Family caregiving is a life event few of us will miss. Already, more than 65 million Americans care for an ailing loved one. Over the next 20 years, Americans who are now in middle age will have more parents to care for than children. How did we get here, and what comes next? To mark the annual National Family Caregiver Month in November, I asked five pioneers of the caregiving community to look back at the last 20 to 30 years, when they led the charge to raise awareness of caregivers' needs – and to make some predictions for what lies ahead. The five participants were:
- Leisa Easom, executive director of the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University, which fosters local, national and international partnerships to provide services and promote caregiver health, skills and resilience.
- Gail Hunt, president and chief executive of the National Alliance for Caregiving, a non-profit coalition that conducts research and policy analysis and develops programs for caregivers and the professionals who serve them.
- Kathleen Kelly, executive director of the Family Caregiver Alliance, a public voice for caregivers that provides direct support services and promotes public policy, research and advocacy.
- Larry Minnix, president and chief executive of LeadingAge, which represents 6,000 not-for-profit organizations and other partners focused on expanding the possibilities for aging in the United States and more than 30 other countries.
Suzanne Mintz, co-founder and chief executive emeritus of the National Family Caregivers Association, which educates, empowers and speaks up for the nation's family caregivers, regardless of their loved one’s age or diagnosis.
What have been the most significant strides in support of caregivers in the last 20 years?
Kathleen Kelly: Caregivers have gone from being completely invisible to starting to be recognized as the largest long-term care workforce in this country. However, we can’t stop saying it a million times a day to really have it resonate with policymakers, CEOs and providers who need to understand the value of caregivers in our health-care system.
Gail Hunt: Caregivers are finally being seen as critical members of the long-term care team. In the past, the role of the family caregiver was completely overlooked. Now you see more providers and physicians talking about patients and family caregivers as one unit.
Suzanne Mintz: There is more recognition that family caregivers perform across the lifespan when it comes to chronic illness and disability. It is not just about caring for an older parent at home; it is caring for a child with Down syndrome, a spouse with multiple sclerosis or a parent with Alzheimer’s disease. And more attention is being paid to caregivers' key role in helping us live successfully in the community.
Leisa Easom: The establishment of the National Family Caregiver Support Program in 2000 to provide caregiving grants to states and territories was a major milestone for caregiving. The wealth of new evidence-based research has been another. Now we need to translate that research into programs that expand or sustain support and training for the caregivers who provide 80 percent of the long-term care in this country.
Where are the gaps? What do caregivers still need in the years ahead?
Easom: Caregivers need greater access to important services. I believe you will start to see more geriatric care managers or "care coaches" in communities to help caregivers gain access to services and to lead them through transitions in care. Hospitals are pressured to keep readmission rates down and increase patient satisfaction, and caregiver integration and education is the key to success.
(MORE: Caregiving Expert Wins 'Genius' Grant)
Minnix: The business community is getting a wake-up call on caregiving. The U.S. Chamber of Commerce has been surprised at the statistics around caregiver productivity and employee health and wellness, and is starting to create programs to address these issues. We also need a better hand-off in transitions of care. A hospital or facility may care for a loved one for a few hours or days, but the caregiver then takes on the job of caring for that loved one at home for months or years. How to do this as effectively, efficiently and inexpensively as possible is where caregivers need help and where we should look at some local best practices for solutions. Technology will also play a key role in supporting caregivers. From online communities of support to caregiver apps, it's becoming more commonplace every day.
Kelly: As a society, we have to recognize that we are moving from our pioneer mindset of being independent, to maintaining independence by becoming much more interdependent, especially when it comes to making your home and community "aging in place" friendly. Whether it’s the Village Movement, or looking at your home as a revenue source by renting rooms to those who can provide caregiving help, or creating a home-based business in your later years, these trends will all help caregivers.
Mintz: I believe policymakers are recognizing that the vast army of family caregivers needs better financial support, and near-term future legislation will bring this financial relief. In addition, the national network of volunteers to help and support caregivers — everything from making them feel less isolated to giving them respite when needed — is in its infancy but will continue to grow with neighbors and communities coming together to help caregivers.
Hunt: Performing a caregiver assessment in the same way we do patient assessments today should become more the norm. We need to evaluate a caregiver’s willingness and his or her ability — physically, emotionally and financially — to be a caregiver. And we need more awareness of resources like the Eldercare Locator. That is a great example of our tax dollars at work.
Q: How will boomers transform the perception and status of caregivers as more of them join the ranks?
Kelly: We have a different definition of "modern family." We watched The Golden Girls, and so, whether it is multigenerational living, living with friends in a communal environment or creating age-friendly sustainable communities, we know we will evolve with our caregiving needs. We are also not going to avoid the caregiving conversation like previous generations. We know we cannot afford to do that and have the quality of life that we want in our later years.
Mintz: There is good and bad when it comes to boomers and caregiving. The bad is that we are a generation that has not been as wise as we could be when it comes to saving and planning for our future. The good is that we are "barn builders," and just like that scene in the movie Witness where the Amish community comes together to help a family raise a barn, we will come together to help each other in caregiving.
Minnix: Boomers have been called impatient, demanding, questioning of authority and demanding more choices in life — all things that will serve us well as caregivers.
Hunt: Society has always characterized boomers as selfish, and when it comes to caregiving, we can be happy about that. We won’t stand for a system that does not recognize our value and our needs. This is great, because more boomers will self-identify as caregivers and will press for change in Washington, on Wall Street and on Main Street to create the services and support that will benefit caregivers for generations to come.
Easom: Boomers will be the first generation of caregivers to understand that reaching out for help is a sign of strength. We’ll be the pathfinders for a better caregiving future.
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