TY - JOUR T1 - Declines in Wealth Among US Older Adults at Risk of Dementia. JF - JAMA Neurology Y1 - Forthcoming A1 - Li, Jing A1 - Skinner, Jonathan S A1 - Kathleen McGarry A1 - Nicholas, Lauren Hersch A1 - Wang, Shao-Pang A1 - Bollens-Lund, Evan A1 - Kelley, Amy S KW - Dementia KW - medical cost KW - Wealth AB - Dementia is a set of neurocognitive conditions marked by a gradual deterioration of cognitive capacity that interferes with daily life, with Alzheimer disease being the most common.1 This process may adversely affect household wealth, a key social determinant of health, due to negative outcomes of financial decision capacity2 and need for expensive medical and long-term care services.3,4 We compared trajectories in household wealth for older adults (aged ≥65 years) who developed probable dementia with those of a control cohort without dementia. ER - TY - JOUR T1 - Residential Setting and the Cumulative Financial Burden of Dementia in the 7 Years Before Death JF - Journal of the American Geriatrics Society Y1 - 2020 A1 - Amy Kelley A1 - Kathleen McGarry A1 - Bollens-Lund, Evan A1 - Rahman, Omari-Khalid A1 - Husain, Mohammed A1 - Ferreira, Katelyn B. A1 - Jonathan S Skinner KW - community-dwelling older adults KW - Dementia KW - health-related costs KW - Medicare and Medicaid KW - nursing home AB - OBJECTIVES Care for older adults with dementia during the final years of life is costly, and families shoulder much of this burden. We aimed to assess the financial burden of care for those with and without dementia, and to explore differences across residential settings. DESIGN Using the Health and Retirement Study (HRS) and linked claims, we examined total healthcare spending and proportion by payer—Medicare, Medicaid, out-of-pocket, and calculated costs of informal caregiving—over the last 7 years of life, comparing those with and without dementia and stratifying by residential setting. SETTING The HRS is a nationally representative longitudinal study of older adults in the United States. PARTICIPANTS We sampled HRS decedents from 2004 to 2015. To ensure complete data, we limited the sample to those 72 years or older at death who had continuous fee-for-service Medicare Parts A and B coverage during the 7-year period (n = 2909). MEASUREMENTS We compared decedents with dementia at last HRS assessment with those without dementia across annual and cumulative 7-year spending measures, and personal characteristics. We present annual and cumulative spending by payer, and the changing proportion of spending by payer over time, comparing those with and without dementia and stratifying results by residential setting. RESULTS We found that, consistent with prior studies, people with dementia experience significantly higher costs, with a disproportionate share falling on patients and families. This pattern is most striking among community residents with dementia, whose families shoulder 64% of total expenditures (including \$176,180 informal caregiving costs and \$55,550 out-of-pocket costs), compared with 43% for people with dementia residing in nursing homes (\$60,320 informal caregiving costs and \$105,590 out-of-pocket costs). CONCLUSION These findings demonstrate disparities in financial burden shouldered by families of those with dementia, particularly among those residing in the community. They highlight the importance of considering the residential setting in research, programs, and policies. UR - https://onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16414 ER - TY - CHAP T1 - Labor Market Implications of Providing Family Care T2 - Women Working Longer: Increased Employment at Older Ages Y1 - 2018 A1 - Sean Fahle A1 - Kathleen McGarry A1 - Goldin, Claudia A1 - Katz, Lawrence F. KW - Caregiving KW - Employment and Labor Force KW - Family Roles/Relationships JF - Women Working Longer: Increased Employment at Older Ages PB - University of Chicago Press CY - Chicago SN - 9780226532509 ER - TY - JOUR T1 - The burden of health care costs for patients with dementia in the last 5 years of life. JF - Ann Intern Med Y1 - 2015 A1 - Amy Kelley A1 - Kathleen McGarry A1 - Rebecca Jean Gorges A1 - Jonathan S Skinner KW - Aged KW - Aged, 80 and over KW - Cost of Illness KW - Dementia KW - Female KW - Health Expenditures KW - Humans KW - Insurance, Health KW - Male KW - Medicaid KW - Medicare KW - Retrospective Studies KW - Socioeconomic factors KW - Terminal Care KW - United States AB -

BACKGROUND: Common diseases, particularly dementia, have large social costs for the U.S. population. However, less is known about the 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 5 years before death.

DESIGN: Retrospective cohort.

SETTING: The HRS (Health and Retirement Study).

PARTICIPANTS: Medicare fee-for-service beneficiaries, aged 70 years or older, who died between 2005 and 2010 (n = 1702), stratified into 4 groups: persons with a high probability of dementia or those who died because of heart disease, cancer, or other causes.

MEASUREMENTS: Total social costs and their components, including Medicare, Medicaid, private insurance, out-of-pocket spending, 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 with dementia ($287 038) was significantly greater than that of those who died of heart disease ($175 136), cancer ($173 383), or other causes ($197 286) (P < 0.001). Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia ($61 522) was 81% higher than that for patients without dementia ($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 5 years before death compared with 11% for the nondementia group (P < 0.001). This proportion was greater for black persons (84%), persons with less than a high school education (48%), and unmarried or widowed women (58%).

LIMITATION: Imputed Medicaid, private insurance, and informal care costs.

CONCLUSION: Health care expenditures among persons with dementia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk.

PRIMARY FUNDING SOURCE: National Institute on Aging.

PB - 163 VL - 163 IS - 10 U1 - http://www.ncbi.nlm.nih.gov/pubmed/26502320?dopt=Abstract U4 - Care and treatment/Public Policy/Financial risk/Dementia/Medicare/Palliative care/Health care expenditures ER - TY - JOUR T1 - Out-of-pocket spending in the last five years of life. JF - J Gen Intern Med Y1 - 2013 A1 - Amy Kelley A1 - Kathleen McGarry A1 - Sean Fahle A1 - Samuel M Marshall A1 - Qingling Du A1 - Jonathan S Skinner KW - Aged KW - Cause of Death KW - Female KW - Health Expenditures KW - Health Services for the Aged KW - Humans KW - Male KW - Marital Status KW - Medicare KW - Retrospective Studies KW - Socioeconomic factors KW - Terminal Care KW - United States AB -

BACKGROUND: A key objective of the Medicare program is to reduce risk of financial catastrophe due to out-of-pocket healthcare expenditures. Yet little is known about cumulative financial risks arising from out-of-pocket healthcare expenditures faced by older adults, particularly near the end of life.

DESIGN: Using the nationally representative Health and Retirement Study (HRS) cohort, we conducted retrospective analyses of Medicare beneficiaries' total out-of-pocket healthcare expenditures over the last 5 years of life.

PARTICIPANTS: We identified HRS decedents between 2002 and 2008; defined a 5 year study period using each subject's date of death; and excluded those without Medicare coverage at the beginning of this period (n = 3,209).

MAIN MEASURES: We examined total out-of-pocket healthcare expenditures in the last 5 years of life and expenditures as a percentage of baseline household assets. We then stratified results by marital status and cause of death. All measurements were adjusted for inflation to 2008 US dollars.

RESULTS: Average out-of-pocket expenditures in the 5 years prior to death were $38,688 (95 % Confidence Interval $36,868, $40,508) for individuals, and $51,030 (95 % CI $47,649, $54,412) for couples in which one spouse dies. Spending was highly skewed, with the median and 90th percentile equal to $22,885 and $89,106, respectively, for individuals, and $39,759 and $94,823, respectively, for couples. Overall, 25 % of subjects' expenditures exceeded baseline total household assets, and 43 % of subjects' spending surpassed their non-housing assets. Among those survived by a spouse, 10 % exceeded total baseline assets and 24 % exceeded non-housing assets. By cause of death, average spending ranged from $31,069 for gastrointestinal disease to $66,155 for Alzheimer's disease.

CONCLUSION: Despite Medicare coverage, elderly households face considerable financial risk from out-of-pocket healthcare expenses at the end of life. Disease-related differences in this risk complicate efforts to anticipate or plan for health-related expenditures in the last 5 years of life.

PB - 28 VL - 28 IS - 2 U1 - http://www.ncbi.nlm.nih.gov/pubmed/22948931?dopt=Abstract U2 - PMC3614143 U4 - Public policy/Medicare/End of life/health expenditures/out of pocket costs ER -