WILLMAR -- Michelle Mattson, Susan Rodgerson and their siblings have reason to know Alzheimer's disease and related dementias better than most.
Their father, longtime Willmar physician Donald Mattson, died last year at age 81 after a lengthy battle with Alzheimer's. They're now caring for their sister, Stephanie, 56, who has frontotemporal dementia, a rare form of dementia that strikes most often in middle age.
The Mattsons are honorary chairpersons of the second annual Willmar area Walk to End Alzheimer's on Oct. 6. They are also among the millions of Americans who have experienced the impact of Alzheimer's and related dementias.
"There are more and more people whose lives are impacted by this disease," Michelle Mattson said.
Last year's walk raised $60,000 for Alzheimer's research, services and advocacy. About 500 people are expected to participate this year and learn more about the latest in research and clinical trials and how to get involved with the cause.
Alzheimer's disease has become the sixth leading cause of death in the United States. As the baby-boom generation ages, the number of older adults with Alzheimer's and related forms of dementia is projected to swell far beyond the 5.4 million Americans living with it today.
Perhaps because of the scope of these numbers, many more people know what Alzheimer's is, the Mattsons said.
"People are now much more aware because so many people's lives are touched by the illness. Pretty much everyone has a story to tell about the disease," Michelle Mattson said.
Communities also are becoming better prepared to respond to it, she and Rodgerson said. When their father wandered miles from his home in Willmar, local law enforcement helped provide a monitoring bracelet so that he could be more quickly found if he wandered again.
The Alzheimer's Association, which has a regional office in St. Cloud, is invaluable in providing information and connecting families with the right resources, Rodgerson said. "They were very helpful."
One of the things the Mattsons learned: Although the disease has many features that are similar and predictable, its progression is often individual.
Each family's experience of dementia can be unique, Mattson said. Their sister, for instance, showed signs of decline in her mid-40s, almost 10 years before she was diagnosed with frontotemporal dementia. Because this rare form of dementia often develops in middle age, it can be confused with psychiatric illness, delaying an accurate diagnosis.
Services may not be easy to find for these individuals or for those with early-onset Alzheimer's, which also is rare and occurs before age 65.
Stephanie was diagnosed with frontotemporal dementia before her 53rd birthday, Mattson said. "It was extremely difficult to find places that were allowed to take someone that young."
Because so many people with Alzheimer's and related dementias are cared for at home -- sometimes for years -- by their family, there's also a critical need for family support and respite care, Rodgerson said.
One of the most important lessons the Mattsons gained was the value of planning and preparing for the what-ifs.
Be aware of the signs of Alzheimer's and related dementias, and start thinking about how to manage the disease, they urged.
"If I've learned something out of this, I've learned to look at the medical directive and have the conversation with the family," Mattson said. "So many of us are in denial about advance directives and planning for when you become incapacitated."
The family will be represented at the walk on Oct. 6 by Paul Mattson, son of Don and Marlys, who will be one of the speakers at the opening ceremony.
It's a role that would have been shared with Marlys Mattson if it hadn't been for her unexpected death Aug. 30 at age 82.
During the years their father had Alzheimer's, their mother was the glue that held the family together, Michelle said. "She was so on top of everything."
Marlys was honored that the family was chosen as honorary chairs of the event but she also didn't see herself as extraordinary, Michelle said. "She kind of battled through it all and kept everybody going."