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Implementing advance care planning in early dementia care: results and insights from a pilot interventional trial
- Source :
- BMC Geriatrics, Vol 21, Iss 1, Pp 1-11 (2021), BMC Geriatrics
- Publication Year :
- 2021
- Publisher :
- BMC, 2021.
-
Abstract
- Background Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons’ decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial. Methods This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives’ knowledge of PWED’s preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers’ reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants’ reasons to participate to the study, satisfaction with the tool and difficulties perceived. Results The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED’s preferences and relatives’ decision on their behalf, and relatives’ perceived control over healthcare decisions. Conclusion Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP. Trial registration This trial was registered in the database clinicaltrial.gov with the number NCT03615027.
- Subjects :
- Advance care planning
medicine.medical_specialty
media_common.quotation_subject
Trial
Acceptability
Intervention (counseling)
Health care
medicine
Humans
Dementia
Prospective Studies
Aged
media_common
Aged, 80 and over
business.industry
Communication
Research
Goals of care
RC952-954.6
Feasibility
medicine.disease
Test (assessment)
Geriatrics
Facilitator
Family medicine
Scale (social sciences)
Geriatrics and Gerontology
Advance Directives
business
Alzheimer’s disease
Autonomy
Subjects
Details
- Language :
- English
- ISSN :
- 14712318
- Volume :
- 21
- Issue :
- 1
- Database :
- OpenAIRE
- Journal :
- BMC Geriatrics
- Accession number :
- edsair.doi.dedup.....45b6d75f84284448b63f115f6757e76b