Fascinating Facts on Family Caregivers: Highlights from Caregiving in the US 2015

If you follow aging and caregiving, then you’ve probably already heard about the major new caregiving report that was released last month: “Caregiving in the US 2015,”a joint effort from the National Alliance for Caregiving and AARP. The study was funded by AARP, Archstone Foundation, Eli Lilly, Home Instead Senior Care, MetLife Foundation, Pfizer, UnitedHealthcare, and the Family Support Research and Training Center in conjunction with the University of Illinois at Chicago.

Strangely, this report seems to have been hardly covered by the major newspapers. I say this is strange because the findings are incredibly important and should be part of the national discourse, instead of only being covered by aging and caregiving wonks.

After all, everyone knows someone who’s struggling to help an aging spouse or parent. This nationally representative survey found that 18% of respondents were caregivers. Of those, most (79%) were helping an older person, as you can from this excerpt of the executive summary:


Caregiving prevalence & basics, from page 9 of the executive summary

The report also later notes that nearly half of caregivers provide care to someone age 75 years or older.

For this survey, caregiving for an adult was defined as providing “unpaid care to a relative or friend 18 years or older to help them take care of themselves.” (For child care recipients, the survey sought to identify people providing care due to “medical, behavioral, or other condition or disability.”)

Highlights from the executive summary

If you are involved in aging, caregiving, or even healthcare, I would strongly encourage you to review the report’s executive summary. It is chock full of fascinating data, which I’ll summarize below.You should also consider signing up for the related webinar, which will be on July 15th from 2-3p EST. Sign up here.

Older caregivers have a high care burden. The survey found that nearly 1 in 10 caregivers is aged 75 or older. They noted that such older caregivers — most of whom care for a spouse — tend to put in a lot of hours (34/wk on average), often are not enlisting paid help, and often have been providing care already for 5.6 years. This group reported being very involved in communicating with health professionals, and said they want more information about making end-of-life decisions.

Many caregivers have been in the their role for years. The survey found that caregivers had been in their role for an average of 4 years.

Many care recipients live in their own home. The report found that 48% of care recipients were living in their own home. Another 35% lived in the caregiver’s home. The report found that only 3% lived in assisted living and another 3% in independent living.

Most care recipients have a long-term physical condition or a memory problem. The survey repondents reported that 59% of carees have a long-term physical condition, 35% have a short-term physical condition, and 26% have a memory problem.

Most care recipients (53%) have been hospitalized in the past 12 months.

Caregivers average 24.4 hours/wk providing care, but nearly a quarter of them are providing 41 hours/wk or more. Caregiving was found to be especially intensive for spousal caregivers, who average 44.6 hours/wk.

Higher-hour caregivers (21+ hours/wk; 33% of caregivers) are working especially hard and tend to feel strained. The survey found that most of these caregivers are performing medical/nursing tasks as well as assisting with ADLs. Compared to lower-intensity caregivers, they were more likely to report poor health and to say that caregiving had affected their health. They reported wanting more help from professionals, both for their own self-care and in providing care to their relative.

Most caregivers (59%) reported assisting with one or more ADLS. The most commonly reported form of ADL assistance with helping a person transfer from beds or chairs. (This surprised me; I would’ve expected bathing help to be more common.) 16% of caregivers said they are “dealing with incontinence or diapers.” One in 4 caregivers said providing ADL help is difficult.

Virtually all caregivers (99%) are helping with IADLs. Transportation (78% of respondents) and grocery shopping (76%) were nearly tied for most common type of IADL help, followed by housework (72%), meal preparation (61%), managing finances (54%), and giving medications or injections (46%).

Most caregivers are involved in care coordination. Two thirds of caregivers reported monitoring their caree’s condition to adjust care, and 63% said they communicate with health professionals. Half said they advocate for their relative.

Forty percent of caregivers qualify as “high burden”. Using an index that combines a caregivers hours along with level of ADL and IADL support, the survey team concluded that 40% of caregivers are high-burden, 41% are low burden, and 18% have intermediate burden.

Most caregivers (57%) are assisting with medical/nursing tasks. This includes activities like administering medications, preparing food for special diets, wound care, monitoring blood pressure or blood glucose, and operating durable medical equipment. 42% of caregivers said they had received no preparation for doing these tasks (!).

One in three caregivers is caring solo. Only 53% of caregivers said that another unpaid person is helping their caree. Only 32% of caregivers said their caree gets paid help from aides or others.

Half of caregivers feel they had no choice in taking on their role. Of these 59% were higher-hour caregivers (21+ hours/wk). Many of them reported emotional, physical, and financial stress related to their caregiving.

Most caregivers (72%) did not feel that caregiving has affected their health. However 22% of caregivers felt the role had worsened their health. 19% of caregivers reported a high level of physical strain related to the role.

Long-term conditions were more likely to cause emotional strain in caregivers. Overall 38% reported that they find caregiving emotionally stressful, but this increased to about one in two caregivers for those helping a person with dementia, a long-term physical problem, or a mental health issue.

One in five caregivers reported financial strain. Higher-hour caregiving and living more than hour away from the caree increased the likelihood of reporting financial strain.

Many caregivers work, and many had work their work affected by caregiving. The survey found that 6 in 10 caregivers had been employed at some point in the prior year. Of those, 6 in 10 had their work affected, such as by having to cut hours or “receiving a warning about performance.” (!) Interestingly, the survey found that self-employed people were overrepresented among the caregivers, and the authors hypothesize that caregivers may be “dropping out of the employee-employer relationships and opting into self-employment” for greater flexibility. Alternatively, they note that people with more flexible work arrangements may be more likely to take on caregiving duties.

Most caregivers have not had clinicians inquire about their caregiving needs. Only 32% reported that a clinician — such as doctor, nurse, or social worker — had asked about what was needed to provide care. Only 16% said a clinician had inquired about their own self-care. Caregivers involved in higher hours, Alzheimer’s care, and/or medical/nursing tasks were more likely to have these conversations.

The Information and Support Need Gap

I’m giving this part a new section, since it’s of particular interest to me, as I have a long-standing interest in online information and support for caregivers.

The survey authors calculated a “need gap” by comparing whether the respondent had a conversation about needs versus whether the respondent thought such a conversation would’ve been helpful. (Note that we are not even getting into the quality and content of that conversation, and whether it ends up helping the caregiver or care recipient.)

From page 25 of the executive summary

From page 25 of the executive summary

The survey reports that 84% of caregivers said they “could use more information or help on caregiving topics.” Topics of particular interest were:

  • Keeping caree safe at home (42%)
  • Managing one’s own stress (42%)
  • Making end-of-life decisions (22%)

Higher-hour caregivers were even more interested in managing stress (51%), as well as in managing challenging behaviors (18%) and dealing with incontinence or toileting problems (17%).

Caregivers were also surveyed regarding how helpful they thought certain policy proposals would be. Here’s how many thought the following proposals would be helpful:

  • Include caregiver name on caree medical chart: 49%
  • Require facilities to instruct medical/nursing tasks: 43%
  • Require hospitals to inform you of major decision: 41%
  • Have respite services available: 33%
  • Being paid for some of their care hours: 30%
  • Income-tax credit to offset cost of care: 30%

I must say that I was quite surprised there wasn’t more support for all of the above ideas.

Last but not least, the caregivers were surveyed on the presence of plans. Fewer than half (46%) reported that their caree had made plans for his or her future care. And only 4 in 10 caregivers had plans for their own future care.

The Report’s 5 Recommendations for Supporting Caregivers

The executive summary concludes by making the following five key recommendations (pg 29):

1. Identify and help caregivers who are most at risk for deteriorating health, financial security, and quality of life.

2.  Identify and advocate for programs that could make a real difference in caregivers’ well-being and in their ability to continue providing care, including helping them balance paid employment and unpaid care.

3. Give caregivers resources to cope with the sometimes unexpected and sudden entry into providing care.

4.  Extend training to caregivers who perform ADLs, medical/nursing tasks, and other activities, including communicating and interacting with the formal care system.

5. Encourage families to proactively plan for and discuss aging and health/disability, including plans for future care and scenarios where the current unpaid caregiver may no longer be able to provide care.

Closing Thoughts on the Report

Wow. There are a lot of caregivers and they are doing quite a lot. Of course we already knew this but it’s nice to have more information on what types of activities caregivers are taking on, and how they feel about their caregiving.

The executive summary closes with the above recommendations, but doesn’t go into how to fund or implement them.

Obviously there are a lot of opportunites within tech, geriatrics, primary care redesign, transitional care, social services, online communities, and so forth.

I will try to address some of these in future posts, but in the meantime, share your thoughts below if you can, and let’s hope next steps will be addressed in the upcoming webinar on July 15th. (Which is two days after the White House Conference on Aging; should be an interesting week!)

It’s good to identify problems and needs, but we need to take things much further in order to provide relief to caregivers and improve the lives of older adults and their families.

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