At last. Last week the National Academies of Sciences, Engineering, and Medicine (NASEM, formerly known as the Institute of Medicine) released a report on my very favorite topic: family caregivers of older adults.
The official title is “Families Caring for an Aging America.” Hence this report is indeed specific to caregiving for older adults, defined in this report as aged 65 or older. (In comparison, last year’s Caregiving in the US 2015 report considered a broader range of caregiving recipients.)
So if you have any interest — personal or professional — in the families and friends who are helping older adults, this report is a must read. The full report also addresses the role and potential of newer technologies, especially in Chapter 4.
As with many NASEM reports, the main report page provides the following:
- A four-page “Report in Brief“
- A two-page summary of the committee’s recommendations
- A press release
- Links so that you can download or read the full 280-page report (it’s free)
Some data highlights
I haven’t read the full report yet, but here are some interesting data highlights I’ve come across so far:
Statistics on how many older adults are getting help. These seem to be mainly drawn from 2011 data.
- 6.3 million older adults (17% of those age 65+) received help with household tasks and/or “self-care” (meaning ADLs such as bathing, toileting, dressing, eating, or mobility).
- An additional 3.5 million older adults received help due to having dementia.
- Of the 3.5 million people with dementia, about 1/3 need help with 2+ ADLs. Again, this doesn’t include people who are in nursing homes.
- There were 1.4 million people without dementia who required help with 2+ ADLs.
The projected future need for long-term care. Note that the table below refers to how many will be “high-need” and require help with ADLs. So this doesn’t account for older adults who need caregiving help but aren’t at “high-need” intensity. Also, “none” seems to mean “less than 90 days”.
- It’s especially notable that almost 18% of women are expected to have 5 or more years of high need.
How many people are family caregivers of older adults and how long do they provide care. Again, this is based on 2011 data.
- 17.7 million people (~7.7% of the US population aged 20+) were caregivers of an older adult due to health problems or functional impairments. This figure does not include the family caregivers of nursing home residents.
- Nearly half of caregivers (8.5 million) were providing care to a “high-need” older person. Again, this means dementia or needing help with two or more ADLs.
- Many caregivers spend years providing assistance.
Other things covered in this report
I can’t summarize all the findings now, but here are some other aspects of caregiving that are addressed in the report:
- Currently available support national support programs for family caregivers.
- The actual tasks that family caregivers take on, including providing medical care at home, coordinating health care and long-term care for the caree, and serving as surrogate decision-makers.
- How family caregivers experience the healthcare system; basically their availability is taken for granted but they are usually not included in the care planning, nor are they trained to do what they are expected to do.
- The health impacts of being a family caregiver; risk of negative impacts are higher if the caree is high-needs or if the caregiving lasts a long time.
- Financial and workplace repercussions for family caregivers.
- A review of interventions proven to help family caregivers. These basically fall into skills training and then support for self-care and resiliency activities. The report notes that most good interventions begin with an assessment of the caregiver’s needs and values, and can be tailored accordingly.
- Ongoing changes in demographics and in families (e.g. people having fewer children), which means the pool of available family caregivers is shrinking.
- Barriers to clinicians doing a better job helping family caregivers. There’s a great box in Chapter 6 with quotes from interviews with the primary care providers (PCPs) of dementia patients, illustrating the many ways PCPs find themselves struggling with these patients and families.
The committee’s recommendations
The main recommendation is for the current emphasis on “person-centered care” to shift to “person- and family-centered care.” To that end, the committee urges the government to create and implement a “National Family Caregiver strategy that includes the following:
• effective mechanisms to ensure that family caregivers are routinely identified in delivery of services to older adults with impairments;
• Medicare and Medicaid payment reform to motivate providers to engage family caregivers effectively;
• training of health care and LTSS providers to engage caregivers;
• dissemination and funding for evidence-based caregiver services;
• evaluation and adoption of federal policies that provide economic support to working caregivers; and
• expansion of the national data collection infrastructure to create a knowledge base about caregivers.
They also list an additional three recommendations, which are (I’ll paraphrase here):
- Those states who aren’t yet doing much to support the caregivers of older adults should learn from those states who are addressing this, and should implement similar programs.
- The government should help create a public-private innovation fund to speed up the research and development of assistive technologies, remote monitoring systems, telehealth applications, and other tools that can help family caregivers.
- Diversity is important and increasing, so all above actions should address the needs and values of diverse family caregivers.
My thoughts so far
This report is incredibly useful as a summary of statistics, research, and existing programs related to family caregivers of aging adults.
It’s especially nice that the committee focused on care for older adults, and for people with dementia, as these two groups of care recipients are growing and are implicated in the majority — albeit not all — of family caregiving experiences. Hence designing solutions and approaches that address these two types of caregiving can improve the health and wellbeing of this very sizeable and growing population (older Americans who need frequent care from others, and their caregivers). It’s also urgent to address these two groups because many within these groups are currently experiencing stress and harm from lack of adequate support and attention.
Regarding the recommendations, the biggest problem by far will be lack of funding. The currently available programs for older adults and family caregivers are badly underfunded and the mismatch is stunning.
For instance, the National Family Caregiver Support Program (created in 2000; the first and only federal program to specifically address the needs of family caregivers of older individuals) had a budget of $145 million in 2015. Per this NASEM report, this enabled them to serve “more than 900,000 individual caregivers of older adults, of which 115,585 received counseling or training, and more than 64,000 caregivers received respite care; the remainder was provided information about available services and supports or assistance with accessing services.”
Let’s think about this. They say 18 million are caregivers to older adults, with 8.5 helping those with “high needs.” But less than a million were “served.” The vast majority of those “served” received information and referrals, and while this is an important service to provide, most family caregivers are in dire need of counseling and training, plus the ones who are in “high-needs” situations often really benefit from some respite services.
This mismatch between needs and available help is all the more grotesque when one remembers that the estimated value of the care provided by family caregivers to older adults is on the order of $522 billion. (RAND 2014.)
Obviously, the government and the public are not going to fund $500 billion worth of help to older adults, in order to relieve family caregivers or compensate them for their efforts. But it should not be unreasonable to expect society to increase its investment in supporting family caregivers of older adults.
Furthermore, one of the biggest problems I encounter right now is that many caregiver support interventions are simply not available to the general public. Foundations and the government may fund their development and testing, but after that, if there isn’t a “business model,” then it doesn’t continue.
So funding is needed to make these programs more available, and then additional funding — likely via payment reform — will probably be needed in order for healthcare providers to be able to devote time to better engaging with family caregivers. (I love family caregivers but it takes more time and effort to coordinate with them than to neglect them. Hence the default among providers is to neglect them. Money makes healthcare go round.)
Otherwise, the other issue I find myself thinking about is to what extent we should expect family caregivers to be doing so much work supporting older adults. For instance, hospitals are now striving to quickly discharge older adults to home after surgery. But this essentially presumes that the patient’s family will be able to provide suitable support and help; home health care services are great but they don’t provide the amount of nursing care and assistance that people get in hospitals or in rehab facilities.
Now don’t get me wrong: hospitals are risky places for older adults and there are good reasons to help older adults get home sooner. But this trend also represents a transfer of work from hospitals and rehab facilities (who are paid by Medicare) to families (who are essentially paid by no one).
NASEM acknowledges these issues early on in the full report, in a section titled “Context for This Report“:
The committee’s charge raises questions about the boundaries between the responsibilities of individuals, families, and government. By its very nature, family caregiving of older adults is both a personal and private issue as well as a public and societal concern. From the individual perspective, one’s involvement in caregiving for his or her elders is, in part, a matter of personal, spousal, or filial responsibility. Yet, for generations, the American public has also assumed collective responsibility in helping to protect the well-being of the nation’s older adults through government programs such as Social Security, Medicare, Medicaid, the Area Agencies on Aging (AAAs), and others. The committee recognizes that the role of the individual versus that of society overall is often a matter of public debate.
Studies find that caregivers do better when they feel they had a choice in taking on their caregiving role. But in many situations people feel they have no choice.
So shouldn’t we be working to develop a system that is less dependent on the unpaid labor of family members and friends?
Clearly, we need to do a much much better job of collaborating with, and supporting, the many family caregivers who are involved in helping older adults.
But we also need to keep debating what is fair to ask of them, and what is fair overall, given that a certain number of older adults are “elder orphans” who have no spouse or adult children.