Building a Wishlist for Caregivers and Their Families

(Editor's note: This article is part of a year-long project about aging well, planning for the changes that aging brings and shaping how society thinks about aging.)

In preparation for the White House Conference on Aging (WHCOA) this summer, its organizers have asked caregivers and groups that support them which policies and legislative changes would make their lives easier.

"Caregiving is one of those issues that comes up over and over again. I'm really hopeful this is raising awareness of these issues across the country," said Nora Super, Executive Director for the once-a-decade conference, who has been traveling the country in a series of listening sessions and forums gathering information for the event.

Super noted that some 65 million Americans provide unpaid care for seniors or those with disabilities in their families. She and two experts fielded questions during a one-hour caregiving webinar Thursday and Super invited the public to send comments and ideas through the conference website. The other experts were Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving, which hosted the webinar, and John Schall, CEO of the Caregiver Action Network.

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Pointed Questions from Caregivers

Acknowledging the financial and emotional burdens that can fall on families caring for older adults and those with disabilities, Super asked webinar attendees what could be done do to ease them. Participants, who included caregivers and members of caregiving advocacy organizations, raised several important issues and said this is what they'd like to see happen:

• Increase the number of physicians and nurses able to make home visits to assist those without the mobility or a means to get to a doctor. Super noted the growing need for home visits and said her team is looking at ways to replicate successful local models, such as one in Washington state training in-home caregivers and providing certification. Hunt added: "We’ve got to look at the health care system and see if there are ways to create better financial incentives for physicians and nurses to go on home visits." ​
• Encourage more people on Medicare to take advantage of the free wellness visits and preventive screenings made available through the Affordable Care Act. While almost three-quarters of Medicare Part B recipients last year took advantage of at least one free, preventive service — such as screenings for heart disease, diabetes, depression and other illnesses — only 14.5 percent had a wellness visit, according to a recent analysis from Health IT Analytics. Super said health care experts are looking into why more eligible people aren't taking advantage of the free services and how to address those barriers.
• Create tax credits or other financial incentives for people who take time off from work or cut into retirement savings to care for a family member. As an example of the types of things that could help, Schall mentioned a bill introduced last year by Rep. Nita Lowey (D.-N.Y.) to issue Social Security credits for people who take time off from work to care for a family member. The legislation is still pending.
• Address the special caregiving needs of members of the LGBTQ community. Super noted that Kathy Greenlee, Assistant Secretary for Aging for the U.S. Department of Health and Human Services (HHS) serves on a task force to address needs of the LGBTQ community and has made this one of her priorities as head of the Administration on Community Living.
• Craft a national plan for caregiving similar to the National Plan to Address Alzheimer's Disease. Super agreed this would be helpful and encouraged participants to advocate for such a plan through the conference.
• Help more people view themselves as caregivers and access the range services and resources available to them. The discussion leaders spent a few minutes on the problem of "self-identification" — people who are caring for family members don't always see themselves as caregivers and therefore miss out on useful resources and services. These include the Eldercare Locator hosted by HHS. Super added that the Obama Administration has requested more than $52 million for caregiver support services, including respite care and training.
• Make sense of the raft of new technologies, apps, distance-caregiving and telemedicine tools to find the ones that are most helpful. Schall put in a plug for his organization's website, called Plugged-in Caregiving, which describes a wide range of caregiving tools and devices. Hunt recommended a report her organization produced to promote new tools: "Catalyzing to Support Family Caregiving."
• Assist the growing number of boomers with no family to care for them. When a caller noted that more than half of boomers live alone, many without family to look out for them, Super acknowledged that the caregiving landscape is changing. "We can’t just depend on the oldest daughter who is going to take care of someone, because sometimes there isn’t an oldest daughter or she may be working full-time or taking care of her own children." Instead, she said, the caregiving workforce needs to be expanded through training and pay to make these jobs more attractive.
• Help people understand their options for end-of-life care so they can make wise decisions. Super said this is, indeed, needed. But perhaps with the 'death panels" controversy in mind, she stressed that the government is not going to be recommending any specific course of action for anyone, only letting people know their options (for doctor's consultation, advance directives and living wills) so they can make choices that are best for them.

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What's Next 

All of the questions — those posed during the webinar and sent in online — will be included in a wrap-up to inform the White House Conference on Aging and to present recommendations to the president and Congress. The conference will soon  host additional webinars and forums focused on other issues, including financial security, healthy aging, elder abuse and long-term care. For information on them, sign up for the WHCOA newsletter.