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

LAI Michelle, JEON Yun-Hee, McKENZIE Heather
Journal article citation:
International Psychogeriatrics, early cite 14 February 2019,
Cambridge Journals

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. (Edited publisher abstract)

Subject terms:
systematic reviews, participation, advance care planning, dementia, independent living, community care, decision making, advance decision, Alzheimers disease, user participation, health professionals;
Content type:
systematic review
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