TY - JOUR T1 - Incidence of potentially disruptive medical and social events in older adults with and without dementia. JF - Journal of the American Geriatrics Society Y1 - 2022 A1 - Hunt, Lauren J A1 - R Sean Morrison A1 - Gan, Siqi A1 - Espejo, Edie A1 - Katherine A Ornstein A1 - W John Boscardin A1 - Smith, Alexander K KW - Dementia KW - Hip fracture KW - Pneumonia KW - Widowhood AB -

BACKGROUND: Potentially disruptive medical, surgical, and social events-such as pneumonia, hip fracture, and widowhood-may accelerate the trajectory of decline and impact caregiving needs in older adults, especially among people with dementia (PWD). Prior research has focused primarily on nursing home residents with dementia. We sought to assess the incidence of potentially disruptive events in community-dwelling people with and without dementia.

METHODS: Retrospective cohort study of participants aged 65+ enrolled in the Health and Retirement Study between 2010 and 2018 (n = 9346), including a subset who were married-partnered at baseline (n = 5105). Dementia was defined with a previously validated algorithm. We calculated age-adjusted and gender-stratified incidence per 1000 person-years and incidence rate ratios of: 1) hospitalization for pneumonia, 2) hip fracture, and 3) widowhood in people with and without dementia.

RESULTS: PWD (n = 596) were older (mean age 84 vs. 75) and a higher proportion were female (67% vs. 57%) than people without dementia (PWoD) (n = 8750). Age-adjusted incidence rates (per 1000 person-years) of pneumonia were higher in PWD (113.1; 95% CI 94.3, 131.9) compared to PWoD (62.1; 95% CI 54.7, 69.5), as were hip fractures (12.3; 95% CI 9.1, 15.6 for PWD compared to 8.1; 95% CI 6.9, 9.2 in PWoD). Point estimates of widowhood incidence were slightly higher for PWD (25.3; 95% CI 20.1, 30.5) compared to PWoD (21.9; 95% CI 20.3, 23.5), but differences were not statistically significant. The association of dementia with hip fracture-but not pneumonia or widowhood-was modified by gender (male incidence rate ratio [IRR] 2.24, 95% CI 1.34, 3.75 versus female IRR 1.31 95% CI 0.92,1.86); interaction term p = 0.02).

CONCLUSIONS: Compared to PWoD, community-dwelling PWD had higher rates of pneumonia and hip fracture, but not widowhood. Knowing how often PWD experience these events can aid in anticipatory guidance and care planning for this growing population.

VL - 70 IS - 5 ER - TY - JOUR T1 - Family Caregiving for Those With and Without Dementia in the Last 10 Years of Life. JF - JAMA Internal Medicine Y1 - 2021 A1 - Reckrey, Jennifer M A1 - Bollens-Lund, Evan A1 - Husain, Mohammed A1 - Katherine A Ornstein A1 - Amy Kelley KW - Caregiving KW - Dementia AB - Family caregivers of people with dementia (eg, spouses, children, and other unpaid caregivers) provide high levels of care1 and experience substantial caregiver strain at the end of life,2 yet little is known about the trajectory of care as the end of life approaches and how individual family members contribute to total care. We compared the hours of care that family caregivers provide to those with and without dementia during the last 10 years of life. Methods We sampled all decedents in the nationally representative Health and Retirement Study, including interview waves 2006 to 2016, who were 75 years or older at the time of death (n = 5266) and excluded those with significant missing data (n = 1317). Data analysis was conducted between October 2019 and March 2020. We determined each family caregiver’s annual care hours using the decedent’s self-reported hours of help received with self-care and household activities in the preceding month. We estimated caregiving hours between interviews using a weighted average of hours from each interview and assigned annual prorated hours based on the time from interview to death.3 We used a clinically validated algorithm4 to determine dementia status in the interview before death and then stratified results based on marital status. The study was approved by the Mount Sinai School of Medicine institutional review board with a waiver of informed consent due to the retrospective nature of the study. Results Family caregivers of people with dementia provided 3 times as many total hours of care over the last 10 years of life compared with caregivers of those without dementia (Figure). While care hours provided to those with dementia increased steadily in each of the last 10 years (mean annual increase, 17%; range 18%-41%), care hours provided to those without dementia remained low and then nearly tripled in the last year of life (mean [SD] of 8 [23] hours of care per week 1-2 years before death and 22 [35] hours in the last year of life). Adult children of those with dementia provided a larger portion of total care hours (50%) compared with those without dementia (41%). In the last year of life, adult children of those with dementia provided a mean (SD) of 17 (34) hours of care per week, while children of those without dementia provided a mean (SD) of 10 (22) hours. Among those married at the interview before death, spousal caregivers provided most of the care hours over all 10 years before death in the dementia and nondementia groups (81% and 77% of total care hours, respectively). Discussion Our study highlights the high levels of caregiving provided to those with dementia by their family caregivers in general and by adult children in particular. All married individuals relied primarily on spouses to provide care. However, adult children provided the bulk of care for family members with dementia, who were on average older and more likely to be widowed; substantial caregiving responsibilities for this population often began at least 10 years before death. The survey data did not assess the total time caregivers spent with family members; some time reported as caregiving may have replaced time spent in social engagement before needs arose, and our results may therefore overstate the time spent providing care. However, this limitation is unlikely to explain the many hours spent caregiving for individuals with dementia. Moreover, sustained caregiving responsibilities for individuals with dementia likely have financial implications beyond the time spent providing care. Caregivers may work fewer hours, miss opportunities for advancement, or fail to enter or stay in the workforce5; indirect costs of caregiving affect financial security and retirement savings and may even affect opportunities for the next generation. Because of the higher prevalence of dementia among those with lower socioeconomic status, the intergenerational effect of caregiving is particularly concerning for those already struggling to achieve equity. Existing programs that provide short-term, episodic support for caregivers (eg, the US Family Medical Leave Act and paid family leave) do not match the long-term, progressive care needs of those with dementia. VL - 181 IS - 2 ER - TY - JOUR T1 - A national profile of kinlessness at the end of life among older adults: Findings from the Health and Retirement Study. JF - Journal of the American Geriatric Society Y1 - 2021 A1 - Natalie Plick A1 - Claire K. Ankuda A1 - Christine A Mair A1 - Husain, Mohammed A1 - Katherine A Ornstein KW - Caregiving KW - end of life KW - Families KW - kinlessness KW - location of death AB -

BACKGROUND/OBJECTIVES: The majority of end-of-life (EOL) caregiving is provided by unpaid family members. An increasing number of older adults are kinless (without close family/partnerships) and may have insufficient caregiver support to remain at home at the EOL. We therefore determined what proportion of older adults are kinless at the EOL and assessed the association of kinlessness with EOL care.

DESIGN: Retrospective analysis of Health and Retirement Study decedents, 2002-2015.

SETTING: US population-based sample.

PARTICIPANTS: Decedents age 51+ who died within 1 year of interview (n = 3844) and subset who are community-dwelling at last interview.

MEASUREMENTS: Kinlessness was defined as lacking a spouse/partner and children. Primary outcome measure was location of death. Secondary outcome measures included contextual EOL measures such as symptom burden and caregiver support.

RESULTS: A total of 7.4% of decedents were kinless at the EOL. Kinless decedents were more likely to be female, nonwhite, enrolled in Medicaid, living alone, or living in a nursing home prior to death. Although community-dwelling kinless decedents received fewer hours of caregiving per week at the EOL (34.7 vs. 56.2, p < 0.05) and were more likely to die in nursing homes (18.1% vs. 10.3%, p < 0.05) than those with kin, they did not have higher EOL symptom burden or treatment intensity (e.g., intensive care unit use). In multinomial logistic analysis controlling for demographic and illness characteristics, kinless decedents living in the community before death had a twofold increased risk of dying in the nursing home (odds ratio [OR] = 2.02 [95% confidence interval (CI) = 1.09-3.72]) and a trend toward increased risk of hospital death (OR = 1.60 [95% CI = 0.96-2.69]) versus home setting.

CONCLUSIONS: Kinless individuals are more likely to die in nursing homes, even if they are living in the community in their last year of life. Expanded long-term care services and policies are needed to enable all older adults regardless of their family support systems to receive high-quality EOL care.

VL - 69 IS - 8 ER -