(This blog is based on an interview with Mary Swenson, a member of Without Warning, Rush Alzheimer’s Disease Center support program for individuals living with young onset Alzheimer’s, and their family members.)
Nearly 5 million Americans are living with Alzheimer’s disease or related dementias, and estimates indicate there will be more than 13 million by 2050. However, many people who meet the criteria are not diagnosed, and public health officials believe that the fear and stigma associated with Alzheimer’s disease or related dementias may cause someone not to see their provider when they are experiencing symptoms.
Without a diagnosis, people have no access to available treatment, nor are they able to make plans for their future while they still can. As symptoms progress, they may limit interactions with others, leading to social isolation and depression. Family members and friends may not know how to help. Improved understanding and public awareness are the most effective ways to combat this stigma.
What follows is one caregiver’s story of how she and her husband responded to his Alzheimer’s diagnosis and the lessons they learned along the way.
Tom was a beloved fifth-grade teacher in Darien, Ill. Mary met Tom when she began her work as the school social worker. Mary describes Tom as a “creative, out-of-the-box kind of guy” who worked effectively with kids, some of whom would experience difficulties in a traditional classroom environment. Tom moved on to be an excellent administrator and negotiator as an assistant principal and business manager for the school district.
Tom struggled with alcoholism for many years. After he and Mary adopted their son, he got himself into Alcoholics Anonymous (AA) and maintained his sobriety until he died. He was active in AA and felt called upon to help others new to sobriety by regularly attending in-patient hospital detox groups and aftercare meetings. Tom welcomed any opportunity to speak about his experience as an alcoholic at meetings or with colleagues and friends.
Seek Medical Care
In 2006, Tom and Mary noticed changes in his thinking and memory. He was retired from the school district, but served as a consultant to the new business manager and eventually to another school district. It took him much longer than it had to figure out the salary schedule and other financial projections on the computer. He also had difficulty filling out deposit slips for their bank account.
Mary knew about Tom’s family history with Alzheimer’s disease, which had also affected Tom’s father, uncle and other family members on his father’s side. She reached out to the Rush Alzheimer’s Disease Center in Chicago and convinced Tom to go in for an evaluation.
Tom’s initial diagnosis was mild cognitive impairment. However, Tom’s memory and thinking skills continued to decline and a year and a half later, he was officially diagnosed in 2007 as having young onset Alzheimer’s disease. Tom was 60 years old. Mary describes the diagnosis as a “gut punch,” as if someone close to you had died. They had plans for their retirement and this diagnosis meant everything was going to be different. Tom became withdrawn, depressed, moody and argumentative.
Mary wanted to share Tom’s diagnosis with friends and family, but Tom wanted to keep it quiet. Even though he had experience talking about something as stigmatizing as alcoholism, he would only agree to share his Alzheimer’s diagnosis with his brother and a few others in Mary’s family.
‘You can sit around and wait for this thing to take over or have an adventure.’
Shortly after his diagnosis, Tom and Mary started attending Without Warning, the Rush Alzheimer’s Disease Center support program for individuals living with young onset Alzheimer’s and their family members. Mary and Tom were able to discuss their struggles in a supportive environment. Over time, Tom felt more comfortable talking openly about Alzheimer’s with others outside of their immediate family.
Live Your Life
Upon reflecting on his diagnosis and the time left he had with Mary, Tom created a bucket list of things to do before he died. Their adventures together included tandem skydiving, climbing the Sydney Harbor Bridge in Australia, visiting the Cook Islands, walking with grizzly bears in Alaska and going to Rwanda to see the gorillas in their natural jungle habitat. Tom also got to ride as a passenger in a race car at Chicagoland Speedway. Even later in the illness, when he had difficulty walking, Tom and Mary attended a taping of the David Letterman show where they met a couple of strangers which led to Tom, Mary, and their son going to the Indianapolis Motor Speedway, home of the Indianapolis 500 to watch the race!
Having something to look forward to helped them counteract what was going on with his disease progression. Mary said, “you can sit around and wait for this thing to take over or have an adventure.”
Plan for the Future
Mary was able to keep Tom at home as they had planned, however, Mary said it is important to have a backup plan just in case. In case one needs to make a critical decision quickly, it’s important to consider ahead of time of how to handle it and involve the person who has Alzheimer’s in the decision-making as much as possible. (RTI International’s National Alzheimer’s and Dementia Resource Center developed Advance Planning Guides written for people living with dementia and family caregivers.)
Care for Yourself while Caring for Someone with Alzheimer’s
Mary says the biggest lesson she learned came from CBS news correspondent Barry Peterson, who wrote about his wife's diagnosis with young onset Alzheimer’s disease in a book called “Jan’s Story.” When speaking to the Without Warning support group, Peterson said, “This disease is going to take your loved one, don’t let it take you, too.”
Mary had gained a lot of weight due to the stress of holding down a job, caring for their son who had significant health issues and caring for Tom. She knew this was a wake-up call and enrolled herself in a weight loss program that included classes, coaching sessions with a nutritionist and a support group. Mary dropped 50 pounds. She hired a caregiver for Tom and took time off a couple times a year to be with her family in North Carolina. As Mary says, “you have to recharge your batteries.”
Enroll in Clinical Trials
Tom believed in doing whatever it takes to find a cure for Alzheimer’s disease by participating in clinical trials. He enrolled in a phase III clinical trial that lasted more than a year. Unfortunately, researchers ended the trial because the treatment was found to be ineffective. This was difficult to hear but it did not stop Tom from enrolling in other clinical trials, including one at the very end of his life that involved a PET scan of his brain.
Leave a Legacy by Educating Others
Tom enjoyed public speaking and often presented alongside Susan Frick, social worker at the Rush Alzheimer’s Disease Center, to promote greater awareness of Alzheimer’s disease. When Frick decided to do a documentary about young onset Alzheimer’s disease featuring Without Warning families, Tom was eager to be a part of it. Sadly, Tom was dying by the time they raised enough money, but Frick still wanted them to be a part of it. Mary agreed because she knew how important this documentary was to Tom. Tom died within 12 days of the filming on June 22, 2015.
Elizabeth Gould, MSW, LCSW, is senior research public health analyst and co-director of the National Alzheimer’s and Dementia Resource Center. She is at RTI International in Research Triangle Park, North Carolina.