Care Interventions for People Living With Dementia and Their Caregivers

Butler, Mary; Gaugler, Joseph E.; Talley, Kristine Mc; Abdi, Hamdi I.; Desai, Priyanka; Duval, Susan; Forte, Mary; Nelson, Victoria A.; Ng, Weiwen; Oullette, Jeannine M.; Ratner, Edward; Saha, Jayati; Shippee, Tetyana; Wagner, Brittin; Wilt, Timothy J; Yeshi, Lobsang

doi:10.23970/ahrqepccer231

Cited by 65 publications

(82 citation statements)

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“…Skillful care coordination offered at an appropriate level of intensity can improve outcomes for persons living with dementia and their families and other caregivers, including reduced use of institutional care [63,64]. Care coordination should be person-centred, include sustained attention to the needs of informal caregivers, and include targeted referrals to community-based supports and services.…”

Section: Summit Fourth Theme: Core Educational Competencies Domains and Milestonesmentioning

confidence: 99%

“…Diverse payment models across care settings and specialties, and state-level variability regarding qualifications for dementia care coordinators present challenges in assuring baseline competency among care coordinators [64]. Moreover, the relatively low strength of evidence regarding care coordination interventions may delay widespread implementation of these promising interventions, particularly if basic qualifications for care coordination staff remain unclear [63]. Research to develop consensus around basic-and advanced-level qualifications for care coordination that also promotes effective care transitions would form the basis for pragmatic comparative effectiveness trials that could establish more definitively the competencies required for effective care coordination for persons living with dementia.…”

Section: Summit Fourth Theme: Core Educational Competencies Domains and Milestonesmentioning

confidence: 99%

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Research Recommendations to Address Dementia Workforce Development Needs

Weiss¹,

Tumosa²,

Espinoza³

et al. 2021

OBM Geriatrics

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This policy paper presents workforce development recommendations for research, clinical care and public stakeholders as they plan future research activities to strengthen the workforce to support the healthcare and social needs of persons living with dementia and their families and caregivers. To create these recommendations, the 2020 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers (2020 Summit) convened a Workforce Development Stakeholder Workgroup. The Stakeholder Workgroup consisted of an interprofessional team of health professionals from academia, professional organizations, and the federal government with expertise in dementia workforce development. The resulting ten workforce development recommendations represent four themes: (1) Accountability by addressing progress towards implementing the 2017 Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers (2017 Summit) workforce recommendations; (2) Improving recruitment, retention, and job quality for direct care workers; (3) Creating a tech-savvy and culturally competent workforce; and (4) Developing educational core competencies, domains and milestones. These recommendations will positively impact the ability of persons living with dementia and their caregivers to access person- and family-centred dementia care that promotes independence and quality of life among those navigating their dementia journey.

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Section: Summit Fourth Theme: Core Educational Competencies Domains and Milestonesmentioning

confidence: 99%

Section: Summit Fourth Theme: Core Educational Competencies Domains and Milestonesmentioning

confidence: 99%

Research Recommendations to Address Dementia Workforce Development Needs

Weiss¹,

Tumosa²,

Espinoza³

et al. 2021

OBM Geriatrics

View full text Add to dashboard Cite

show abstract

“…In the absence of effective pharmacotherapy to treat ADRD or appreciably slow symptom progression, numerous nonpharmacologic interventions designed to help persons living with ADRD and caregivers have been implemented and evaluated. Meta-analyses and scoping reviews of systematic reviews of these interventions have found evidence of efficacious programs, particularly on improving skill-building and psychological outcomes of caregivers of persons living with ADRD ( Butler et al, 2020 ; Chen & Zheng, 2020; Gaugler et al, 2020 ; Gitlin, Jutkowitz, et al, 2020 ). Investigators are increasingly turning their attention to replicating or adapting efficacious interventions for persons living with ADRD and their caregivers in “real-world” health care and social service systems and settings.…”

Section: Background and Objectivesmentioning

confidence: 99%

Effectiveness of the Care of Persons With Dementia in Their Environments Intervention When Embedded in a Publicly Funded Home- and Community-Based Service Program

Fortinsky

Gitlin

Pizzi

et al. 2020

Innovation in Aging

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Background and Objectives In the absence of effective pharmacotherapy, there is an urgent need to test evidence-based dementia care interventions using pragmatic trial approaches. We present results from a study in which an evidence-based, non-pharmacologic intervention for persons living with Alzheimer’s disease and related dementia (ADRD) and their informal caregivers, Care of Persons with Dementia in their Environments (COPE), was tested in a Medicaid and state revenue-funded home and community-based service (HCBS) program. Research Design and Methods Using pragmatic trial design strategies, persons living with ADRD and their caregivers were randomly assigned as dyads to receive COPE plus usual HCBS (COPE; N=145 dyads) or usual HCBS only (Usual Care, or UC; N=146 dyads). Outcomes were measured pre-randomization, and 4 and 12 months post-randomization. Outcomes for persons living with ADRD included functional independence, activity engagement, self-reported quality of life, and behavioral and psychological symptoms. Caregiver outcomes included perceived well-being, confidence using dementia-management strategies, and degree of distress caused by behavioral and psychological symptoms. Results After 4 months, caregivers receiving COPE reported greater perceived well-being (least squares mean=3.2; 95% CI: 3.1-3.3) than caregivers receiving UC (3.0; 2.9-3.0; p<0.001), and persons living with ADRD receiving COPE, compared to those receiving UC, showed a strong trend toward experiencing less frequent and less severe behavioral and psychological symptoms (9.7; 5.2-14.2 vs. 12.7; 8.3-17.1; p=0.07). After 12 months, persons living with ADRD receiving COPE were more engaged in meaningful activities (2.1; 2.0-2.1 vs. 1.9; 1.9-2.0; p=0.02) than those receiving UC. Discussion and Implications Embedding COPE in a publicly-funded HCBS program yielded positive immediate effects on caregivers’ well-being, marginal positive immediate effects on behavioral and psychological symptoms, and long-term effects on meaningful activity engagement among persons living with ADRD. Findings suggest that COPE can be effectively integrated into this service system, an important step towards widespread adoption.

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“…Obtaining this support will require compelling data on efficacy and feasibility, measured both in terms of the quality life of caregivers and care recipients but also short-and long-term health and social service costs to society. The recent comparative effectiveness review of nonpharmacological dementia caregiver intervention studies carried out by the Agency for Healthcare Research and Quality (Butler et al, 2020) suggests that we are far from meeting this standard.…”

mentioning

confidence: 99%