To Manage Dementia Well, Start With The Caregivers

Enlarge this image Hanna Barczyk for NPR Hanna Barczyk for NPR

When Kate Sieloff's husband, Karl, began acting strange, she didn't know where to turn. Her hard-working, affectionate spouse was suddenly having fits of anger and aggression. He stopped paying the bills. Karl, 56 at the time, was an engineer at General Motors, where he'd worked for more than 40 years. But some days he didn't even show up for work, finding it too hard to get out of bed.

Because the problems were sporadic, most people in her life couldn't see what was going on. They told Kate, of Romeo, Mich., that she was imagining things. Doctors suggested that Karl was depressed and tried him on a variety of medications. When he began depleting their savings on impulsive purchases, and grew even more aggressive and violent, her son—a neurologist at the University of Michigan's medical center in Ann Arbor—insisted she bring Karl to his hospital for evaluation. Doctors there quickly diagnosed him with frontotemporal dementia.

For Kate, the diagnosis was a relief, but she still felt overwhelmed and needed help coping with her husband's illness. Getting his diabetes medications under control, and starting him on a mood stabilizer and a new antidepressant helped control his mood swings while restoring some of his loving personality.

But there is no drug that can prevent or stop the eventual progression of dementia. What she needed was something that could help make her day-to-day caregiving more tolerable, and strategies to help him when the confusion set in.

Things changed when she and Karl went to see Helen Kales and her team at the Program for Positive Aging.

Kales, a geriatric psychiatrist who practices at the University of Michigan, in Ann Arbor, has developed a behavioral approach to dementia care, one that puts the caregiver first and emphasizes training and support for them as much as for the patient. By teaching caregivers new ways to solve old problems, and to respond to their own needs in as well as those of their loved ones, the approach helps ease their burden while simultaneously improving the patient's experience. It's a bit like airplane safety rules directing passengers to put on their own oxygen masks before helping someone else.

One of the most important aspects of caring for someone with Alzheimer's and other dementias is understanding the diseases. The difficulty, Kales explains, isn't the memory loss, per se, but the behaviors that accompany it — everything from anger to petulance to violence to depression.

"We think about dementia as a problem with memory, but it's really behavioral," says Kales. "If you look at the medications being used, they're all psychiatric and used to managed behavior: antipsychotics, antidepressants, and sleep medication. Anxiety medication. We even use mood stabilizers."

Yet despite the millions of dollars spent on these drugs, she says, study after study has shown that their efficacy in treating dementia is typically quite small.

Rather, research suggests that it's far better to use behavioral and environmental approaches — ones that are sensitive to, and focus on, the needs of a patient, Kales says. "Particularly when you train family caregivers to deliver them in the home."

As more people survive into their 80s and 90s, there are more people living with Alzheimer's and other dementias than ever before. And the burden is one that primary-care physicians can't handle alone.

"We realized we needed to do something different," Kales says. "We just can't train enough physicians to provide dementia care. Instead, we need to take the daily treatment and management of these patients out of the hands of physicians and put it into the hands of the caregivers themselves."

It's an important move. Researchers have shown that the majority of people with dementia are cared for at home by members of their family. And that those family members, in turn, have higher incidence of stress and depression, as well as lower overall quality of life.

"The trick seems to be in training family caregivers to spot triggers of behavior and problem-solve around those triggers, to look for underlying causes and then creatively develop strategies," Kales says. But such approaches are rarely employed because there's no systematic way to teach people how to use them.

That's where Kales' DICE approach comes in. The method — an acronym representing the four main steps of the process — trains those who look after people with dementia to thoughtfully address behavioral issues. Those steps are: Describe a behavior, thinking about what happens and the context in which it occurs; Investigate its possible causes; Create and implement a plan to address the behavior; and evaluate the results to determine what worked.

No one had ever provided family caregivers with such a user-friendly method before, says Katie Brandt, the director of Caregiver Support Services for the Frontotemporal Disorders Unit at Massachusetts General Hospital, in Boston.

"[Kales] took theories about dementia care and behavior management and turned it into a step by step approach that people can apply," she says.

Here's how it can play out. Ideally, instead of giving someone a Valium because they're particularly cantankerous, caregivers would look deeper, analyzing the behavior to figure out why it's occurring. This can take extra effort when dealing with a patient who can't communicate in a linear way, or at all, about their experience. In this and other ways, it's not unlike caring for an infant.

As an example, Kales points to one of her patients, who came into the clinic with his daughter. The daughter mentioned that her dad had been extra ornery that morning, swatting at her as she tried to get him into the car. A physical exam showed that he was experiencing pain in one of his arms, so Kales sent him for an X-ray, which revealed a torn rotator cuff.

"Someone could cover that over with a medication, sedate the gentleman, and he'd continue to have the painful, pathological condition that requires treatment," she says.

Often, caregivers are given list after list of things they could do to make a house safer or a day of caretaking go more smoothly. But, Kales says, "None of those approaches are really effective for all people. The solution is really in the tailoring of the approach to the symptom, the situation, the caregiver."

Kales's clinic has had success teaching DICE to their caregivers. And for Sieloff, the difference has been life-changing. She's learned to better understand her husband's dementia, to help him stay calm and feel in control, and to create solutions for some of his more irascible moments.

With the program's help, she has taken control of her finances, applied for different kinds of assistance, and come up with practical ways to help Karl: a daily routine with limited choices; activities, such gardening, that hew to his interests; and small cards that say, "Please understand my husband has dementia," which she can hand strangers to de-escalate moments when his anger gets out of control.

Beyond that, working with people in the program has helped her own state of mind. Before her husband's diagnosis, family members and even some therapists had blamed her for Karl's problems, or believed she was making them up. "I needed to be absolved," she says. "For the longest time, people told me it was my fault and I felt so much guilt. I wasn't sleeping at night. Now I'm sleeping well."

The University of Michigan team hopes to make such help universally available. They're creating publications and online tools to help those outside their clinic, and just published the first pilot study of a web-based DICE tool called WeCareAdvisor. For the study, caregivers answered a series of questions online and the tool selected from nearly 1,000 strategies to create a behavioral "prescription" for them to try. If the new strategies didn't help, they ran through the process again, testing new approaches. They also received an informational resource on dementia and daily messages of encouragement and motivation. At the end of the month-long trial, caregiver distress had decreased significantly.

Brandt has seen similar results teaching DICE in the Boston area. "We know that care-giving is a threat to your health," Brandt says. "And caregiver stress not only impacts the quality of life of the caregiver, but also impacts the quality of life and quality of care of the person living with dementia."

After coaching caregivers in her clinic, she says that it appears to reduce stress, while helping them feel confident and more prepared for the challenges that pop up. Massachusetts General Hospital is now looking to adapt Kales WeCareAdvisor, which was developed primarily with caregivers of Alzheimer's patients in mind, for use in frontotemporal dementia.

Kales says that a printed DICE manual should be available for sale at the end of October and an interactive website—which will contain video modules and e-simulation trainings—at the end of November.

As far as Seiloff is concerned, the sooner the better. "I can't imagine where I would be without the DICE clinic," she says. "It's given me a whole new life. I'm trying to tell everyone I know about this."

Lauren Gravitz is a science writer and editor. Her work has appeared in Nature, The Economist, Aeon, Discover, The Oprah Magazine, and more. Find her at www.laurengravitz.com and @lyrebard.