Formal and Informal Care Use Over the Course of Cognitive Deterioration Among Adults With a Disability (original) (raw)
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The use of formal and informal care in early onset dementia: results from the NeedYD study
The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 2013
Early onset dementia (EOD) poses specific challenges and issues for both the patient and (in)formal care. This study explores the use of (in)formal care prior to institutionalization, and its association with patient and caregiver characteristics. Participants were part of a community-based prospective longitudinal study of 215 patients and their informal caregivers. Baseline data of a subsample of 215 patient-caregiver dyads were analyzed. Analyses of covariance were performed to determine correlates of (in)formal care use assessed with the Resource Utilization in Dementia (RUD)-Lite questionnaire. Informal care had a 3:1 ratio with formal care. Supervision/surveillance constituted the largest part of informal care. In more than half of cases, patients had only one informal caregiver. The amount of informal care was associated with disease severity, showing more informal care hours in advanced disease stages. Fewer informal care hours were related to more caregiver working hours, e...
National estimates of the quantity and cost of informal caregiving for the elderly with dementia
Journal of General Internal Medicine, 2001
OBJECTIVE: Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia.
Home Health and Informal Care Utilization and Costs Over Time in Alzheimer's Disease
Home Health Care Services Quarterly, 2008
Objectives-To (1) compare home health and informal (unpaid) services utilization among patients with Alzheimer's disease (AD), (2) examine longitudinal changes in services use, and (3) estimate possible interdependence of home health and informal care utilization. Methods-The sample is drawn from the Predictors Study, a large, multi-center cohort of patients with probable AD, prospectively followed annually for up to 7 years in three university-based AD centers. Bivariate probit models estimated the effects of patient characteristics on home health and informal care utilization. Results-A large majority of the patients (80.6%) received informal care with a smaller proportion (18.6%) receiving home health services. Home health services utilization increased from 9.9% at baseline to 34.5% in year 4. Among users, number of days that services were provided in three-month recall increased from 21.9 to 56 days over time. Home health services utilization was significantly associated with function, depressive symptoms, being female, and not living with a spouse. Informal care utilization was significantly associated with cognition, function, comorbidities, and living with a spouse or child. Conclusions-Home health and informal care utilization relate differently to patient characteristics. Utilization of home health care or informal care was not influenced by utilization of the other.
The Gerontologist, 2002
To link changes over 5 years in the health, vital and residential status of very elderly people to changes in their family caregivers' health. Design and Methods: Canadian population-based, longitudinal study including community and institutional residents. From interviews and clinical examinations, 948 people (mean age ϭ 86 years) were classified as demented, frail, or healthy at two points in time. Caregivers reported on the care they provided and their health outcomes. Results: Diagnostic and residential groups of care recipients differed significantly in their level of activity of daily living/instrumental activity of daily living disability (range ϭ 0.2 problems for the healthy group, 10-12 in the dementia groups) and in the amount of assistance received; caregiver burden scores were higher for people with dementia in the community than for those in institutions (p Ͻ .001). However, these differences did not translate directly into contrasts in caregiver health. Caregivers of healthy elders reported fewer health problems than did caregivers for people with dementia or frailty, but the latter groups did not differ significantly. Death of the care recipient and admission to institutional care did not have a consistent impact on caregiver health. Implications: The relationship between caregiver load and health outcomes is complex and dynamic; treatments that slow the progression of dementia will not necessarily relieve caregiver strain.
Journal of the American Geriatrics Society, 2013
OBJECTIVES-To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers. DESIGN-Analysis of cross-sectional, baseline participant characteristics prior to randomization in a care coordination intervention trial. SETTING-Baltimore, MD. PARTICIPANTS-Community-residing PWD (n=254) and their informal caregivers (n=246). MEASUREMENTS-In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were
Background: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.
Journal of the American Geriatrics Society, 2006
Most estimates of the cost of informal caregiving in patients with Alzheimer's disease (AD) remain cross-sectional. Longitudinal estimates of informal caregiving hours and costs are less frequent and are from assessments covering only short periods of time. The objectives of this study were to estimate long-term trajectories of the use and cost of informal caregiving for patients with AD and the effects of patient characteristics on the use and cost of informal caregiving. The sample is drawn from the Predictors Study, a large, multicenter cohort of patients with probable AD, prospectively followed annually for up to 7 years in three university-based AD centers in the United States (n = 170). Generalized linear mixed models were used to estimate the effects of patient characteristics on use and cost of informal caregiving. Patients' clinical characteristics included cognitive status (Mini-Mental State Examination), functional capacity (Blessed Dementia Rating Scale (BDRS)), comorbidities, psychotic symptoms, behavioral problems, depressive symptoms, and extrapyramidal signs. Results show that rates of informal care use and caregiving hours (and costs) increased substantially over time but were related differently to patients' characteristics. Use of informal care was significantly associated with worse cognition, worse function, and higher comorbidities. Conditional on receiving informal care, informal caregiving hours (and costs) were mainly associated with worse function. Each additional point on the BDRS
Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community
International Journal of Environmental Research and Public Health, 2021
One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregi...