Paula Peterson and Jill Wulff remember their mom's struggle with Lewy body dementia, the second most common type of progressive dementia after Alzheimer's disease. She was easily confused and experienced hallucinations and paranoia. Paula and Jill also remember the family's struggle when their mother experienced symptoms of the condition.
"If it's cancer, people bring over meals," Jill says. "People come and visit or take the person out. But that's not the way it is with Alzheimer's. Alzheimer's is a very lonely and misunderstood disease."
Paula, Jill, their dad and family felt like they were alone. But they knew others in their rural community of Roseau, Minnesota — population 2,627 — were in the same position. So they began a support group for people with loved ones with various dementias and have been meeting monthly for the past 17 years. Here they are given a confidential setting among friends who know and understand what they are going through.
To raise awareness, the group started a fundraising event called Walk to Remember, a nonprofit organization and annual event that now attracts 500 participants each year. The event raises funds for local families affected by dementia and for Mayo Clinic's Alzheimer's and dementia research.
"A lot of people come to us and are just exhausted from taking care of a loved one," Jill says. "Respite care is very expensive, and we help with things like remodeling a bathroom so a mother can come and live with her son or daughter, or we bring in community or professional education to our local facilities."
"The thank-you notes we get," Paula says. "You just cry. It feels so good."
The sisters support Mayo Clinic's research because they are confident a cure exists and Mayo Clinic represents one of the best institutions to make a significant discovery.
Mayo Clinic focuses on predicting who is at risk of developing Alzheimer's disease and dementia. This information will allow for early intervention — long before symptoms develop — so these individuals can benefit from eventual therapies that stop the disease in its tracks.
What powers this research is Mayo Clinic's unmatched expertise in biomarkers for Alzheimer's disease and dementia. Biomarkers are measures of the disease in early stages. Researchers detect biomarkers in brain neuroimaging studies, in blood or in cerebrospinal fluid from a lumbar puncture. Biomarkers are analogous to cholesterol being a measure of cardiovascular disease.
Physicians obtain cholesterol levels early in life to determine a person's risk of developing heart disease at a later point in time. Early intervention on that elevated cholesterol will prevent subsequent heart attacks and cardiac failure. Mayo Clinic is pursuing the same strategy to prevent Alzheimer's disease and dementia.
"We feel strongly about Mayo, and Alzheimer's is our passion," Jill says. "When we tell people part of their contributions is going to Mayo for research, they know there is hope."
All gifts make a difference at Mayo Clinic.
Jan. 18, 2017