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Supporting Family Caregivers of Persons With Dementia in the Community: Description of the 'Memory Care Home Solutions' Program and Its Impacts.

ABSTRACT: Most persons with dementia live at home, cared for by families with limited access to supportive services. We describe "Memory Care Home Solutions" (MCHS), a community-based dementia care program, and evaluate enrollees' characteristics, strategies provided and implemented, and impact on adverse health-related events (emergency medical calls, emergency room visits, hospitalizations, falls) of persons with dementia.Retrospective observational study of MCHS' Basic (5 contacts) and Enhanced (additional 4 occupational therapy contacts) services for enrolled caregivers (September 1, 2014 to March 31, 2016). In both programs, caregivers received dementia education, care strategies, and social support. For Enhanced, caregivers had additional opportunities to practice care strategies. Caregivers were interviewed by interventionists at intake, 3 and 6 months (in-person or telephone).Of 717 enrolled caregivers, most were female (73.1%), nonspouses (58.2%), Caucasian (70.8%), 63.02 (standard deviation [SD] = 13.20) years old, and caring for persons with dementia of low income (54.1%, <$39,000). Caregivers reported managing on average 11.64 (SD = 4.64) behavioral symptoms and high functional dependence (6 instrumental activities of daily living [IADLs]; 2 activities of daily living [ADLs]). Caregivers opting for Enhanced (N = 314, 44.9%) were older (p = .025), spouses (p = .002), reported greater distress with behaviors (p = .051), and managed higher dependence (ADLs, p = .018; IADLs, p = .002) than caregivers in Basic (N = 403, 56.2%). Of 1,462 strategies offered, 68.9% were implemented with no differences in implementation rate between the 2 programs. Of 279 families with follow-up, 53.4% (N = 149) reported ?1 adverse health-related events over 3-months pre-enrollment. By 3-months post-enrollment, 27.2% (N = 76) reported ?1 adverse events; reflecting a 51.0% reduction in caregivers reporting events (p < .0005). African Americans, Whites, spouses, and nonspouses benefited similarly.MCHS offers brief supportive services, resulting in fewer adverse health-related events of persons with dementia. Families managing high functional dependence opted for more assistance from occupational therapists. Evaluating real-world programs yields new understandings of caregiver service preferences for staff planning.

SUBMITTER: Gitlin LN

PROVIDER: S-EPMC5986187 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Supporting Family Caregivers of Persons With Dementia in the Community: Description of the 'Memory Care Home Solutions' Program and Its Impacts.

Gitlin Laura N LN Cigliana Jill J Cigliana Kassie K Pappa Katherine K

Innovation in aging 20170301 1

<h4>Background and objectives</h4>Most persons with dementia live at home, cared for by families with limited access to supportive services. We describe "Memory Care Home Solutions" (MCHS), a community-based dementia care program, and evaluate enrollees' characteristics, strategies provided and implemented, and impact on adverse health-related events (emergency medical calls, emergency room visits, hospitalizations, falls) of persons with dementia.<h4>Research design and methods</h4>Retrospectiv ...[more]

PMID: 29876527

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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:Background and Objectives:The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes. Research Design and Methods:The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months. Results:FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers. Discussion and Implications:This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.

Project description:Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated.This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia.124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial.This study will have great added value because to date no studies measured effectiveness and cost-effectiveness of an in-home respite care program of the Baluchon type. Results of this trial can thus give much more insight in potential benefits and disadvantages of community-based respite care. Conclusions based on this trial can help policy-makers in elaborating future directions of dementia care.Clinicaltrials.gov Identifier NCT02630446 .

Project description:BACKGROUND:As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS:Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS:We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION:We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

Dataset Information

Supporting Family Caregivers of Persons With Dementia in the Community: Description of the 'Memory Care Home Solutions' Program and Its Impacts.

Publications

Supporting Family Caregivers of Persons With Dementia in the Community: Description of the 'Memory Care Home Solutions' Program and Its Impacts.

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