134-155
Issue Date:: 2019-07-26

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Field	Value	Language
dc.contributor.author	Yapp, G
dc.contributor.author	Sinclair, C
dc.contributor.author	Kelly, A
dc.contributor.author	Williams, K
dc.contributor.author	Amgarth-Duff, I
dc.contributor.author	Agar, M https://orcid.org/0000-0002-6756-6119
dc.date.accessioned	2022-12-20T02:29:51Z
dc.date.available	2022-12-20T02:29:51Z
dc.date.issued	2019-07-26
dc.identifier.citation	Dementia as Social Experience: Valuing Life and Care, 2019, pp. 134-155
dc.identifier.isbn	9780815374572
dc.identifier.uri	http://hdl.handle.net/10453/164495
dc.description.abstract	Advance care planning (ACP) is a process of discussion about a person’s goals and values for future care, which is aimed at extending personal autonomy into a time when they cannot make decisions. We know the loss of decision-making capacity is more certain for those with dementia, hence the importance of ensuring people with dementia and their carers participate in ACP, with the opportunity to discuss support and the ‘type’ of care they would prefer, thus extending their autonomy as far as possible. This chapter is based on broad consultation with health professionals and consumer organisations across Australia, to identify how to increase uptake of ACP among people with dementia and their carers. Respondents indicated that the traditional approach focussing on medical end-of-life interventions was less appropriate for people with dementia, while approaches oriented to a psychosocial philosophy of care were considered more suitable. These might include, for example, family- and person-centred approaches, incorporating values and spiritual, cultural and lifestyle issues. Respondents across all settings emphasised the relational aspects of ACP: what matters most are conversations that value and inform ‘rest-of-life’ not just end-of-life, as well as the appointment of trusted substitute decision-makers. Rather than focusing on medical decision-making, ACP models need to incorporate broader social, personal and community contexts to ensure that outcomes reflect those identified as important by people with dementia.
dc.format.extent	11
dc.language	en
dc.publisher	Routledge
dc.relation.ispartof	Dementia as Social Experience: Valuing Life and Care
dc.relation.isbasedon	10.4324/9781351241816-8
dc.rights	info:eu-repo/semantics/closedAccess
dc.title	Planning for the rest-of-life, not end-of-life: Reframing advance care planning for people with dementia
dc.type	Chapter
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
utslib.copyright.status	closed_access	*
pubs.consider-herdc	false
dc.date.updated	2022-12-20T02:29:49Z
pubs.place-of-publication	UK
pubs.publication-status	Published
dc.location	UK

Abstract:

Advance care planning (ACP) is a process of discussion about a person’s goals and values for future care, which is aimed at extending personal autonomy into a time when they cannot make decisions. We know the loss of decision-making capacity is more certain for those with dementia, hence the importance of ensuring people with dementia and their carers participate in ACP, with the opportunity to discuss support and the ‘type’ of care they would prefer, thus extending their autonomy as far as possible. This chapter is based on broad consultation with health professionals and consumer organisations across Australia, to identify how to increase uptake of ACP among people with dementia and their carers. Respondents indicated that the traditional approach focussing on medical end-of-life interventions was less appropriate for people with dementia, while approaches oriented to a psychosocial philosophy of care were considered more suitable. These might include, for example, family- and person-centred approaches, incorporating values and spiritual, cultural and lifestyle issues. Respondents across all settings emphasised the relational aspects of ACP: what matters most are conversations that value and inform ‘rest-of-life’ not just end-of-life, as well as the appointment of trusted substitute decision-makers. Rather than focusing on medical decision-making, ACP models need to incorporate broader social, personal and community contexts to ensure that outcomes reflect those identified as important by people with dementia.

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http://hdl.handle.net/10453/164495