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BMC Palliat Care. 2018 Jun 21;17(1):88. doi: 10.1186/s12904-018-0332-2.

Advance care planning in dementia: recommendations for healthcare professionals.

Author information

1
Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium.
2
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.
3
Flanders Federation for Palliative Care, Vilvoorde, Belgium.
4
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium. Joni.Gilissen@vub.ac.be.
5
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Laarbeeklaan 103, 1090, Brussels, Belgium. Joni.Gilissen@vub.ac.be.
6
Department of Public Health and Primary Care, ACHG, KU Leuven, Leuven, Belgium.
7
Department of Sociology, University of Antwerp, Antwerp, Belgium.
8
Flemish Expertise Centre on Dementia Care, Antwerp, Belgium.
9
Academic Centre for Nursing and Midwifery, KULeuven, Leuven, Belgium.
10
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium. Lvdblock@vub.ac.be.
11
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Laarbeeklaan 103, 1090, Brussels, Belgium. Lvdblock@vub.ac.be.

Abstract

BACKGROUND:

Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.

METHODS:

Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners).

RESULTS:

Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence.

CONCLUSION:

No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

KEYWORDS:

Advance care planning; Alzheimer’s disease; Dementia; Elderly care; Guideline; Recommendations

PMID:
29933758
PMCID:
PMC6014017
DOI:
10.1186/s12904-018-0332-2
[Indexed for MEDLINE]
Free PMC Article

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