As population ages, who will care for the caregivers?By GRETCHEN M. GROSKY
New Hampshire Union Leader
November 07. 2016 8:34PM
Four years ago, Leslie Melby was a wife, mother, and a full-time employee looking forward to retirement — and then her husband David was diagnosed with early onset Alzheimer’s at the age of 63.
That day, Melby joined the ranks of 40 million Americans caring for an ailing older adult. Joining such a club didn’t come with a set of rules, or instructions, or guidelines, she said. She found herself alone in navigating the complexities of long-term planning for his health and their finances.
“You sort of get paralyzed by your fear,” Melby said. “Certainly, witnessing the decline of someone you love and watching them change … is very frightening and very difficult.”
Melby told her story to a group of about 150 people from New Hampshire, Maine and Vermont who came together in Portsmouth Friday for the Tri-State Learning Collaborative on Aging’s Cross-Border Conversations on Caregiving.
This group gathered in hopes of finding solutions to one issue facing all three northern New England states: With such a rapidly aging and needful population, who is going to care for the caregivers?
“The need to recognize and support caregivers is among the most significant, overlooked challenges facing the U.S. population, their families and society,” said Tri-State project manager Jess Maurer, quoting from a recent report done on caregiving by the National Academy of Sciences, Engineering and Medicine.
The report found that 7.7 percent of the entire U.S. population age 20 or older is caring for an older adult with health problems or functional impairments. The average time they dedicated to an older adult with high needs was five years.
The group predicts the number of seniors needing intensive support from a family caregiver will climb from 27 percent in 2012 to 37 percent in 2050.
The effects on caregivers
It took some time, but Melby found a support group that worked within her schedule in Portsmouth, about 60 miles from home.
“I would travel to the ends of the earth to be with these caregivers — all women, some are working, most of them are the same age I am,” she said. “They are the only ones I know to be in this position. Nobody can know until you walk in their shoes.”
The National Academy study found caregivers have “higher rates of depressive symptoms, anxiety, stress and emotional difficulties, as well lower physical well-being, high levels of stress hormones and higher rates of chronic diseases.” They are also more likely to suffer from anxiety, depression, isolation and financial losses.
In its own study of the caregiving crisis, AARP found that the prolonged stress, coupled with the physical demands, “can push a caregiver to say ‘enough’ and seek out more costly nursing home placements.”
“Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives — from their health and quality of life to their relationships and economic security,” said Richard Schulz, committee chair and Distinguished Service Professor of Psychiatry at the University of Pittsburgh. “If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for care for its older population.”
The Tri-State Collaborative’s Conversation on Caregiving will also hold a meeting in Vermont and Maine, taking recommendations, ideas and suggestions from all three states to prepare a report on caring for caregivers in Northern New England.
Some of the topics the groups covered Friday included how workplaces can support caregivers, building dementia-friendly communities, and creating volunteer programs.
Woody Sponaugle of Rye was one of those in attendance. He has started a support group for men caring for their wives; his wife who was diagnosed with Alzheimer’s seven years ago.
Sponaugle’s suggestion was to start a local network for caregiver support groups; it would meet in libraries once a week to keep costs down. It would allow caregivers to talk, while someone cared for the family member in need. Members could be trained in leading their own groups in other communities.
He also suggested coming up with a one-page “playbook” for the caregiver that details things that must be done in the future — from health care, to financial planning, to the what-ifs.
“Think about football. It’s like ‘Here’s the offense, here’s the defense,’” Sponaugle said. “It’s everything on one page and it doesn’t have to be done all at once.”
AARP estimates that in 2013, 40 million caregivers provided an estimated 37 billion hours of care valued at $470 billion — more than six times the $75 billion Medicaid spent on all home- and community-based services that year. Of that $470 billion, $3.3 billion was New Hampshire’s share.
Melby said the 5.3 million Americans living with Alzheimer’s have a direct cost of over $200 billion and that by 2050, that number will be well over $1 trillion.
“Those are direct costs that doesn’t count my time or your time that you put in,” she said. “I’m concerned about the caregivers. The numbers are staggering.”
Melby said to get her own family’s affairs in order has taken four years and said she wished she had a “professional guidance counselor” to help her through it.
“I am hoping our communities in general understand we have to take care of our caregivers. I don’t know what would happen without them,” Melby said.
Union Leader reporter Gretchen Grosky would like to hear from readers about issues related to aging. She can be reached at firstname.lastname@example.org or 668-4321, ext. 339.