Monthly support group helps Alzheimer’s patients’ caregivers
There are 28,000 people in Utah living with Alzheimer’s disease who are looked after by 140,000 unpaid caregivers, according to the Alzheimer’s Association’s 2014 study about Alzheimer’s disease facts and figures.
That’s why the Utah Chapter has created free monthly support groups throughout the state and Southeastern Idaho, said the chapter’s program director Kate Nederostek.
"These caregiver support groups are held in person, but we also hold support sessions by telephone," Nederostek told The Park Record. "The reason we do that is because not everyone can get to a group session due to bad weather, distance or the fact that they can’t leave their loved one."
A support group just started in Park City and it meets every third Wednesday of the month at the Applegate Homecare & Hospice, 750 Round Valley Dr., Suite 204, at Quinn’s Junction from 2 p.m. until 3 p.m.
Like the other groups in the state, the Park City group is designed to provide education about Alzheimer’s disease to the community and provide support to those who are caregivers, Nederostek said.
"We typically have the newcomers introduce themselves and share why they have come to the group," she said. "Then we introduce ourselves."
After that, the conversation begins.
"It usually starts right away with questions that people need to ask," Nederostek said. "Sometimes someone will ask about an issue or see if others have given through situation. Sometimes someone will give an example of a recent issue that someone dealt with in the past month.
"Although we’ve all been affected in some way or another, every situation is a little different and sometimes that insight will help with other situations," she said. "So there is a lot of sharing of information."
The discussions are open and anyone can participate.
"I found if you set monthly topics, some people feel like they have to wait to ask their questions," Nederostek said. "More often than not, people just want to learn more about the disease and what to expect in the future."
One of the biggest issues is that the caregiver has a hard time understanding that the person who has the disease has changed.
"The caregivers are expecting their loved one to function how they’ve functioned all these years, when in reality, the loved one loses the understanding about how to do something like cooking dinner or even tying their shoes," Nederostek said. "Caregivers will talk to their loved ones like they have over the past 20 years, and they get frustrated when they aren’t getting through and arguments ensue."
Sometimes the questions are simple, like the difference is between Alzheimer’s and dementia.
"Alzheimer’s disease is one form of dementia," Nederostek explained. "Dementia in itself isn’t a disease, but an umbrella term that describes symptoms. When doctors diagnose dementia, it should be accompanied with what kind of dementia it is, such as Alzheimer’s or vascular dementia."
Being a caregiver is a hard and sometimes lonely job, Nederostek said.
"When they come to the group, they learn that they’re not alone," she said. "They can learn from others who are in the same situation. It puts people at ease."
The Alzheimer’s caregiver support group is only one aspect of Alzheimer’s Association’s mission.
The other services include an array of education [programs and the Alzheimer’s and Dementia Caregiver Center, a website — alz.org/care — with more than 70 pages of information and easy access to resources such as online caregiver training, tips for daily care and information about behaviors, safety and much more.
"The Alzheimer’s Association is a national organization based out of Chicago and is the world’s leading voluntary health organization in Alzheimer’s care and research," Nederostek said. "There are about 80 chapters across the country. The Utah Chapter was formed in 1982 to provide support and resources for those affected by Alzheimer’s disease and dementia."
For more information about the Park City Alzheimer’s caregivers support group, visit alz.org/Utah or call 801-265-1944. There is also a 24-hour help hotline 1-800-272-3900 .
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