At least 17.7 million people in the United States are family caregivers of someone age 65 and older who needs help because of a physical, mental or cognitive impairment.
Caregiving is universal, but what a caregiver looks like and what he or she does can vary dramatically.
Caregivers may be young or old. They may live with the person they are caring for, or they may live hundreds of miles away. The care they provide may be only once in a while, or it may be every day. Caregivers may help with household tasks, or they may be responsible for the most intimate aspects of someone’s life. But regardless of the circumstance, it can have an impact on caregivers’ health, economic security and overall well-being.
In a report, “Families Caring for an Aging America,” published by the National Academies of Sciences, Engineering and Medicine in fall 2016, an expert committee takes a closer look at what is known about the nation’s family caregivers of older adults and the best practices to address their needs.
So to start a conversation about how the community might better address the needs of family caregivers, we brought more than 120 health care professionals together on February 24, 2017 to share the major findings and recommendations of the report and listen to what experiences and insights they’ve gained from providing services and support to family caregivers.
Diane Oyler, a program officer at the Health Foundation, highlighted key statistics and social and demographic trends impacting caregiving.
“As we look at solutions, we want to make sure that people have services where they need them, in the form that they want them,” Oyler said.
Timothy Hogues, commissioner of Erie County Department of Senior Services, Ann Marie Doetterl, regional director of Alzheimer’s Caregiver Services at Catholic Charities of Buffalo; Randy Hoak, associate state director of AARP New York; Maureen Wendt, president /CEO of The Dale Association; and Charles Yates, M.D., chief medical officer at Fallon Health Weinberg, shared their perspectives on what family caregivers need and what obstacles they face.
“As providers, we think we know what caregivers need,” Doetterl said. “Then we put services in place, but it turns out it’s not really what they need. Caregivers need to be heard.”
Often, it’s “that one thing” that will help, Hoak said, such as transportation, or social support, so it’s up to providers to take the time to talk with caregivers to find out what that “one thing” is.
Information is critical, Yates said. What can a caregiver expect to happen to a loved one? What services are available to them? Where can they go to find information?
“People are often left with far more questions than answers,” Yates said.
But even for those that are familiar with the health care system, it can be confusing and overwhelming, Wendt explained.
In addition to her role at the Dale Association, Wendt is currently a caregiver. For the past 3 years, she has been caring for her partner of 26 years, a once active 60-year-old man who suffered a major stroke and now has physical limitations, aphasia, and a fierce desire for independence.
Despite her decades of experience in aging services, Wendt said it was a challenge to try to get the information and services she needed for her loved one.
“I thought I knew the system, but it became very different when I was actually trying to access it.” Wendt said.
The panel said that one problem they often encounter is that caregivers are unwilling to access services that are available to them, regardless of income.
“People do not think of themselves as caregivers,” Doetterl said. “They think it’s just what people do for a family member or a friend.”
Subtle shifts, such as saying a workshop is about memory care versus caregiving, for example, can be an effective way to help people who may not see themselves as caregivers get helpful tools and information.
When asked for their input, event participants identified several challenges that face caregivers of older adults. Those that were most commonly cited include:
- Increasing awareness of help that is available to caregivers
- Making it easier for caregivers to navigate the service system
- Making it easier for caregivers to find help
- Improving the quality of communication between health care providers and caregivers
- Promoting “family-centered” care planning
- Addressing reluctance on the part of families to seek help
- Addressing a bias toward institutional care that exists in the health care system
- Increasing awareness of community service options among health providers and hospital discharge planners
- Addressing the lack of availability of home care due to insufficient workforce and insufficient funding for those who are not Medicaid-eligible
As the number of older adults continues to grow in the coming years, it’s essential to work together to find effective ways to help family caregivers take care of themselves and those that they care for.
“If we get the right people in the room, we can figure these things out,” Hoak said.
“Investing in caregivers is not only the right thing to do, it is the smart thing to do,” Oyler said.
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