Kinship and Care: Racial Disparities in Potential Dementia Caregiving in the United States From 2000 to 2060

Abstract

Background: Although the family plays a pivotal role in older adults' care, there is limited research on how evolving demographic trends affect older adults' support networks and how the trends vary by race. To fill this gap, we examine the influence of shifting family demographics on future care needs for older adults with dementia, emphasizing the unequal health and potential caregiving burdens by race in the United States.

Methods: Using demographic models of kinship, we estimate the availability of potential caregivers, and dementia prevalence among one's kin by race, kin type, and the age of a focal person from 2000 to 2060. We introduce an index called the Dementia Dependency Ratio to assess dementia caregiving demands at the population level, taking into account the age and kinship structure of the population.

Results: Our findings suggest that Black individuals tend to have more children, grandchildren, and nieces/nephews as they age. However, Black individuals also tend to have more kin with dementia compared to their White counterparts. This elevated prevalence of dementia among Black kinship networks counterbalances the advantage of having more kin as potential caregivers. A further projection analysis suggests that the racial gap in caregiving demand within the kinship network will widen in the next 4 decades if the racial gap in dementia prevalence remains unchanged.

Conclusions: These findings emphasize the urgency of reducing racial inequality in dementia prevalence rates and increasing public support for families with extended members affected by dementia. With the shrinkage of nuclear families and population aging in the next few decades, extended family members may undertake more caregiving responsibilities for dementia. We call for a kinship perspective in understanding dementia care in future research.

Keywords: Alzheimer’s; Health disparities; Home care.

Figure 1.

Expected number of kin of various kinds as a function of the age of focal in 2016. Sources: National Vital Statistics Reports, 1996–2017; Vital Statistics of the United States, 1960–1995; Vital Statistics of the United States (abridged life table), 1946–1959; United States Life Tables and Actuarial Tables, 1939–1941; United States Life Tables for 1900–1902, 1901–1910, 1909–1911, 1919–1921, 1920–1929, and 1929–1931; Fertility Tables for Birth Cohorts by Color: United States, 1917–1980; National Vital Statistics Reports for 2015 and 2018; 2017 National Population Projections Data Sets.

Figure 2.

The changing expected number of kin of various kinds for individuals at the ages of 65 and 85 by race from 2000 to 2060. Sources: National Vital Statistics Reports, 1996–2017; Vital Statistics of the United States, 1960–1995; Vital Statistics of the United States (abridged life table), 1946–1959; United States Life Tables and Actuarial Tables, 1939–1941; United States Life Tables for 1900–1902, 1901–1910, 1909–1911, 1919–1921, 1920–1929, and 1929–1931; Fertility Tables for Birth Cohorts by Color: United States, 1917–1980; National Vital Statistics Reports for 2015 and 2018; 2017 National Population Projections Data Sets.

Figure 3.

The prevalence rate of dementia for various kinds of kin by race and age of focal in 2000, 2016, and 2060. Sources: National Vital Statistics Reports, 1996–2017; Vital Statistics of the United States, 1960–1995; Vital Statistics of the United States (abridged life table), 1946–1959; United States Life Tables and Actuarial Tables, 1939–1941; United States Life Tables for 1900–1902, 1901–1910, 1909–1911, 1919–1921, 1920–1929, and 1929–1931; Fertility Tables for Birth Cohorts by Color: United States, 1917–1980; National Vital Statistics Reports for 2015 and 2018; 2017 National Population Projections Data Sets; Health and Retirement Study, 2000–2016 (53).

Figure 4.

(A) The number of kin with dementia by race in 2016; (B) The number of kin aged 16–64 without dementia by race in 2016; and (C) The dementia dependency ratio as a function of the age of focal by race in 2016. Sources: National Vital Statistics Reports, 1996–2017; Vital Statistics of the United States, 1960–1995; Vital Statistics of the United States (abridged life table), 1946–1959; United States Life Tables and Actuarial Tables, 1939–1941; United States Life Tables for 1900–1902, 1901–1910, 1909–1911, 1919–1921, 1920–1929, and 1929–1931; Fertility Tables for Birth Cohorts by Color: United States, 1917–1980; National Vital Statistics Reports for 2015 and 2018; 2017 National Population Projections Datasets; Health and Retirement Study, 2000–2016 (53).

Figure 5.

Estimated dementia dependency ratio between 2010 and 2020 and projected dementia dependency ratio from 2021 to 2060. Sources: National Vital Statistics Reports, 1996–2017; Vital Statistics of the United States, 1960–1995; Vital Statistics of the United States (abridged life table), 1946–1959; United States Life Tables and Actuarial Tables, 1939–1941; United States Life Tables for 1900–1902, 1901–1910, 1909–1911, 1919–1921, 1920–1929, and 1929–1931; Fertility Tables for Birth Cohorts by Color: United States, 1917–1980; National Vital Statistics Reports for 2015 and 2018; 2017 National Population Projections Datasets; Health and Retirement Study, 2000–2016 (53). In Counterfactual 1, we maintained kinship differences but equalized dementia rates to match White individuals. In Counterfactual 2, we equalized kinship structures to the White, but let dementia rates vary by race. After the first vertical dashed line in 2016, dementia rates reflect the observed values observed in 2016. Beyond the second vertical dashed line in 2020, the vital statistics are based on projections.