Following his diagnosis, Tom and his family embarked on long-awaited adventures, including climbing the Sydney Harbor Bridge in Australia. Photo from Mary Swenson

(This blog is based on an interview with Mary Swenson, 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, an individual will not have access to available treatment or make plans for their future while they are able to do so. 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 the stigma. Here 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.

Meet Tom and Mary

Tom was a beloved fifth-grade teacher in Darien, Illinois. 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 to help others new to their sobriety by regularly attending in-patient hospital detox groups and after care 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 on his computer to figure out the salary schedule and other financial projections.  He also had difficulty filling out deposit slips for their bank account. Mary knew about Tom’s family history with Alzheimer’s disease that 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 as having young onset Alzheimer’s disease in 2007. Tom was 60 years old. Mary describes the diagnosis as a “gut punch” like someone close to you has died. They had plans for their retirement and this diagnosis meant everything was going to be different. Tom became withdrawn, depressed, moody and argumentative. 

Talk Openly

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 with his brother and a few others in Mary’s family. 

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 with others outside of their immediate family. 

Live Your Life

Upon reflecting on his diagnosis and the time he had with Mary, Tom created his 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 Africa 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 Alzheimer’s disease. 

“You can sit around and wait for this thing to take over or have an adventure,” Mary says.

Plan for the Future

Mary was able to keep Tom at home as they had planned; however, she says it is important to have a backup plan just in case. If you need to make a critical decision quickly, consider ahead of time of how you are going to handle it and involve the person in 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 Barry Peterson, CBS news correspondent, who wrote about his wife's diagnosis with young onset Alzheimer’s disease in a book titled "Jan's Story.” When speaking to the Without Warning support group, Barry 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 with 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. 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. Tom enrolled in a phase 3 clinical trial that lasted over a year. Unfortunately, the 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 Susan 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 Susan 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.

doctor speaking with patients

Attention Professionals Serving Older Adults and People Living with Dementia

RTI’s National Alzheimer’s and Dementia Resource Center, funded by the Administration for Community Living, produces a variety of publications that are available on the website including toolkits, consumer guides, handbooks for professionals, resource lists and evaluation measures. The NADRC also hosts 10 webinars per year on current dementia related topics. Recorded webinars are available on the NADRC website.