Feasibility of a Healthcare Proxy Counseling Program for Patients with Alzheimer's Disease

Marin, Deborah B.; Rudin, Edward; Fox, Barry C.; Neugroschl, Judith; Brickman, Adam M.; Northrop, J; Fine, Elizabeth; Zaklad, Gabrielle R.; Meier, Diane E.

doi:10.1089/jpm.1999.2.323

Cited by 4 publications

(6 citation statements)

References 36 publications

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“…16 Other titles included Peer Mentor, 11 Simulated Patient, 12 Advance Directive Volunteer, 14 Peer Educator, 5,18 and Lay Counselor. 13…”

Section: Reasons Volunteers Have Been Incorporated In Models Of Acpmentioning

confidence: 99%

“…11,13e15,17,19,20 Three used lay volunteers (nonprofessionals who were trained), 13e15 and three used peers (patients who were trained). 11,19,20 Interventions aimed to facilitate ACP with populations including people with Alzheimer's disease, 13 advanced cancer, 15,17,20 chronic kidney disease, 11 attending a geriatric clinic, 14 or admitted to hospital. 19 Four of the facilitation studies 11,17,19,20 described the ACP training provided to volunteers (Table 2).…”

Section: Models Of Acpmentioning

confidence: 99%

“…11 Completion of ACP Conversations and ACDs. Five of the seven ACP facilitation studies 11,13,14,17,20 measured ACP conversations or ACD completion rate, with all showing a trend toward greater completion rate following the ACP volunteer intervention. In an 18month U.S. evaluation study involving 50 volunteers trained to facilitate ACP conversations across 12 cancer centers, lay navigators initiated 1319 (15% of total patients) ACP conversations, with 481 of these patients completing an ACP conversation.…”

Section: Models Of Acpmentioning

confidence: 99%

“…Two facilitation studies using lay volunteers to ''counsel'' either people with Alzheimer's disease (n ¼ 64) 13 or people attending a geriatric clinic (n ¼ 34), 14 whom had not previously completed ACP, reported that the majority of people (between 52%e71%) went on to complete a document to either record preferences and instructions or to appoint a ''health care proxy.'' In another study 20 of 11 patients with cancer who did not have an ACD at the beginning of an ACP facilitation intervention, five (45%) had completed an ACD by the end of the study.…”

Section: Models Of Acpmentioning

confidence: 99%

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Volunteer Involvement in Advance Care Planning: A Scoping Review

Sellars

Simpson

Kelly

et al. 2019

Journal of Pain and Symptom Management

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Context. Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP). Objectives. A scoping review was conducted to map existing research on volunteer involvement in ACP and to identify gaps in current knowledge base. Methods. We followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP. Results. Of 11 studies identified, nine different ACP models (initiatives to improve uptake of ACP) were described. Most of the models involved volunteers facilitating ACP conversations or advance care directive completion (n ¼ 6); and three focused on ACP education, training, and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP, and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a volunteer navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement. Conclusions. Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research should focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.

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“…16 Other titles included Peer Mentor, 11 Simulated Patient, 12 Advance Directive Volunteer, 14 Peer Educator, 5,18 and Lay Counselor. 13…”

Section: Reasons Volunteers Have Been Incorporated In Models Of Acpmentioning

confidence: 99%

Section: Models Of Acpmentioning

confidence: 99%

Section: Models Of Acpmentioning

confidence: 99%

Section: Models Of Acpmentioning

confidence: 99%

See 2 more Smart Citations

Volunteer Involvement in Advance Care Planning: A Scoping Review

Sellars

Simpson

Kelly

et al. 2019

Journal of Pain and Symptom Management

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“…Notably, most of the few available interventions are multi-component psychosocial interventions in which ACP is embedded; few studies of these have reported on ACP engagement with validated outcomes [15][16][17][18][19], and none have been underpinned by a theoretical framework [20][21]. Hence, conclusions regarding the mechanisms and effects of these interventions on ACP engagement have yet to be drawn.…”

Section: Introductionmentioning

confidence: 99%

A dyadic advance care planning intervention for older adults with early-stage dementia and their family caregivers in a community care setting: A feasibility trial

Yeung

Chan

2022

Preprint

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Background People with dementia gradually lose mental capacity as the disease progresses and require advance care planning (ACP) to express care preferences. However, no culturally appropriate ACP intervention has been developed to engage individuals with early-stage dementia and their family caregivers in the ACP process. Methods A multi-centre, quasi-experimental study was conducted to test the feasibility and acceptability of a theory-guided, dyadic ACP intervention, namely the ‘Have a Say’ programme. This three-session intervention was designed to engage person with dementia–family caregiver dyads in ACP. The feasibility of the trial design, intervention procedures, subject recruitment and retention, and study instruments were assessed. Four instruments were administered at baseline (T0), immediately after the intervention (T1), and at 1 month (T2) and 3 months post-intervention (T3). Acceptability of the intervention was determined by the satisfaction score and completion rate. Qualitative interviews were conducted with a sub-sample of completers and ACP facilitators for process evaluation. Results Subject recruitment from five elderly community centres yielded a recruitment rate of 60% and resulted in 36 client–caregiver dyads. The intervention was acceptable to the dyads, as indicated by the mean satisfaction score of 4.4 out of 5 and completion rate of 94.4%. The attrition rates at T1, T2, and T3 were 5.6%, 11.1%, and 19.4%, respectively. Participants responded to all study instruments except the ACP engagement survey by individuals with dementia. Qualitative interviews revealed that the strengths of the intervention were triadic involvement of and trusting relationships among the individuals with dementia, their family caregivers and ACP facilitators, and documentation of clients’ views and care preferences. Two implementation challenges related to the structured format of the intervention and discussion about medical issues were also identified. Conclusions This ACP intervention and trial design were feasible and acceptable to the dyads in the community care setting. Several refinements for the intervention were identified, including an additional nurse-led group-based session, flexibility to arrange dyadic sessions, and measuring of ACP engagement for both individuals with dementia and family caregivers. A definitive randomised controlled trial to test the refined intervention is warranted. Trial registration Retrospectively registered on 14/08/2020 at clinicaltrials.gov (Identifier: NCT04513106).

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Care Near the End of Life

Goodlin¹

2003

Geriatric Medicine

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Feasibility of a Healthcare Proxy Counseling Program for Patients with Alzheimer's Disease

Cited by 4 publications

References 36 publications

Volunteer Involvement in Advance Care Planning: A Scoping Review

Volunteer Involvement in Advance Care Planning: A Scoping Review

A dyadic advance care planning intervention for older adults with early-stage dementia and their family caregivers in a community care setting: A feasibility trial

Care Near the End of Life

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