Many voices: Nearly 100 contribute input at community forums on dementia

WILLMAR - The small-group conversations got intense at a pair of local forums Wednesday on setting priorities for a community response to Alzheimer’s disease and other forms of age-related dementia.
Service pro-viders spoke of being in frequent crisis mode, struggling to help families find the right care for a loved one with Alzheimer’s.
Adult children described the difficulty of long-distance care-giving and balancing their own lives and careers with the needs of an aging parent with dementia. “We’re all stressed,” declared one woman.
And what about families who lack money and the wherewithal to navigate the system? Who’s going to help them?
Close to 100 people attended the two community forums, held Wednesday by the Willmar ACT on Alzheimer’s coalition to gather input that will help shape the future of living with dementia in Kandiyohi County.
“That’s our ultimate goal, to become a dementia-friendly community,” said Andrea Carruthers, coordinator of the initiative.
Willmar is among a handful of pilot sites in Minnesota for developing tools that support and educate everyone, from families and health care providers to clergy, employers and retailers, and readying the state for what lies ahead.
The growing number of older adults with memory loss means that most people at some point will encounter age-related dementia, either within their immediate family or someone they know, said Jenna Herbig, regional care coordinator with the Alzheimer’s Association in St. Cloud.
“It doesn’t just affect that person who’s diagnosed. It also affects their family and friends,” she said.
According to 2012 estimates, Kandiyohi County is home to 825 older adults with Alzheimer’s disease or related dementia. About 125 of them live alone.
How should the community respond, so that people receive appropriate care and the financial, social and human costs are less burdensome?
That’s the goal of the ACT on Alzheimer’s team, which has been meeting since the beginning of the year to identify issues and priorities and come up with a plan. The group’s work is being funded with a two-year grant from Blue Cross and Blue Shield of Minnesota and the Medica Foundation.
Carruthers said the coalition spent several months conducting interviews with a cross-section of families, providers and community representatives. Key issues that emerged were a need for caregiver support, education and overall public awareness.
The forums were a final step in collecting input that will help determine one or two specific priorities for the coalition to work on.
“What do we want to accomplish? You are going to have some say in that,” Carruthers said.
Coalition members will have a considerable volume of comments to weigh from the public forums.
At one table, people talked about how to address reluctance to screen individuals for Alzheimer’s and the need for a nonthreatening message. Elsewhere, participants wondered if Alzheimer’s could someday acquire the same marketing cachet as breast cancer.
A common theme was the struggle to connect people with available resources when they need them.
“We have a county rich in resources. We’re learning a lot of people don’t know how to access our resources,” Carruthers said.
Results based on the interviews and public forums will be compiled and shared with community this summer. A final plan must be submitted to the state in July, with implementation starting in early fall.
Carruthers urged the forum participants to spread the word and to consider volunteering with the ACT on Alzheimer’s team to help move the process forward.
“Numbers count. It’s people power,” she said. “There’s momentum in this. This is just the beginning.”