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Alzheimer's from A to Z: Taking care of patients and families

Man helping another, elderly man walk in the park
May 20, 2013

Editor's Note: This is the second of a two-part series on Alzheimer's research. Read "Part 1: Uncovering Alzheimers" here

Sandy Walker tries to get up earlier than her husband, Bob, just to have a few minutes to herself. Other than a daily 20-minute walk with her dogs, she has to stay near her husband, who has advanced Alzheimer’s disease, at all times.

“He’s very dependent, on me particularly. Even when my daughters are here, he wants to know where I am at all times,” Walker explains.

She describes a typical day at home. “I get him dressed and get him his breakfast. He watches TV – that’s absolutely the only thing that he does. It has to be one of four programs: Gunsmoke, Bonanza, M*A*S*H or The Andy Griffith Show. And he asks questions – one right after another.”

He’s a very different man from the person Walker married, a former salesman with an outgoing personality.

“No matter where he was, everybody was his friend,” she says. “And he was the go-to person. He always did our finances. He cooked.” While Walker worked nights as a nurse, he also split the childcare duties for their three children.

Since her husband developed Alzheimer’s, however, Walker has had to learn to manage everything, such as the family finances.

“I had never done it – I never had to. He used to say, ‘You should learn to do this,’ and I would say, ‘Why? I don’t have to,’” she says. “But now he can’t write a check. He doesn’t know what to pay or when to pay.”

Alzheimer’s disease creates difficult and painful transitions both for patients and their families. The progression of the disease is heartbreaking and stressful for everyone involved. While some researchers race to find better detection and prevention strategies for future generations, others are working to reduce symptoms and improve quality of life for patients and caregivers dealing with Alzheimer’s today.

Reducing symptoms

There is no cure for Alzheimer’s, so treatment is a matter of reducing symptoms or slowing down progress of the disease. There are a few medications on the market that can slow the progression of Alzheimer’s to some extent. These work by boosting the communication between brain cells by regulating chemical messengers called neurotransmitters. Although scientists believe a buildup of beta amyloid in the brain causes Alzheimer’s, drugs designed to break up the aggregates have not yet been successful.

Doctors sometimes also prescribe psychiatric drugs to minimize other symptoms of Alzheimer’s disease. These include antidepressants for depression and antipsychotics used off-label for treating hallucinations, agitation and aggression. Many times, however, these medications cause unwanted side effects.

“A lot of behavioral problems are managed with psychotropic drugs and there are side effects of those. If a patient has too high a dose there’s a danger of falling, which limits their mobility and independence,” says Evelyn Cesarotti, an associate professor in ASU’s College of Nursing and Health Innovation (CONHI). “As a nurse practitioner I’m looking at how I can reduce some of those medications so patients can be more mobile.”

Cesarotti and Johannah Uriri-Glover, a clinical associate professor in CONHI, study low-risk, non-pharmaceutical interventions that can help improve patient quality of life. For example, they have conducted some small, but promising studies using aromatherapy.

Alzheimer’s patients frequently have sleep problems that include difficulty falling asleep, waking during the night and shifts in sleep schedules.

“A lot of times individuals with Alzheimer’s disease are administered hypnotics to help them sleep. There are a lot of side effects for those, also. So we were trying to look at something that was non-pharmacological to help them sleep, and at the same time to help the family caregivers sleep. Because if the person with Alzheimer’s disease is up, then the caregiver’s up,” says Uriri-Glover.

Nighttime waking can be dangerous as well as disruptive.

“They may wander out, or they may turn the stove on, or have an accident,” says Uriri-Glover. “We had one client who woke up and he was in the kitchen putting cooking oil all over the floor like he was going to mop it.”

In a study funded by the Arizona Alzheimer’s Consortium (AAC), in partnership with Banner Alzheimer’s Institute, Uriri-Glover helped family caregivers provide warm baths infused with lavender oil. Lavender is an herb reputed to promote sleep and relaxation. The researchers monitored nighttime activity using watch-like devices called Actigraphs. They found that lavender baths helped patients fall asleep faster and sleep longer.

Aromatherapy proved helpful during waking hours, too. Cesarotti tested a blend of essential oils that included lavender and also other herbs shown to help with agitation in previous studies. She applied the oil like perfume to the wrists of patients in an assisted care facility. Although it did not help everyone, the treatment did allow some patients to reduce their psychotropic medicines.

She mentions one patient who was so agitated he would pace for hours. He couldn’t sit still long enough to eat a meal. Medications weren’t helping him. After aromatherapy treatment, however, the patient was able to join his family for a meal, allow caregivers to help him bathe, and generally participate in daily activities. His doctor was also able to decrease the dosage of his medication.

“It doesn’t work for everyone, but it did work for him and it was like a miracle overnight,” says Cesarotti.

The researchers note that other non-pharmaceutical interventions can improve patients’ quality of life, as well. Exercise, music and structured activities like games or crafts can be very beneficial for patients.

“We don’t just say, ‘Here you are, sit in this chair all day.’ Activity helps them get exercise and social interaction. They can stay in a more normal routine and sleep better at night,” she says. “We try to do the same things at home. They can engage in a lot of activities. They may not remember it or do it the way they did when they were younger, but it engages their minds and helps them to maintain quality of life for as long as possible.”

Walker has worked to engage her husband in activities he once enjoyed, but his declining abilities make it increasingly difficult.

“Up until a few weeks ago, I could take him to church, but he’s not really steady enough to go now, even with the walker,” she says. “Even though we’ve gone to the same denomination of church for 50 years and he was an assistant minister, he doesn’t know the service anymore. He’s totally lost.”

The hidden patients

This spring, Walker completed a 10-week program for family caregivers called CarePRO. Through group meetings and individual phone calls, the program helps caregivers of mid-to-late-stage Alzheimer’s patients to manage behavior patterns and reduce their stress. It was developed by David Coon, a psychologist and professor in CONHI who works with caregivers through the Alzheimer’s Association and Area Agencies on Aging.

Walker had attended other support groups in the past, but found they were not a good use of her limited free time.

“In one group especially, the whole time we were there everybody was crying. I didn’t like that. CarePRO sounded so much more positive and informative, instead of negative,” she explains. She was not disappointed. “I thought they were just great. I would recommend it for anybody.”

“I often say, ‘Until there’s a cure, there’s care.’ And the vast majority of care happens in the home,” says Coon.

Caring for a loved one with Alzheimer’s disease takes a toll on a person’s health and well-being. According to a report from the Alzheimer’s Association, people caring for a spouse with dementia are more likely than married non-caregivers to have:

• High levels of stress hormones
• Reduced immune function
• Slow wound healing
• High blood pressure
• Coronary heart disease

Caregivers also report higher levels of emotional and financial stress and higher rates of depression. Overall, the impact of caregiving resulted in an estimated $9.1 billion in health care costs in 2012.

“We’ve begun to realize that family caregivers are the hidden patient,” says Coon. He develops interventions that help caregivers and patients change their behaviors in ways that help both improve their quality of life.

CarePRO (Care Partners Reaching Out) focuses on caregivers for patients with mid- to late-stage Alzheimer’s and grew out of Coon’s involvement on the NIH-funded Resources for Enhancing Alzheimer’s Caregiver Health projects. EPIC (Early-Stage Partners in Care) works with people in the early stage of the disease and their care partners – the future caregivers of early-stage participants. Both programs were funded by the U.S. Administration on Aging.

Rather than just teaching specific techniques, the programs provide a framework for handling problems. Coon helps caregivers figure out what might be triggering a problem behavior and develop ways to address it that fit the situation.

“You have to remember that these individuals don’t just have Alzheimer’s disease. They have personalities, they have interests, they have histories that can shape why they do what they do,” he notes.

He recalls a situation in which a woman with Alzheimer’s would become extremely agitated whenever planes flew over the house where she lived. She and her family lived under the airport flight path and couldn’t afford to move, so they had to manage the agitation.

“When the family was building a memory book, it dawned on them that Grandma was a nurse during the war. Her agitation, wanting the blinds down, these kinds of things, were entering from her long-term memory,” he says.

The family developed ways to reduce the problem, which included playing music to drown out the airplane sounds; taking the grandmother outside, which seemed to calm her; helping her young granddaughter understand what was going on, so she wasn’t afraid; and teaching the family relaxation techniques to ease their stress.

In EPIC, the group leaders actively engage participants in discussions about future care, as well. They encourage both partners to identify additional people who can help out, so all the responsibility doesn’t fall on a single person. They also ask the early-stage participants to share their values and preferences, then compare those to how the care partners perceive them, to clear up misperceptions.

Both programs offer relaxation and stress reduction techniques, which Walker found particularly useful.

“There are times that you’re either going to take a step back and relax or you’re going to explode,” she says.

She prefers the mindful breath technique, which involves taking deep breaths and repeating a meaningful phrase. Walker has chosen, “Let go and let God.”

“I use it so many times when I feel like I just can’t answer another question that I’ve already answered 50 times in the last 10 minutes,” she says.

Healing the system

While CarePRO and EPIC work with caregivers on an individual level, changes on a system-wide level are needed to address the growing demand for Alzheimer’s care.

The Alzheimer’s Association estimates that the U.S. has about half the number of certified geriatricians than it currently needs. As the senior population continues to grow, the need for health care professionals who work with them will also grow. For example, the U.S. will need about nine times as many practicing geriatricians in 2030 as there were in 2010.

“Alzheimer’s is a very service intensive disease,” says Richard Caselli, a neurologist at Mayo Clinic. “With the rare exception of Banner Alzheimer’s Institute – which to my knowledge is unique in the country – nobody wants to get into the Alzheimer’s business. The cost of care far exceeds what Medicare and insurance cover. We need to devise a better healthcare delivery system, one that’s more efficient.”

He and colleagues at Mayo have developed a “roadmap” for patient-centered care that uses a value-based purchasing model. Under this model, reimbursement for services depends on clinical and service quality, not just a checklist of procedures.

Exploring new options for health care delivery will be an integral part of physician education in the new Mayo Medical School – Arizona Campus. All medical students on the new campus will complete a master’s degree in the science of health care delivery, granted by ASU’s College of Health Solutions. This new field of study was conceived to create and launch an educational program focused on patient-centered, safe and cost-effective health care system development. 

Before we reach the end of the road to a world without Alzheimer’s, delivering quality, cost-effective care is essential to the well-being of patients and their families. As a result of her CarePRO experience, Walker enlisted help from a professional caregiver paid for through the Agency on Aging. The caregiver, who spends eight hours a week at the Walkers’ house, has become “like a member of the family,” Walker says. Her assistance gives Walker time to do things out of the house, like grocery shopping.

“This woman comes in and watches Gunsmoke and Bonanza all afternoon, and listens to his repeated stories that keep getting farther and farther into the past,” Walker says. “I’m not even in the stories anymore. She listens to him and grieves with him.”

For people whose loved ones may have just received a diagnosis of Alzheimer’s, Walker offers some advice.

“My heart goes out to anybody that’s just starting through this. What we learned in the CarePRO class was to let other people help you, don’t try to do it alone and don’t feel guilty about it. Don’t think that you can handle it all by yourself because there comes a point that you can’t.”

Learn more at the AAC’s free public conference on May 24. 

Resources for patients and families:

• CarePRO

• Area Agency on Aging: Phoenix | National