Abstract
Objectives
Advance care planning in young-onset dementia largely remains a blind spot within
current literature. This study aimed to explore the engagement in and the conceptualization
of advance care planning from the perspective of family caregivers of persons with
young-onset dementia and to identify potential similarities and differences in this
area between American and Belgian persons with young-onset dementia and their family
caregivers.
Design
An exploratory qualitative study.
Setting and participants
We purposively sampled adult family caregivers of persons with young-onset dementia;
our respondents were 13 American and 15 Belgian caregivers with varying familial relationships
to the patient.
Methods
We conducted 28 semi-structured interviews, using the same interview guide for American
and Belgian respondents. Verbatim transcripts were analysed through the method of
constant comparative analysis.
Results
Important similarities between American and Belgian respondents were restricted knowledge
of advance care planning, limited communication about advance directives, and their
recommendation for professionals to timely initiate advance care planning. Major differences
were attention paid to those end-of-life decisions depicted in the legislature of
their respective countries, American caregivers placed higher emphasis on financial
planning than their Belgian peers, and, in the case of consulting professionals for
advance directives, American caregivers turned to lawyers, whereas Belgian caregivers
relied on physicians.
Conclusions and implications
Specific nuances and challenges in terms of advance care planning in young-onset dementia
arise from a particular societal and legal context on the one hand, and from patients'
and caregivers' younger age on the other. Professionals' awareness of and responsiveness
to these specificities could facilitate the advance care planning process. Based on
our interpretation of results, several recommendations for practice and policy are
made.
Keywords
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Article info
Publication history
Published online: March 12, 2020
Footnotes
This work was supported by the Research Foundation Flanders (Fonds voor Wetenschappelijk Onderzoek - Vlaanderen) through a predoctoral Strategic Basic Research Fellowship granted to R.V.R. (1S75919N) and through a postdoctoral fellowship granted to A.D.V. (12V9718N). This study was also supported by a Fulbright Scholarship granted to A.D.V. (2015).
The authors declare no conflicts of interest.
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