Abstract
Background and ObjectivesIn 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, nonpharmacologic 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 MethodsUsing 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 prerandomization, and 4 and 12 months postrandomization. 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.ResultsAfter 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 < .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 = .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 = .02) than those receiving UC.Discussion and ImplicationsEmbedding 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.Clinical Trials Registration NumberNCT02365051.
Highlights
Background and ObjectivesIn the absence of effective pharmacotherapy, there is an urgent need to test evidence-based dementia care interventions using pragmatic trial approaches
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 home and community-based service (HCBS) (COPE; n = dyads) or usual HCBS only (Usual Care or usual care (UC); n = dyads)
Notes: ADL = activities of daily living; IADL = instrumental activities of daily living; ADRD = Alzheimer’s disease and related dementia; CHCPE = Connecticut Home Care Program for Elders; COPE = Care of Persons with Dementia in their Environments; SLUMS = Saint Louis University Mental Status measure. aFor persons living with ADRD who had two or fewer missing items on the Quality of Life—Alzheimer’s Disease (QOL-AD), missing values were replaced with mean values of all nonmissing items to calculate a score
Summary
Background and ObjectivesIn 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, nonpharmacologic 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. 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 Such efforts have involved translational studies that identify adaptations needed to evidence-based programs in dementia care that are required to embed them in health care systems in a more pragmatic fashion (Fortinsky et al, 2016; Gitlin & Czaja, 2016; Gitlin et al, 2015). Most recently, published translational studies using single group pretest-posttest designs found that beneficial outcomes for persons living with ADRD and/or caregivers could be achieved when efficacious interventions are incorporated into community service settings (Bass et al 2019; Cho et al, 2019; Hodgson & Gitlin, in press)
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