Editor’s Note: For more on informal caregivers and related issues, see Bridging Troubled Waters: Family Caregivers, Transitions, And Long-Term Care and other articles in the January issue of Health Affairs, titled Advancing Long-Term Services & Supports.
The primary focus of this analysis is to examine trends and key findings for caregivers of persons 50+, with an emphasis on the older caregivers. We use the National Alliance for Caregiving (NAC) and AARP’s national surveys of informal caregivers conducted in 2009 and make selected comparisons with the 1997 and 2004 NAC/AARP surveys. Although each survey consists of a unique sample, there are questions that are consistent across the three surveys and an operational definition of “caregiver” that is used in the screening to ensure that respondents are representative of the same caregiving population.
The 2009 NAC/AARP study reveals a few trends that are both consistent with the caregiving literature and a departure from this literature. We observe an increasing number of men included in the respondent groups across the three studies, a trend that is consistent with the literature. Despite the increase of men who report that they are providing care, the majority of informal care continues to be the work of women.
The percentage of caregivers caring for individuals over 85 years of age has increased across all three surveys. Parent care continues to be the primary caregiving situation for mid-life caregivers with 70% of the caregivers between the ages of 50 and 64. While caring for a spouse continues to be the most commonly reported care situation for those over 75 years of age, the 2009 study suggests that a good number of people in this age group are involved in caring for a friend or non-relative (20%), a parent (20%) or a sibling (18%). This finding is somewhat surprising and is likely a factor of older adults relying on peers for the help they need.
The levels of “burden of care” — a proxy for care intensity based on hours and type of care provided — observed for older caregivers are higher than that for younger caregivers and consistent with what we would expect to see for older individuals who are providing intense care to another person. It is striking to see, however, that the older caregivers are the least likely to have another unpaid person helping them. The older caregivers, however, are reporting respite service and transportation service use more frequently than younger caregivers.
A Detailed Look At The Survey Results
Table I displays selected demographic and care situation characteristics for the three sets of respondents. The average age of the 2009 respondents was 50 years, older than 1997 and 2004 respondents; average age of 46 and 48 respectively. Although the majority of respondents were women, about one-third of the respondents were men in 2009. This is consistent with other studies that suggest the proportion of male caregivers for older adults was increasing.
The percentage of respondents who report being employed while providing care have remained fairly stable across all three studies – ranging from 73% in 2004 to 77% in 1997. Similarly, the percentage of those reporting that they lived with the person they were helping was, relatively stable ranging from a high of 22% in 2004 to a low of 20% in 2009. Average care hours tended to decrease across the three surveys, with respondents reporting an average of 23 hours a week in 1997, 22 hours in 2004, and 19 hours a week in 2009.
What has changed over the course of these three surveys is the proportion caring for someone over the age of 85, increasing from approximately a quarter of the care recipients to one-third.
Table I: Characteristics of Respondent Caregivers and Care Situation
|1997 (n=1509)||2004 (n=1022)||2009(n=1437)|
|Employed While Caregiving||77%||73%||74%|
|AverageDuration of Care||5 years||4 years||4 years|
|Number Hours of Care Weekly||23 hours||22 hours||19 hours|
|Co-resident with care recipient||21%||22%||20%|
Table II shows the percentage of women within each of the age categories. Although women continue to dominate the caregiving population, there has been an increase in male caregivers in the past two decades. Among the caregivers over the age of 65, nearly a third of the caregivers are men.
Table II: Percentage of Caregivers Who Are Women, by Age Group
|Caregiver Age||1997 Survey||2004 Survey||2009 Survey|
Table III illustrates the employment status of caregivers broken down by age across the three studies. The data suggests that the pattern of employment across all age groups and the three studies have remained stable. Approximately one-third of the caregivers between 65 and 74 years of age reported being employed by providing care; and about one-fifth of caregivers 75 years and older reported being employed.
Table III: Percentage of Age Category Employed by Survey Year
The work effects of older caregivers were modest when compared to the self-reported work effects of younger caregivers. The majority of employed caregivers under the age of 65 reported having to leave work early or come in late as a result of caregiving, with the largest group reporting this effect being those between the ages of 50-64 (53%). About 50% of the caregivers between the ages of 18-49 reported these work effects with a bit more than a third (34%) of those over 65 reporting the same.
Taking a leave of absence to provide care has negative effects for the caregiver as her or his career is disrupted and lifetime earnings diminished if, as is the usual case, the leave is unpaid. Table IV compares the ages of those reporting a leave of absence to provide care across the three studies. While we might expect caregivers who are 65 years or older to leave the workplace rather than take a leave of absence, we observe that, in the 2009 survey there was an increase in the percentage of caregivers 65+ reporting they were or had taken a leave in order to provide care.
Table IV: Percentage of Age Category Reporting Leave of Absence by Survey Year
Level of Burden of Care
The level of “burden of care” has been calculated since the 1997 survey using a scale from 1 to 5 based on the number of hours of care provided on a weekly basis, the number of Activities of Daily Living (ADL) support provided by the caregiver and the involvement of caregivers in helping with the Instrumental Activities of Daily Living (IADL). Table V displays the level of burden for our selected age groups for the study conducted in 2009.
The data suggest that the caregivers age 65 and over are the most likely to have the highest burden of care. Older caregivers are disproportionately represented in highest level of “burden of care” – Level 5. In contrast, only 8% of caregivers between the age of 18-49 were included in this group. The weekly hours of care provided increases with the age of respondents: caregivers 18-49 report an average of 14 hours a week, 50-64 report 16 hours , 65-74 report 19 hours a week and those 75+ report 31 hours a week, a statistical difference between age groups.
To better understand this pattern of care levels, we examine the care recipient relationships, the use of formal services and the availability of other informal caregivers who could provide help. Table VI displays the key care recipient relationships by age group. At first glance it might appear that the burden levels observed for the old-old respondents were a function of spousal caregiving – a care situation which carries the most risk for adverse outcomes related to health and work effects. In the 2009 sample, 31% of those over 75 were caring for a spouse, including partners or companions. This contrasts with mid-life caregivers (50-64) among whom only 5% reported spousal care and most (70%) were providing help to parents.
More interesting was the fact that 20% of the old-old caregivers were helping a friend and 16% were helping a sibling. Research suggests that about 15% of the caregivers in the US are providing help to a friend rather than a relative. The fact that we see a higher percentage among the old-old helping a friend, and an almost equal number caring for a sibling is a surprising finding and one that bears further study.
The use of formal services increased with the age of the caregiver as shown in Table VII. In the 2009 survey, the percentage of respondents reporting use of a respite service was only 5% among those caregivers who were 18-49, 13% among the 50-64 year olds, 14% among 65-74 year olds and 23% among those 75+. Similarly, the use of a transportation service for the care recipient increased with age from 25% of those between 18 and 49 reporting this use, 33% between 50-64, 30% aged 65-74 and 43% among those 75+.
Levels of burden are influenced by both the availability of formal services and other friends or relatives who provide help and support to the caregiver. Table VIII displays the extent to which respondents across the age categories report that they received no help from an unpaid, informal source.
Older adults, those over 75 years of age, are the most likely to report they have no help from a friend, relative or other informal source in their caregiving responsibilities. Over the three study periods, it was the older caregivers – 65 to 74 years olds and those over 75+ reporting they were not receiving help. The pattern among the 2009 respondents shows an increase in those between the ages of 65 and 74 reporting no help and a slight increase in the younger caregivers who were going it alone. The large percentage of 75+ caregivers reporting no informal help in 2004 is likely an artifact of the sample and the small sample size for the 75+ respondents (46 in 2004, 69 in 2009).
|Caregiver Age||1997 Survey||2004 Survey||2009 Survey|
|18-49 years||930 62%||550 54%||646 45%|
|50 – 64||392 25%||330 32%||585 41%|
|65 – 74||131 9%||96 9%||137 10%|
|75+||41 3%||46 5%||69 5%|
Policy makers and health providers may benefit from understanding that caregiving is a dynamic activity that is ongoing across the lifespan and, depending on the age and health status of the caregiver, has important implications for the overall well-being of both the care recipient and the care provider. Much has been written about family caregivers but too often we think of them in a stereotypical way – middle-aged, working women juggling competing responsibilities. Age, gender and the complexity of the care situation itself combine to create a heterogeneous array of policy and practice challenges that is not amenable to a simple solution or approach.
These caregivers are the front line of support for millions of Americans with chronic care needs and the default provider of care when affordable and appropriate care and services are unavailable. In our aging society, it is wise to remember that this default provider role can be difficult if not impossible for an old-old caregiver and we are likely to see an increasing numbers of old caregivers in the future.