Dataset Information

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

ABSTRACT:

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, 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 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 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.

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 < .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 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.

Clinical trials registration number

NCT02365051.

SUBMITTER: Fortinsky RH

PROVIDER: S-EPMC7745768 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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 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 Wakefield Dorothy D

Innovation in aging 20201026 6

<h4>Background and objectives</h4>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, 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 ...[more]

PMID: 33367114

Similar Datasets

Project description:ObjectivesTo develop and evaluate the effectiveness of a home based intervention in reducing caregiver burden, promoting caregiver mental health and reducing behavioural problems in elderly persons with dementia.Methodology and principal findingsThis was a randomised controlled trial in which the person with dementia-caregiver dyad was randomly allocated either to receive the intervention immediately or to a waiting list group which received the intervention after 6 months. It was carried out in communities based in two talukas (administrative blocks) in Goa, India. Mild to moderate cases with dementia (diagnosed using the DSM IV criteria and graded using the Clinical Dementia Rating scale) and their caregivers were included in the trial. Community based intervention provided by a team consisting of Home Care Advisors who were supervised by a counselor and a psychiatrist, focusing on supporting the caregiver through information on dementia, guidance on behaviour management, a single psychiatric assessment and psychotropic medication if needed. We measured caregiver mental health (General Health Questionnaire), caregiver burden (Zarit Burden Score), distress due to behavioural disturbances (NPI-D), behavioural problems in the subject (NPI-S) and activities of daily living in the elder with dementia (EASI). Outcome evaluations were masked to the allocation status. We analysed each outcome with a mixed effects model. 81 families enrolled in the trial; 41 were randomly allocated to the intervention. 59 completed the trial and 18 died during the trial. The intervention led to a significant reduction of GHQ (-1.12, 95% CI -2.07 to -0.17) and NPI-D scores (-1.96, 95%CI -3.51 to -0.41) and non-significant reductions in the ZBS, EASI and NPI-S scores. We also observed a non-significant reduction in the total number of deaths in people with dementia in the intervention arm (OR 0.34, 95% CI 0.01 to 1.03).ConclusionHome based support for caregivers of persons with dementia, which emphasizes the use of locally available, low-cost human resources, is feasible, acceptable and leads to significant improvements in caregiver mental health and burden of caring. ClinicalTrials.gov NCT00479271.

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.

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:IntroductionAccelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for "good" home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers.MethodsAs part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a piori framework, new themes were developed.FindingsOur findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family-care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs.InterpretationWith an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.

Dataset Information

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

Background and objectives

Research design and methods

Results

Discussion and implications

Clinical trials registration number

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets