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Families Caring for an Aging America (2016)

Chapter: Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult

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Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Appendix D

Number of Years and Percentage of Adult Life Spent Caring for an Older Adult

Commissioned Analysis by Vicki A. Freedman, Ph.D.

INTRODUCTION

Adults may be called on to provide care to an older adult one or more times during their lifetime. Young adults may participate in the care of their grandparents; adults in their 50s and 60s may need to care for an aging parent or parent-in-law; and older adults may provide care to spouses or siblings. The number of years that adults can be expected to spend on average in a caregiving role in the United States has not been previously quantified.

This memo provides estimates for the United States of the average number of years expected and percentage of remaining life to be spent providing care to an adult age 65 or older with an activity limitation. Findings are presented for informal (family or unpaid non-relative) adult caregivers to older adults with one or more activity limitations and for an alternative (narrower) definition of caregiving to older adults who meet criteria for severe limitations.

GENERAL APPROACH

The estimates presented here draw on a widely used life table methodology developed for generating active life expectancy estimates.1 Instead of generating years and percentage of life spent without disability, we use the methodology to calculate years and percentage of life spent caregiving.

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1 Details of the method are available in Sullivan (1971) and the statistical underpinnings developed in Imai and Soneji (2007). Step-by-step calculations are available in Jagger et al. (2006).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

The method involves three steps. First, the proportion of adults providing care is calculated for 10-year age groups. Numerators are drawn from the 2011 National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Study (NHATS) and denominators are from the 2011 Current Population Survey (CPS). Then, life tables provided by the National Center for Health Statistics are used to generate person-years lived and life expectancy for each age group. Finally, caregiving rates are combined with the life table estimates to apportion life expectancy into the average number of years and percentage of remaining life expected to be providing care. Additional methodological details are provided in the technical appendix.

CAREGIVING DEFINITIONS

We include care provided to adults ages 65 and older who live in community or residential care settings (other than nursing homes) and received assistance in the prior month with self-care or mobility activities (eating, bathing, dressing, or toileting; getting out of bed; getting around inside; getting outside) or household activities (doing laundry, shopping for groceries or personal items, making hot meals, handling bills and banking, and keeping track of medications), the latter for health or functioning reasons. For the alternative definition, we include only care to older adults who live in community or residential care settings (other than nursing homes) and either have probable dementia or received assistance in the past month with two or more self-care activities (eating, bathing, dressing, toileting, or getting in or out of bed).

For both definitions, caregivers are family members or unpaid non-relatives ages 20 and older who provided assistance in the past month with mobility, self-care, or household tasks; transportation; money matters other than bills or banking; or medical activities (sitting in with the sample person at physician visits; helping with insurance decisions).2

LIMITATIONS

The analysis has several limitations. First, estimates are sensitive to the definition of caregiving. Although we have demonstrated sensitivity to narrower definitions, using a broader definition that does not require the older adult to have a limitation or that includes a broader (or undefined) set of care tasks would yield higher estimates. Second, estimates of lifetime caregiving do not provide insights into the distribution of years spent caring

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2 We also generated a second set of alternative (narrow) estimates by imposing a minimum duration of receipt of help of 3 months or longer. See technical appendix for additional details.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

and include those who never provide care. Thus, the estimates should be interpreted as population averages. Third, calculations apply current age-specific mortality and caregiving rates to a hypothetical cohort; hence, they are not intended to be forecasts of future experience. The stability of future caregiving rates will depend on a number of factors, including changes in late-life disability and mortality rates, average family size and composition, competing demands from work and family, the availability of formal caregivers, and cultural norms (Stone, 2015).

KEY FINDINGS

Proportion of Adults Providing Care to Older Adults

In 2011, approximately 18 million adults ages 20 and older—nearly 8 percent of all those age 20 and older—provided care to older adults with one or more activity limitations. The percentage of adults providing care ranges from less than 2 percent among those ages 20 to 29 to 16 percent among those ages 70 to 79 (Table D-1).

During mid-life (ages 40-69), women are more likely than men to provide care whereas men are more likely than women to provide care above age 80. Consequently, the chances of providing care peaks at different ages for men (nearly 16% older than age 70) and women (more than 18% among those ages 60 to 69).

About 8.5 million caregivers (48% of caregivers) provided care to an older adult with severe limitations. Percentages providing care are substantially lower using this narrower definition: the percentage ranges from less than 1 percent among those ages 20 to 29 to more than 7 percent among those ages 60 to 69 (last panel of Table D-1).

Number of Years and Percentage of Remaining Lifetime Providing Care to Older Adults

A 20-year-old adult can expect to spend on average 5.1 years—or nearly 9 percent of his or her remaining lifetime—caring for an older adult with an activity limitation (Table D-2). Over their lifetimes, women spend more years caring than men—on average 6.1 years or nearly 10 percent of their adult life—whereas men spend on average 4.1 years or just more than 7 percent of their adult life (p<.05 for difference in years).

The percentage of remaining life to be spent providing care peaks at different ages for men and women. For men, once they reach age 70, nearly 16 percent of remaining lifetime—or 1 to 2 years—is spent caring for an older adult. For women, this figure peaks between ages 50 and 69, when about 15 percent of remaining lifetime—or about 4 to 5 years—is spent caring.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-1 Proportion Giving Care to Older Adults, by 10-Year Age Groups, 2011

Caregiver’s Age Group To Older Adults with One or More Activity Limitationsa To Older Adults with Severe Limitationsb
All Men Women All
Proportion Caregiving SE Proportion Caregiving SE Proportion Caregiving SE Proportion Caregiving SE
20-29 0.016 0.0029 0.015 0.0041 0.018 0.0040 0.008 0.0022
30-39 0.027 0.0039 0.021 0.0045 0.033 0.0056 0.013 0.0028
40-49 0.068 0.0068 0.049 0.0075 0.086 0.0099 0.036 0.0049
50-59 0.115 0.0097 0.081 0.0079 0.147 0.0156 0.056 0.0069
60-69 0.149 0.0126 0.111 0.0115 0.184 0.0184 0.073 0.0088
70-79 0.160 0.0152 0.159 0.0191 0.161 0.0181 0.060 0.0089
80+ 0.115 0.0137 0.157 0.0243 0.088 0.0153 0.061 0.0109
Caregivers (in millions) 17.7 6.8 10.9 8.5
% of population caregiving 7.9% 6.3% 9.5% 3.8%
(n) 1,971 660 1,311 1,018

NOTE: Caregivers are family members or unpaid non-relatives ages 20 and older who provided assistance in the past month with mobility, self-care, or household tasks; transportation; money matters other than bills or banking; or medical activities (sitting in with the sample person at physician visits; helping with insurance decisions).

aAdults ages 65 and older who live in community or residential care settings (other than nursing homes) and received assistance in the prior month with self-care or mobility activities (eating, bathing, dressing, or toileting; getting out of bed; getting around inside; getting outside) or household activities (doing laundry, shopping for groceries or personal items, making hot meals, handling bills and banking, and keeping track of medications), the latter for health or functioning reasons.

bAdults ages 65 and older who live in community or residential care settings (other than nursing homes) and either have probable dementia or received assistance in the past month with two or more self-care activities (eating, bathing, dressing, toileting, or getting out of bed).

SOURCES: Estimates calculated from the 2011 Current Population Survey and the 2011 National Study of Caregiving (NSOC) linked to the National Health and Aging Trends Study, unweighted n for NSOC.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-2 Expected Number of Years and Percentage of Remaining Life Caring for an Older Adult, 2011

To Older Adults with One or More Activity Limitation(s)a To Older Adults with Severe Limitationsb
All Caregivers Men Women All Caregivers
Caregiver’s Age Group Years (95% CI) % of Remaining Life Years (95% CI) % of Remaining Life Years (95% CI) % of Remaining Life Years (95% CI) % of Remaining Life
20-29 5.1 (4.7, 5.5) 8.6 4.1 (3.7, 4.5) 7.2 6.1 (5.5, 6.7) 9.9 2.4 (2.1, 2.7) 4.1
30-39 5.0 (4.6, 5.4) 10.0 4.0 (3.6, 4.5) 8.4 6.0 (5.4, 6.5) 11.5 2.4 (2.1, 2.6) 4.7
40-49 4.8 (4.4, 5.2) 11.9 3.9 (3.5, 4.3) 10.1 5.7 (5.1, 6.3) 13.4 2.3 (2.0, 2.5) 5.6
50-59 4.2 (3.8, 4.6) 13.5 3.5 (3.1, 3.9) 11.9 4.9 (4.4, 5.5) 14.9 2.0 (1.7, 2.2) 6.2
60-69 3.3 (3.0, 3.7) 14.4 2.9 (2.5, 3.4) 13.8 3.7 (3.2, 4.1) 15.0 1.5 (1.3, 1.7) 6.5
70-79 2.2 (1.8, 2.5) 14.1 2.2 (1.8, 2.7) 15.8 2.1 (1.7, 2.5) 12.8 0.9 (0.7, 1.1) 6.0
80+ 1.0 (0.8, 1.3) 11.5 1.3 (0.9, 1.7) 15.7 0.8 (0.6, 1.1) 8.8 0.5 (0.4, 0.7) 6.1

NOTE: Caregivers are family members or unpaid non-relatives ages 20 and older who provided assistance in the last month with mobility, self-care, or household tasks; transportation; money matters other than bills or banking; or medical activities (sitting in with the sample person at physician visits; helping with insurance decisions).

aAdults ages 65 and older who live in community or residential care settings (other than nursing homes) and received assistance in the prior month with self-care or mobility activities (eating, bathing, dressing, or toileting; getting out of bed; getting around inside; getting outside) or household activities (doing laundry, shopping for groceries or personal items, making hot meals, handling bills and banking, and keeping track of medications), the latter for health or functioning reasons.

bAdults ages 65 and older who live in community or residential care settings (other than nursing homes) and either have probable dementia or received assistance in the past month with two or more self-care activities (eating, bathing, dressing, toileting, or getting out of bed).

SOURCES: Estimates calculated from the 2011 Current Population Survey and the 2011 National Study of Caregiving (NSOC) linked to the National Health and Aging Trends Study, unweighted n for NSOC.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

On average, 2.4 years—or nearly half of the years spent providing care to an older adult (2.4/5.1 years)—is spent providing care to an older adult with severe limitations, defined as receiving help with two or more activities of daily living or having probable dementia (second to last column of Table D-2).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TECHNICAL APPENDIX
Methodology for Calculating Average Number of Years and Percentage of Adult Life Spent Caregiving

DATA SOURCES AND CAREGIVER DEFINITIONS

Source of Caregiving Information. Age-specific estimates of the proportion caregiving are calculated from two sources.

Numerators are drawn from the National Study of Caregiving (NSOC), a follow-back to the 2011 National Health and Aging Trends Study (NHATS).3 NHATS is a nationally representative study of Medicare enrollees ages 65 or older living across all settings. The Round 1 response rate was 71 percent. NSOC is a follow-back telephone interview with all caregivers of eligible 2011 NHATS participants (see below for definition). NHATS respondents provided contact information for 68 percent of eligible caregivers. Sixty percent of those with contact information completed a telephone interview. NSOC provides non-response adjusted weights that are intended to adjust for the three levels of non-response so that the sample represents the total family caregiver population as identified in NHATS. For details see Kasper et al. (2013b).

Denominators (number of individuals in the non-institutionalized population by 10-year age groups) are drawn from the 2011 Current Population Survey (CPS) (U.S. Census Bureau, 2011).

Definition of Caregiving. NHATS participants were eligible for NSOC if they lived in the community or residential care settings other than nursing homes and received assistance in the past month with self-care or mobility activities (bathing, dressing, eating, toileting, getting out of bed, getting around inside, and going outside) or household activities (doing laundry, shopping for groceries or personal items, making hot meals, handling bills and banking, and keeping track of medications), the latter for health or functioning reasons.

Once eligible NHATS participants were identified, caregivers were eligible for NSOC if they were family members or unpaid non-relatives who provided assistance in the past month (according to the NHATS respondent) with mobility, self-care, household tasks, or transportation, or in the past year with money matters other than bills or banking or medical

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3 NHATS and NSOC are sponsored by the National Institute on Aging (grant number NIA U01AG32947) and were conducted by the Johns Hopkins University.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

activities (sitting in with the sample person at physician visits; helping with insurance decisions).

Of the 2,007 caregivers interviewed in NSOC, we excluded 11 respondents who did not provide care in the past month (according to NSOC) and 25 who were younger than age 20. Of the remaining 1,971 caregivers included in the analysis, 31 were missing age.4

Alternative (Narrower) Definition of Caregiving to Older Adults with Severe Limitations. We also generated estimates for a narrower definition of the caregiving population that includes only those who cared for an older adult with severe limitations. This group of care recipients is defined as living in the community or in residential care (other than nursing homes) and either (1) receiving help with two or more out of five activities (getting out of bed, eating, toileting, bathing, or dressing) or (2) being classified as having probable dementia.5 We also generated a second set of alternative (narrow) estimates that imposed a minimum duration of receipt of help of 3 months.6

CALCULATIONS

Choice of Age Interval. Ten-year age groups were chosen over smaller (e.g., 5-year) groups in order to ensure ample precision of estimates of the proportion providing care in each age group. For the broader definition of care for men and women together, there was also ample precision to repeat calculations using 5-year age intervals (presented at the end of this appendix).7

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4 Age at the NSOC interview was calculated from month and year of birth from NHATS for spouse caregivers and from NSOC for other types of caregivers. For 36 cases where age was missing from NSOC, the information was filled in based on age in NHATS. An additional 31 cases were still missing age, and assumed to be missing age at random (i.e., we assumed knowing their ages would not change the age distribution).

5 NHATS participants were considered to have probable dementia if: the participant or the proxy reported a doctor’s diagnosis of dementia or Alzheimer’s disease; the participant received a score of 2 or more on a dementia screening instrument administered to a proxy; or the participant scored >=1.5 SD below the mean on at least two out of three domains on tests of memory, orientation, and executive functioning. These criteria have high sensitivity and specificity relative to a clinical diagnostic assessment (see Kasper et al., 2013b).

6 In the second set of calculations, duration of help was assumed to be 3 or more months if the NHATS respondent received assistance for 3 or more months with any self-care activities (if they reported receiving assistance with eating, toileting, bathing, or dressing) or with any mobility activities (if they only reported receiving help getting out of bed). This additional restriction is intended to approximate the 90-day requirement in the definition of disability in the Health Insurance Portability and Accountability Act (Drabek and Marton, 2015).

7 For all estimates, Relative Standard Errors (i.e., ratio of a standard error of an estimate to the estimate) are less than .30, a commonly used guideline in health surveys (Klein et al., 2002).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Proportion Caregiving and Standard Errors. To obtain estimates of the proportion caregiving, ncx, we divided the weighted number of caregivers from NSOC in each 10-year age group by the non-institutionalized population in each age group from the CPS for 2011 (see Table D-3).

Standard errors of proportions were calculated by taking the square root of the variance, according to the following formula: var(nPx*W*N/nTx) = (N^2) * [(W^2)*var(nPx) + (nPx^2)*var(W) + (var(nPx )*var(W))] / (nTx^2), where nPx is the proportion of caregivers in age group x to x+n, W is the average weight for the caregiving sample, N is the number of caregivers in the sample, and nTx is the number of adults in the population in age group x to x+n.8Table D-4 shows the unweighted and weighted sample sizes and the mean and standard error of the weight used in the calculations of the standard errors.

These calculations take into account uncertainty from two components in the numerators of the care rates: the distribution of caregivers across age groups (nPx) and the mean population weight (W). Standard errors for nPx and W were estimated using svy commands in Stata that take into account the complex design of NSOC. Population counts (from the CPS) are assumed to be fixed. The latter assumption should have minimal influence on the confidence intervals because the CPS relies on large sample sizes and produces point estimates very similar to the population counts from the 2010 Census.

Life Table Calculations. Unabridged (single year of age) life tables, available for 2010 for the entire population and by gender, were converted to abridged (10-year age category) life tables according to procedures described in Arias (2014). Because the focus of the caregiving calculations is adult life, we began the life table calculations at age 20; that is, the initial population (i.e., “radix”) of the life table was assumed to begin at age 20 with 100,000 people (see Table D-5).

Expected Years of Care and Percentage of Remaining Life Spent Caring. Life expectancy was apportioned into years spent caring using Sullivan’s method. First, we divided person-years expected to be lived in each age group (nLx in Table D-5) according to the proportion in each age group who provide care (ncx in Table D-6). Then, we calculated total years caring from age x forward by summing the person-years caring for the current age group to age 80+. We then calculated the expected number of years caring from age x by dividing the total years caring from age x forward by

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8 For gender-specific estimates, we used the proportion of women (men) caregivers in age group i, the average weight for women (men), the number of women (men) caregivers, and the number of women (men) in the population in age group i.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-3 Calculation of Age-Specific Proportions Caregiving and Standard Errorsa

Age (years) Age Distribution of Caregivers (P)b SE (P)b Weighted Number of Caregiversb Population (000s)c Proportion Caregivingncx SEncx
Caregivers to Older Adults with One or More Activity Limitations
All
20-29 0.039 0.0065 694,673 42,907 0.016 0.0029
30-39 0.060 0.0077 1,066,180 39,457 0.027 0.0039
40-49 0.163 0.0127 2,886,054 42,576 0.068 0.0068
50-59 0.269 0.0154 4,761,929 41,519 0.115 0.0097
60-69 0.250 0.0141 4,422,162 29,590 0.149 0.0126
70-79 0.148 0.0105 2,615,696 16,342 0.160 0.0152
80+ 0.069 0.0071 1,225,864 10,676 0.115 0.0137
Men
20-29 0.047 0.0130 321,344 21,877 0.015 0.0041
30-39 0.060 0.0124 405,133 19,609 0.021 0.0045
40-49 0.153 0.0213 1,032,939 20,972 0.049 0.0075
50-59 0.241 0.0182 1,632,888 20,194 0.081 0.0079
60-69 0.231 0.0191 1,563,215 14,047 0.111 0.0115
70-79 0.172 0.0176 1,162,429 7,307 0.159 0.0191
80+ 0.097 0.0137 654,311 4,174 0.157 0.0243
Women
20-29 0.034 0.0072 372,848 21,029 0.018 0.0040
30-39 0.061 0.0091 661,076 19,848 0.033 0.0056
40-49 0.170 0.0149 1,853,752 21,604 0.086 0.0099
Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
50-59 0.287 0.0217 3,130,715 21,325 0.147 0.0156
60-69 0.262 0.0174 2,860,092 15,544 0.184 0.0184
70-79 0.133 0.0112 1,451,872 9,035 0.161 0.0181
80+ 0.052 0.0082 569,945 6,502 0.088 0.0153
Caregivers to Older Adults with Severe Limitationsd
20-29 0.042 0.0102 352,627 42,907 0.008 0.0022
30-39 0.060 0.0118 511,955 39,457 0.013 0.0028
40-49 0.179 0.0177 1,522,016 42,576 0.036 0.0049
50-59 0.273 0.0211 2,316,811 41,519 0.056 0.0069
60-69 0.254 0.0190 2,156,373 29,590 0.073 0.0088
70-79 0.115 0.0131 9,758,11 16,342 0.060 0.0089
80+ 0.076 0.0117 6,462,06 10,676 0.061 0.0109
Caregivers to Older Adults with Severe Limitations for 3 or More Monthsd
20-29 0.038 0.0103 297,507 42,907 0.007 0.0020
30-39 0.064 0.0135 497,619 39,457 0.013 0.0029
40-49 0.179 0.0179 1,386,147 42,576 0.033 0.0044
50-59 0.270 0.0222 2,095,630 41,519 0.050 0.0062
60-69 0.258 0.0184 2,000,285 29,590 0.068 0.0078
70-79 0.112 0.0131 870,636 16,342 0.053 0.0079
80+ 0.078 0.0128 605,843 10,676 0.057 0.0106

a See text for formula for calculating Standard Errors.

b SOURCE: 2011 National Study of Caregiving linked to the National Health and Aging Trends Study.

c SOURCE: U.S. Census Bureau 2011 Current Population Survey.

d See text for definition of severe limitations.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-4 Sample Sizes, Weighted Population, and Mean Weight for Caregiving Samples

Sample Size Weighted Population of Caregivers Mean Weight (SE)
Caregivers to older adults with one or more activity limitations

All

1,971 17,672,559 8,966 (561)

Men

660 6,772,259 10,261 (638)

Women

1,311 10,900,300 8,314 (622)
Caregivers to older adult with severe limitations Ia 1,018 8,481,799 8,331 (793)
Caregivers to older adult with severe limitations IIa 953 7,753,666 8,136 (732)

aSee text for definition of severe limitations.

SOURCE: 2011 National Study of Caregiving linked to the National Health and Aging Trends Study.

the number surviving to age x (column lx in Table D-5). The percentage of remaining life to be spent caring was calculated by dividing the expected number of years caring from age x (in Table D-6) by the expectation of life at age x (in Table D-5). Step-by-step calculations (for active life expectancy) are available in Jagger et al. (2006).

Confidence Intervals for Expected Number of Years Caring.Table D-7 presents calculations of the standard error of the expected number of years caring. These calculations adopt the usual assumption that mortality rates (from vital statistics), which generate the life table estimates, are fixed. Step 1 (column 1) was to take the square of the number of person-years lived in each age group (nLx from Table D-5) and multiply that figure by the variance (squared standard error) of the proportion caregiving in that age group (SE(ncx) calculated in Table D-3). In column 2 we sum the figures in column 1 from age x forward. The variance of the expected number of years caring is then column 2 divided by the squared number of people surviving to age x (lx from Table D-5), and the standard error is the square root of this calculation. Confidence intervals of 95 percent are calculated using the standard approach of plus or minus 1.96 times the standard error of the estimate. A test statistic for differences in number of years caring between men and women (3.87) was calculated by dividing the difference in years caring (6.1-4.1) by the sum of the square roots of the variances (.218+.299).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Alternative Estimates Using 5-Year Age Groups. To examine the sensitivity of calculations to age group width, Tables D-8 through D-11 provide calculations using 5-year age groups for (all) caregivers providing care to an older adult with activity limitations. Findings regarding percentage of life spent caregiving are consistent with calculations using 10-year and 5-year age groups. For example, at age 80 there is only a .2 percentage point difference between the estimates based on 10-year (11.3 percent) and 5-year (11.5 percent) age groups.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-5 Abridged Life Table Calculations, Adults Ages 20 and Older, 2010

Age (years) Probability of Dying Between Ages x to x + n Number Surviving to Age x Number Dying Between Ages x to x + n Person-Years Lived Between Ages x to x + n Total Number of Person-Years Lived Above Age x Expectation of Life at Age x
nqx lx ndx nLx Tx ex
All
20-29 0.00909 100,000 909 995,570 5,939,745 59.4
30-39 0.01237 99,091 1,226 985,124 4,944,175 49.9
40-49 0.02586 97,865 2,531 967,442 3,959,051 40.5
50-59 0.05859 95,334 5,586 927,774 2,991,609 31.4
60-69 0.12054 89,748 10,819 848,067 2,063,835 23.0
70-79 0.26747 78,930 21,111 692,193 1,215,768 15.4
80+ 1.00000 57,819 57,819 523,575 523,575 9.1
Men
20-29 0.01303 100,000 1,303 993,590 5,702,801 57.0
30-39 0.01602 98,697 1,582 979,388 4,709,211 47.7
40-49 0.03189 97,116 3,097 957,437 3,729,823 38.4
50-59 0.07367 94,019 6,927 908,627 2,772,386 29.5
60-69 0.14668 87,092 12,775 812,035 1,863,759 21.4
70-79 0.31301 74,317 23,262 635,119 1,051,724 14.2
80+ 1.00000 51,055 51,055 416,606 416,606 8.2
Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Women
20-29 0.00502 100,000 502 997,625 6,166,526 61.7
30-39 0.00872 99,498 867 991,009 5,168,900 51.9
40-49 0.01992 98,631 1,964 977,617 4,177,891 42.4
50-59 0.04409 96,666 4,262 947,025 3,200,274 33.1
60-69 0.09625 92,405 8,894 883,977 2,253,249 24.4
70-79 0.22886 83,510 19,112 748,357 1,369,272 16.4
80+ 1.00000 64,399 64,399 620,914 620,914 9.6

SOURCE: Based on National Center for Health Statistics (Arias, 2014).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-6 Calculation of Expected Number of Years and Proportion of Remaining Life Spent Caregiving

Proportion Caregiving SE Person-Years Caring Total Years Caring from Age x Forward Expected Number of Years Caring from Age x 95% CI Percentage of Remaining Life Caring
Age (years) ncx SEncx ncx * nLx Tcx ecx ecx – 1.96 SE ecx + 1.96 SE ecx/ex*100
Caregivers to Older Adults with One or More Activity Limitations
All
20-29 0.016 0.0029 16,118 512,379 5.1 4.7 5.5 8.6
30-39 0.027 0.0039 26,619 496,260 5.0 4.6 5.4 10.0
40-49 0.068 0.0068 65,579 469,641 4.8 4.4 5.2 11.9
50-59 0.115 0.0097 106,409 404,062 4.2 3.8 4.6 13.5
60-69 0.149 0.0126 126,742 297,653 3.3 3.0 3.7 14.4
70-79 0.160 0.0152 110,792 170,911 2.2 1.8 2.5 14.1
80+ 0.115 0.0137 60,119 60,119 1.0 0.8 1.3 11.5
Men
20-29 0.015 0.0041 14,595 412,169 4.1 3.7 4.5 7.2
30-39 0.021 0.0045 20,235 397,574 4.0 3.6 4.5 8.4
40-49 0.049 0.0075 47,157 377,339 3.9 3.5 4.3 10.1
50-59 0.081 0.0079 73,472 330,183 3.5 3.1 3.9 11.9
60-69 0.111 0.0115 90,367 256,711 2.9 2.5 3.4 13.8
70-79 0.159 0.0191 101,037 166,344 2.2 1.8 2.7 15.8
80+ 0.157 0.0243 65,307 65,307 1.3 0.9 1.7 15.7
Women
20-29 0.018 0.0040 17,688 610,949 6.1 5.5 6.7 9.9
30-39 0.033 0.0056 33,007 593,261 6.0 5.4 6.5 11.5
Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
40-49 0.086 0.0099 83,885 560,253 5.7 5.1 6.3 13.4
50-59 0.147 0.0156 139,032 476,368 4.9 4.4 5.5 14.9
60-69 0.184 0.0184 162,651 337,336 3.7 3.2 4.1 15.0
70-79 0.161 0.0181 120,257 174,684 2.1 1.7 2.5 12.8
80+ 0.088 0.0153 54,427 54,427 0.8 0.6 1.1 8.8
Caregivers to Older Adults with Severe Limitationsa
20-29 0.008 0.0022 8,182 242,146 2.4 2.1 2.7 4.1
30-39 0.013 0.0028 12,782 233,964 2.4 2.1 2.6 4.7
40-49 0.036 0.0049 34,584 221,182 2.3 2.0 2.5 5.6
50-59 0.056 0.0069 51,771 186,597 2.0 1.7 2.2 6.2
60-69 0.073 0.0088 61,803 134,826 1.5 1.3 1.7 6.5
70-79 0.060 0.0089 41,332 73,024 0.9 0.7 1.1 6.0
80+ 0.061 0.0109 31,691 31,691 0.5 0.4 0.7 6.1
Caregivers to Older Adults with Severe Limitations for 3 or More Monthsa
20-29 0.007 0.0020 6,903 221,571 2.2 2.0 2.5 3.7
30-39 0.013 0.0029 12,424 214,668 2.2 1.9 2.4 4.3
40-49 0.033 0.0044 31,497 202,244 2.1 1.8 2.3 5.7
50-59 0.050 0.0062 46,828 170,747 1.8 1.6 2.0 5.7
60-69 0.068 0.0078 57,329 123,918 1.4 1.2 1.6 6.0
70-79 0.053 0.0079 36,877 66,589 0.8 0.7 1.0 5.5
80+ 0.057 0.0106 29,712 29,712 0.5 0.3 0.7 5.7

a See text for definition of severe limitations.

SOURCE: Proportion caring ncx and standard errors SE (ncx) calculated in Table D-3. nLx calculated in Table D-7. Standard errors of ecx calculated in Table D-7.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-7 Calculation of Standard Error of Caregiving Life Expectancy

Age (years) nLx^2 * SE(ncx)^2 (column 1) Sum Col. 1 from Age x Forward (column 2) V=col. 2/lx^2 (column 3) SE= sqrt (column 3)
Caregivers to Older Adults with One or More Activity Limitations
All
20-29 8,245,389 422,867,873 0.0423 0.2056
30-39 14,497,857 414,622,484 0.0422 0.2055
40-49 42,859,716 400,124,627 0.0418 0.2044
50-59 81,257,655 357,264,911 0.0393 0.1983
60-69 113,761,156 276,007,256 0.0343 0.1851
70-79 110,473,754 162,246,101 0.0260 0.1614
80+ 51,772,346 51,772,346 0.0155 0.1244
Men
20-29 16,878,542 477,271,264 0.0477 0.2185
30-39 19,250,239 460,392,722 0.0473 0.2174
40-49 52,148,957 441,142,483 0.0468 0.2163
50-59 51,880,478 388,993,526 0.0440 0.2098
60-69 87,830,250 337,113,048 0.0444 0.2108
70-79 147,189,970 249,282,798 0.0451 0.2125
80+ 102,092,828 102,092,828 0.0392 0.1979
Women
20-29 15,681,031 896,191,523 0.0896 0.2994
30-39 30,630,022 880,510,492 0.0889 0.2982
40-49 93,628,007 849,880,470 0.0874 0.2956
50-59 218,740,540 756,252,464 0.0809 0.2845
60-69 264,412,916 537,511,924 0.0630 0.2509
70-79 183,393,283 273,099,007 0.0392 0.1979
80+ 89,705,725 89,705,725 0.0216 0.1471
Caregivers to Older Adults with Severe Limitationsa
20-29 4,663,542 202,510,852 0.0203 0.1423
30-39 7,780,073 197,847,310 0.0201 0.1419
40-49 22,544,727 190,067,237 0.0198 0.1409
50-59 40,499,527 167,522,510 0.0184 0.1358
60-69 56,232,746 127,022,983 0.0158 0.1256
70-79 37,938,610 70,790,237 0.0114 0.1066
80+ 32,851,627 32,851,627 0.0098 0.0991
Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Age (years) nLx^2 * SE(ncx)^2 (column 1) Sum Col. 1 from Age x Forward (column 2) V=col. 2/lx^2 (column 3) SE= sqrt (column 3)
Caregivers to Older Adults with Severe Limitations for 3 or More Monthsa
20-29 3,863,784 166,956,322 0.0167 0.1292
30-39 8,135,709 163,092,538 0.0166 0.1289
40-49 18,001,446 154,956,829 0.0162 0.1272
50-59 32,703,580 136,955,383 0.0151 0.1228
60-69 43,504,373 104,251,803 0.0129 0.1138
70-79 29,781,218 60,747,430 0.0098 0.0987
80+ 30,966,212 30,966,212 0.0093 0.0962

a See text for definition of severe limitations.

SOURCE: nLx and lx calculated in Table D-5; SE(ncx) calculated in Table D-3.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-8 Calculation of Age-Specific Caregiving Rates and Standard Errors: 5-Year Age Groupsa

Age (years) Age Distribution of Caregivers (P)b SE (P)b Weighted Number of Caregiversb Population (000s)c Proportion Caregiving ncx SE ncx
All Caregivers to Older Adults with One or More Activity Limitations
20-24 0.022 0.0045 389,830 21,525 0.018 0.0038
25-29 0.017 0.0050 304,841 21,382 0.014 0.0043
30-34 0.022 0.0046 380,769 20,202 0.019 0.0042
35-39 0.039 0.0066 685,411 19,255 0.036 0.0065
40-44 0.055 0.0077 972,874 20,587 0.047 0.0072
45-49 0.108 0.0092 1,913,182 21,989 0.087 0.0092
50-54 0.135 0.0123 2,392,492 21,965 0.109 0.0120
55-59 0.134 0.0091 2,369,438 19,554 0.121 0.0112
60-64 0.141 0.0109 2,493,034 17,430 0.143 0.0142
65-69 0.109 0.0085 1,929,126 12,160 0.159 0.0159
70-74 0.081 0.0081 1,423,617 9,254 0.154 0.0182
75-79 0.067 0.0072 1,192,079 7,088 0.168 0.0208
80-84 0.041 0.0058 716,348 5,719 0.125 0.0196
85+ 0.029 0.0042 509,516 4,957 0.103 0.0163

a See text for formula for calculating Standard Errors.

b SOURCE: 2011 National Study of Caregiving linked to the National Health and Aging Trends Study.

c SOURCE: 2011 Current Population Survey.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-9 Abridged Life Table Calculations, Adults Ages 20 and Older, 2010: 5-Year Age Groups

Age (years) Probability of Dying Between Ages x to x + n Number Surviving to Age x Number Dying Between Ages x to x + n Person-Years Lived Between Ages x to x + n Total Number of Person-Years Lived Above Age x Expectation of Life at Age x
nqx lx ndx nLx Tx ex
All
20-24 0.00432 100,000 432 498,921 5,939,745 59.4
25-29 0.00479 99,568 477 496,649 5,440,824 54.6
30-34 0.00550 99,091 545 494,095 4,944,175 49.9
35-39 0.00691 98,547 681 491,030 4,450,081 45.2
40-44 0.00998 97,865 977 486,885 3,959,051 40.5
45-49 0.01604 96,889 1,555 480,557 3,472,166 35.8
50-54 0.02434 95,334 2,321 470,869 2,991,609 31.4
55-59 0.03511 93,013 3,265 456,904 2,520,739 27.1
60-64 0.04985 89,748 4,474 437,557 2,063,835 23.0
65-69 0.07441 85,275 6,345 410,510 1,626,278 19.1
70-74 0.11232 78,930 8,865 372,485 1,215,768 15.4
75-79 0.17478 70,065 12,246 319,708 843,283 12.0
80-84 0.27438 57,819 15,864 249,432 523,575 9.1
85+ 1.00000 41,954 41,954 274,143 274,143 6.5

SOURCE: Based on National Center for Health Statistics (Arias, 2014).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-10 Calculation of Expected Number of Years and Percentage of Remaining Life Spent Caregiving: 5-Year Age Groups

Age (years) Proportion Caregiving SE Person-Years Caring Total Years Caring from Age x Forward Expected Number of Years Caring from Age x 95% CI Percentage of Remaining Life Caring
ncx SEncx ncx * nLx Tcx ecx ecx – 1.96 SE ecx + 1.96 SE ecx/ex*100
All Caregivers to Older Adults with One or More Activity Limitations
20-24 0.018 0.0038 9,036 512,585 5.1 4.8 5.5 8.6
25-29 0.014 0.0043 7,081 503,549 5.1 4.7 5.4 9.3
30-34 0.019 0.0042 9,313 496,468 5.0 4.7 5.4 10.0
35-39 0.036 0.0065 17,479 487,156 4.9 4.6 5.3 10.9
40-44 0.047 0.0072 23,009 469,677 4.8 4.4 5.1 11.9
45-49 0.087 0.0092 41,812 446,668 4.6 4.3 5.0 12.9
50-54 0.109 0.0120 51,288 404,857 4.2 3.9 4.6 13.5
55-59 0.121 0.0112 55,365 353,568 3.8 3.5 4.1 14.0
60-64 0.143 0.0142 62,584 298,203 3.3 3.0 3.6 14.4
65-69 0.159 0.0159 65,125 235,619 2.8 2.5 3.1 14.5
70-74 0.154 0.0182 57,302 170,493 2.2 1.9 2.4 14.0
75-79 0.168 0.0208 53,769 113,191 1.6 1.4 1.9 13.4
80-84 0.125 0.0196 31,243 59,422 1.0 0.8 1.3 11.3
85+ 0.103 0.0163 28,178 28,178 0.7 0.5 0.9 10.3

SOURCE: Caregiving rates ncx and standard errors SE (ncx) calculated in Table D-8. nLx calculated in Table D-9. Standard errors of ecx calculated in Table D-11.

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE D-11 Calculation of Standard Error of Caregiving Life Expectancy: 5-Year Age Groups

Age (years) nLx^2 * SE(ncx)^2 (column 1) Sum Column 1 From Age x Forward (column 2) V = column 2/lx^2 (column 3) SE = sqrt (column 3)
All Caregivers to Older Adults with One or More Activity Limitations
20-24 3,676,837 327,861,567 0.0328 0.1811
25-29 4,476,599 324,184,730 0.0327 0.1808
30-34 4,272,712 319,708,131 0.0326 0.1804
35-39 10,118,905 315,435,419 0.0325 0.1802
40-44 12,378,426 305,316,514 0.0319 0.1785
45-49 19,448,278 292,938,088 0.0312 0.1767
50-54 32,138,131 273,489,811 0.0301 0.1735
55-59 26,296,162 241,351,680 0.0279 0.1670
60-64 38,806,361 215,055,518 0.0267 0.1634
65-69 42,639,829 176,249,158 0.0242 0.1557
70-74 45,808,760 133,609,329 0.0214 0.1464
75-79 44,136,656 87,800,569 0.0179 0.1337
80-84 23,803,772 43,663,914 0.0131 0.1143
85+ 19,860,141 19,860,141 0.0113 0.1062

SOURCES: nLx and lx calculated in Table D-9; SE(ncx) calculated in Table D-8.

REFERENCES

Arias, E. 2014. United States life tables, 2010. National vital statistics reports 63(7). Hyattsville, MD: National Center for Health Statistics. http://www.cdc.gov/nchs/data/nvsr/nvsr63/nvsr63_07.pdf (accessed October 10, 2015).

Drabek, J., and W. Marton. 2015. Measuring the need for long-term services and supports research brief.http://aspe.hhs.gov/sites/default/files/pdf/110376/MeasLTSSrb.pdf (accessed October 10, 2015).

Imai, K., and S. Soneji. 2007. On the estimation of disability-free life expectancy: Sullivan’s Method and its extension. Journal of the American Statistical Association 102(80): 1199-1211.

Jagger, C., B. Cox, S. Le Roy, and EHEMU (European Health Expectancy Monitoring Unit). 2006. Health expectancy calculation by the Sullivan Method, 3rd ed. EHEMU Technical Report, September 2006. http://www.eurohex.eu/pdf/Sullivan_guide_final_jun2007.pdf.

Kasper, J. D., V. A. Freedman, and B. C. Spillman. 2013a. Classification of persons by dementia status in the National Health and Aging Trends Study. Technical Paper No. 5. http://www.nhats.org (accessed October 10, 2015).

Kasper, J. D., V. A. Freedman, and B. C. Spillman. 2013b. National Study of Caregiving user guide. Baltimore, MD: Johns Hopkins University School of Public Health. http://www.nhats.org (accessed October 10, 2015).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Klein, R. J., S. E. Proctor, M. A. Boudreault, and K. M. Turczyn. 2002. Healthy People 2010 criteria for data suppression, no. 24. http://www.cdc.gov/nchs/data/statnt/statnt24.pdf (accessed October 10, 2015).

National Health and Aging Trends Study. Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947).

National Study of Caregiving. Produced and distributed by www.nhats.org with funding from the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation in cooperation with the National Institute on Aging (grant number NIA U01AG32947).

Stone, R. 2015. Factors affecting the future of family caregiving in the United States, edited by J. Gaugler and R. L. Kane. In Family caregiving in the new normal. Waltham, MA: Elsevier.

Sullivan, D. F. 1971. A single index of mortality and morbidity. HSMHA Health Reports 86:347-354.

U.S. Census Bureau. 2011. Current Population Survey, Annual Social and Economic Supplement. Table 1.http://www.census.gov/population/age/data/2011comp.html (accessed October 10, 2015).

Suggested Citation:"Appendix D: Number of Years and Percentage of Adult Life Spent Caring for an Older Adult." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Next: Appendix E: Methodology: NHATS and NSOC Surveys »
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Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation’s family caregivers provide the lion’s share of long-term care for our older adult population. They are also central to older adults’ access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population.

Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

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