Abstract
Background
Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs.
Methods:
This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n=52,566; spouses=11.3%; children=58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members, and to compare sociodemographic and death characteristics of NH decedents with (n=14,398; 78.5%) and without FDF (n=3,941; 21.5%).
Results
Compared to NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs. 85.5), female (70.5% vs 59.3%), non-white/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs. 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs. 3.9%), COPD (3.9% vs 2.5%) and dementia (40.5% vs. 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared to NH decedents with FDF.
Conclusions
Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF – factors that that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.
Keywords: Dementia, End of Life, Family, Nursing Home
INTRODUCTION
Approximately 6.7 million Americans over age 65 have dementia1 - a number projected to double by 2050.2 Nursing homes (NHs) care for a growing number of older adults living with and dying from dementia.3, 4 Estimates suggest that half of NH residents have dementia and nearly 70% of people with advanced dementia die in a NH.5
Families of NH residents with dementia are critically important partners in NH care, commonly providing emotional and financial support, advocacy, and health care decision making.3, 4, 6, 7 Some family even continue to assist with bathing, dressing and other activities of daily living. Unfortunately, many families are not fully included in NH care conference decision-making.8 Moreover, they are often unprepared to navigate and manage care decisions for NH residents, especially at the EOL,9 often leading to burdensome care transitions and physically and psychologically taxing care in the final months of life.10, 11
Recent demographic changes, including lower rates of marriage and fertility, are reducing the pool of available family caregivers for the growing population of older adults with dementia.12 Over 15.2 million older Americans are currently childless and the number of older adults is expected to exceed the number of children for the first time by 2034.13 There is a dearth of information about NH residents with dementia who do not have any available family, lack medical decision-making capacity, or lack a completed advance directive.14 A 2003 study estimated that 3 to 4% of NH residents lack family.15 Often referred to as “unrepresented” or “unbefriended,”16 these NH residents are exceptionally vulnerable to poor quality care and commonly rely solely on NH staff for emotional support and companionship which can potentially affect their mental and emotional well-being.14, 17 In addition, they often encounter challenges in decision-making and advocacy, with EOL care decisions usually made by people who did not know them before the onset of dementia.14
Despite the important role of family in NH dementia care and at EOL, little is known about the availability and characteristics of families of persons with dementia who die in a NH. Using a population-based cohort of persons with dementia who died in a NH and their first-degree family (FDF), we aimed to describe the sociodemographic characteristics of both NH decedents and their FDF members, as well as the EOL care utilization of the NH decedents.
METHODS
This retrospective cohort study focused on 18,339 individuals over the age of 65 with dementia who died of natural causes in a Utah NH between 1998 and 2016 and their FDF members (spouse, parents, children, siblings, n=52,566; see Figure 1). This Utah Caregiving Population Science (Utah C-PopS) cohort is derived from the Utah Population Database (UPDB)18, 19 - one of the world’s richest sources of in-depth health and genetic information used for population health research. UPDB captures data from the entire Utah population spanning 200 years (n=11 million overall; 14% non-white, 13% Hispanic of any race comprise the current Utah population) and links individual-level administrative and health data to FDF member data through a population pedigree (genealogy) structure. Key variables and data sources used to measure decedent sociodemographic, EOL care, and death characteristics are described elsewhere.21 Briefly, health conditions and health services use were assessed in the two years before death. Dementia was identified using International Classification of Disease (ICD)-9 and -10 codes: 290, 294 (ICD-9) and G30-G32, F01-F09 (ICD-10). Because dementia is underreported on death certificates and by using claims data,20 we used an expansive definition that considered dementia as indicated on ambulatory surgery, emergency department, or inpatient records up to two years prior to death; or on Utah death certificates (primary or non-primary cause of death).
FIGURE 1. Cohort flow diagram of nursing home decedents with dementia with and without first-degree family (1998–2016).
*FDF are linked pairs with decedents and therefore a FDF can have more than one decedent. In this FDF sample, n=49,089 (93.4%) had a single NH decedent and n=3,477 (6.6%) had more than one NH decedent
We used descriptive statistics, chi-square tests, and t-tests to describe the NH decedent cohort with dementia overall and by sex, and describe their FDF members overall and by relationship. We also compared sociodemographic and death characteristics of NH decedents with and without FDF. All analyses were performed using R statistical software. This study was approved by the University of Utah’s Resource for Genetic and Epidemiologic Research and Institutional Review Board.
RESULTS
Characteristics of NH Decedents with Dementia
The mean age at death was 85.7 years (SD 7.0). Decedents were more likely female (61.7%), white/non-Hispanic (95.3%), widowed (56.0%), and living in an urban NH at the time of their death (76.2%) (Table 1). Thirty percent of NH residents had moderate levels of comorbidity [Charlson Comorbidity Index (CCI) score of 3+],19–20 and 16% had two or more hospitalizations in their last six months of life.
Table 1.
Sociodemographic, Context of Death, and End-of-Life Health Care Utilization Characteristics of Nursing Home Decedents with Dementia and by Presence of First-Degree Family (FDF)
| Total Decedents |
No first-degree family | Any first-degree family | |
|---|---|---|---|
|
| |||
| n= 18339 n (%) |
n=3,941 n (%) |
n=14,398 n(%) |
|
| Sociodemographic Characteristics | |||
| Mean Age at decedent’s death (±SD) ** | 85.7 (7.0) | 86.5 (7.2) | 85.5 (6.9) |
| Sex ** | |||
| Female | 11319 (61.7) | 2780 ( 70.5) | 8539 ( 59.3) |
| Male | 7020 (38.3) | 1161 ( 29.5) | 5859 ( 40.7) |
| Ethnicity ** | |||
| Hispanic | 516 (2.8) | 237 (6.0) | 279 (1.9) |
| Non-White Non-Hispanic | 338 (1.8) | 155 (3.9) | 183 (1.3) |
| White Non-Hispanic | 17485 ( 95.3) | 3549 ( 90.1) | 13936 ( 96.8) |
| Marital Status ** | |||
| Divorced/separated | 1853 ( 10.1) | 691 ( 17.5) | 1162 (8.1) |
| Married | 5566 ( 30.4) | 292 (7.4) | 5274 ( 36.6) |
| Widowed | 10273 ( 56.0) | 2636 ( 66.9) | 7637 ( 53.0) |
| Maximum education ** | |||
| Less than high school | 6515 ( 35.5) | 1664 ( 42.2) | 4851 ( 33.7) |
| High school graduate | 6563 ( 35.8) | 1238 ( 31.4) | 5325 ( 37.0) |
| Some college | 3537 ( 19.3) | 709 ( 18.0) | 2828 ( 19.6) |
| College graduate | 1016 (5.5) | 197 (5.0) | 819 (5.7) |
| Postcollege | 708 (3.9) | 133 (3.4) | 575 (4.0) |
| Region | |||
| Urban | 13983 ( 76.2) | 2955 ( 75.0) | 11028 ( 76.6) |
| Rural/Frontier | 4356 ( 23.7) | 986 ( 25.0) | 3370 ( 27.4) |
| Insurance status ** | |||
| Medicare only | 9452 ( 51.5) | 1698 ( 43.1) | 7754 ( 53.9) |
| Medicaid only | 60 (0.3) | 23 (0.6) | 37 (0.3) |
| Medicare and Medicaid | 2624 ( 14.3) | 821 ( 20.8) | 1803 ( 12.5) |
| No record of either | 6203 ( 33.8) | 1399 ( 35.5) | 4804 ( 33.4) |
|
| |||
| Context of death and EOL health care utilization | |||
| Primary cause of death ** | |||
| Cancer | 733 (4.0) | 167 (4.2) | 566 (3.9) |
| COPD | 509 (2.8) | 152 (3.9) | 357 (2.5) |
| Cerebrovascular Disease | 1483 (8.1) | 288 (7.3) | 1195 (8.3) |
| Dementia | 7122 ( 38.8) | 1595 ( 40.5) | 5527 ( 38.4) |
| Heart Disease | 3174 ( 17.3) | 692 ( 17.6) | 2482 ( 17.2) |
| Others | 5318 ( 29.0) | 1047 ( 26.6) | 4271 ( 29.7) |
| Comorbidities - Charlson Comorbidity Index ** | |||
| 0 | 2065 ( 11.3) | 496 ( 12.6) | 1569 ( 10.9) |
| 1 – 2 | 7481 ( 40.8) | 1554 ( 39.4) | 5927 ( 41.2) |
| 3 – 4 | 3624 ( 19.8) | 741 ( 18.8) | 2883 ( 20.0) |
| 5+ | 1879 ( 10.2) | 378 (9.6) | 1501 ( 10.4) |
| Unknown | 3290 ( 17.9) | 772 ( 19.6) | 2518 ( 17.5) |
| Hospitalization at EOL ** | |||
| None within two years | 5923 ( 32.3) | 1425 ( 36.2) | 4498 ( 31.2) |
| None within six month | 4226 ( 23.0) | 901 ( 22.9) | 3325 ( 23.1) |
| One within six months | 5315 ( 29.0) | 1066 ( 27.0) | 4249 ( 29.5) |
| 2 or more within six month | 2875 ( 15.7) | 549 ( 13.9) | 2326 ( 16.2) |
| Any inpatient hospitalization within last month ** | 3872 ( 21.1) | 769 ( 19.5) | 3103 ( 21.6) |
p-Values were calculated from chi-square tests for categorical variables and t tests for continuous variables.
p<0.05
p<0.01
Comparison of characteristics of decedents with and without FDF
Of the 18,339 individuals with dementia who died in a Utah NH between 1998 and 2016, 22% (n=3,941) did not have any known FDF members and 78% (n=14,398) were related to >=1 adult FDF (n=52,566; spouses=11.3%; children=58.3%; siblings = 30.3%). The median number of FDF members for NH decedents with dementia was two (IQR=1–4).
Compared to those who had FDF members, those without FDF were more likely to be female (70.5% vs 59.3%), non-white/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have both Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs. 23.4%). NH decedents who did not have FDF were also more likely to die from COPD (3.9% vs 2.5%) and dementia (40.5% vs. 38.4%), compared to NH decedents with FDF. NH decedents without FDF had lower levels of moderate disease burden (CCI score 3+) (28.4% vs 30.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared to NH decedents with FDF.
NH Decedents’ first-degree family characteristics
Table 2 describes the characteristics of NH decedents’ FDF members by relationship type (n=52,566). The mean age of FDF members at time of decedent death was 66.1 years (SD 14.5). The majority of FDF members were female (52.9%), white/non-Hispanic (93.8%), with high school/some college education (53.3%) and lived in an urban setting (75.4%).
Table 2.
Demographic and Socioeconomic Characteristics of First-Degree Family Members of Nursing Home Decedents with Dementia
| Children | Siblings | Spouses | Total First Degree Family | |
|---|---|---|---|---|
|
| ||||
| (n =30,657) n (%) |
(n=15,952) n (%) |
(n=5957) n (%) |
(n=52,566) n (%) |
|
| Demographic characteristics | ||||
| Mean age at decedents’ death (±SD)** | 56.3 (8.8) | 79.4 (8.5) | 81.3 (7.7) | 66.1 (14.5) |
| Gender** | ||||
| Female | 15039 (49.1) | 8932 (56.0) | 3821 (64.1) | 27792 (52.9) |
| Male | 15618 (50.9) | 7020 (44.0) | 2136 (35.9) | 24774 (47.1) |
| Race/Ethnicity ** | ||||
| Hispanic | 1041 ( 3.4) | 188 ( 1.2) | 126 ( 2.1) | 1355 ( 2.6) |
| Non-White Non-Hispanic | 369 ( 1.2) | 118 ( 0.7) | 86 ( 1.4) | 573 ( 1.1) |
| White Non-Hispanic | 28239 (92.1) | 15399 (96.5) | 5674 (95.2) | 49312 (93.8) |
| Unknown | 1008 ( 3.3) | 247 ( 1.5) | 71 ( 1.2) | 1326 ( 2.5) |
| Maximum education ** | ||||
| Less than high school | 1954 ( 6.4) | 4364 (27.4) | 1618 (27.2) | 7936 (15.1) |
| High school graduate | 8599 (28.0) | 5301 (33.2) | 1914 (32.1) | 15814 (30.1) |
| Some college | 8237 (26.9) | 2920 (18.3) | 1055 (17.7) | 12212 (23.2) |
| College graduate | 3750 (12.2) | 1025 ( 6.4) | 342 ( 5.7) | 5117 ( 9.7) |
| Post college | 3722 (12.1) | 716 ( 4.5) | 199 ( 3.3) | 4637 ( 8.8) |
| Unknown | 4395 (14.3) | 1626 (10.2) | 829 (13.9) | 6850 (13.0) |
| Region ** | ||||
| Urban | 23648 (77.1) | 11593 (72.7) | 4407 (74.0) | 39648 (75.4) |
| Rural/Frontier | 6467 (21.1) | 4179 (26.1) | 1505 (25.2) | 12151 (23.1) |
| Unknown | 542 ( 1.8) | 180 ( 1.1) | 45 ( 0.8) | 767 ( 1.5) |
Xp-Values were calculated from chi-square tests for categorical variables and t tests for continuous variables.
p<0.05
p<0.01
DISCUSSION
In this population-based study, one in five NH decedents with dementia in Utah did not have any FDF members. Decedents without FDF had lower comorbidity burdens and health care utilization than their peers with FDF, suggesting that they may have needed NH care because family members or other caregivers were not available to help them remain in the community despite their relatively favorable health status. This is consistent with recent research demonstrating the availability of family reduces the likelihood of community-dwelling older adults with dementia transitioning to a NH12 and dying outside of the home.
Compared to decedents with FDF, those without FDF were more likely to be unmarried women or persons with lower levels of educational attainment, Hispanic/non-White, and living in a rural area at the time of death. Such social determinants of health play a key role in health and EOL outcomes in the general population.21, 22 The lack of available family combined with other higher-risk social determinants may result in fewer nursing home options, admissions to lower quality NHs with fewer resources and staffing, which in turn may exacerbate inequities in dementia care and outcomes.23, 24 Differences in available family shown here between men and women at EOL are consistent with other studies in non-dementia populations.21, 25 Targeting supportive dementia care interventions to these arguably isolated or otherwise vulnerable groups without available family may improve equity in care.
Experts suggest that inclusion of families, when available, is a central component to providing individualized, person-centered care for persons with dementia.4, 6 We show that NH decedents with dementia who had FDF were more likely to have 2+ inpatient hospitalizations at EOL, compared to those without FDF. Such a finding may reflect the poorer health of this population, family’s uncertainty about the quality of NH care, and/or lack of palliative care support in the NH, resulting in more aggressive care at EOL.9–11 Experts agree, however, that greater family awareness and understanding of the poor prognosis of advanced dementia translates to patients receiving less aggressive care at EOL.3 Thus, it is critical that NHs promote open communication and collaboration between staff and families, and provide families with the needed emotional support, counseling and education regarding dementia prognosis to better guide shared decision-making and navigation of the complexities of their roles.7–9
Understanding the nature and magnitude of the availability and role of families in NHs is complicated by the fact that enrolling NH residents with dementia and their families in research studies is a significant challenge,6, 26 particularly for those residents without family/surrogate decision-makers, making them an invisible and poorly understood NH population. Given that the population of NH residents without FDF will continue to grow,12 it is critical to leverage population-based datasets that use routinely collected administrative data, such as Utah C-PopS,21 to help improve our understanding of the role that the characteristics and availability of family have on persons with dementia. Such an approach is significant because it applies a family-systems level approach to population data, rather than requiring more resource-intensive survey data, especially in light of declining participation rates.4, 12 Larger population datasets are especially vital to address the needs of persons with dementia living in areas where NH residents are disproportionately minoritized due to race, ethnicity, and socioeconomic deprivation.4, 27–29 Without studies of NH resident and family characteristics or health outcomes, we cannot adequately address the National Academies’3, 4 call to improve care for this vulnerable NH population with dementia and their caregivers.
Our study has several limitations. First, NH residents in this study are limited to Utah and are predominately white, thus findings may not generalize to the national NH population of residents with dementia and their families. Nevertheless, study demographics mirror national estimates that indicate NH residents are predominately female, white, with at least a high school education.30 Next, it is important to acknowledge that not all FDF members serve as caregivers and/or that some of these FDF may live out of state yet provide substantial long-distance caregiving – factors not accounted for in this study. Evidence suggests that family’s geographic proximity, employment status, and/or their own health status impact the role they want, or are able to, play in the care of NH residents.8 Lastly, this study represents preliminary work with this particular NH cohort and is therefore largely descriptive in nature, only examining persons with dementia who died in NH and the binary association of presence of FDF on EOL hospitalizations. To our knowledge, however, this is the first population-based study to explore the sociodemographic and death characteristics of NH residents with dementia who die in a NH with and without FDF members. Our ongoing work links this cohort to home health, hospice, and NH assessment data, as well as inpatient and outpatient claims and other sources to provide a much more granular examination of the association between availability and characteristics of family on EOL outcomes in this population.
CONCLUSIONS AND IMPLICATIONS
Demographic changes over the past few decades are substantially reducing the potential pool of available family caregivers to care for the growing population of older adults with dementia.12 A substantial body of literature suggests that having available family makes a difference in the care of persons with dementia. This population-based study advances the science of NH dementia care and EOL care by highlighting potential health disparities that exist between those residents with and without family. The dearth of research on this fast-growing group of NH residents with dementia who do not have family presents significant challenges for developing appropriate interventions and policies that can improve the quality of NH care and outcomes, as well as reduce known health disparities. These results call for further investigation into why NH residents with dementia and without family have lower rates of healthcare utilization to ensure the care they receive at EOL aligns with their wishes.
KEY POINTS.
One in five older adults with dementia who died in a nursing home in Utah did not have any first-degree family members (spouse, parent, children, siblings); these individuals were more often women, non-white/Hispanic, dual eligible, and died in a rural or frontier nursing home compared to decedents with a first-degree family member.
Nursing home decedents without family had lower comorbidity burdens than their peers with family, suggesting that they may have needed nursing home care because they lacked close family caregivers to help them remain at home.
NH decedents with dementia who had family were more likely to have 2+ inpatient hospitalizations at EOL, compared to those without family, which may reflect the poorer health of this population, the family’s uncertainty about the quality of NH care, and/or lack of palliative care support in the NH, resulting in more aggressive care at EOL.
WHY DOES THIS PAPER MATTER?
People with dementia who die in nursing homes and their family members have not previously been characterized using population-based data. Understanding their sociodemographic characteristics, health, and health care use is an important first step to identifying interventions that can support persons with dementia and their family caregivers during end of life. Intervention design and policy development should account for social determinants of health and the potential lack of availability of family members to provide support to older adults living and dying with dementia.
ACKNOWLEDGEMENTS
We wish to thank Ms. Pamela Barrientos for her time, effort and technical support with this manuscript and overall study.
FUNDING:
University of Utah’s Family Caregiving Collaborative; Center on Aging, and Consortium for Families and Health Research; NIA K76AG054862 (PI: Stephens); NCRR R01 RR021746 (PI: G. Mineau); Utah Department of Health; Pedigree and Population Resource of Huntsman Cancer Institute, University of Utah (funded in part by the Huntsman Cancer Foundation); UPDB grant P30 CA2014 from the National Cancer Institute; University of Utah’s program in Personalized Health and Center for Clinical and Translational Science; the Office of Strategic Initiatives of the National Library of Medicine (NLM), National Institutes of Health.
Sponsor’s Role:
The sponsors had no role in the design, conduct, writing, or decision to publish this manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Footnotes
Conflict of Interest: The authors have no conflicts.
REFERENCES
- 1.Rajan KB, Weuve J, Barnes LL, McAninch EA, Wilson RS, Evans DA. Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020–2060). Alzheimers Dement 2021;17(12):1966–75. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Hebert LE, Beckett LA, Scherr PA, Evans DA. Annual incidence of Alzheimer disease in the United States projected to the years 2000 through 2050. Alzheimer Dis Assoc Disord 2001;15(4):169–73. [DOI] [PubMed] [Google Scholar]
- 3.National Academies of Sciences E, and Medicine (NASEM). Understanding Nursing Home, Hospice, and Palliative Care for Individuals with Later-Stage Dementia: Proceedings of a Workshop-in Brief. . Washington, DC: The National Academies Press.; 2020 August/14/2020. [PubMed] [Google Scholar]
- 4.National Academies of Sciences E, and Medicine (NASEM). The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff. Washington, DC.; 2022. 2022. [PubMed] [Google Scholar]
- 5.Mitchell SL, Teno JM, Miller SC, Mor V. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005;53(2):299–305. [DOI] [PubMed] [Google Scholar]
- 6.Reid RC, Chappell NL. Family Involvement in Nursing Homes: Are Family Caregivers Getting What They Want? J Appl Gerontol 2017;36(8):993–1015. [DOI] [PubMed] [Google Scholar]
- 7.Backhaus R, Hoek LJM, de Vries E, van Haastregt JCM, Hamers JPH, Verbeek H. Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review. BMC Geriatr 2020;20(1):434. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Puurveen G, Baumbusch J, Gandhi P. From Family Involvement to Family Inclusion in Nursing Home Settings: A Critical Interpretive Synthesis. J Fam Nurs 2018;24(1):60–85. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Givens JL, Lopez RP, Mazor KM, Mitchell SL. Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Dis Assoc Disord 2012;26(3):254–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Gozalo P, Teno JM, Mitchell SL, Skinner J, Bynum J, Tyler D, et al. End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med 2011;365(13):1212–21. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Stephens C, Halifax E, Bui N, Lee SJ, Harrington C, Shim J, et al. Provider Perspectives on the Influence of Family on Nursing Home Resident Transfers to the Emergency Department: Crises at the End of Life. Curr Gerontol Geriatr Res 2015;2015:893062. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Choi H, Heisler M, Norton EC, Langa KM, Cho TC, Connell CM. Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US. Health Aff (Millwood). 2021;40(9):1359–67. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Valerio T, Knop B, Kreider R, He W. Childless Older Americans: 2018. Current Population Reports. U.S. Census Bureau; 2021 August/2021. [Google Scholar]
- 14.Chamberlain S, Baik S, Estabrooks C. Going it Alone: A Scoping Review of Unbefriended Older Adults. Can J Aging. 2018;37(1):1–11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Karp N, Wood E. Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly. American Bar Association. Commission on Law and Aging; 2003. [Google Scholar]
- 16.Brenner R, Cole L, Towsley GL, Farrell TW. Adults Without Advocates and the Unrepresented: A Narrative Review of Terminology and Settings. Gerontol Geriatr Med 2023;9:23337214221142936. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Cohen AB, Wright MS, Cooney L Jr., Fried T. Guardianship and End-of-Life Decision Making. JAMA Intern Med 2015;175(10):1687–91. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Smith KR, Mineau GP. The Utah Population Database. The Legacy of Four Decades of Demographic Research. Historical Life Course Studies. 2021;11(4):48–73. [Google Scholar]
- 19.Smith KR, Fraser A, Reed DL, Barlow J, Hanson HA, West J, et al. The Utah Population Database. A Model for Linking Medical and Genealogical Records for Population Health Research. Historical Life Course Studies. 2022;12:58–77. [Google Scholar]
- 20.Zhu CW, Ornstein KA, Cosentino S, Gu Y, Andrews H, Stern Y. Misidentification of Dementia in Medicare Claims and Related Costs. J Am Geriatr Soc 2019;67(2):269–76. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Tay DL, Ornstein KA, Meeks H, Utz RL, Smith KR, Stephens C, et al. Evaluation of Family Characteristics and Multiple Hospitalizations at the End of Life: Evidence from the Utah Population Database. J Palliat Med 2022;25(3):376–87. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Brown CE, Engelberg RA, Sharma R, Downey L, Fausto JA, Sibley J, et al. Race/Ethnicity, Socioeconomic Status, and Healthcare Intensity at the End of Life. J Palliat Med 2018;21(9):1308–16. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Yan D, Wang S, Temkin-Greener H, Cai S. Quality of Nursing Homes and Admission of Residents With Alzheimer’s Disease and Related Dementias: The Potential Influence of Market Factors and State Policies. J Am Med Dir Assoc 2020;21(11):1671–6 e1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Temkin-Greener H, Yan D, Wang S, Cai S. Racial disparity in end-of-life hospitalizations among nursing home residents with dementia. J Am Geriatr Soc 2021;69(7):1877–86. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Gott M, Morgan T, Williams L. Gender and palliative care: a call to arms. Palliat Care Soc Pract 2020;14:2632352420957997. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Indorewalla KK, O’Connor MK, Budson AE, Guess DiTerlizzi C, Jackson J. Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research. J Alzheimers Dis 2021;80(3):927–40. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Gilmore-Bykovskyi AL, Jin Y, Gleason C, Flowers-Benton S, Block LM, Dilworth-Anderson P, et al. Recruitment and retention of underrepresented populations in Alzheimer’s disease research: A systematic review. Alzheimers Dement (N Y). 2019;5:751–70. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Brewster P, Barnes L, Haan M, Johnson JK, Manly JJ, Napoles AM, et al. Progress and future challenges in aging and diversity research in the United States. Alzheimers Dement 2019;15(7):995–1003. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Brijnath B, Croy S, Sabates J, Thodis A, Ellis S, de Crespigny F, et al. Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimers Dement (N Y). 2022;8(1):e12222. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Tjia J, Dharmawardene M, Givens JL. Advance Directives among Nursing Home Residents with Mild, Moderate, and Advanced Dementia. J Palliat Med 2018;21(1):16–21. [DOI] [PubMed] [Google Scholar]