Planning ahead with dementia: what role can advance care planning play? A review on opportunities and challenges.

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State: Public
Version: author
License: CC BY 4.0
Serval ID
serval:BIB_1C5A04D7EC77
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
Planning ahead with dementia: what role can advance care planning play? A review on opportunities and challenges.
Journal
Swiss medical weekly
Author(s)
Bosisio F., Jox R.J., Jones L., Rubli Truchard E.
ISSN
1424-3997 (Electronic)
ISSN-L
0036-7672
Publication state
Published
Issued date
17/12/2018
Peer-reviewed
Oui
Volume
148
Pages
w14706
Language
english
Notes
Publication types: Journal Article ; Review
Publication Status: epublish
Abstract
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care. Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer’s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient’s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient’s cognitive impairments and lay out dementia-specific scenarios. Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.
Keywords
Advance Care Planning, Attitude to Death, Communication, Decision Making, Dementia/nursing, Dementia/psychology, Health Personnel, Humans, Palliative Care/methods, Switzerland
Pubmed
Web of science
Open Access
Yes
Create date
23/01/2019 10:56
Last modification date
23/03/2024 7:22
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