Groups help dementia sufferers live fully

When his wife was diagnosed with Alzheimer's at age 57, Tom Allen decided to quit his job as executive director of a small nonprofit in 2010 to become her primary caregiver.

For Allen, 61, it was the beginning of a sometimes daunting journey that included finding part-time work as a janitor and spiritual adviser, joining a caregivers' support group, navigating the health care system, selling the house and moving to a senior citizen apartment building.

The move ensured that his wife, Julie Allen, is tended to when Tom can't be there, thanks partly to helpful neighbors.

Tom Allen is the embodiment of family members who become caregivers for the 100,000-and-growing population of Minnesotans with Alzheimer's and related dementia.

Julie was a full-time mom and self-employed nurse for years and never accumulated much retirement savings. Tom makes under $25,000 a year from part-time jobs. Their modest financial situation made it possible for Julie to qualify for some publicly funded medical and adult day programs a couple of days a week.

"Life gets simpler and simpler," Tom said. "Julie can't accommodate much activity. I'm home when I'm not working and I manage all that gets done. We watch a lot of TV together. As she loses more capacity I have to take on more. I have to manage the schedule and resources. I feel blessed because Minnesota has a great safety net, but it takes time to navigate.''

His story will become more common as baby boomers age. Nationally, one in nine people age 65 and older has at least the beginnings of the disease.

By keeping patients living independently as long as possible, ACT on Alzheimer's says that we can avoid some of the huge family and public costs of institutional living, which can run $10,000 monthly.

ACT on Alzheimer's is supported by health care and other businesses, community groups, the Alzheimer's Association and concerned individuals. It seeks to make Minnesota communities more sensitive to those suffering from dementia, and their families.

Allen, for one, is grateful for his two employers who know his situation and allow some flexibility in his hours.

This year, ACT on Alzheimer's will provide about two dozen seed grants of up to $18,000, funded by Blue Cross Blue Shield, the Medica Foundation and the Metropolitan Area Agency on Aging, to help Minnesota communities prepare for and support the growing number of people with dementia.

Some of their ideas will be identified as best practices that can be adapted and customized by other communities.

The Forest Lake Chamber of Commerce, for example, has produced a video about Alzheimer's and its implications for its business members and others in the community.

Grant recipients will work through the ACT on Alzheimer's "community toolkit" to assess support systems and determine additional actions to help improve the lives of residents with dementia and support their caregivers.

Seven communities already acting on Alzheimer's are: Twin Cities Jewish Community, St. Paul Neighborhoods and the towns of Walker, St. Louis Park, Willmar, Cambridge and Forest Lake. The works in progress include:

• A training session developed by the Twin Cities Jewish Community to teach area rabbis signals to identify dementia and ways to help intervene and offer support to families.

• St. Paul Neighborhoods is adapting a European program to develop a community of informed "friends" who can identify signs of dementia and how to assist those struggling with tasks such as shopping or traveling on a bus.

Allen is grateful for the help he gets in his community.

"I have a support group of people under 65, through the Alzheimer's Association of Minnesota, and they provided a social worker to meet with my family and help us plan,'' he said. "We also have a lot of 80-year-old women in our building who help me keep an eye on Julie when I'm working. And she goes to a day program in Hopkins through Augustana. She loves it. She sings in a choir and it gives her a sense of purpose.''

More information: www.ACTonALZ.org.