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Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment.

ABSTRACT: Background: Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives: To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects: We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements: PwCIs' completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs' ACP preferences between PwCIs and care partners. Results: In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions: Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs' uptake of ADs.

SUBMITTER: Shepherd-Banigan M

PROVIDER: S-EPMC9189253 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

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Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment.

Shepherd-Banigan Megan M Ford Cassie B CB DePasquale Nicole N Smith Valerie A VA Belanger Emmanuelle E Lippmann Steven J SJ O'Brien Emily C EC Van Houtven Courtney H CH

Journal of palliative care 20211213 3

Background: Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives: To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects: We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs ...[more]

PMID: 34898305

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Project description:BackgroundStudies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes.MethodsWe used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements.ResultsSix different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p < 0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as "adult child parent relationship & younger informal caregiver", "adult child parent relationship & middle aged informal caregiver", "non family relationship & younger informal caregiver", "couple & male informal caregiver of older age", "couple & female informal caregiver of older age", "couple & younger informal caregiver". The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes.ConclusionBased on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.

Dataset Information

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment.

Publications

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment.

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