Prevalence and Characteristics of Subjective Cognitive Decline Among Unpaid Caregivers Aged ≥45 Years — 22 States, 2015–2019

Approximately 20% of U.S. adults are unpaid caregivers (caregivers) (1) who provide support to a family member or friend with a health condition or disability. Although there are benefits to caregiving, it can negatively affect caregivers’ physical and mental health (2–4). Much of the assistance caregivers provide, such as administering medications or financial management, relies on cognitive ability, but little is known about caregivers’ cognitive functioning. Subjective cognitive decline (SCD), the self-reported experience of worsening or more frequent confusion or memory loss over the past year (5), could affect caregivers’ risk for adverse health outcomes and affect the quality of care they provide. CDC analyzed SCD among caregivers aged ≥45 years through a cross-sectional analysis of data from 22 states in the 2015−2019 Behavioral Risk Factor Surveillance System (BRFSS). Among adults aged ≥45 years, SCD was reported by 12.6% of caregivers who provided care to a family member or friend with a health condition or disability in the past 30 days compared with 10.2% of noncaregivers (p<0.001). Caregivers with SCD were more likely to be employed, men, aged 45–64 years, and have chronic health conditions than were noncaregivers with SCD. Caregivers with SCD were more likely to report frequent mental distress, a history of depression, and frequent activity limitations than were caregivers without SCD. SCD among caregivers could adversely affect the quality of care provided to care recipients. Understanding caregivers’ cognitive health and the types of care provided is critical to maintaining the health, well-being, and independence of the caregiving dyad. Health care professionals can support patients and their patients’ caregivers by increasing awareness among caregivers of the need to monitor their own health. The health care team can work with caregivers to identify potential treatments and access supports that might help them in their caregiving role and compensate for SCD.*

BRFSS is a cross-sectional, random-digit–dialed, annual telephone survey of noninstitutionalized U.S. adults aged ≥18 years. BRFSS is conducted by state and territorial health departments, and data are weighted to make estimates representative of each state. Combined (landline and mobile) median response rates for 2015−2019 ranged from 45.9% (2017) to 49.9% (2018).^† Among 22 states^§ in which BRFSS respondents were asked both the caregiving and cognitive decline questions in the same survey year during 2015−2019, the most recent year’s data were analyzed for this study.

Respondents were classified as caregivers if they responded affirmatively when asked whether they had provided care to a family member or friend with a health condition or disability in the past 30 days. These respondents were then asked seven more questions about the care recipient and the type and duration of care provided (1). Personal care tasks included administering medications, feeding, dressing, and bathing; household tasks included cleaning, managing money, and preparing meals.^¶ Respondents were classified as experiencing SCD if they responded affirmatively when asked if they had experienced worsening or more frequent confusion or memory loss in the past 12 months.

Weighted, unadjusted prevalence of SCD by caregiver status was estimated among 93,604 community-dwelling respondents aged ≥45 years and among a subgroup of 21,238 (23.0%) caregivers, by sociodemographic, health-related, and caregiving-related characteristics. The distribution of these characteristics was estimated among caregivers by SCD status. Complex survey data methods were used to estimate weighted percentages and corresponding 95% CIs using SAS-callable SUDAAN survey procedures (version 9.4; SAS Institute). T-tests were used to determine statistically significant differences between caregivers and noncaregivers with SCD, and modified Rao-Scott chi-square tests were used to estimate statistical differences between proportions of caregivers with and without SCD for each selected characteristic. P-values <0.05 were considered statistically significant for both tests. The relative standard error for all estimates was <30%. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy.**

During 2015–2019, 23.0% (95% CI = 22.5%–23.6%) of U.S. adults (approximately 13 million) aged ≥45 years in 22 states were caregivers. Among caregivers, the overall prevalence of SCD was 12.6% and varied by state, ranging from 9.8% (New Jersey) to 17.3% (Louisiana) (Table 1). In comparison, the prevalence of SCD among noncaregivers was 10.2% (p<0.001) (Table 2). Prevalence of SCD did not differ between caregivers and noncaregivers by history of depression, number of days physical or mental health was not good in the past 30 days, or number of days health prevented regular activities in the past 30 days. Compared with noncaregivers, SCD prevalence among caregivers was higher among persons aged 45–64 years, men, non-Hispanic White persons, employed persons, persons who reported any chronic condition, and persons who reported good, very good, or excellent health.

The distribution of caregiver characteristics varied by SCD status (Table 3). Compared with caregivers without SCD, those with SCD were more likely to have at least one chronic condition,^†† a history of depression, report fair or poor health, report ≥14 days of poor physical health in the past 30 days, report ≥14 days of poor mental health in the past 30 days, and report ≥14 days that health prevented regular activities in the past 30 days. Household status, duration or type of care provided, or the care recipient having a diagnosis of Alzheimer’s disease, dementia, or other cognitive impairment disorder did not differ by SCD status.

Corresponding author: Eva M. Jeffers, EJeffers@cdc.gov, 404-498-4309.

¹Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC; ²Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee; ³Department of Health and Exercise Science, Appalachian State University, Boone, North Carolina; ⁴Department of Public Health and Center for Long-Term Care, New York Medical College, Valhalla, New York; ⁵CyberData Technologies, Inc., Herndon, Virginia.

References

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Abbreviation: SCD = subjective cognitive decline.
* SCD was defined as the self-reported experience of worsening confusion or memory loss in the past year.
^† Caregiving was defined as providing care to a family member or friend with a health condition or disability in the past 30 days.
^§ The following 22 U.S. states that included both caregiving and SCD modules in the same survey year during 2015–2019 are included (most recent year used): Alabama (2015), Florida (2015), Hawaii (2017), Illinois (2015), Iowa (2015), Louisiana (2015), Maryland (2019), Mississippi (2015), Missouri (2016), Montana (2016), Nebraska (2015), New Jersey (2018), New York (2019), Oregon (2019), South Carolina (2015), Tennessee (2019), Texas (2019), Utah (2019), Virginia (2019), West Virginia (2015), Wisconsin (2015), and Wyoming (2015).
^¶ Estimates are weighted to each state’s adult population.

Abbreviation: SCD = subjective cognitive decline.
* SCD was defined as the self-reported experience of worsening confusion or memory loss in the past year.
^† Caregiving was defined as providing care to a family member or friend with a health condition or disability in the past 30 days.
^§ The following 22 U.S. states that included both caregiving and SCD modules in the same survey year during 2015–2019 are included (most recent year used): Alabama (2015), Florida (2015), Hawaii (2017), Illinois (2015), Iowa (2015), Louisiana (2015), Maryland (2019), Mississippi (2015), Missouri (2016), Montana (2016), Nebraska (2015), New Jersey (2018), New York (2019), Oregon (2019), South Carolina (2015), Tennessee (2019), Texas (2019), Utah (2019), Virginia (2019), West Virginia (2015), Wisconsin (2015), and Wyoming (2015).
^¶ Categories might not sum to the sample total because of missing responses.
** Estimates are weighted to each state’s adult population.
^†† T-tests were used to determine statistically significant differences between caregivers and noncaregivers with SCD for each level of selected characteristics at p<0.05.
^§§ Asian/Pacific Islander, American Indian/Alaska Native, and Other or multiracial non-Hispanic persons were combined into one group because of small sample sizes.
^¶¶ Homemaker, student, or retired.
*** Any chronic condition was determined by an affirmative response to the question, “Has a doctor or other health professional ever told you that you had any of the following? For each, tell me Yes, No, or You’re Not Sure: asthma (current); heart attack, angina, or coronary heart disease; a stroke; cancer other than skin cancer; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis; some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia; kidney disease, not including kidney stones, bladder infections, or incontinence; or diabetes, not including gestational, borderline, or prediabetes?”

Abbreviation: SCD = subjective cognitive decline.
* Caregiving was defined as providing care to a family member or friend with a health condition or disability in the past 30 days.
^† SCD was defined as the self-reported experience of worsening confusion or memory loss in the past year.
^§ The following 22 U.S. states that included both caregiving and SCD modules in the same survey year during 2015–2019 are included (most recent year used): Alabama (2015), Florida (2015), Hawaii (2017), Illinois (2015), Iowa (2015), Louisiana (2015), Maryland (2019), Mississippi (2015), Missouri (2016), Montana (2016), Nebraska (2015), New Jersey (2018), New York (2019), Oregon (2019), South Carolina (2015), Tennessee (2019), Texas (2019), Utah (2019), Virginia (2019), West Virginia (2015), Wisconsin (2015), and Wyoming (2015).
^¶ Estimates are weighted to each state’s adult population.
** P-values from chi-square analyses measure the association between proportions, with modified Rao-Scott chi-square tests.
^†† Any chronic condition was determined by an affirmative response to the question, “Has a doctor or other health professional ever told you that you had any of the following? For each, tell me Yes, No, or You’re Not Sure: asthma (current); heart attack, angina, or coronary heart disease; a stroke; cancer other than skin cancer; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis; some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia; kidney disease, not including kidney stones, bladder infections, or incontinence; or diabetes, not including gestational, borderline, or prediabetes?”
^§§ Personal care tasks were defined as administering medications, feeding, dressing, or bathing.
^¶¶ Household tasks were defined as cleaning, managing money, or preparing meals.