Dementia Prevalence, Incidence and Mortality Trends Among US Adults Ages 72 and Older, 2011-2021.

BACKGROUND: U.S.-focused studies have reported decreasing dementia prevalence in recent decades, but have not yet focused on the implications of the COVID-19 pandemic for trends. METHODS: We use the 2011-2021 National Health and Aging Trends Study (N=48,065) to examine dementia prevalence, incidence and mortality trends among adults ages 72 and older, and the contribution to prevalence trends of changes in the distribution of characteristics of the older population ("compositional shifts") during the full and pre-pandemic periods. To minimize classification error, individuals must meet dementia criteria for two consecutive rounds. RESULTS: The prevalence of probable dementia declined from 11.9% in 2011 to 9.2% in 2019 and 8.2% in 2021 (3.1% average annual decline). Declines over the 2011-2021 period were concentrated among those ages 80-89 and non-Hispanic White individuals. Declines in dementia incidence were stronger for the 2011-2021 period than for the pre-pandemic period while mortality among those with dementia rose sharply with the onset of the COVID-19 pandemic. Shifts in the composition of the older population accounted for a smaller fraction of the decline over the full period (28%) than over the pre-pandemic period (45%). CONCLUSIONS: Declines in dementia prevalence continued into years marked by onset of the COVID-19 pandemic, along with declines in incidence and sharp increases in mortality among those with dementia. However, declines are no longer largely attributable to compositional changes in the older population. Continued tracking of dementia prevalence, incidence and mortality among those with and without dementia is needed to understand long-run consequences of the pandemic.

The Changing Demography of Late-Life Family Caregiving: A Research Agenda to Understand Future Care Networks for an Aging U.S. Population.

Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older persons in need of assistance or the increasing heterogeneity of the older population. In this paper, we set forth a framework that places family caregiving in the context of older adults' care needs, the alternatives available to them, and the outcomes of that care. We focus on care networks, rather than individuals, and discuss the demographic and social changes that may alter the formation of care networks in the future. Last, we identify research areas to prioritize in order to better support planning efforts to care for the aging U.S. population.

An Incomplete Model of Disability: Discrepancies Between Performance-Based and Self-Reported Measures of Functioning.

BACKGROUND: Appropriate conceptualization and measurement of disability are critical for population-focused resource allocation and policy development. Self-reported and performance-based measures of functioning have been used to represent disability. Variation in environmental context or self-perception of ability may influence self-reports; however, performance-based measures that attempt to control environmental context may not accurately capture real-world aspects of functioning. This study examined the agreement between self-report and performance-based measures of functioning within 4 domains among older adults. METHODS: Cross-sectional data from the 2021 National Health and Aging Trends Study was used. Self-reported and performance-based measures of functioning were assessed for vision, hearing, mobility, and memory domains. We examined the diagnostic characteristics of performance-based versus self-reported measures using sensitivity, specificity, and receiver operating characteristics curves. Differences in the agreement of these measures across sociodemographic groups were investigated using logistic regression. RESULTS: Among 2 442 respondents 71 years and older (mean 78.5 ± 5.3, 56% female participants), performance measures of hearing and mobility had high sensitivity (89% and 91%, respectively) and low/moderate specificity (36% and 63%, respectively). The sensitivity and specificity of vision measures were 71%. Memory measures had high specificity (89%) and low sensitivity (28%). Performance-based discrimination ranged from 0.59 (memory) to 0.78 (mobility). Agreement varied across sociodemographic factors. CONCLUSIONS: Performance measures diverge from self-reported functioning among older adults. Discordance may reveal opportunities for environmental intervention where participants' performance does not capture the full extent of barriers in their daily lives. Additional research is needed to investigate individual and environmental factors which could explain the observed differences.

THE EFFECTS OF A TARGETED "EARLY BIRD" INCENTIVE STRATEGY ON RESPONSE RATES, FIELDWORK EFFORT, AND COSTS IN A NATIONAL PANEL STUDY.

Adaptive survey designs are increasingly used by survey practitioners to counteract ongoing declines in household survey response rates and manage rising fieldwork costs. This paper reports findings from an evaluation of an early-bird incentive (EBI) experiment targeting high-effort respondents who participate in the 2019 wave of the US Panel Study of Income Dynamics. We identified a subgroup of high-effort respondents at risk of nonresponse based on their prior wave fieldwork effort and randomized them to a treatment offering an extra time-delimited monetary incentive for completing their interview within the first month of data collection (treatment group; N = 800) or the standard study incentive (control group; N = 400). In recent waves, we have found that the costs of the protracted fieldwork needed to complete interviews with high-effort cases in the form of interviewer contact attempts plus an increased incentive near the close of data collection are extremely high. By incentivizing early participation and reducing the number of interviewer contact attempts and fieldwork days to complete the interview, our goal was to manage both nonresponse and survey costs. We found that the EBI treatment increased response rates and reduced fieldwork effort and costs compared to a control group. We review several key findings and limitations, discuss their implications, and identify the next steps for future research.

Public transit stop density is associated with walking for exercise among a national sample of older adults.

BACKGROUND: Walking is the primary and preferred mode of exercise for older adults. Walking to and from public transit stops may support older adults in achieving exercise goals. This study examined whether density of neighborhood public transit stops was associated with walking for exercise among older adults. METHODS: 2018 National Health and Aging Trends Study (NHATS) data were linked with the 2018 National Neighborhood Data Archive, which reported density of public transit stops (stops/mile2) within participants' neighborhood, defined using census tract boundaries. Walking for exercise in the last month was self-reported. The extent to which self-reported public transit use mediated the relationship between density of neighborhood public transit stops and walking for exercise was examined. Covariates included sociodemographic characteristics, economic status, disability status, and neighborhood attributes. National estimates were calculated using NHATS analytic survey weights. RESULTS: Among 4,836 respondents with complete data, 39.7% lived in a census tract with at least one neighborhood public transit stop and 8.5% were public transit users. The odds of walking for exercise were 32% higher (OR = 1.32; 95% confidence interval: 1.08, 1.61) among respondents living in a neighborhood with > 10 transit stops per mile compared to living in a neighborhood without any public transit stops documented. Self-reported public transit use mediated 24% of the association between density of neighborhood public transit stops and walking for exercise. CONCLUSIONS: Density of neighborhood public transit stops was associated with walking for exercise, with a substantial portion of the association mediated by self-reported public transit use. Increasing public transit stop availability within neighborhoods may contribute to active aging among older adults.

Changes in late-life assistance networks for Black and White older adults during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has disproportionately impacted older Black Americans. Given that assistance networks play a crucial role in older adults' ability to respond to challenges, we sought to investigate whether older adults' assistance network size changed during the COVID-19 pandemic and differed by race. METHODS: We analyzed data from the 2018-2020 rounds of the U.S. National Health and Aging Trends Study for Black and White adults aged 70 and older receiving help in the community or residential care settings. We used ordinary least squares regression to compare changes in assistance network size in the 2 years pre-COVID-19 (2018-2019, N = 3438) to changes in size at the onset of COVID-19 (2019-2020, N = 3185). RESULTS: Black older adults had larger assistance networks with a greater number of family helpers before and during the pandemic compared to their White counterparts. Assistance network size for older adults increased before but not during the pandemic mostly due to declines in unpaid nonrelative helpers and lack of increase in paid helpers. These effects did not differ by race. CONCLUSIONS: Black and White older adults experienced similarly sized reductions in their assistance networks as a consequence of the COVID-19 pandemic. Future research should investigate the relationship between these network changes and the unmet needs of older adults.

Work as Overload or Enhancement for Family Caregivers of Older Adults: Assessment of Experienced Well-Being Over the Day.

Objective: This study examines work and care patterns and their association with experienced well-being over the course of the day and tests a moderating effect of gender. Background: Many family and unpaid caregivers to older adults face dual responsibilities of work and caregiving. Yet little is known about how working caregivers sequence responsibilities through the day and their implications for well-being. Method: Sequence and cluster analysis is applied to nationally representative time diary data from working caregivers to older adults in the U.S. collected by the National Study of Caregiving (NSOC) (N=1,005). OLS regression is used to test the association with well-being and a moderating effect of gender. Results: Among working caregivers, five clusters emerged, referred to as: Day Off, Care Between Late Shifts, Balancing Act, Care After Work, and Care After Overwork. Among working caregivers, experienced well-being was significantly lower among those in the Care Between Late Shifts and Care After Work clusters relative to those in the Day Off cluster. Gender did not moderate these findings. Conclusion: The well-being of caregivers who split time between a limited number of hours of work and care is comparable to those who take a day off. However, among working caregivers balancing full-time work - whether day or night - with care presents a strain for both men and women. Implications: Policies that target full-time workers who are balancing care for an older adult may help increase well-being.

The devil's in the details: Variation in estimates of late-life activity limitations across national cohort studies.

BACKGROUND: Assessing activity limitations is central to aging research. However, assessments of activity limitations vary, and this may have implications for the populations identified. We aim to compare measures of activities of daily living (ADLs) and their resulting prevalence and mortality across three nationally-representative cohort studies: the National Health and Aging Trends Study (NHATS), the Health and Retirement Survey (HRS), and the Medicare Current Beneficiary Survey (MCBS). METHODS: We compared the phrasing and context of questions around help and difficulty with six self-care activities: eating, bathing, toileting, dressing, walking inside, and transferring. We then compared the prevalence and 1-year mortality for difficulty and help with eating and dressing. RESULTS: NHATS, HRS, and MCBS varied widely in phrasing and framing of questions around activity limitations, impacting the proportion of the population found to experience difficulty or receive help. For example, in NHATS 12.4% [95% confidence interval (CI) 11.5%-13.4%] of the cohort received help with dressing, while in HRS this figure was 6.4% [95% CI 5.7%-7.2%] and MCBS 5.3% [95% CI 4.7%-5.8%]. When combined with variation in sampling frame and survey approach of each survey, such differences resulted in large variation in estimates of the older population of older adults with ADL disability. CONCLUSIONS: In order to take late-life activity limitations seriously, we must clearly define the measures we use. Further, researchers and clinicians seeking to understand the experience of older adults with activity limitations should be careful to interpret findings in light of the framing of the question asked.

COVID-19-Related Changes in Assistance Networks for U.S. Older Adults With and Without Dementia.

OBJECTIVES: Prepandemic research suggests assistance networks for older adults grow over time and are larger for those living with dementia. We examined how assistance networks of older adults changed in response to the onset of the coronavirus disease 2019 (COVID-19) pandemic and whether these changes differed for those with and without dementia. METHODS: We used 3 rounds of the National Health and Aging Trends Study. We estimated multinomial logistic regression models to test whether changes in assistance networks during COVID-19 (2019-2020)-defined as expansion, contraction, and adaptation-differed from changes prior to COVID-19 (2018-2019). We also estimated ordinary least squares regression models to test differences in the numbers of helpers assisting with one (specialist) versus multiple (generalist) domains before and during COVID-19. For both sets of outcomes, we investigated whether pandemic-related changes differed for those with and without dementia. RESULTS: Over all activity domains, a greater proportion of assistance networks adapted during COVID-19 compared to the pre-COVID-19 period (relative risk ratio = 1.19, p < .05). Contractions in networks occurred for those without dementia. Transportation assistance contracted for those with and without dementia, and mobility/self-care assistance contracted for those with dementia. The average number of generalist helpers decreased during COVID-19 (ß = -0.09, p < .001). DISCUSSION: Early in the pandemic, assistance networks of older adults adapted by substituting helpers, by contracting to reduce exposures with more intimate tasks for recipients with dementia, and by reducing transportation assistance. Future research should explore the impact of such changes on the well-being of older adults and their assistance networks.

Shared Care Networks Assisting Older Adults: New Insights From the National Health and Aging Trends Study.

BACKGROUND AND OBJECTIVES: Caregiving research often assumes older adults receiving care have a primary caregiver who provides the bulk of care. Consequently, little is known about the extent to which care responsibilities are shared more evenly within a care network, the characteristics associated with sharing, or the consequences for meeting older adults' care needs. RESEARCH DESIGN AND METHODS: We analyze a sample of U.S. older adults receiving care from the 2011 National Health and Aging Trends Study (n = 2,398). Based on variables reflecting differences in care hours, activities, and care provided by the whole network, we create network typologies for those with two or more caregivers (n = 1,309) using K-means cluster analysis. We estimate multinomial and logistic regression models to identify factors associated with network type and the association between type and unmet needs. We conduct analyses overall and for older adults living with and without dementia. RESULTS: Analyses reveal four network types: Small, low-intensity shared care network (SCN); large, moderate-intensity SCN; small, low-intensity primary caregiver network (PCN); and moderate-sized, high-intensity PCN. Among all older adults receiving care, 51% have a sole caregiver, 20% have an SCN with no primary caregiver, and 29% have a PCN. Among older adults with dementia receiving intense care, unmet needs are lower among those with an SCN (vs. PCN). DISCUSSION AND IMPLICATIONS: Findings underscore that the primary caregiver construct, although common, does not apply to a substantial share of care networks. Moreover, having an SCN when needs are high may be beneficial to meeting older adult's needs.

COVID-19 pandemic experiences of older adults with dementia in community and residential care settings: Results from a US national survey.

Introduction: Investigations into consequences of the US COVID-19 pandemic for older adults with dementia have been limited. Methods: We used the National Health and Aging Trends Study to examine self-reported COVID-19 infection; measures taken to limit its spread; social, behavioral, and emotional responses to the pandemic; and changes in health-care use and provider communication. We compared adults aged ≥70 with and without dementia in community and residential care settings. Results: In residential care settings, infection was substantially higher and social contact less common for those with dementia. In community and residential care settings, those with dementia had 2 to 3 times the odds of reporting sleeping more often. In residential care settings, those with dementia were less likely to put off care and more likely to start telehealth. Discussion: Findings highlight the disproportionate social and behavioral consequences of the COVID-19 pandemic for those living with dementia, particularly in residential care settings. HIGHLIGHTS: Data are from the nationally representative National Health and Aging Trends Study.COVID-19 infection was higher in residential care settings for those with dementia.Social contact was less common for those with dementia in residential care.Pandemic-related coping behaviors differed by dementia and residential status.In residential care, those with dementia were less likely to delay health care.

The Strength of Parent-Adult Child Ties in Biological Families and Stepfamilies: Evidence From Time Diaries From Older Adults.

We examine older partnered parents' time spent with adult children in biological and step families, treating time together as an indication of relationship strength. Using a unique national sample of U.S. time diaries from the Panel Study of Income Dynamics, we investigate time with all adult children combined and with each adult child. We find that time together depends on family structure and parent-adult child dyadic relationship type embedded in family structure. In analyses of all adult children combined, an older parent is more likely to spend time with adult children in biological families than in stepfamilies only when there is no shared biological child in the stepfamily. In dyadic analyses, a parent's tie with an adult child who is a biological child of both partners is stronger in stepfamilies than in biological families. Moreover, among stepfamilies, ties are not uniformly stronger with biological children relative to stepchildren; differences emerge only in more complex families when each partner has biological children from previous relationships. Our findings challenge the view that ties with older parents are always weaker with stepchildren in stepfamilies and point to the importance of considering parent-child relationships in the broader family context.

A day in the life of caregivers to older adults with and without dementia: Comparisons of care time and emotional health.

INTRODUCTION: How care-related time and emotional health over the day differ for those assisting older adults with and without dementia is unclear. METHODS: Using 2134 time diaries from the National Study of Caregiving, we compared emotional health and care time for caregivers of older adults with and without dementia. RESULTS: Caregivers to older adults with dementia experienced worse (higher scores) on a composite measure of negative emotional health (4.2 vs 3.3; P < .05) and provided more physical/medical care (33.7 vs 16.2 minutes; P < .05) and less transportation assistance (12.6 vs 24.8 minutes; P < .05) than other caregivers. In models, providing physical/medical care was associated with worse emotional health (ß = 0.15; P < .01) and socializing with the care recipient was associated with worse emotional health when the recipient had dementia (ß = 0.28; P < .01). DISCUSSION: Findings highlight the opportunity for targeted interventions to address the emotional consequences of different types of care time in the context of dementia.

Changes in Older Adults' Social Contact During the COVID-19 Pandemic.

OBJECTIVES: To understand changes during the coronavirus disease 2019 (COVID-19) pandemic in weekly contact with nonresident family and friends for U.S. adults aged 70 and older in residential care and community settings. METHODS: Participants in the National Health and Aging Trends Study COVID-19 mail supplement (N = 3,098) reported frequency of phone, electronic, video, and in-person contact with nonresident family and friends in a typical week before and during the pandemic. We examined less than weekly contact by mode for those in residential care settings and community residents with and without limitations. We estimated multinomial logit models to examine predictors of change to less than weekly contact (vs. maintaining weekly or more contact) by mode, overall, and stratified by setting. RESULTS: Weekly in-person contact fell substantially (from 61% to 39%) and more so in residential care (from 56% to 22%), where nearly 4 in 10 transitioned to less than weekly in-person contact (doubling to 8 out of 10). Weekly or more contact was largely stable for electronic and telephone modes across settings. Weekly or more video contact increased mainly for community residents without limitations. Compared to community residents without limitations, those in assisted living or nursing homes had more than 5 times the odds (adjusted odds ratio [AOR] = 5.3; p = .01) of changing to less than weekly in-person contact; those in independent living also had higher odds of changing to less than weekly in-person (AOR = 2.6; p = .01) and video (AOR = 3.4; p = .01) contact. DISCUSSION: The pandemic revealed the importance of ensuring that communication technologies to maintain social ties are available to and usable by older adults, particularly for those living in residential care settings.

Incident Care Trajectories for Older Adults With and Without Dementia.

OBJECTIVE: Despite cross-sectional evidence that persons living with dementia receive disproportionate hours of care, studies of how care intensity progresses over time and differs for those living with and without dementia have been lacking. METHOD: We used the 2011-2018 National Health and Aging Trends Study to estimate growth mixture models to identify incident care hour trajectories ("classes") among older adults (N = 1,780). RESULTS: We identified 4 incident care hour classes: "Low, stable," "High, increasing," "24/7 then high, stable," and "Low then resolved." The high-intensity classes had the highest proportions of care recipients with dementia and accounted for nearly half of that group. Older adults with dementia were 3-4 times as likely as other older adults to experience one of the 2 high-intensity trajectories. A substantial proportion of the 4 in 10 older adults with dementia who were predicted to be in the "Low, stable" class lived in residential care settings. DISCUSSION: Information on how family caregiving is likely to evolve over time in terms of care hours may help older adults with and without dementia, the family members, friends, and paid individuals who care for them, as well as their health care providers assess and plan for future care needs.

Care Received and Unmet Care Needs Among Older Parents in Biological and Step Families.

OBJECTIVES: Increased likelihood of having step children among more recent cohorts of older adults, alongside lower levels of assistance from step children, has led to concerns about greater unmet needs for older parents in step families. However, few studies have directly examined family structure and unmet needs. We examined the associations between having step children (vs. only biological children) and receiving care from adult children, and unmet needs for assistance. METHODS: Using the 2015 National Health and Aging Trends Study, we investigated among older parents with care needs whether levels of care received from adult children and unmet needs differed between those with biological versus step families. We also explored whether a partner or paid care compensated for observed differences. RESULTS: Older parents in need of care were more than twice as likely to receive care from their adult children if they had biological instead of step families. Unmet needs among older parents did not differ by family structure, nor did levels of partner or paid care. DISCUSSION: Results illustrate that concerns about the implications of the rising prevalence of step families for care parents receive from their children may be warranted. However, there is a lack of evidence of greater unmet need for care for older parents in step families, as risks of unmet needs are high for older parents regardless of family type.