Palliative care is the interdisciplinary specialty focused on improving quality of life for persons with serious illness and their families. Over the past decade,1 the field has undergone substantial growth and change, including an expanded evidence base, new care-delivery models, innovative payment mechanisms, and increasing public and professional awareness.
Increasing numbers of older, community-dwelling adults have functional impairments that prevent them from leaving their homes. It is uncertain how many people who live in the United States are homebound.OBJECTIVES To develop measures of the frequency of leaving and ability to leave the home and to use these measures to estimate the size of the homebound population in the US population. DESIGN, SETTING, AND PARTICIPANTS Cross-sectional data from the National Health and Aging Trends Study collected in 2011 in the contiguous United States. Participants were a nationally representative sample of 7603 noninstitutionalized Medicare beneficiaries 65 years and older. MAIN OUTCOMES AND MEASURESWe defined homebound persons as those who never (completely homebound) or rarely (mostly homebound) left the home in the last month. We defined semihomebound persons as those who only left the home with assistance or had difficulty or needed help leaving the home. We compared demographic, clinical, and health care utilization characteristics across different homebound status categories. RESULTSIn 2011, the prevalence of homebound individuals was 5.6% (95% CI, 5.1%-6.2%), including an estimated 395 422 people who were completely homebound and 1 578 984 people who were mostly homebound. Among semihomebound individuals, the prevalence of those who never left home without personal assistance was 3.3% (95% CI, 2.8%-3.8%), and the prevalence of those who required help or had difficulty was 11.7% (95% CI, 10.9%-12.6%). Completely homebound individuals were more likely to be older (83.2 vs 74.3 years, P < .001), female (67.9% vs 53.4%, P < .006), and of nonwhite race (34.1% vs 17.6%, P < .001) and have less education and income than nonhomebound individuals. They also had more chronic conditions (4.9 vs 2.5) and were more likely to have been hospitalized in the last 12 months (52.1% vs 16.2%) (P < .001 for both). Only 11.9% of completely homebound individuals reported receiving primary care services at home. CONCLUSIONS AND RELEVANCEIn total, 5.6% of the elderly, community-dwelling Medicare population (approximately 2 million people) were completely or mostly homebound in 2011. Our findings can inform improvements in clinical and social services for these individuals.
Background Common diseases, particularly dementia, entail large social costs, previously well described for the U.S. population. Less is known about end-of-life costs of specific diseases and the associated financial risk for individual households. Objective To examine social costs and financial risks faced by Medicare beneficiaries five years before death. Design Retrospective cohort. Setting Health and Retirement Study. Participants Medicare fee-for-service beneficiaries, aged 70 years or older, who died 2005-2010 (N = 1702), stratified into four cohorts: individuals with high probability of dementia, or with either heart disease, cancer, or other causes of death. Measurements Total social costs and its components: Medicare, Medicaid, private insurance, out-of-pocket, and informal care, measured over the last 5 years of life; and out-of-pocket spending as a proportion of household wealth. Results Average total cost per decedent for dementia ($287,038) was significantly greater than for those who died of heart disease ($175,136), cancer ($173,383), or other causes ($197,286), p<0.001. While Medicare expenditures were similar across groups, average out-of-pocket spending for dementia patients ($61,522) was 81% higher than for non-dementia patients ($34,068); a similar pattern held for informal care. Out-of-pocket spending for the dementia group (median, $36,919) represented 32% of wealth measured five years before death, compared to 11% for non-dementia decedents (p<0.001). This proportion was greater for Blacks (84%), those with less than high school education (48%), and unmarried/widowed women (58%). Limitations Imputed Medicaid, private insurance and informal care costs Conclusions Healthcare expenditures among those with dementia were substantially larger than for other diseases, with much of those expenses uninsured, thus placing a large financial burden on families. These burdens are particularly pronounced among demographic groups least prepared for financial risk.
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