There is no cure for people with Alzheimer’s disease or other dementia, and medical interventions for people with these conditions are limited. Some researchers have sought new ways to help these people maintain the best quality of life as possible even as their conditions progressively worsen.
To do this, a group of UCLA-led researchers shifted focus to investigate how personalized goal setting could be used to help people with dementia obtain what is important to them. A new study published in the peer-reviewed Journal of the American Geriatrics Society shows that this approach can improve the lives of these patients.
“One of the most devastating aspects of Alzheimer’s disease and other dementia is how few medical treatments are available,” said Dr. David Reuben, chief of geriatrics and Archstone Professor of Medicine at the David Geffen School of Medicine at UCLA, and the study’s senior author. “Focusing on personal goals, and planning care to achieve these, shifts the emphasis on what is important to patients and caregivers.”
The study not only revealed the promise of personalized goal attainment in dementia care, but also the importance of goal setting for caregivers, who are affected both emotionally and physically by their loved one’s illness, said Dr. Lee Jennings, an assistant professor of geriatric medicine at the University of Oklahoma College of Medicine.
“What we do during the office visit represents only a small percentage of our interaction with the patient,” said Jennings, the study’s lead author who began the project while on the UCLA geriatrics faculty and finished it at Oklahoma. “The rest of the time the patient’s care is with their family members or friends. We want to empower those caregivers to be able to take care of their loved one. We learned from our interviews that caregivers felt empowered to move forward with things they needed to do to help care for the patient.”
The researchers used a tool called “goal attainment scaling.” Participants had a diagnosis of dementia and a family member or friend serving as a caregiver. Patients and caregivers who received care in the UCLA Alzheimer’s and Dementia Care program were asked to set goals, and the research team used goal attainment scaling to assess how well the participants achieved their goals six and 12 months after setting them. The goals were then incorporated into their dementia care at UCLA.
About three-quarters of participants either reached or exceeded their goals during the study period. But, importantly, 84 percent of the goals were non-medical in nature, and one-third were focused on the well-being of caregivers. Goals of those with dementia included getting financial affairs in order and participating in activities outside the home. Caregivers’ goals largely focused on managing stress and maintaining their own health.
The health care measures that physicians focus on often are not meaningful to older people with multiple chronic illnesses, Jennings said.
“It’s less meaningful thinking about blood pressure and diabetes control when you’re facing an incurable neurodegenerative disorder,” she said. “We wanted to know if the health care we’re providing them is really helping them meet their individualized goals.”
Jennings will continue this research, but understands that while every person is different, physicians can still come to understand what is important to the individuals and their families. “I may not be able to cure them, but I want to be able to make their next day better,” she said. “That’s what is so gratifying about this work. We can make small differences that mean a lot to individuals.”
The challenge is accepting submissions through May 1, 2019