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A participant in the U's dementia classes.

Participants during the weekly sessions at the U's Family Caregiving Center learn about the intricacies of long-term dementia care.

Putting a face on dementia

A weekly University group puts Alzheimer's sufferers in a teaching role

By Brigitt Martin

June 26, 2007

When we hear the word "epidemic," media warnings about killer bugs such as avian influenza or SARS tend to come to mind.

Not so for Wayne Caron, an assistant professor in the U's Department of Family Social Science at the College of Education and Human Development. Caron warns of an upcoming epidemic of chronic illness brought on by increasing longevity. As a licensed marriage and family therapist, Caron's research and interests focus on the way that families cope with chronic illness, particularly demential illnesses such as Alzheimer's disease. The Alzheimer's Foundation of America estimates that one in 10 persons over age 65 and nearly half of those 85 or older have Alzheimer's disease.

"We are entering a time when virtually all families will be care-giving families," Caron warns.

Every Saturday morning for the past six years, Caron, his team of volunteer students, and a part-time employee have welcomed to a Twin Cities campus classroom in St. Paul members of the community who have dementia and their family caregivers--on average, upwards of 25 participants each week. The mission of the University of Minnesota Family Caregiving Center (UMFCC), as this weekly gathering and related programs are known, is to prepare for a future epidemic of chronic illness by increasing knowledge of family care.

The center provides a collaborative learning community in which persons with dementia, their caregivers, students, and professionals can teach and learn from each other. The interactions and support that have emerged from the community have led to new insights and ideas into the nature of dementia and its care, Caron reports. The weekly sessions also offer an opportunity to develop and test innovative services not offered elsewhere.

"Medicare excludes people with dementia from receiving counseling or psycho[logical] care," notes Caron. "I chose this field because of this gap and to help prepare for the crisis in health care that's coming."

Teaching the teachers

Since 1999, the Saturday sessions have begun with a lecture by Caron or a volunteer from the professional community. Although Caron jokes that this portion of the program is "self-indulgent," Carmen Graumann, a licensed associate marriage and family therapist and the center's only paid employee, describes its value: "A place that is also about learning lifts the human spirit."

Carole Nimlos, a Saturday morning regular whose husband suffers from Alzheimer's, agrees. "I've learned a lot about the disease from Dr. Caron and how it affects us and our relationships," she says. "When my husband was able to attend, he always said he enjoyed the lectures--even if he couldn't remember them. I think they made him feel like he still could learn and had something to offer as a person."

Following the lecture, the group divides into subgroups of family caregivers and of those who suffer from dementia. During this time, individuals share stories about their personal experiences, feelings, and concerns that range from coping with multiple illnesses to estate planning.

"The [U's famiy caregiving] program offers hope that an Alzheimer's diagnosis doesn't mean that life is over," says Carole Nimlos.

"It sure feels good to find people who understand what your journey feels like and share similar experiences," says Nimlos.

Beyond such support for caregivers, the interactive experience allows those with dementia to feel normal and to not worry about mistakes they may make because of the disease, Caron explains. It also allows the participants to be important to others and to help those who may be more impaired. "I think you're looking at a context where who you are is more important than the problems you have," he adds.

Because of Caron's conviction that "care-giving can be learned but not taught," he developed an education model in which students are trained by the people they are supposed to help. After all, who knows more about what it's like to suffer from dementia than someone who is experiencing the disease? Students benefit from face-to-face interaction with caregivers and dementia sufferers and help facilitate the subgroups.

Undergrad Kathleen Beddow says that attending the Saturday meetings puts a face on dementia and on aging.

Reaching more Minnesotans

Beyond its Saturday sessions, UMFCC provides facilitated family consultations to those who have been diagnosed with dementia and any family members affected by the diagnosis. Online and in-person programs help families through seven different phases of the disease.

Learing more

To learn more about the Family Caregiving Center at the University of Minnesota or read more about current research on dementia, see the College of Education and Human Development.

The center has few financial grants, and owes its existence to annual University support, private donations, and the volunteers who give their time. In its 2006 Annual Report, Caron says that the center's "present level of activity is not sustainable at current funding levels, and our plans for growth require establishing new sources."

Nevertheless, he concedes that the UMFCC's "growth is not measured in numbers of dollars, but in increased understanding and capacity to reach out to those who need help and guidance." One way the center is extending its reach is through virtual support groups that reach far beyond campus boundaries.

"In five years," he says, "we hope to be more present in the community and the state, to reach more families. We now touch about 50 families, but more than 100,000 people in Minnesota have dementia."

Nimlos agrees that, to the thousands of Minnesota families caring for a loved one with Alzheimer's or another demential disease, collaborative learning environments like the center's provide life-saving support services.

"The program offers hope that an Alzheimer's diagnosis doesn't mean that life is over," says Nimlos. "It showed me that there are still many avenues of satisfaction while taking this journey.