Research participant Mary Lewandowski, left, WSU facilitators Christina Low and Chad
Sanders, and research participant June Vereecke.
for memory groups
Psychology researchers at WSU are seeking people with memory problems and their spouses or other family members to participate in treatment and intervention groups in Eastern Washington. Groups are tentatively planned for Spokane, Tri-Cities the Pullman/Moscow area and Lewiston, depending on interest.
The goal of the project is to help people maintain their independence as long as possible, decrease caregiver burden and increase social support networks for both clients and their families or caregivers.
Maureen Schmitter-Edgecombe, professor of psychology at WSU Pullman, said eligibility criteria include being 50 years old or older, reporting memory problems for a minimum of six months or having been diagnosed with mild cognitive impairment.
Participants must also have a spouse, other relative or friend who is willing to participate as a care-partner. Each group will consist of four to six dyads.
One of the key interventions will be learning to use a memory notebook, but participants also will work on stress reduction techniques, communication skills, problem solving, socialization and a range of other topics related to healthy living and the aging process.
For more information, call 509-335-4033, ext. 1
PULLMAN, Wash. – A cure for dementia continues to be elusive. But WSU researchers say education and support, along with a simple tool – a memory notebook – could be key to giving those with memory loss a sense of control and prolonged independence.
“It’s not a cure; it’s a tool,” said Mary Lewandowski, a caregiver who has participated in a WSU research group with her friend, June Vereecke, since May 2011.
Faithful use improves memory
Lewandowski and Vereecke form a dyad, or team, and meet with four other teams and two group facilitators at least once a month to socialize, problem-solve, set goals and reinforce habits for working with the notebook.
“The goal is to live on my own longer,” said Vereecke, a vivacious redhead who will turn 80 in June. “If you are faithful and use the notebook every day, you start to remember better. The more you write, the more you remember.”
Like many older Americans, Vereecke has memory problems; but at this point they aren’t incapacitating. If she forgets where she puts something, she said, she usually can retrace her steps to find it.
“That’s not Alzheimer’s” she said and laughed. “That’s healthy.”
Vereecke knows the signs. She cared for her husband, who did have Alzheimer’s for 16 years, until he died in 2009.
Though funded by the Alzheimer’s Association, the study potentially could help people all along the memory-loss continuum, said WSU Pullman psychology professor Maureen Schmitter-Edgecombe. She and WSU Spokane professor Dennis Dyck are in year two of a three-year, $320,000 research project to determine the effectiveness of learning to use a memory notebook and other coping strategies in a multifamily group setting.
Significantly, in this study, both the person suffering from mild cognitive impairment and a care partner or support person are equal participants.
As part of the study, the researchers intend to track at least 40 patient-caregiver teams over the course of one year. Half will receive treatment in a multi-family group format and the other half will be the control group. Each multi-family group will consist of between four and six teams or dyads.
The multi-family group is being adapted and integrated with the memory notebook and related cognitive strategies, Dyck said, because his earlier research and other studies have shown it to be effective in helping patients and families with disabilities from psychiatric disorders and brain injury to cope more effectively.
A group in Spokane started meeting in August 2012 and will finish next year. The Pullman group, which Lewandowski and Vereecke are part of, is scheduled to end in April. New groups are planned for Lewiston, Spokane, the Tri-Cities and Moscow/Pullman this fall, depending on interest. (See accompanying article for more information.)
Already, Schmitter-Edgecombe said, the research group is seeing some encouraging signs. For instance, in one problem-solving simulation to test participants’ ability to remember to take medication on schedule, those who had been part of the intervention improved their scores, while those in the control group did not.
Helping families cope
Schmitter-Edgecombe and Dyck recently were selected to give a presentation about their research at a meeting of the Alzheimer Association Research Roundtable. In February, President Barack Obama announced creation of a National Alzheimer’s Plan and asked Congress for $80 million in new money for research in 2013.
Obama called not only for better treatments, but for more research into how to help overwhelmed families cope. This study addresses both of those goals.
Using participant feedback as well as cognitive testing and physiological markers, researchers are trying to determine if providing early intervention and support services to both the primary client and a care partner can improve or maintain cognitive function while also reducing the stress and physical toll that dementia can exact on those afflicted and their care partners.
It’s a huge problem. When MetLife surveyed baby boomers in 2011 about their greatest fear, memory loss and cancer ran neck and neck, far ahead of heart disease, stroke or other illnesses. While cancer is still a devastating diagnosis, cancer treatment has come a long way in the past 50 years.
Treatments for memory loss have not. According to the National Institutes of Health, more than 5 million people in the U.S. have Alzheimer’s or related dementias, and that number is expected to double by 2050.
Remembering to remember
According to Schmitter-Edgecombe, there is still no medication that has been proven to significantly slow or reverse memory loss. Her research focuses on better understanding the memory process itself so that effective interventions or external aids can be created to help improve memory and delay difficulties associated with cognitive impairment.
One of the first things to go, she said, is the ability to “remember to remember.” That’s why taking medications on schedule or making it to a doctor’s appointment can be such a challenge.
Writing in the notebook creates what Lewandowski calls a “second brain.” Knowing she has written down what she needs to remember helps her feel less stressed, she said.
That might sound simple, but another early casualty of memory-related cognitive impairment is the ability to learn new things. That’s why it’s important to start using a notebook before the cognitive impairment makes it impossible.
Multiple kinds of memory
Getting through the day requires multiple kinds of memory, most of which are addressed in one way or another by writing in the notebook. Keeping a running journal, perhaps writing every hour, helps people with episodic memory – remembering what they did, who they talked to and what was said.
The daily calendar and to-do list helps people keep track of what they need to do in the future, strengthening their prospective memory. Sections on family relationships, health history, finances and recipes, for instance, help people keep track of specific content that they don’t want to lose.
“Even though this is an external aid, it’s also something that requires individuals to continue to use their cognitive abilities. And that may act to reinforce some of their memories,” Schmitter-Edgecombe said.
Stress, depression and impairment
The more things you try to remember, the more you overload your memory circuits, said Lauren Warren, a clinical assistant professor who is working on the study. By using a memory notebook as an external aid, not only does the stress go down, but participants are reporting that they are remembering more.
Which is one of the interesting aspects of the study, Warren said – looking at how stress affects cognitive impairment and vice versa. A third factor in the mix is depression, which sometimes seems to precede cognitive impairment.
“There’s a lot that we still have to learn about the interplay of those three elements,” Warren said.
Groups share holistic perspective
In the groups, which are facilitated by WSU doctoral students Chad Sanders, Christina Low and Lora Wu, participants are guided through carefully structured meetings that address memory loss from a holistic perspective.
At each meeting, participants reinforce what they’ve already learned about the notebook and learn a little more. But they also spend time socializing, setting goals, problem-solving, learning stress reduction techniques and discussing a host of other topics related to the aging process and healthy living.
“As a clinician, I’ve benefitted from being part of the group, as well,” Sanders said, and laughed.
The Pullman group will end its formal meetings in May, but the hope is that group members will decide to keep meeting on their own.
“It’s hard to go through a year of memory notebook and then walk away,” he said.