Dataset Information

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

ABSTRACT: OBJECTIVE:Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN:Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING:Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS:A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS:Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS:PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS:Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

SUBMITTER: Black BS

PROVIDER: S-EPMC6679825 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

Black Betty S BS Johnston Deirdre D Leoutsakos Jeannie J Reuland Melissa M Kelly Jill J Amjad Halima H Davis Karen K Willink Amber A Sloan Danetta D Lyketsos Constantine C Samus Quincy M QM

International psychogeriatrics 20190204 11

<h4>Objective</h4>Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD.<h4>Design</h4>Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.<h4>Setting</h4>Participants lived in the greater Baltimore, Maryland and Wash ...[more]

PMID: 30714564

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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.

Dataset Information

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

Publications

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics.

Similar Datasets

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