When an Alzheimer’s diagnosis happens, a wave of people are affected, and for many that means becoming a caregiver for loved ones.
Many people with dementia opt for home care by a family member, and being a caretaker has its tolls. More than 11 million Americans provide unpaid care, according to a 2023 report from the Alzheimer’s Association.
Ginny Funk, director of programs at the Alzheimer’s Association, said she never would have guessed how hard it would be to apply the things she teaches to others to herself following her late mother’s diagnosis.
“We kind of went through everything. I had to eventually move her out of her home into care,” Funk said. “It’s the most surreal — I just don’t even know how else to describe it.”
Around 6.7 million Americans who are 65 and older live with Alzheimer’s, according to the 2023 report. Bexar County's rate is higher than the national average at 13%, according to county-level data from the Alzheimer’s Association.
Local resources in San Antonio
Grace Place, at Meals on Wheels in San Antonio, provides an adult day-care center for people living with Alzheimer’s and dementia. The facility closed temporarily because to the pandemic, but the newly renovated facility plans to bring relief to local caregivers.
“I feel like we are now finally in a program space that aligns with just how incredible the program itself is,” said Christian Avena, director of Alzheimer’s services. “When you look at a family where those have been impacted by Alzheimer’s or dementia, the impact is deep.”
Grace Place established resources called Grace at Home for caregivers who needed support during the pandemic and after the facility closed. The free-monthly kit includes therapeutic activities, caregiver guides and other relevant resources.
“It is much more than just the depth of the person who received diagnosis ... very much so it’s two-fold, it’s the caregiver,” Avena said. “We are providing that care for the person living with dementia and at the same time, though, we also provide support and care for their caregivers.”
Successful Aging and Living in San Antonio (SALSA) has a caregiver workgroup that meets monthly to ensure all caregivers are aware of the resources available to them in their communities. The toolkit created by the workgroup includes resource links such as transportation and cost-efficient medications.
“We want to make sure that people who are looking after older adults with dementia or Alzheimer’s get the support they need,” said Jane Paccione, managing director of collective impact. “How do we make sure that we’re building a culture that will support your caregiving duties?”
The Alzheimer’s association and Meals on Wheels sit in the workgroups to create plans and aid for caregivers. A report from SALSA focused on support for caregivers in the workplace. Seven organizations were a part of the Balancing Employment and Caregiving Workgroup.
The Alzheimer’s association hosts 16 different classes to help educate caregivers on how to navigate the disease. One class recognizes the 10 warning signs and what is normal aging. Support group participants range from the beginning stages of diagnosis to those whose loved one died.
Challenges for caregivers
The day-to-day tasks of caregivers include chores, preparing meals, providing transportation, medical appointments and managing finances. Some other challenging tasks include managing behavioral health symptoms, such as aggressive behaviors, depressive moods and nighttime disturbances, according to a report from the Alzheimer’s Association.
While startling, acts of aggression or heightened emotions in those with dementia are a form of communication, according to Avena.
“It’s really important to first understand more than likely what is happening is there is a need that’s not being met,” Avena said. “Sometimes just changing the physical environment putting them into a different room, introducing music, sounds, smells ... helps redirect some of that really scared and fearful thinking.”
Caregivers neglect their own health at times, even in the early stages of their loved one's diagnosis, explained Funk, who also sits on the SALSA caregiver workgroup.
“It seems that oftentimes the help of a family caregiver can decline quicker than the person with the disease because of the stress,” she added. “They just get so focused on taking care of their loved one oftentimes that they lost their own health.”
A brighter light
The San Antonio Area Foundation established the reframing aging initiative, to create long-term social change designed to change the public's view of aging.
“We’re really trying to sort of switch out how we’re thinking about aging,” Paccione said.
Although the experience of caring for someone with dementia can be difficult it doesn’t have to be all negative, said Funk, who cared for her mother.
“Nobody should go through this or lose their parent or spouse or any grandparents,” she explained. "I kept journals with my mom and whenever she would say something that was such a gem, I would write it down or you know, there’s a lot of fun and laughter that can still be had.”
Gabriella Alcorta is a health reporting intern for Texas Public Radio in collaboration with Texas Community Health News through Texas State University's School of Journalism and Mass Communcation and the university’s Translational Health Research Center.
