Dataset Information

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

ABSTRACT: CONTEXT:Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. OBJECTIVES:The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. METHODS:Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors. RESULTS:The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. CONCLUSION:Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.

SUBMITTER: Vick JB

PROVIDER: S-EPMC6348024 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Vick Judith B JB Ornstein Katherine A KA Szanton Sarah L SL Dy Sydney M SM Wolff Jennifer L JL

Journal of pain and symptom management 20181117 2

<h4>Context</h4>Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life.<h4>Objectives</h4>The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers.<h4>Methods</h4>Participants included a nationally representative sample of community-living older adults receiving help with se ...[more]

PMID: 30453054

Similar Datasets

Project description:BackgroundAn increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers' health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia.ObjectivesThe aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver.MethodsThe study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study.ResultsThree types of caregiving spouses were identified: "The Caring Partner", "The Worried Manager" and "The Desperate Overburdened". These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions.ConclusionsThe development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice.Trial registrationThe TIGER study was registered with clinicaltrials.gov: NCT03513159 . Registered on April 17, 2018.

Project description:ObjectiveTo analyze whether acute care patients with dementia are more or less likely to receive each of five aggressive medical services near the end of life, compared with patients without dementia.Data sourcesTwo years of Veterans Affairs (VA) and Medicare utilization data for all 169,036 VA users nationwide age 67 and older who died between October 1, 1999 and September 30, 2001.Study designWe performed a retrospective analysis of acute care stays discharged in the final 30 days of life. The main outcome measure was the patient's likelihood of receiving each of five aggressive services (intensive care unit [ICU] admission, ventilator, cardiac catheterization, pulmonary artery monitor, and dialysis), controlling for demographic and clinical factors in probit regressions.Principal findingsThere were 122,740 acute-stay discharges during the final 30 days of life, representing 94,100 unique patients (31,654 with dementia). In probit models comparing acute care patients with and without dementia, patients with dementia were 7.5 percentage points less likely to be admitted to the ICU (95 percent confidence interval [CI], 6.9-8.1; percent of stays with ICU admission=36.8 percent), 5.4 percentage points less likely to be placed on a ventilator (95 percent CI, 5.0-5.9; percent of stays with ventilator use=17.1 percent), 0.7 percentage points less likely to receive cardiac catheterization (95 percent CI, 0.6-0.8; percent of stays with cardiac catheterization=2.7 percent), 1.4 percentage points less likely to receive pulmonary artery monitoring (95 percent CI, 1.2-1.5; percent of stays with pulmonary artery monitoring=2.6 percent), and 0.6 percentage points less likely to receive dialysis (95 percent CI, 0.4-0.8; percent of stays with dialysis=4.6 percent).ConclusionsDuring the final 30 days of life, acute care patients with dementia are treated substantially less aggressively than patients without dementia. Further research is warranted to determine the causes and appropriateness of these patterns of care.

Project description:Background and objectivesThe clinical progression of severe dementia frequently leads to situations where surrogate decision makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition.Research design and methodsWe retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 and 2015 whose next-of-kin reported a need for surrogate decision making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments.ResultsCompared to patients who were cognitively normal near the end of life (n = 1 198), patients with severe dementia (n = 722) were less likely to experience burdensome treatments (18% [95% confidence interval {CI} 14-21] vs 32% [95% CI 29-35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision makers or when decision makers were informed by advance directives. However, among decedents with normal cognition, a single decision maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death.Discussion and implicationsSurrogate decision makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision makers and availability of advance directives. However, both advance directives and single decision makers were associated with less aggressive care for cognitively normal decedents.

Dataset Information

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Publications

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets