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The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

Published online by Cambridge University Press:  14 February 2019

Michelle Lai Open the ORCID record for Michelle Lai [Opens in a new window] ,
Yun-Hee Jeon  and
Heather McKenzie
Michelle Lai*
Affiliation:
Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, Camperdown, New South Wales, Australia
Yun-Hee Jeon
Affiliation:
Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, Camperdown, New South Wales, Australia
Heather McKenzie
Affiliation:
Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, Camperdown, New South Wales, Australia
*
Correspondence should be addressed to: Michelle Lai, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, 88 Mallett Street, Camperdown, New South Wales 2050, Australia. Phone: +61 2 8627 5653; Fax: +61 2 8627 1500. Email: [email protected].
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Abstract

Background:

Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.

Objectives:

To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.

Design:

This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.

Results:

Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals’ communication skills, timing of initiating conversations, relationship quality, and orientation to the future.

Conclusion:

This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

Keywords

dementiadecision makingAlzheimer’s diseasereviewadvance care planningengagement
Type
Review Article
Information
International Psychogeriatrics , Volume 31 , Issue 12: Issue Theme: Assessment of Cognitive Impairment in East Asia , December 2019 , pp. 1731 - 1746
Copyright
© International Psychogeriatric Association 2019 

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