A program to lessen the burden of dementia

The Living Well with Dementia program at the UCHealth Seniors Clinic helps caregivers cope with the demands of caring for loved ones with the disease.
January 8th, 2020
Wife holds a sketch of her husband when he was 21 while he, who is living with dementia and now 80, sits beside her.
A drawing of Kent Hamm at his fraternity at age 21 helps wife Linda remember the man as he was. Photo by UCHealth.

On a sunny morning in mid-November, Linda Hamm rises from a couch in the comfortable apartment she shares with husband Kent in a Highlands Ranch retirement community. She steps into another room and returns with a framed drawing of a young man with neatly combed hair who looks into a mirror while adjusting his tie. Penciled in at the bottom of the picture are the words “Kent 12/11/60.”

“This is a fraternity picture of the man I married,” Linda says.

Kent Hamm, now 80, sits quietly in an armchair and gazes at the sketch of his 21-year-old self. Linda sets the picture down and retrieves a scrapbook stuffed with chronologically arranged photos and news clippings that document Kent’s life with family and friends in small-town Louisiana, as well as her own.

The thick binder is a work in progress: Linda continues to document the tangible memories of their separate lives and the partnership that spans nearly six decades. She and Kent met in 1960 as students at Louisiana Tech University in Ruston, married two years later, raised two boys and spent 45 years in the same home in a Houston suburb before retiring and moving to the Denver area five years ago to spend time with their four grandchildren.

“The scrapbook shows his life, my life, and our life together,” Linda says, spreading her hands across the pages.

Deteriorating stages of dementia

Linda is not merely reminiscing. She’s preserving memories for Kent, who for several years has been changing before her eyes, his memory eroding and his personality altering unpredictably. He has dementia, a progressive brain disease that causes cognitive decline beyond what is expected with normal aging. Dementia includes, but is not limited to, Alzheimer’s disease. An estimated 5.7 million people in the United States have the disease, and the number is expected to increase as the population ages.

Dementia is a challenge for Kent, who built a successful, half-century career in medical and technical equipment sales but is now mostly dependent on Linda and others to make decisions for him. But dementia has also caused great emotional turmoil for Linda in her role as caregiver – one she didn’t anticipate filling. That’s not unusual, said Dr. Bennett Parnes, medical director of the UCHealth Seniors Clinic on the Anschutz Medical Campus and an associate professor in the University of Colorado School of Medicine’s Division of Geriatric Medicine.

profile of medical director of the Seniors Clinic.
Dr. Bennett Parnes, medical director of the Seniors Clinic, Kent’s primary care physician, helped to launch the Living Well with Dementia program. Photo by UCHealth.

“It’s hard for caregivers who have known this person who is in many ways a different person,” Parnes said. “Psychologically it is really challenging.”

Living with dementia

Today, though, Linda and Kent have a helping hand from the Seniors Clinic through a program called Living Well with Dementia. The idea, based on a model called Care Ecosystem developed at University of California San Francisco, connects caregivers to a team of providers trained to address the medical, pharmacological, psychological and social problems caused by dementia.

The Living Well with Dementia program receives funds from Comprehensive Primary Care Plus (CPC+), a Centers for Medicare and Medicaid Services effort that encourages primary care practices to develop innovative ways to improve patient care. Parnes said the support has allowed the Seniors Clinic to deliver integrated care to patients, and their caregivers, living with dementia.

profile shot of Living Well with Dementia program's care team navigator.
The Hamms receive regular help from Adreanne Brungardt, care team navigator for the Living Well with Dementia program at the UCHealth Seniors Clinic. Photo courtesy of Adreanne Brungardt.

The linchpin of the Care Ecosystem approach is the care team navigator, who receives training in the fundamentals of dementia and maintains regular contact with caregivers and fellow team members. At UCH, that’s Adreanne Brungardt, by trade a neurologic music therapist, who currently works with 43 families referred by their primary providers (the program has served 65 over the past year).

Battling burnout as a dementia patient caretaker

Caregivers referred to the program initially complete assessments, Brungardt said. She then makes a call that begins with a straightforward but lighthearted question aimed at understanding each caregiver’s specific story: “What made you say yes to me bothering you?”

Brungardt then makes a home visit – the Seniors Clinic is the only Care Ecosystem implementation site to include this feature – which helps her establish a trusting relationship with caregivers and patients. Monthly phone calls follow, with Brungardt listening to specific concerns, suggesting possible solutions and routing questions to other team members for additional help and advice. The program team also meets weekly to discuss patient and caregiver issues from different perspectives.

The overall goal is to help caregivers avoid emotional exhaustion and burnout, Brungardt said. In turn, healthy and better equipped caregivers can help their loved ones more effectively.

Unpredictable challenges with dementia

That’s no easy task, Brungardt added. People with dementia exhibit new behaviors over time, such as irritability, paranoia, and difficulty in ordinary tasks. The limited number of medications available treat only symptoms or occasionally slightly slow progression and have a host of side effects.

“There is no miracle drug for dementia,” Brungardt said. “It is a disease in the brain that doesn’t just change memory.”

For example, a seemingly unremarkable event, like having a visitor, may trigger severe agitation in a person with dementia and spike stress and frustration in a caregiver. Loved ones looking for a solution often must find ways to communicate differently with their loved ones, Brungardt said.

“The question for caregivers is, ‘how do I change the environment and my own responses?’” she said.

Early signs of dementia

It’s a challenge that resonates with Linda Hamm. Parnes diagnosed Kent with dementia two years ago, though he and Linda both say that in retrospect there were earlier signs of deterioration. For example, near the end of his last job with a Pennsylvania-based company for whom he worked 25 years, he began having trouble tracking his sales orders – something previously unheard of in that job or during stints with industry heavyweights like Fisher Scientific and GE.

“It bothered me. I knew something was going on,” Kent said.

Still, after the move to Highlands Ranch, Kent didn’t want to stop working altogether. He says it was in his blood; his dad sold clothing in Alexandria, Louisiana “for years and years and enjoyed it. I knew I wanted to go to work at six years old.”

He got a job at outfitter giant Cabela’s Lone Tree outlet, working in several departments and finally as a greeter, but he says he had trouble remembering his schedule. Linda noticed that he began driving very slowly, a worrisome sign but one she chalked up to unfamiliarity with a new city. But she was more hard-pressed to explain his decision to cede responsibility for their finances to her.

“I was never involved in the finances,” Linda said. “He had taken care of everything and was as sharp as a tack.”

A couple smiles together, the husband who is living with dementia.
With assistance from Brungardt and the Living Well with Dementia team, Kent and Linda hope to stay in their Highlands Ranch retirement community as long as possible. Photo by UCHealth.

New abnormal after dementia diagnosis

The diagnosis of dementia provided an explanation for the changes but also ushered in a new time of uncertainty. Linda began to see that the troubling changes weren’t going to subside.

“It’s been a journey,” she said. “At first, it seemed like every day was a new problem. It was very frustrating for both of us.”

“One of the hardest things in dealing with dementia is that it is a progressive disease,” that exacts an inexorable toll on patients and can wear down caregivers, Parnes said. “You don’t first go through a rigorous training course on how to do it, you are just thrown into it. It’s easy to get burned out,” he added.

Kent’s dementia also intertwined with other problems. Parnes initially prescribed an anti-anxiety medication that Linda said settled Kent’s emotions. However, he has back problems caused by spinal stenosis, and when he worked on his physical therapy, he began falling. Linda checked with a pharmacist with the Seniors Clinic who told her a side effect of the medication was weakness in the legs.

At Parnes’ direction, she weaned him off the medication, but that led to a personality change. He began resisting doing his exercises, brushing his teeth and shaving. Linda’s frustration rose with each refusal.

“I was dealing with [the question of] was it more important to be his wife or his mother,” Linda said. “Things like that were getting in the way of our relationship.”

Caring for a loved one with dementia

Parnes helped her through that as well, suggesting that Linda put his toothpaste on his brush and bring him his shaving razor instead of fruitlessly telling him to start the tasks himself. It wasn’t easy advice to follow, she conceded.

“At first I was angry that he wasn’t doing it on his own,” she said. “I don’t say anything now. It’s part of getting ready in the morning.”

The demands of caregiving, however, took a personal toll. “I’ve given up my life and that was very difficult at first,” Linda said. She had to abandon Bible study classes and committee work she participated in at their retirement community. Kent is uncomfortable in large groups, so they avoid parties, another painful change.

“He used to be a wonderful host,” Linda said, as Kent listened. “We would have large parties in Houston, then would wash the china and silver together before we went to bed.”

The parties were in their 45-year residence in tiny El Lago, Texas, a short drive from NASA. Neil Armstrong, Buzz Aldrin and dozens of other astronauts called El Lago home while the Hamms lived there.

“It was an exciting place for our boys to grow up,” Linda said. “We loved that home. We loved the memories of that home.”

couple looks at a scrap book that helps the husband, who is living with dementia, remember things.
A scrapbook of photos and clippings Linda has put together is another spur to memory for Kent, who has dementia.

Creative problem solving

While Linda worked hard to care for Kent, she said that for some months she felt that they were on a merry-go-round, with one challenge following another. For example, his personal trainer at the retirement home moved. That led to another fall and sent him back to a community physical therapist.

“I was so frustrated,” Linda said. “I like everything to be smooth. We’d get over one thing and something else would crop up.” She struggled to see Kent’s path forward.

The referral to the Living Well with Dementia program helped to change that. Brungardt called her to explain what would be involved, then made her home visit, which put Linda at ease.

“She made me feel very comfortable,” Linda said. “I have confidence in what she says because she listens and asks questions.”

Brungardt’s monthly calls are far more than chats. To illustrate, Linda pulled out a legal pad with a page full of questions she had readied for their most recent conversation. They ranged from financial queries to dietary issues to voter fraud – Kent had been contacted because his signature on his last ballot didn’t appear to match with earlier ones. Linda covered the page with notes gleaned from Brungardt.

“So many things that you just don’t think about keep popping up,” Linda said. “Before we hang up, I have a date on my calendar for the next call.”

Finding the confidence to handle dementia

With Brungardt’s help, Linda said she continues to be more accepting of the reality of Kent’s dementia. For instance, she used to try to jump in and correct him when he told stories that got events out of order. Brungardt helped her to let that go.

“She said what difference does it make if the facts aren’t right?” Linda recalled. “I can stay in his conversation. I don’t want him talking to a wall.”

A center that provides assisted living, skilled nursing and memory care is down the street from the retirement community, but Linda said she and Kent intend to stay at home as long as possible. She is much more confident that they can meet that goal because of the Living Well with Dementia program.

“I am hopeful because we have a support system that will help us with the problems,” Linda said. “I have told Adreanne, ‘You have given us hope that we can make it through this.’”

About the author

Tyler Smith has been a health care writer, with a focus on hospitals, since 1996. He served as a writer and editor for the Marketing and Communications team at University of Colorado Hospital and UCHealth from 2007 to 2017. More recently, he has reported for and contributed stories to the University of Colorado School of Medicine, the Colorado School of Public Health and the Colorado Bioscience Association.