Sartell organization cuts fear, myths of dementia

by Mollie Rushmeyer

news@thenewsleaders.com

For many, there is both fear and misconceptions wrapped into the words “dementia” and “Alzheimer’s.” What the Central Minnesota Council on Aging and Dementia Friends Minnesota, an ACT on Alzheimer’s Initiative, are trying to do is educate people on memory loss through gatherings like the Coffee and Conversation at Country Manor in Sartell, which took place earlier this summer. Another free dementia education event, featuring Erin Bonitto, a nationally-known educator and dementia communication coach, and sponsored by the Sartell ACT on Alzhiemer’s, will be held from 9 a.m.-1:30 p.m. Thursday, Nov. 9 at the Sartell Community Center, 850 19th St. S.

Erica Frey of Sartell spoke at the summer event. She is a volunteer team coordinator with the Dementia Friends Minnesota in Sartell and the director of housing at Good Shepherd Senior Community. Frey herself started the Sartell division of ACT on Alzheimer’s Initiative, which originated in the United Kingdom. While she said she’s not an expert, she is determined to bring understanding to those dealing with dementia and anyone who is a caregiver to someone with dementia.

“We want this to be a global movement to educate,” Frey said. “So we can make a difference.”

Dementia is not a specific brain disease, she said, but rather a general term to describe a decline in memory and mental clarity to the point where the individual is no longer able to complete daily activities. The most common type of dementia is Alzheimer’s, which accounts for about 60 to 80 percent of dementia cases. Frey said there are about five million people in the United States with dementia, a brain disease that results in memory loss, confusion and sometimes personality change. However, it’s important to know, Frey said, dementia and how it affects each person who has it is as unique as the individual her/himself.

“If you’ve met one person with dementia, you’ve met one person with dementia,” she said.

With so many living with dementia and in particular the later stages in which the person has the inability to care for her/himself, the 15 million caregivers of those with the disease need support as well, she said. Ultimately, the goal of the awareness campaign is for people to take the knowledge they gain from the informational gatherings and turn it into action.

“We want people to ask, ‘How can I help?’ Especially with those caregivers,” Frey said.

Offering to go to the grocery store, either for the neighbor with dementia or the stay-at-home caregiver who cannot leave their loved one, bringing over a meal, driving them to an appointment or coming over to help with a difficult household task may be a few ways to help those in need.

“The possibilities are endless, but it all starts with an action,” Frey said.

Part of the teaching that ACT on Alzheimer’s Initiative, as well as the Sartell organization Central Minnesota Council on Aging, does is related to what the signs of dementia are versus what is considered normal aging.

Frey said a common symptom is for the person to revert to earlier memories and live out the day accordingly because those are memories that were ingrained and learned throughout many years. Whereas what they had for breakfast or what day of the week it is may be difficult for them to remember. Along those lines, she said she has seen people who may have grown up in a different country, speaking something other than English, who revert back to their birth language when they develop dementia.

They may revert to earlier memories and behavior, Frey said, but they are not children, nor should they be treated as such.

Because of how the disease progresses in the brain, complex thinking will decline quickly while feelings and emotions hang on the longest. Frey said to keep that in mind when trying to help someone with dementia. For example, someone with dementia may not remember a loved one’s name who comes to visit her, but she will know the feeling of love and joy at having had the visit. Similarly, the person with dementia may not recall the details of having an argument with a loved one, but she will remember how it made her feel – sad and frustrated.

The memory loss and changes in communication can be deeply sad and frustrating for the loved ones, too. Well-meaning family and friends trying to talk with the person with dementia may interrupt or confuse him/her by talking too soon after asking a question or asking too many questions at once.

Frey said the average dementia patient takes about 20 seconds to process and then respond to what is said or asked of him/her. Speaking slowly, getting on their level (if they are sitting or lying down), waiting for responses and only saying/asking one thing at a time is the best way to communicate.

Patience is certainly a virtue when it comes to working with them. Sometimes they will repeat themselves often, having forgotten their question was already answered.

“If it isn’t hurting anyone, let it be. Let them repeat themselves,” she said.

Some will become non-verbal at the more advanced stages of the disease, and Frey said just the personal touch of holding hands is so meaningful. Playing music for dementia and Alzheimer’s patients has also been proven to improve their mood and cognitive function.

“It’s the little things that matter,” Frey said.

Overall, Frey and Mary Bauer of St. Cloud, a community development specialist at the Central Minnesota Council on Aging, said people with dementia do have the ability to live a full and satisfying life. Considering 91,000 people 65 years of age and older live with Alzheimer’s and there are 249,000 caregivers in Minnesota, Frey and Bauer hope to give people with this disease and those caring for them, as well as local businesses and senior organizations, the information they need to provide the best possible care.