AUSTIN (KXAN) — Mike Thompson and his wife Kathy had so many plans for when they retired: to travel, enjoy time with friends and most importantly spend more time together. So, when Kathy first began to experience memory problems, Mike said he was concerned, but Kathy was in denial.
“She would ask me three times, ‘Where are we going?’ And I’m ashamed of myself to say I lost patience with that,” he said.
Eventually, he noticed his wife withdrawing in social situations, and ultimately doctors diagnosed her with Alzheimer’s disease.
“It was like getting hit with a brick almost,” he said. “We could no longer have those long, deep conversations like we used to. The soulmate, best friend type of relationship suffered.”
Mike became his wife’s full-time caregiver for several years, before making the difficult decision to move her to Silverado Barton Springs Memory Care Community.
It’s a choice families will be making more often, researchers predict. According to demographic data, the number of seniors in Texas is expected to more than double from 3.9 million in 2020 to 8.3 million by 2050, due to longer lifespans. This increase poses a new challenge in caring for older individuals, however, particularly those living with dementia.
A new peer-reviewed report from public policy researchers at The University of Texas at Austin found affordable and sustainable dementia care in the U.S. and Mexico was lacking. They suggested several solutions for providing more comprehensive care to families in both countries.
“Not just health care issues. It’s social care as well as financial issues. Who is going to provide these services when we are no longer able to take care of ourselves? How we are going to pay for it?” said Jacqueline Angel, a professor in the LBJ School of Public Affairs at UT Austin and the lead author of the study.
The study noted both countries “suffer from a persistent shortage of high-quality care homes and geriatric primary care physicians.” It also found limited options for adult day centers or other daytime care options, primarily in rural areas and densely populated urban areas of concentrated poverty.
Angel explained that in both countries, the traditional employment-based private health insurance system has left many older individuals without any coverage or adequate coverage “when they need it most.”
They also found an urgent need for more resources for family caregivers, and stark gender differences in where the “care burden” falls.
“Because women bear most of the caregiving responsibilities and costs and present higher risk of dementia, policies should aim to alleviate these stark gender differences in care burden,” Angel said.
- Read more about the report here
The report outlines why the researchers feel any progress to be made, in both countries, will require an expansion of existing programs or the generation of new programs to meet the needs of older adults.
Some of solutions could include more access to health care for people in retirement, expanded family leave options for people to be able to care for an aging loved one, and expanding education opportunities for geriatric medicine to fill the current shortage of physicians.
“To really provide that dignity and respect to be able to age-in-place, for everyone, is really the ultimate goal,” Angel said.
This report’s recommendations are the result of a binational conference, the 2019 National Institute of Geriatrics in Mexico and the International Conference on Aging in the Americas meeting, and the study was funded by the National Institute on Aging and the Hogg Foundation for Mental Health at UT.
Until systemic changes can be made, Lynn Greenblatt operates a support group for family caregivers of people with dementia and other diseases, called Caregiving Café. She often brings in speakers and experts, to help fill the gaps and provide resources to families.
“Because there is no one place where family caregivers can go to get this sort of information,” she said.
She said her other primary goal with the group is to ensure families and caregivers know they aren’t alone.
“Form a team,” she suggests. “Educate yourself about the condition. Make time for self care.”
Thompson comes to visit Kathy nearly every day. He has watched as her memory and words fade, but he knows that the most important pieces of his wife are still there: her kind heart, her listening ear and her care for others. He said his faith has kept him strong, and called the emotional support he’s received through the Caregiving Café, his family, his friends, and the staff at Silverado “invaluable.”
He said he’s glad to know these researchers are working to improve care at all levels for people affected by this disease.
“Society takes care of a lot of things, but I think things that are very lacking — besides healthcare — are mental health care and care for the aging,” he said. “We have an aging population and that’s going to become a bigger and bigger issue for all of us.”
More resources for families
- Use the Alzheimer’s Association’s Community Resource Finder
- For the 24/7 free Helpline, call (800) 272-3900
- Explore resources from the Texas Health and Human Services Commission on Alzheimer’s disease
- Find information on Texas long-term care facilities