BROOKINGS – Caring for someone with Alzheimer’s disease or other types of dementia can take a toll on the caregiver. The Alzheimer’s Caregiver Group can help, said Lisa Miller.

Miller is the facilitator for the group that has met at 10 a.m. every third Wednesday of the month since October in the basement of First United Methodist Church at 625 Fifth St. 

“It’s a place for the caregivers to seek some support and some time away. Just to talk with others who either have gone through or (are) currently going through the same kind of struggles that they are,” Miller said.

“As a nurse in this community, I have just seen so many family members so distraught and so empty … and not knowing where to turn, and that’s just heartbreaking to me,” she said. “So, I decided, you know what, we need to get this going here.”

Although the name has Alzheimer’s in it, the group is for any person caring for a loved one with any type of dementia because they all deal “with the same struggles,” Miller said.

For more information, contact Kathi Herreid, the state program director for the South Dakota Alzheimer’s Association at 605-339-4543, ext. 8228, or email kherreid@alz.org online. Herreid will give them information on the group and send them an information packet.

The need

Dementia is a blanket term for a syndrome – a group of related symptoms – associated with an ongoing decline of brain function, according to the National Health Service in the United Kingdom.

“There are many different forms of dementia. Alzheimer’s disease is the most common form and may contribute to 60-70% of cases,” according to the World Health Organization online. 

“Worldwide, around 50 million people have dementia,” according to who.int online. “Every year, there are nearly 10 million new cases. The estimated proportion of the general population aged 60 and over with dementia at a given time is between 5-8%. The total number of people with dementia is projected to reach 82 million in 2030 and 152 million in 2050.”

“The number of people with dementia is increasing because people are living longer,” according to nhs.uk online.

With more cases, the need for care is growing, as well.

“As a nurse, I see more and more elderly people moving to the Brookings community for this very reason, to be closer to family so that they can get more help that they need. So I see this as a huge, huge need in our community,” Miller said.

Miller understands what caregivers go through on a personal and professional level.

“I had an aunt who had Alzheimer’s disease, who was very close to me. As a nurse in this community, I have just seen so many family members so distraught and so empty,” she said. 

She knew the time had come to have a group like this in Brookings.

Caregiving takes a toll

Dementia affects the patient in different ways, meaning the demands on a caregiver can vary with the type of disease and its progression, Miller said. 

“It’s not uncommon for the caregiver to get to the point where … it’s turned into a 24-hour job for them, day and night,” she said. “It’s hard to take care of someone else when you yourself have not had your own needs met.”

Many caregivers are run down physically and emotionally.

“The danger, obviously, would be just physical and emotional burnout, where they just absolutely cannot do it anymore,” Miller said.

“(Caregivers) feel very much alone. They feel like it’s … hard to talk about. Mostly because of … the social stigma. I mean, it’s a disease just like high blood pressure and diabetes are a disease,” Miller said.

Caregivers have to learn to take care of themselves, too, or they can’t properly care for their loved one.

Many caregivers do not know where to turn to share their experiences with others going through the same thing. 

“(The group) gives them a place where they can really feel very comfortable with openly talking about the things that are a challenge to them,” Miller said.  

The meetings

If you are a caregiver, you are welcome to attend the meetings; you do not need a referral, Miller said.

There have been as few as four attendees and as many as 10, depending on people’s schedules, she said.

Miller said they have caregivers in the group who are spouses, children and nephews, “so it’s all kinds of people, all ages.”

Folks can bring their own refreshments to the meetings, but none are provided. The meetings only last an hour and are right before lunch, she said. Not providing refreshments cuts down on expense and bother, Miller said.

“I don’t want the attendees to feel like they have to bring something. ‘Cause that’s just more work for them,” she said.

As facilitator, Miller opens the meetings by asking if anyone has anything they want to ask about, share something they found that works well, or discuss a particular challenge they are having. Then she allows the caregivers to steer the discussion. 

Confidentiality is of utmost importance.

“What we talk about in the group is strictly confidential. Everything that’s discussed in the room amongst us stays in the room. I feel that’s really, really important,” Miller said.

Many caregivers do still feel the stigma of having a relative with dementia and they “don’t want anyone to know, or their loved one doesn’t want anyone to know … I think that’s really important to them,” Miller said.

Growing in the future

Knowing how prevalent dementia is and that more people will need help in the future, Miller wants to start preparing now.

The need for caregiver groups will increase, as well, but it’s best to limit the size of each group, she believes. 

“Of course, the smaller groups are better. Eight or 10 people is about it. And we’ve had 10 already at a meeting, so we’re probably getting really close to needing to start up another group or two,” Miller said.

If anyone in the community would like to facilitate a group, Miller asks that you contact Herreid to volunteer.

One of the biggest things is to get rid of the stigma, she said.

“Do what you can,” Miller said and suggested each person should work on themselves to see how they can improve their personnal view of dementia. 

“I want them to know that it’s here and it’s a big deal and I think that we as a community of Brookings certainly have the resources to take care of our people, each other, and I really think it’s our job as a human being to take care of each other,” Miller said.

Contact Jodelle Greiner at jgreiner@brookingsregister.com.