AUSTIN (KXAN) — All over Sharon Butler’s home are pieces of her mother: sketches, paintings, a tiny sculpture carved out of soap. She has memories of her mother, Dorothy, making art as far back as she can remember, but one oil painting, in particular, holds a poignant place in her heart.
“She never quite put the detail into it that she would have,” Butler explained, pointing out certain spots on the canvas.
While working on this landscape in a painting class, Dorothy had a stroke that affected her body and mind. She spent time in the intensive care unit, before being diagnosed with vascular dementia and eventually with Alzheimer’s disease.
At the time, Butler was just 25 years old.
“It was extremely traumatic,” Butler described.
She said her mother never gave up on creating art, but Butler watched as she traded original art for craft kits and paint-by-number sets.
“Her personality and her life changed so much that I never really knew her as a mother and grandmother — as she would have been — and that was hard.”Sharon Butler, whose mother is diagnosed with vascular dementia and Alzheimer’s disease
Butler’s parents first moved into the independent living portion of a senior living community in Midland. Several years in, Butler hired someone to help them run errands. Eventually, they made the difficult decision to move into assisted living closer to her in the Austin area.
“If it had just been mom, she would have had to go into a memory care facility,” she said. “Her safety was an issue. We couldn’t let her in the kitchen to do anything. She would forget to lock doors.”
Over the years, Butler helped make the same decision for her mother-in-law, who was diagnosed with Alzheimer’s, as well.
“She would get really frustrated trying to use the remote control or the telephone — just things we all take for granted every day,” Butler said of the challenges her mother-in-law faced as the disease took hold.
Then, in 2019, Butler helped her aunt choose a senior living home, too.
“It’s always difficult,” she said. “I think the hardest thing is when the parent or the spouse doesn’t really understand what’s happening. Because it doesn’t matter what you do, it’s going to be difficult. As much as you’d like for them to participate in the decision — and we’d like for them to do that — but it’s just not possible.”
That wasn’t the case for every one of Butler’s family members, but it’s a situation she sees often in the caregiving support group she now leads in Austin for other people having to make these tough decisions.
“They can say anything. They can cuss; they can cry; they can scream; they can laugh,” she described. “It’s not like getting married or having a baby where you do all the research and you get ready and prepared and informed — nobody wants to know about this until they have to.”
What is ‘memory care? ‘
Melissa Sanchez and Sydney Thomas, policy advocates with the Alzheimer’s Association, told KXAN decisions about where to move your loved one become “even more difficult” with an Alzheimer’s diagnosis because these individuals require extremely specialized care.
The women said a dementia diagnosis is more than just “forgetfulness” that can often come with the aging process. Experts have identified hundreds of different types of dementia, but according to the Alzheimer’s Association’s national research, Alzheimer’s disease is the most common form, accounting for as much as 80% of all dementia cases.
“Ultimately, your brain stops telling your body to breathe and your heart to beat. So, it’s really just a totally different set of services and care that’s required 24/7,” Thomas explained.
Sanchez and Thomas worry that sometimes marketing for different types of memory care can be misleading for families, as they wade through difficult decisions about where to place their loved ones.
“Despite many facilities advertising themselves as providing “memory care” services, many settings are not adequately staffed, trained or designed physically to meet the unique care needs of those with Alzheimer’s.”Melissa Sanchez, Texas Public Policy Director at Alzheimer’s Association
That’s one of the main reasons they fought for a law this past legislative session to provide more transparency for prospective long-term care residents and their families.
The state of Texas currently offers a special Alzheimer’s certification for facilities that meet additional safety, design, staffing and training requirements. The certification also requires families and facilities to work together to build a service plan unique to each resident.
Data from the Texas Health and Human Services Commission, which regulates long-term care facilities such as assisted living and nursing homes, showed over 600 of the state’s more than 2,000 assisted living facilities had at least a portion of their total number of beds meeting the additional qualifications — that’s nearly two-thirds of Texas assisted living facilities.
For skilled nursing facilities, there were far fewer: only 34 homes had some or all of their beds Alzheimer’s-certified.
Meanwhile, other facilities across the state market levels of memory care in their advertising or online. KXAN investigators found at least a dozen assisted living facilities with zero Alzheimer’s-certified beds that contained the term “memory care” in their name.
“It could just mean that they have locked facilities. It could mean that they have even more requirements, but the term isn’t specific,” Sanchez said. “It’s important to note that there aren’t any statutory requirements for facilities that market themselves as a memory care facility or offering memory care services.”
It’s an important distinction for these advocates because they say families often get confused about what level of care their loved one will receive.
What’s going to change?
Under the Texas Health and Safety code, facilities are required to mention their certification as a part of a lengthy disclosure statement regarding the treatment and care they provide to residents.
However, State Representative Mary Perez, D-Pasadena, said she had been hearing from constituents who still had concerns about what the different labels and levels of memory care meant. She first raised the issue in the 2019 legislative session, but her office didn’t see enough traction until this year after she brought legislation forward to instead require facilities “to prepare and distribute to each facility resident and to each person applying for services from the facility or the person’s next of kin or guardian a written notice disclosing
whether or not the facility has such certification.”
“Prior to this bill, it was really just a line item that a family member, hopefully, luckily, would catch as they’re going through the vast amount of paperwork that is required of, you know, putting a loved one in a facility. So, this will just be an explicit paper on whether they’re certified and what that means.”Sydney Thomas, Alzheimer’s Association
Senator Beverly Powell, D-Burleson, brought forth the companion piece of legislation, Senate Bill 383, that ultimately passed. Gov. Greg Abbott signed it on June 14 and will go into effect on September 1, 2021.
Thomas and Sanchez said the change will ultimately improve how they are able to hold facilities accountable.
“That way, as families are flipping through the forms, it’s something that’s clear and easily available for them,” Sanchez explained.
Why get certified?
At an April hearing where Rep. Perez’ bill was being discussed, the President and CEO of the Texas Health Care Association, Kevin Warren, testified in April that cost was likely the biggest hurdle that facilities face to getting certified.
“It’s a pretty extensive list of responsibilities,” he said. “The state of Texas doesn’t pay for that higher level of care. The state of Texas says, ‘Regardless of whether you are certified or not, we are still going to provide the same level of care as it relates to a Medicaid patient.”
That added cost, experts say, can often be passed down to the resident or their family.
After years of supporting other caregivers as they find a place for their loved ones, Sharon Butler can attest, “memory care carries more dollars with it.”
She said, in her experience, not every long-term care resident needs the highest level of memory care.
“It does help to know what you are dealing with before you start looking, and it also helps to start looking before you actually need it,” she said. “So, you really need to do your research, ask a lot of questions and visit as much as you can. Visit at off-hours. Go on the weekends.”
Is there a need for a separate “memory care” certification or designation, with more requirements than a standard facility but less than the current Alzheimer’s-certification? The chair of the House Human Services Committee, Rep. James Frank, R-Wichita Falls, brought up that point at the legislative hearing in April.
The Alzheimer’s Association believes that could be the next step towards clearing up confusion for Texas families.
Their association would like to see a more defined legal definition for the term “memory care” as a whole, and they have looked to Florida as an example. According to that state’s Bureau of Health Facility Regulation, facilities that advertise special care for persons with any type of dementia must meet additional requirements.
“We are going to look to potentially codify or clarify in statute, how memory carriers use the term memory care, memory care services, to really minimize the confusion for families, and reduce the stress that these families are already dealing with,” Sanchez said.
Sanchez said they will do their best to work with the long-term care industry to take these costs into account and find a feasible solution.
Still, she insisted that “quality of care for individuals with Alzheimer’s and dementia cannot come at that expense — cannot come at the cost — of what might be burdensome for nursing homes and facilities.”
Alzheimer’s certification in action
Silverado Barton Springs is one of the Austin-area facilities with the most Alzheimer’s-certified beds. Michelle Neumann, its Senior Administrator Specialist, said it can be difficult to explain how the certification actually sets them apart from other facilities.
“Every month we are introducing a new type of training. It does take quite a bit, and a lot of places just won’t go that extra step,” she said.
Neumann described how disappointing it can be to know that a few facilities may be adding confusion and stress for families during an already vulnerable time when they’re considering a long-term care home.
“Any place that is wheeling and dealing is not your place,” she said. “If they offer discounts, then you better expect there will be discounts in care, food quality or decreased staffing.
She told KXAN that in addition to environmental design considerations and staffing levels, they also have to show that their associates understand the different types of dementia and how to interact with those residents. Plus, they have to pay a fee owed and pass a health inspection. She knows not every person dealing with memory loss needs all of these specialized services.
“The general public is still confused about the terminology. So, hopefully, with the new bills that are coming out, it will help educate the public,” she said.
Neumann had some additional tips for families looking for a home for their loved one, especially with multiple diagnoses:
• Ask about 24-hour on-site nurses
• Ask about levels of care for any future diagnoses or declines in condition
• Ask to meet with multiple members of their team, not just a marketer
• Work with an independent Geriatric Care Manager to find the right placement
“With dementia, it will never be about the ‘real estate’ or the view or the size of the bedroom, it must be about the ability of the associates to engage them in living life to the fullest each and every day!” Neumann told KXAN.
More help 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
Photojournalist Ben Friberg, Graphic Artist Rachel Garza, Director of Investigations & Innovation Josh Hinkle, Digital Director Kate Winkle and Graphic Artist Jeffrey Wright contributed to this report.