Informal Caregiving for Older Americans: An Analysis of the 2011 National Study of Caregiving

Office of the Assistant Secretary for Planning and Evaluation

The Office of the Assistant Secretary for Planning and Evaluation (ASPE) is the principal advisor to the Secretary of the Department of Health and Human Services (HHS) on policy development issues, and is responsible for major activities in the areas of legislative and budget development, strategic planning, policy research and evaluation, and economic analysis.

ASPE develops or reviews issues from the viewpoint of the Secretary, providing a perspective that is broader in scope than the specific focus of the various operating agencies. ASPE also works closely with the HHS operating agencies. It assists these agencies in developing policies, and planning policy research, evaluation and data collection within broad HHS and administration initiatives. ASPE often serves a coordinating role for crosscutting policy and administrative activities.

ASPE plans and conducts evaluations and research--both in-house and through support of projects by external researchers--of current and proposed programs and topics of particular interest to the Secretary, the Administration and the Congress.

Office of Disability, Aging and Long-Term Care Policy

The Office of Disability, Aging and Long-Term Care Policy (DALTCP), within ASPE, is responsible for the development, coordination, analysis, research and evaluation of HHS policies and programs which support the independence, health and long-term care of persons with disabilities--children, working aging adults, and older persons. DALTCP is also responsible for policy coordination and research to promote the economic and social well-being of the elderly.

In particular, DALTCP addresses policies concerning: nursing home and community-based services, informal caregiving, the integration of acute and long-term care, Medicare post-acute services and home care, managed care for people with disabilities, long-term rehabilitation services, children’s disability, and linkages between employment and health policies. These activities are carried out through policy planning, policy and program analysis, regulatory reviews, formulation of legislative proposals, policy research, evaluation and data planning.

This report was prepared under contract #HHSP23337003T between HHS’s ASPE/DALTCP and the Urban Institute. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/office_specific/daltcp.cfm or contact the ASPE Project Officers, Helen Lamont and John Drabek, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. Their e-mail addresses are: Helen.Lamont@hhs.gov and John.Drabek@hhs.gov.

The following acronyms are mentioned in this report.

Executive Summary

This report examines the role and experiences of informal caregivers for the older population, using a new resource, the National Survey of Caregiving (NSOC). The NSOC is unique in interviewing all informal caregivers for a nationally representative sample of persons age 65 or older receiving assistance with daily activities. NSOC respondents report on types of assistance they provide beyond traditional household (instrumental activities of daily living) and self-care or mobility (activities of daily living) tasks. These tasks range from assisting with transportation to help with health or medical care, including such things as injections or ostomy care. Thus, estimates capture the full range of supports informal caregivers provide and contributions they make in areas other than explicit long-term care. Information collected about positive and negative aspects of caregiving, health, and indicators of subjective well-being allows examination of how gains and burdens differ by caregiver and care-recipient characteristics and by the intensity of care provided.

In 2011, 18 million informal caregivers provided 1.3 billion hours of care monthly to the more than 9 million older adults receiving informal assistance. Consistent with prior studies, family members are the main source of informal care: Spouses are about 20% of caregivers and provide nearly one-third of the aggregate hours, and adult children provide nearly half of aggregate hours. Hours are concentrated among caregivers of high need recipients--the 31% assisting recipients receiving help with at least three self-care or mobility tasks and the 33% assisting persons with probable dementia, account for nearly half and 40% of aggregate hours, respectively. Informal caregivers provide an average 75 hours per month. Average monthly hours provided are significantly more for spouses (110) and other caregivers living with the care-recipient (114) and those assisting higher need recipients with self-care or mobility (84).

Most caregivers (68%) report substantial positive consequences of caregiving and few (10%) report substantial negative consequences. High levels of both positive and negative aspects of caregiving are associated with greater engagement in caregiving. The most common negative aspects are exhaustion, having too much to do, and too little time for themselves. Not surprisingly, substantial negative consequences are most common among caregivers who provide high levels of care, those who assist individuals with probable dementia, and those who have health problems themselves.

Our findings substantiate that beyond supportive care, informal caregivers commonly provide assistance with a range of medically-oriented tasks as well as interacting with providers and helping older recipients navigate the health system. Finding ways to support informal caregivers in their traditional roles as well as their expanded role in providing and managing health care for the older population continues to be an important policy goal, particularly as the locus of care continues to shift from nursing homes to community settings. Both the Administration for Community Living (ACL) and the National Plan to Address Alzheimer’s Disease recognize the need to support informal caregivers as an essential part of the workforce for maintaining the well-being and health of the older population. The NSOC can contribute to the knowledge base for these efforts.

Introduction

Informal caregiving is the foundation of long-term care for the older population in the United States. At least 90% of persons receiving help with daily activities receive some informal care, and about two-thirds receive only informal care (Freedman et al. 2013; Kaye, Harrington & LaPlante 2010; Spillman 2009; Spillman & Black 2005). Reliance on informal care is even higher among those who have spouses or adult children, who are the most common source of informal care. Previous research has found that collectively, informal caregivers to older Americans living in non-institutional settings provide 75%-80% of total care hours, indicating their paramount importance in the long-term care system and the substantial amount of care that would have to be provided otherwise in their absence (Spillman 2009; Johnson & Wiener 2006).

In recognition of their critical role in care for the older population with disabilities, greater emphasis has been placed in recent years on understanding how best to support informal caregivers’ efforts, notably through Administration for Community Living (ACL) initiatives, such as the National Family Caregiving Support Program and Aging and Disability Resource Centers, and more recently through the U.S. Department of Health and Human Services (HHS) National Plan to Address Alzheimer’s Disease.

Research has shown that the financial, emotional, and physical demands of caregiving can be high and that the resulting stress or burden can threaten the ability of caregivers to maintain their efforts. Kasper et al. (1994) found that perspectives on caregiving, including stress, were factors in the decision to end caregiving. Spillman & Long (2009) found that having a highly stressed caregiver was associated with a greater risk of long-stay nursing home entry over a two-year follow-up period and that financial and physical strain were important predictors of perceived high stress from caregiving. A substantial literature has examined caregiving-related stress, burden, and their consequences, especially among caregivers to persons with cognitive impairment (Pinquart & Sorensen 2003, 2007).

In this report, we provide new estimates from the National Survey of Caregiving (NSOC), a nationally representative survey of informal caregivers to the older population, supported by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within HHS. The NSOC was a supplement to the 2011 National Health and Aging Trends Study (NHATS), a new National Institute on Aging-supported annual survey of a nationally representative sample of Medicare beneficiaries age 65 or older. The NHATS is designed to measure both trends and trajectories of health and functioning and the consequences for the older population, their families, and society. The NSOC is particularly innovative in that it attempts to interview all informal caregivers for a well-defined study population of persons receiving informal help with daily activities from family members or friends.

We address the following questions:

• How many informal caregivers provided help with basic and instrumental activities of daily living (IADLs) to elders with disabilities and how many hours of help did they provide on a monthly basis in 2011?
• How does the type and amount of care provided vary by caregiver characteristics (gender, age, relationship to care-recipient, employment status, and health status)?
• What is the distribution and balance of positive and negative aspects of caregiving by caregiver and care-recipient characteristics?
• What roles do different caregivers play, and how do these different roles and caregiver health and participation in valued activities relate to well-being and negative aspects of caregiving?

Background

Like the predecessor surveys, the National Long-Term Care Survey (NLTCS) and its companion Informal Caregiving Supplement (ICS), the NHATS and NSOC are unique in providing nationally representative information reported by informal caregivers for a well-characterized population-based sample of older adults. In addition, the baseline NSOC has the distinction of interviewing the entire informal caregiver network, rather than only the “primary caregiver” interviewed in the ICS. These unique characteristics of the combined NHATS and NSOC data allow a more comprehensive understanding of the context, scope of activities, and implications of informal caregiving for the older population than is possible with surveys that rely solely on either care-recipient-reported or caregiver-reported information. The NSOC design draws on a substantial literature on the scope, nature, and consequences of informal caregiving.

Despite variability in the estimated numbers of family caregivers to older adults across national surveys (Giovannetti & Wolff 2010), there is remarkable consistency that informal caregivers of older adults are predominantly middle-aged daughters and spouses (Wolff & Kasper 2006; Johnson & Wiener 2006; Spillman & Black 2005; Spillman & Pezzin 2000; Stone & Kemper 1989). Although there is growing recognition of the unique challenges posed by distance caregiving (Bevan et al. 2012), evidence suggests caregivers and recipients typically live together or within close proximity (Wolff & Kasper 2006; Johnson & Wiener 2006; Spillman & Pezzin 2000). Approximately half of informal caregivers work for pay, but employment rates vary widely by relationship and are generally higher among adult child (versus spouse) caregivers, (Pinquart & Sorensen 2011; Wolff & Kasper 2006) and among caregivers who provide a less intensive level of supportive assistance as part of a larger helping network (Johnson & Wiener 2006; Spillman & Pezzin 2000).

Informal caregivers provide assistance with diverse health-related activities that span daily personal care activities such as eating and bathing, household management activities such as shopping and meal preparation, self-management activities such as managing prescribed medications, navigating health system demands such as attending medical encounters, and financial activities such as handling insurance and bills (IOM 2008). The emphasis on informal caregiving historically has focused on assistance with personal care and household activities (Katz et al. 1963; Lawton & Brody 1969; Stone, Cafferata & Sangl 1987). However, recent emerging evidence demonstrates that family members also are often involved in managing complex health care activities at home (Reinhard, Levine & Samis 2012; IOM 2008; Donelan et al. 2002), as well as in directly navigating the demands of health care system and transitions between settings of care (Levine et al. 2010; Wolff & Roter 2008).

The caregiving experience is shaped by multiple diverse factors that may affect reactions, such as perception of burden or rewards from caregiving. The balance of positive and negative aspects may affect the likelihood of adverse outcomes such as cessation of caregiving or institutionalization of the care-recipient. Factors affecting the experience of caregivers include the nature and severity of older adults’ underlying disability and specific health conditions (Pinquart & Sorensen 2007; Roth et al. 2009), the types of caregiving tasks, the intensity of caregiving (Pearlin et al. 1990; Zarit et al. 2010), the nature of the relationship between the informal caregiver and the care-recipient (Pearlin et al. 1990; Pinquart & Sorensen 2011), and competing work and child care responsibilities (Pearlin et al. 1990; Spillman & Pezzin 2000). Informal caregivers who regularly provide “high intensity” help in terms of greater hours of care and assistance with activities of daily living (ADLs) are more likely to experience burden and strain (Chappell & Reid 2002). Other family caregivers experience elevated stress (Kiecolt-Glaser et al. 2003; Vitaliano, Zhang & Scanlan 2003), physical or psychological illness (Emanuel et al. 2000; Pinquart & Sorensen 2003; Roth et al. 2009), or economic impacts, including cessation of work (Schulz et al. 2003; Covinsky et al. 2001). On the other hand, many informal caregivers cope well and derive personal reward from their role (Freedman et al. 2014; Beach et al. 2000; Kramer 1997; Stuckey, Neundorfer & Smyth 1996).

Data, Measures, and Methods

The first round of NHATS took place in May 2011 through October 2011 with a national sample of Medicare beneficiaries drawn from the Medicare enrollment file (Montaquila et al. 2012a). The NHATS represents the full Medicare population age 65 or older. Facility interviews are conducted with staff for persons living in nursing homes. For persons living outside of nursing homes, sample person interviews covering a wide range of information on functioning, health, and other characteristics are conducted, and facility interviews also are conducted for those living in other supportive care settings, broadly defined.

NHATS collects self-reported information on functioning using a validated protocol (Freedman et al. 2011) that ascertains whether and how activities were performed in the month prior to interview. Activities include self-care and mobility, household tasks, and other common tasks, such as transportation assistance or being accompanied to doctor appointments. Respondents reporting assistance were asked to identify all persons providing help with each activity, and those eligible for the NSOC also were asked to provide contact information for eligible caregivers.

NSOC eligibility was a two-stage process. First, NHATS respondents were eligible if they reported help with mobility or self-care, help with household activities specifically for health/functioning-related reasons, or lived in residential care settings. Second, caregivers were eligible if they were a family member or were an unpaid caregiver who was not a relative and helped with any activity identified during the NHATS interview including not only mobility, self-care, and household activities but also transportation and medical care activities (e.g., going to the doctor, helping with medications). NSOC interviews took place between May 2011 and November 2011.

Sample

The NSOC sample was drawn from 4935 eligible informal caregivers to 2423 eligible NHATS respondents. (For a small number of NHATS respondents identifying more than five eligible caregivers, five caregivers were selected randomly.) Eligible NHATS respondents refused to provide contact information for 1573 eligible caregivers, and of the remaining 3362 caregivers with contact information, 1355 could not be located or refused to respond. The first stage (NHATS) response rate was 68%, and the second stage (caregiver) response rate was 60% (Kasper, Freedman & Spillman 2013). For a “primary caregiver” defined by the number of hours of care provided, the corresponding rates were 73% and 67%. The final NSOC sample consists of 2007 responding caregivers to 1369 NHATS respondents. Sample weights developed for the NSOC take into account differential probabilities of selection and non-response at both the NHATS sample person and caregiver level (Kasper et al. 2013a). We excluded 11 caregivers who had helped within the year prior to interview, but not within the last month, for a final analysis sample of 1996 caregivers.

Analysis Measures

Measures used in this report include both care-recipient characteristics drawn from the NHATS and caregiver characteristics and experience drawn from the NSOC.

Care-Recipient Measures

The care-recipient measures used are a hierarchical assistance level measure developed and further described in Freedman & Spillman (2013), a dementia measure developed and described in Kasper et al. (2013b, 2014), and an indicator that the NHATS respondent is living in a supportive care setting other than a nursing home.

As noted, only NHATS respondents reporting assistance in the last month with self-care or mobility activities, help with household activities for reasons related to health or functioning, or living in supportive care settings are eligible to have informal caregivers selected for the NSOC. Self-care activities include bathing, dressing, eating, and toileting. Mobility-related activities include getting out of bed, getting around inside one’s home or building, and leaving one’s home or building. Taken together, self-care and mobility activities correspond to ADLs. Household activities include laundry, hot meals, shopping for personal items, paying bills/banking, handling medications, corresponding to IADLs. These activities were grouped into a three-category hierarchical measure identifying NHATS respondents as receiving assistance only with household activities, receiving assistance with 1-2 self-care or mobility activities, or receiving assistance with 3+ self-care or mobility activities.

The dementia measure used also is a three-category measure classifying NHATS respondents as having probable dementia, possible dementia, or no dementia based on: (1) a report that a doctor told the sample person he/she had dementia or Alzheimer’s disease; (2) a score indicating probable dementia on a screening instrument (the AD8; Galvin 2005, 2006) administered to all proxy respondents; and (3) results from cognitive tests that evaluate memory, orientation and executive function (Kasper et al. 2013).

Informal Caregiver Measures

NSOC gathered detailed information about each informal caregiver’s caregiving experience, caregiving support, and demographic, socioeconomic, and family characteristics. In this report, we focus primarily on the type and amount of help provided in the last month, work and family situation, positive and negative aspects of caregiving (i.e., gains from and burdens of caregiving activities), physical and mental health (including symptoms and impairments that limited their activities), participation in valued activities and whether caregiving limited participation, and subjective well-being.

Type and Amount of Help. Each NSOC respondent reported the total hours of care they provided in the month prior to interview and the proportion devoted to self-care or mobility assistance. In this report, we focus only on the total hours of care each caregiver-reported. NSOC respondents reported whether they helped with activities in five domains of care:

• self-care and mobility activities;
• household activities;
• ransportation;
• health or medical care activities; and
• interactions relating to the health care system and providers.

In addition to examining whether each caregiver assisted with individual tasks, we constructed indicators of whether each caregiver assisted with any task in each domain, measures of engagement and specialization, and a hierarchical measure of the intensity of caregiving.

We used two measures to characterize the engagement of each caregiver in the recipient’s care. The first measure of engagement and the most common in the literature is whether the caregiver assisted with activities in the first domain, self-care or mobility activities, which are associated both with greater personal contact and with greater dependency. This measure is used throughout the report. The second measure differentiates caregivers who help with tasks in all domains in which the recipient receives help from those who specialize in a subset of activities. To construct this measure, we compared the specific tasks with which each caregiver helped and the full array of tasks with which the recipient received help from any network member. Using this information, we constructed an indicator of whether each caregiver provided assistance across all domains in which the care-recipient received help (not specializing), or only a subset of domains (specializing).

Finally, we used the monthly hours of care provided as a measure of caregiving intensity, to examine the relationship between caregiving intensity and subjective well-being and burden.

Work and Family. We examine each caregiver’s age, relationship to the care-recipient, gender, and whether they worked for pay. For employed caregivers, we also examine hours worked in the last week. For those who were employed but did not work in the last week, hours were assessed for the most recent week when they did work. For caregivers other than spouses, we also examined whether the caregiver lived with the care-recipient, marital status, whether the caregiver had children under age 18, and employment and hours worked.

Positive and Negative Aspects of Caregiving. The primary measures used to characterize positive and negative aspects of caregiving draw on four items assessing perceived gains from caregiving and four items assessing perceived negative aspects of caregiving (Pearlin et al. 1990, Lawton et al. 1989). Each item has three response categories: very much, somewhat, or not so much. Both sets of questions were preceded by a neutral introduction in which the interviewer asked the respondent to listen to the statements and “answer whether this describes your situation…”. Values were rescaled so that each item was valued from 0 (not so much) to 2 (very much). Factor analysis indicated that the two sets of items represented two factors, one positive with loadings of 0.52 or higher (alpha=0.70) and the other negative with loadings of 0.58 or higher (alpha=0.75). Each set of items was then combined to create positive and negative scales valued 0-8. We also examined three items in which respondents were asked where they experienced financial, emotional, and physical “difficulty,” and if so, to rate the level of difficulty of each type on a scale of 1-5. Only 94 (<5%) of the 1996 respondents in the analysis sample was missing any of the 11 items. Missing values were imputed separately for positive, negative, and difficulty items using a vector approach that matched donors and recipients by residential setting, the reported values for the vector of positive (negative, or difficulty) items, relationship to care-recipient, gender, and age. Donors were respondents with the respective vectors fully reported.

Physical and Mental Health. To characterize the health of informal caregivers, we drew on self-reported health; two scales measuring depression and anxiety, respectively; sleep problems; and severity of symptoms or impairments. Depression and anxiety scales were created by combining two questions about the frequency of current symptoms of depression and two about generalized anxiety and rescaling the result from 2-8 to 0-6. For each scale, a cut point of 3 was used (Kroenke et al. 2009; Lowe et al. 2009). Sleep problems were assessed as the frequency of difficulty of falling back to sleep. Severity of symptoms or impairments were assessed as the frequency with which pain, upper or lower body weakness, low energy or exhaustion, or breathing problems limited activities.

Participation and Well-Being. We also constructed measures of restricted participation in valued activities because of caregiving and subjective well-being. We measured participation restriction using four items about visiting in person with friends or family; attending religious services; participating in clubs, classes, or other organized activities; and going out for enjoyment in the month prior to interview. We constructed a count of the number of activity restrictions, based on the caregiver’s rating the activity as somewhat or very important and reporting that caregiving ever prevented participation in the activity in the last month. For subjective well-being, we created a score for each caregiver from four items reflecting positive and negative emotions (frequency from every day to never in the last month of feeling cheerful, bored, full of life, upset) and three reflecting self-realization (extent of disagreement with statements about purpose in life, self-acceptance, and environmental mastery). Factor analysis confirmed that these items formed one factor with loadings 0.74 or higher (alpha=0.92). Only 62 respondents (3% of the analysis sample) were missing any of the seven items. Values were imputed using the vector approach described above.

Methods

For all estimates, we use the analytic weights that take into account differential probabilities of selection and non-response at the NHATS sample person and caregiver level (Kasper et al. 2013a) and statistical software that adjusts standard errors for survey design.

Profile of Informal Caregivers and Hours of CARE Provided

In 2011, about 18 million informal caregivers provided 1.3 billion hours of care on a monthly basis (Table 1) to more than 9 million recipients age 65 or older (Freedman & Spillman 2013). About one in five informal caregivers were spouses of care-recipients, 29.3% were daughters, 18.3% were sons, and 22.3% were other relatives, about half of whom were sons-in-law or daughters-in-law or grandchildren. Fewer than 10% were non-relatives. Spouses provided a disproportionately high 31.1% of aggregate hours, reflecting in part that nearly half of spouses were the sole informal caregiver (not shown). Daughters provided about 30% of aggregate monthly hours, while sons provided about half that proportion, a somewhat smaller proportion of hours than provided by other relatives. Nearly 20% of daughters and about 12% of sons, other relatives, and non-relatives were the only informal caregiver (not shown).

TABLE 1. Number of Informal Caregivers and Hours of Help Provided in the Last Month to Recipients Age 65 or Older Living Outside Nursing Homes, 2011