Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT.
Open accessAbstract
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
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Enhanced consenting techniques were used and participants' comprehension was assessed using the teach-back method.
“Enhanced consenting techniques were used [19] and participants’ comprehension was assessed using the teach-back method [19].”
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 [19]
The Design and Methods section (page unavailable) says the researchers integrated enhanced consent techniques and verified comprehension before eliciting care preferences. It does not identify that comprehension check as the teach-back method; a search for “teach-back” found no such description in our copy. (LLM, conf=0.86)
Experimental — accuracy not yet measuredOur findings are consistent with these studies that individuals with mild dementia can effectively articulate their values.
“Our findings are consistent with these studies that individuals with mild dementia can effectively articulate their values [19, 38].”
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 [19]
Only a few intervention studies exist that involved individuals with mild dementia living in community settings in the ACP process.
“As mentioned, only a few intervention studies exist that involved individuals with mild dementia living in community settings in the ACP process [19, 39–41].”
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 [19]
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- Authors
- Song, M.-K., Ward, S. E., Hepburn, K., Paul, S., Kim, H., Shah, R. C., Morhardt, D. J., Medders, L., Lah, J. J., & Clevenger, C. C.
- Affiliations
- Emory University (US)
- University of Wisconsin–Madison (US)
- Chung-Ang University (KR)
- University of Chicago (US)
- Northwestern University (US)
- Emory Healthcare (US)
- Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia.
- Corresponding author
- Song, Mi-Kyung
- Venue
- Journal of Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2019-11-01
- Volume
- 22
- Issue
- 11
- Pages
- 1410-1416
- ISSN
- 1096-6218 (ISSN-L)
- 1557-7740
- PMC
- PMC6818478
- OpenAlex
- W2966825754
- Cited by
- 47
- References
- 26
- Citations by year
- 2026: 3 · 2025: 9 · 2024: 5 · 2023: 5 · 2022: 11 · 2021: 12 · 2020: 2
- FWCI
- 5.76
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Palliative Medicine (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Institute on Aging (R01AG057714, P30AG013854)
- 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, surrogate decision-making, end-of-life wishes, decisional conflict, decision-making capacity, videoconferencing, early-stage dementia, goals of care, intervention adaptation
- MeSH terms
- Aged, Aged, 80 and over, Dementia, Female, Humans, Interviews as Topic, Male, Middle Aged, Patient Participation, Advance Care Planning, Qualitative Research
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