Groups help dementia sufferers live fully

  • Article by: NEAL ST. ANTHONY , Star Tribune
  • Updated: January 31, 2014 - 10:55 PM

Volunteer programs help dementia patients and their caregivers to focus on full lives.

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.’’

A common story

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.

ACT on Alzheimer’s, a volunteer-driven statewide organization formed several years ago, is not only studying the problem but also exploring economical and innovative initiatives to help caregivers, affected families and taxpayers.

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.

Practical economic issues

“It’s increasingly important to build support systems for people with dementia and Alzheimer’s,” said Olivia Mastry, a lead manager at ACT on Alzheimer’s. “The best way to do that is at the community level, with people who know it best. Helping those with dementia and their caregivers maintain their dignity and enjoy their lives is an important Minnesota value. There also are practical, economic issues. If we make it possible for people with dementia to live independently, we can keep them involved in our communities as volunteers, taxpayers and customers of Main Street businesses.”

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.

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