November is National Family Caregivers Month. To discuss some of the issues facing family caregivers, Seniors Speak Out’s Nona Bear recently spoke with Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving. Below is an abridged version of the interview.
1) Would you tell us a bit about the National Alliance for Caregiving and the way in which the Alliance supports family caregivers?
The National Alliance for Caregiving is a non-profit coalition of nearly 60 organizations who care about caregiving. We work together to create new research, develop innovations, and advocate on behalf of family caregivers here in the United States and internationally. This month, we’re honored to host two programs for family caregivers. The first is the #TalkBrainHealth Conversation Kit, which is a toolkit that families can use to talk with someone who may be having memory problems. The current kit is in English, and we expect a Spanish-language kit to be released in early December.
The second program is about caregiver health and features four caregiving coalitions in San Diego, New York City, Wisconsin, and Arkansas. Each coalition is hosting an educational program on adult immunizations called “Healthy Families #StickTogether.” Caregivers and their loved ones are invited to share their stories online. The events are underway this month and in December.
2) I know the Alliance has done significant research into the impact caregivers have on patients’ health and even the economy as a whole. Could you share some of the findings?
Our best-known work, the Caregiving in the U.S. series created in partnership with AARP, provides many of the baseline statistics available on family caregiving. Many people don’t realize that older caregivers are a significant portion of the 44 million people in America who provide care to another person.
In fact, nearly 1 in 10 family caregivers is 75 years old or older, typically caring for a spouse or for an adult child who has long-term care needs. These older caregivers have typically been providing care for five and a half years, often without paid or unpaid help. This caregiver spends roughly 34 hours each week providing care, and you can imagine how that might impact the caregiver’s own health and wellness needs.
While caregivers can improve lives for patients, there is a cost to the health care system and to our economy. The average caregiver is just under 50 years old and usually still in the workforce. In many cases, caregiving may have an impact on caregivers’ jobs which results in reduced income, and they are managing the financial challenges of caregiving as well as the emotional and physical stressors. It’s important for the government to acknowledge these challenges and to find ways to help, so that as a caregiver ages, they are able to stay in good financial and physical health.
3) November and National Family Caregivers Month is also right in the middle of the Medicare open enrollment season. Could you speak for a bit about how important the Medicare Part D benefit is to beneficiaries who are receiving care and to the well-being of older caregivers, as well?
Many caregivers struggle to get access to the right medications that can help their loved one manage their health conditions. This is something we saw in the report On Pins & Needles: Caregivers of Adults with Mental Illness. Many families reported that it took more than 10 years to get the right medications to treat the underlying mental health condition. Benefits of Medicare Part D are critical because they serve families such as those in the Pins & Needles report—families who need access to very specific medications that can make a huge difference in creating a better quality of life.
4) Where can caregivers get information and tools to help their family members review and evaluate their Part D coverage?
The Medicare.gov website provides a number of helpful tools for patients and their families, such as the Medicare Plan Finder and a personalized search for Medicare beneficiaries. The National Council on Aging also has a great website called “Medicare Matters,” which includes resources to understand how Medicare and the Part D program, in particular, works for individuals and families. And, of course, your own Seniors Speak Out site has so many materials that are helpful for caregivers.
5) Caregivers are often responsible for helping their families or patients with their medications. Can you recommend resources or tips for caregivers to help with medication management?
Family caregivers should think of the health care team as a partner in the work they are doing to support their loved one. The family physician or primary care doctor who is managing the health of the care recipient can be an excellent person to talk to about how to manage medications. In many instances, a nurse or nurse practitioner can show family caregivers how to manage medications and provide information on special concerns. In addition, pharmacists have special training on medications and can help families. Some pharmacies even have 1-800 numbers that a patient or a family member can call to ask questions. Caregivers should know—it’s always okay to ask for help if you need it.
6) How can communities, neighbors, friends and other family members best thank and support family caregivers?
Acknowledging the work that a family caregiver does is always a great first step. This means recognizing that the caregiver is a trusted member of the health care team and that they are going above and beyond in caring for their loved one. Respite care, or providing the caregiver with a break, is often a very appreciated gift. This may mean sitting with the patient while the caregiver gets a chance to run errands or take a break. It may also mean arranging for home care services or other community-respite programs. Finally, there’s an advocacy component to this—as a community, even as a nation, we should be thinking about ways to formally acknowledge the ways that families support patients. Great health is a team sport, and we need to find ways to keep the caregiver involved.
7) What else would you like to add about caregiving?
I just want to thank the family caregivers who make our work possible. For more information on family caregiving and the research we’ve done, we encourage people to check out www.caregiving.org and to sign-up for our weekly email blasts on the latest caregiving news.