Elder care in the United States can seem almost impossible to navigate. When a loved one needs long-term care, family members and friends often do not know where to go to find information and support. How can we as communities, families and individuals do a better job planning for the aging process and the needs of our growing elder population?
Public radio station WRVO in Upstate New York recently tackled these questions and much more in a lively panel discussion with Dr. Bill Thomas, physician and author, Dr. Karl Pillemer, a gerontologist and author at Cornell, host WRVO News Director Catherine Loper, and me. (Download the podcast here.) Both Thomas and Pillmer are international experts in elder care issues. I was honored to participate in the panel, bringing to the discussion my perspective as a former care partner for my mother, who lived with dementia, and as an author of a memoir about dementia caregiving (Inside the Dementia Epidemic: A Daughter’s Memoir), a blogger, and a speaker on caregiving issues.
The podcast is well worth listening to, I believe, because of the sheer range of topics that we touch upon and my fellow panelists’ innovative ideas about aging well not “in place” but “in community.” The discussion will likely be of interest to anyone who is caring for an aging family member or friend, is receiving care themselves or anticipating giving care, or is thinking about what they would like their own life to look like as they age and need long-term care in the future.
Pillemer, author of the book “30 Lessons for Living: Tried and True Advice from the Wisest Americans,” says that “in general, on the national level, we are not well prepared for aging and elder care. For example, we are facing an absolute epidemic of Alzheimer’s disease that neither our political leaders nor anyone else is actively confronting.” While more people are thinking about end-of-life planning and advance directives, there is very little interest in planning for chronic disease and long-term care. As I point out, women are twice as likely as men to need long-term care for five years or more, and while 70 percent of Americans will need long-term care for at least a year, only three percent buy private long-term care insurance. Pillemer stresses that while families need to plan for long-term care before a crisis occurs, they need to be provided with better tools and support as they have those conversations.
We also need, Thomas says, to get over the notion that there is just one “caregiver” in a family. The question to ask, he says, is “how do we all contribute to the well-being of someone we love very much? How do we ensure that we all stay healthy? Care is an act that is carried about by a group, not one person. If we don’t have that conversation, care defaults to the American one-on-one model.”
Thomas also questions the popular belief that if you can’t age “in place” in your own home you have failed. “Being in the home you’ve lived in for 40 years may be the right thing for you, but it might not. In the U.S., leaving your home is seen as the beginning of a downward spiral. But people right here in our own community are living isolated lives alone, bored and cut off from their community because they think that the only victory possible is staying in that house. We need to remember that aging is a team sport. You need to be with people.”
Pillemer agrees, noting that many of the elders he has interviewed about their advice for living say that elders should consider living communally rather than being bound to the American ideal of aging in place in your own home. Pillemer adds, though, that we need communal homes to be centrally located, in age-friendly, walkable communities. We need them to be affordable. And as Thomas adds, we need to stay connected to elders living in such homes in the community, so we don’t remain an age-segregated society where many young people never have the opportunity to talk to or spend time with elders.
It’s important, Thomas notes, to approach elderhood not as a time of loss and decline but as a “rich and meaningful” period of post-adulthood—an opportunity to shift from the frenetic race of “doing” to the calm depth of “being.”
Other topics we talk about, which are too numerous to list in their entirety, include:
· What should you consider before moving a parent into your home?
· Is it worth the cost to hire a geriatric care manager to assess your family’s situation and design a care plan that meets your specific needs?
· What kinds of free support are available for family caregivers?
· How can we encourage family caregivers to see themselves not just as family members or friends but as caregivers who need and deserve information and support?
· Why do communities need government and volunteer support of transportation services in rural areas, and alternatives to having elders drive from rural areas to far-away cities to consult with specialists?
· As you age and your friends move away or die, why is it important to keep adding new people to your “funnel” of friendship?
· How can new technology help caregivers find support or monitor a loved one who lives far away?
· How is caring for an aging spouse or partner different than caring for an aging parent, and why do spousal caregivers often receive much less help in the home than other types of caregivers?
The discussion, recorded in front of a live audience at the Ithaca, N.Y., public library, also included a question and answer session. Audience members asked the following questions:
a. Should the United States start a “wealth transfer program,” such as a mandatory public long-term care insurance program, so that everyone shares the cost of long-term care, rather than making people spend all their hard-earned savings and become impoverished on Medicaid?
b. How can you create a comfortable balance between living and “being” in the moment and planning ahead for your future needs?
c. If you live in a continuing care retirement community (where you can start off in “independent living” and progress through nursing home care), who decides when you move from one part of the facility to another? Is the choice ever taken away from you?
d. Some states, such as Rhode Island, rank very high for the quality of their long-term care facilities. How is that rank determined? Why is New York ranked near the bottom?
e. How can elder care consumers be more informed about “person-centered” care? (Person-centered care focuses not on caregiving tasks but on the person, not on limitations but on strengths.) How can we have more local and regional dialogue about what to look for, what to demand, and what to expect for ourselves and the person we care for?
g. Should boomers create “playgrounds” for elders that would encourage light-hearted recreation, exercise and socialization?
In just a little over an hour, you can learn more about all of these topics! Listen to the podcast here: “Eldercare: A Community Health Forum.”