Dataset Information

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

ABSTRACT: Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

SUBMITTER: Reckrey JM

PROVIDER: S-EPMC9636070 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature

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The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

Reckrey Jennifer M JM Perez Sasha S Watman Deborah D Ornstein Katherine A KA Russell David D Franzosa Emily E

Journal of applied gerontology : the official journal of the Southern Gerontological Society 20220505 4

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (<i>n</i> = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting fr ...[more]

PMID: 35512123

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Project description:BackgroundCare management programs are widely used to improve care coordination and management of chronic conditions for high-need older adults. With many care management programs targeting a small number of people, high-need older adults may receive services from more than one care management program (co-occurring care management), the implications of which are unknown.MethodsWe conducted semi-structured interviews with 37 care managers, 15 older adults, and 13 caregivers, who were recruited through an urban academic medical center and a large rural health system in Maryland. We analyzed interview transcripts using qualitative content analysis with the aim of understanding contributors to, implications of, and strategies to manage co-occurring care management among high-need older adults.ResultsContributors to co-occurring care management included siloed programs due to program-specific financial incentives and inability to easily identify other involved care managers, and the complex needs of the enrolled older adult population, which motivated involvement of more than one program. Implications of co-occurring care management included older adults and caregivers feeling cared for and safe when they had multiple care management programs involved and reporting value in their relationships with care managers. Older adults were identified as having greater access to resources and improved care when care manager roles were aligned in a complementary way; however, misaligned roles posed the potential for confusion about care manager accountability for tasks and resulted in frustration and lack of follow-through. Strategies for managing co-occurring care management included alignment of care manager roles through communication and negotiation and older adults and caregivers identifying and relying on a single care manager with whom they had the strongest relationship.ConclusionsInitiatives that clarify strengthen the relationship between care managers and older adults, increase care manager visibility, and facilitate communication across care managers may help foster collaboration.

Project description:BackgroundBoth Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients' and the caregivers' health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers' subjective and objective experiences for the improvement of dementia care services in both countries.MethodsGiddens' Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey.ResultsIn total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China.ConclusionsDementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like China. In Australia, dementia services need to have more components of preventing or reducing caregivers' subjective burden. As subjective burden is mediated by culture, caregiver support mechanisms should consider caregivers' needs associated with their cultural values.

Project description: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.

Project description:ObjectivesPaid caregivers (eg, home health aides and personal care attendants) provide hands-on care that helps individuals with dementia live in the community. This study (a) characterizes paid caregiving among community-dwelling individuals with dementia and (b) identifies factors associated with receipt of paid care.DesignCross-sectional analysis.SettingThe 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare recipients aged 65 years and older.ParticipantsCommunity-dwelling individuals with dementia (n = 899).MeasurementsPaid and family caregiving support was determined by participant or proxy report of help received with functional tasks. Multivariable logistic regression was used to examine factors associated with receipt of paid care. NHATS population sampling weights were used to produce national paid caregiving prevalence estimates.ResultsOnly 25.5% of community-dwelling individuals with dementia received paid care, and 10.8% received 20 hours or more of paid care per week. For those who received it, paid care accounted for approximately half of the 83 total caregiving hours (paid and family) that they received each week. Among the subgroup of individuals with advanced dementia (those with impairment in dressing, bathing, toileting, and managing medications and finances), nearly half (48.3%) received paid care. Multivariable analysis, adjusting for sociodemographic, family caregiving support, functional, and clinical characteristics, found that the odds of receiving paid care were higher among men (odds ratio [OR] = 1.91; 95% confidence interval [CI] = 1.24-2.95), the unmarried (OR = 2.20; 95% CI = 1.31-3.70), those with Medicaid (OR = 2.16; 95% CI = 1.27-3.66), and those requiring more help with activities of daily living (ADLs) (OR = 1.32; 95% CI = 1.18-1.48) and instrumental ADLs (OR = 1.29; 95% CI = 1.14-1.46).ConclusionsNew ways of making paid caregiving more accessible throughout the income spectrum are required to support family caregivers and respect the preferences of individuals with dementia to remain living in the community. J Am Geriatr Soc 68:186-191, 2019.

Dataset Information

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

Publications

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

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