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Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

ABSTRACT: Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission.The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only.The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide.

SUBMITTER: Fortinsky RH

PROVIDER: S-EPMC4979745 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

Fortinsky Richard H RH Gitlin Laura N LN Pizzi Laura T LT Piersol Catherine Verrier CV Grady James J Robison Julie T JT Molony Sheila S

Contemporary clinical trials 20160706

<h4>Background</h4>Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission.<h4>Meth ...[more]

PMID: 27394383

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Project description: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.

Project description:BackgroundChildren with medical complexity are a group of children with multiple chronic conditions and functional limitations that represent the highest health care utilization and often require a substantial number of home and community-based services (HCBS). In many states, HCBS are offered to target populations through 1915(c) Medicaid waivers. To date, no standard methods or approaches have been established to evaluate or compare 1915(c) waivers across states in the United States for children.ObjectiveThe purpose of this analysis was to develop a systematic and reproducible approach to evaluate 1915(c) Medicaid waivers for overall coverage of children with medical complexity.MethodsData elements were extracted from Medicaid 1915(c) approved waiver applications for all included waivers targeting any pediatric age range through October 31, 2018. Normalization criteria were established, and an aggregate overall coverage score was calculated for each waiver.ResultsData extraction occurred in two phases: (1) waivers that were considered nonexpired through December 31, 2017, and (2) the final sample that included nonexpired waivers through October 31, 2018. A total of 142 waivers across 45 states in the United States were included in this analysis. We found that the existing adult HCBS taxonomy may not always be applicable for child and family-based service provision. Although there was uniformity in the Medicaid applications, there was high heterogeneity in how waiver eligibility, transition plans, and wait lists were defined. Study analysis was completed in January 2019, and after analyzing each individual waiver, results were aggregated at the level of the state and for each diagnostic subgroup. The published results are forthcoming.ConclusionsTo our knowledge, this is the first study to systematically evaluate 1915(c) Medicaid waivers targeting children with medical complexity that can be replicated without the threat of missing data.International registered report identifier (irrid)RR1-10.2196/13062.

Project description:ObjectiveTo examine whether randomization to permanent supportive housing (PSH) versus usual care reduces the use of acute health care and other services among chronically homeless high users of county-funded services.Data sourcesBetween 2015 and 2019, we assessed service use from Santa Clara County, CA, administrative claims data for all county-funded health care, jail and shelter, and mortality.Study designWe conducted a randomized controlled trial among chronically homeless high users of multiple systems. We compared postrandomization outcomes from county-funded systems using multivariate regression analysis.Data collectionWe extracted encounter data from an integrated database capturing health care at county-funded facilities, shelter and jails, county housing placement, and death certificates.Principal findingsWe enrolled 423 participants (199 intervention; 224 control). Eighty-six percent of those randomized to PSH received housing compared with 36 percent in usual care. On average, the 169 individuals housed by the PSH intervention have remained housed for 28.8 months (92.9 percent of the study follow-up period). Intervention group members had lower rates of psychiatric ED visits IRR 0.62; 95% CI [0.43, 0.91] and shelter days IRR 0.30; 95% CI [0.17, 0.53], and higher rates of ambulatory mental health services use IRR 1.84; 95% CI [1.43, 2.37] compared to controls. We found no differences in total ED or inpatient use, or jail. Seventy (37 treatment; 33 control) participants died.ConclusionsThe intervention placed and retained frequent user, chronically homeless individuals in housing. It decreased psychiatric ED visits and shelter use, and increased outpatient mental health care, but not medical ED visits or hospitalizations. Limitations included more than one-third of usual care participants received another form of subsidized housing, potentially biasing results to the null, and loss of power due to high death rates. PSH can house high-risk individuals and reduce emergent psychiatric services and shelter use. Reductions in hospitalizations may be more difficult to realize.

Dataset Information

Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

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Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

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