T-R Photo by Chuck Friend
Participants in the dementia support group that meets at Bickford Cottage monthly listen to Jeff Wisnieski (left) as he makes comments and answers questions about the disease.

“I am a huge fan of support groups for families caring for a loved one and especially those caring for a loved one who is struggling with dementia because it is a very isolating disease.”

Those were the words of Jeff Wisnieski, owner of Home Instead Senior Care and co-facilitator of a Dementia Support group that meets monthly at Bickford Cottage assisted living center in Marshalltown.

Wisnieski and Bickford Cottage Director Bianca Greazel facilitate the group that has been meeting on the second Thursday of each month at 2 p.m. for the past nine years. He said the group is open to anyone who is caring for a loved one with dementia or just for friends of someone with dementia that wants to know more about the disease and learn how they might help out.

All personal comments stay within the group itself and are not shared.

“We try to keep the group size to under 10, so that everyone has an opportunity to feel comfortable talking and opening up about the stresses and challenges that they are having,” Wisnieski said. ‚”To be a family caregiver and see your loved one struggling becomes difficult to manage. It helps to be with others and see you are not alone in the challenges you face.”

Dementia is a non-specific clinical syndrome that involves cognitive impairments of sufficient severity to interfere with social or occupational functioning. It involves at least two areas of affected cognition ‚memory, language, reasoning, attention, perception, or problem solving. Among the most common types of dementia are Alzheimer’s disease, Lewy body dementia, frontotemporal dementia, and vascular dementia.

“When it comes to dementia, it is probably one of the most difficult disease to be a caregiver for. This is because days for the person with the disease are always different and how they perceive the world around them. Their actions are different each and every day,” Wisnieski said.

Home Instead is a senior care organization that provide caregivers to clients in their home, and where their caregivers try to understand the family situation, Wisnieski said that when you are a family caregiver alone it is much different.

“There is a reason that the disease is called ‚’the long good bye‚’ as it is hard for a family member to see their loved one struggle for a long period of time and progressively get worse,‚” Wisnieski said. “Our first goal should be to seek to understand what the person is going through, why they are saying the things they say and where the anger, frustration and sadness is coming from within that person with the disease. The second goal is to make sure that the time we have left with the person with the disease is as good as possible.”

In a family situation Wisnieski said, “We help because we care. We love the person, but the emotional battle can begin to tear away at us a little bit at a time. Dementia is not a normal disease, and the more open a family caregiver can be about their feelings the better. It is important to get all the family members on the same page ‚to either be all in or all out‚ to be welcome to help or not.

In dementia, a person takes facts they remember and experiences at the moment that they do not understand and put things together by confabulation. That is to create a story that helps them answer why they think things happen the way they do.

“We can try to correct or change the situation, but it is never going to happen,” Wisnieski said. “Going against or pushing back what a person with the disease is saying or thinking just causes stress. They person already knows something is not right and they are frustrated already. Don’t dwell on things or shut the person down too often.”

Wisnieski’s last suggestion for family caregivers was to be aware of the person’s struggles. Allow then to do things they did before, but to just modify it.

The worst thing a person with dementia can do is stop and withdraw. They need to keep their mind as active as they can. The old saying is true, ‘if they don’ t use it they will lose it‚ but in a dementia patient that goes much faster,” Wisnieski said.