June is Alzheimer’s Awareness Month, but for aging patients as well as formal and unpaid caregivers across West Texas and the country, the struggle brings reminders every day.
Mellissa Stone is a certified dementia practitioner with The Legacy at South Plains. As a formal caregiver, Stone said she’s found fulfillment caring for older adults.
“Being able to connect on a visceral level with people with dementia is something, an experience that you can't duplicate in any other way,” Stone said.
From her experience, Stone said caregiving often comes down to having patience and thwarting stigma behind mental illness to remember that those suffering from Alzheimer’s are people who need respect.
“We want them engaged. We want them to have moments of clarity,” Stone said. “We want them to have connective moments, because it keeps them as independent – and this is our line – as independent as possible for as long as possible.”
An estimated 7 million Americans are living with Alzheimer’s disease, according to the latest annual report from the Alzheimer’s Association released at the end of April.
The report highlights how this affects families, who provide 83% of the care to older adults living with Alzheimer’s or other dementia.
In Texas, more than 1 million individuals serve as unpaid caregivers, providing almost 2 billion hours of unpaid care.
Stone said serving as a formal caregiver has given her the chance to connect with the families of residents, many whose lives have changed serving as caregivers themselves.
“Living as a caregiver, like a lot of families who can't afford an assisted living facility, their burnout happens, and they don't have somebody else that can come in and clock in and take over,” Stone said.
The Legacy’s memory care director, Jessalyn Walker, described those moments of clarity and independence in residents as a proud moment, but one of her biggest struggles is seeing families beginning to accept the personality changes from Alzheimer’s and dementia in loved ones that they’ve known for their entire lives.
“That's the hardest process, because you remember grandma being the sweet person, and then they start to change, and you can't really understand what's going on,” Walker said.
Dr. Jonathan Singer is an assistant professor and researcher with the Texas Tech University Health Sciences Center’s Garrison Institute on Aging. He’s studied this experience in Alzheimer’s patients and the families of aging loved ones, some who may not yet understand that what they’re feeling is likely an early stage of grief.
“This is any longing or yearning for the person before their diagnosis: ‘I miss being with that person, I miss having an intellectual conversation like I used to,’ that's grief,” Singer said. “And it starts at diagnosis.”
Singer said part of approaching that grief could mean changing your mindset about your relationship with the loved one you’re caring for, and finding new ways to connect.
“Finding these other ways to engage and finding ways that you can really interact with your loved one,” Singer said. “It's not going to look the same, but can you find ways to interact and engage and have a valued relationship with them?”
Staff at the Garrison Institute provide free respite service for three hours called “Creative Minds,” a weekly recreational intervention project. Singer said one patient’s moments of clarity came from identifying classic cars out of a set of pictures.
“These are humans, right? These are adults, most of them very successful,” Singer said. “This is where I always try to – when we work with caregivers – find ways like that: what do they enjoy? What do you like doing with them? What are they competent at?”
For caregivers, the stress can often be compounded by added financial issues. AARP research found 61% of family caregivers are trying to balance work and caregiving in their schedules and their budgets. The Alzheimer’s Association report estimates that the total cost of caregiving for patients with Alzheimer’s or other forms of dementia could total $384 billion in 2025.
Singer said one of his primary goals is finding ways to make caregiving accessible to all, and that means lowering costs.
“People look at, oh, ‘copays are only $40,’ well, if you have 10 appointments a month, that's $400, that's a lot of money to a lot of people,” Singer said.
Thanks to nationwide innovations in the approach to Alzheimer’s and dementia care, like the GUIDE program, which is designed in part to include family caregiver support under Medicare, as well as donations to the Garrison Institute, Singer said eldercare in Lubbock can be within reach for more people.
However, struggling healthcare access in rural West Texas affects every demographic, which Singer said could continue to delay Alzheimer’s diagnoses in the region. While no cures for Alzheimer’s exist yet, all the current responses depend on identifying it early.
According to the Alzheimer’s Association, more than half of primary care physicians caring for people living with Alzheimer’s say there are not enough dementia care specialists to meet the needs, especially in rural regions.
Singer said he wants to see providers across West Texas trained to identify the symptoms as quickly as possible.
“As we start to find ways to slow progression, and hopefully, one day find cures, it's going to be late, late diagnosis that hurts this area,” Singer said.
Back in Lubbock, formal caregivers like Mellissa Stone continue working to give a break for family caregivers, and the feeling of independence and humanity for residents struggling with Alzheimer’s.
Stone said she has found connections with some residents through music.
“Nonverbal, completely nonverbal. But you would turn the right song on, and she would belt it,” Stone said. “She would sing it, she'd be tapping her foot, she'd be swaying.”
Other simple things like doing makeovers with residents for “Feel Good Friday” remind Jessalyn Walker of the valuable role that caregivers play.
“Those moments,” Walker said. “It's like, wow, she came back for a second, and then you gain a whole lot of grandmas and grandpas.”
At the Garrison Institute on Aging, staff are building a “Dementia Friendly Lubbock” by bringing wider awareness of the condition and the latest responses to all West Texas caregivers.
The Garrison Institute’s comprehensive memory clinic offers comprehensive assessments, assistance with developing care plans, and support for caregivers.
Services through the Centers for Medicare & Medicaid Services’ GUIDE program are expected to begin with the Garrison Institute in July. More information on the services and eligibility can be found here.