Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review.
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BACKGROUND: Due to the disease's progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied. AIM: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia. DATA SOURCES: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl's method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis. RESULTS: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia's decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life. CONCLUSION: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.
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Clinicians identify multiple barriers to initiating ACP conversations in persons living with dementia, including unpredictable illness trajectory, uncertainty about the right time to commence ACP, lack of time, resources, and knowledge, discomfort with ACP discussions, and difficulty determining the decision-making capacity of the person living with dementia.
“Numerous factors have been identified by clinicians as barriers to initiating ACP conversations in PLwD including unpredictable illness trajectory; uncertainty about the right time to commence the ACP process [10–12]; lack of time, resources, and knowledge; discomfort with ACP discussions [8, 13]; and difficulty in determining the decision-making capacity of the PLwD [14].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [14]
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Take-Home Messages and Further Readings
Wong, G. H. Y., Ma, B. H., Lee, M. N. Y., & Dai, D. (2024) · Cambridge University Press eBooks · doi:10.1017/9781108989336.007
- Authors
- Tilburgs, B., Vernooij-Dassen, M., Koopmans, R., van Gennip, H., Engels, Y., & Perry, M.
- Affiliations
- Radboud University Nijmegen (NL)
- Corresponding author
- Tilburgs, Bram
- Venue
- PLoS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2018-06-20
- Volume
- 13
- Issue
- 6
- Pages
- e0198535
- ISSN
- 1932-6203 (ISSN-L)
- PMC
- PMC6010277
- OpenAlex
- W2809596016
- Cited by
- 119
- References
- 72
- Citations by year
- 2026: 11 · 2025: 14 · 2024: 13 · 2023: 15 · 2022: 18 · 2021: 21 · 2020: 16 · 2019: 7 · 2018: 3
- FWCI
- 2.13
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- PLoS ONE (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- Funders
- ZonMw (79-73305-98-420)
- Radboud Universitair Medisch Centrum
- Universitas Gadjah Mada
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- dementia, advance care planning, general practitioners, barriers and facilitators, early-stage dementia, decision-making capacity, stakeholder engagement, timing of advance care planning, general practice training, quality of life, primary care
- MeSH terms
- Stakeholder Participation, Dementia, Health Facilities, Humans, Databases, Factual, Advance Care Planning, Qualitative Research, General Practitioners
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