Dataset Information

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

ABSTRACT: There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

SUBMITTER: White CL

PROVIDER: S-EPMC5776762 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

White Carole L CL Overbaugh Kristen J KJ Pickering Carolyn E Z CEZ Piernik-Yoder Bridgett B James Debbie D Patel Darpan I DI Puga Frank F Ford Lark L Cleveland James J

Research involvement and engagement 20180122

<h4>Background</h4>There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve ...[more]

PMID: 29387453

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Project description: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.

Project description:ObjectiveTo assess the level of caregiver burden and factors associated with it among family caregivers of persons with dementia (PWD) living in communities of Shanghai, China.DesignCross-sectional study.SettingCommunities in Hongkou District of Shanghai, China.ParticipantsA random sample of 109 older adults with dementia and their primary family caregivers.Main outcome measureCaregiver burden measured by the Caregiver Burden Inventory (CBI), and the Caregivers' depressive symptom measured by the simplified Chinese version of Self-rating Depression Scale was the outcome variable of the study. The independent variables, including the cognitive function (measured by Montreal Cognitive Assessment (MoCA), sleep quality assessed by the Pittsburgh Sleep Quality Index, abilities of daily life assessed by the Activities of Daily Living Scale, and behavioural and psychological symptoms assessed by the Neuropsychiatric Inventory of PWDs, the community service utilisation (measured by the Community Service Utilisation Measurement), perceived social support (assessed by three questions), positive aspects of caregiving (PAC) (assessed by the PAC) of dementia caregivers, were analysed. Multivariate linear regression was employed to determine the factors related to caregiver burden.ResultsThe average level of CBI was 65.92±16.74. The score of MoCA, PAC and perceived social support of caregivers were negatively associated with caregiver burden (β=-0.84, p<0.001, β=-3.61, p=0.03 and β=-1.22, p=0.001, respectively). Community service utilisation was positively associated (β=3.46, p<0.001) with caregiver burden. Perceived social support by the caregiver moderated the relationship between caregiver burden and caregivers' depression symptoms.ConclusionDementia caregivers experienced a high level of caregiver burden. The cognitive function of PWD, PAC, social support and community service utilisation were factors associated with caregiver burden. Strengthening social support, providing more high-quality home care services, promoting PAC are imperative to reduce caregiver burden.

Project description:BACKGROUND:Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. METHODS:Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app. DISCUSSION:This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center. TRIAL REGISTRATION:ISRCTN, ISRCTN46137262 . Registered 10 October 2019.

Dataset Information

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

Publications

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

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