The importance of explaining dementia to children: interview with Carole Brecht 

This week we interviewed Carole Brecht of SanGenWoman.

Please tell us a little about you and your line of work…

My name is Carole Brecht. I’m from Pittsburgh, Pa. I am part of The Sandwich Generation that is involved in caring for my parents. I was my Mother’s Caregiver for several years. She died on November 23, 2014 from complications from Alzheimer’s disease. She was 87. I am currently my 89 yr old Father’s companion/assistant Monday-Friday. He’s in good health. I have 4 grown, adult children that I am close to. I am currently writing a book about my Caregiving experience that will include my artwork. It will be a combination of a memoir, self-care and art book of affirmations for Caregivers. Anyone who is about to embark on, in the midst of or completed the Caregiver cycle when caring for someone will appreciate my book. I have a website that houses my blog and I’m on Twitter, Instagram and Facebook. The Sandwich Woman: The Heart of the Sandwich Generation is my Facebook page and currently my most developed page that houses a variety of posts and artwork created by myself and my sister Jan Steinle who is my partner. Our community on Facebook has over 2,200 in the community and is represented by 27 countries due to the global need for Caregivers caring for the elderly, special needs and rise with Alzheimer’s Disease.

sandwich womanHave you ever witnessed the effects dementia can have on a young child?

My grandnephew was around 5 years old when my Mother was diagnosed. That was her great grandson. He was around her at all the family events and never seemed afraid of her. He saw the changes in her, like we all did.

Have you ever tried explaining dementia to your child?

My children were all grown so I didn’t have to explain anything to my children, they understood. I think that if a youngster is around someone with dementia, they should be told that – that person is ill and she/he may not seem like themself due to their illness which will be affecting their behaviour, personality and memory. I would keep it short and simple. If they ask questions, I would answer with short replies and avoid lengthy details.

Are you aware of any resources available to help children cope with dementia in the family? 

I never had the need to seek out any materials for young children on dementia. I think a children’s book would be great to outline some general changes a child may witness. Have not given this much thought, but I think a great idea. I think to have some simple, colourful images that are childlike with 1-3 sentences on each page would work well. I would pattern it after a “regular” children’s book.

Why do you think it is important/not important to explain dementia to young children?

If a young child is around someone who has dementia on any regular basis at all, he should be/needs to be informed to some degree, small or large depending on the circumstances. Also, it would depend if the child knew that person before the adult became ill with dementia or not. I think every situation is unique and there are many details that need to be considered before deciding how much should or should not be shared. Assuming a parent knows their children well, they will make a wise decision. And if they’re unsure, they should seek out advice from an advisor in the field who deals with children on this basis.

Given your expert experience with dementia, if you could give 5 tips to any other parent attempting to explain dementia to a six year old what would they be? 

  1. I would not keep it a secret, especially if the child sees this person often and if he/she knew the person affected prior to illness.
  2. Don’t talk about serious issues about dementia in front of them.
  3. Answer any questions from a child as simply as possible and avoid details.
  4. Don’t shield the child from the one affected unless the person is physically or verbally abusive.
  5. Depending on how far along the dementia is, I would analyse whether or not to have my child around the affected person. I think it’s very hard on adults to adjust, get used to, and accept someone who goes through changes with dementia. It is also hard for anyone, young or old to accept and adjust to the changes, which vary greatly person to person.

Now available to buy:

The Artistry of Caregiving: Letters To Inspire Your Caregiver Journey on Amazon in paperback and kindle.

Carole Brecht
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Carole Brecht

Sisters Carole Brecht & Jan Steinle ~ Nurturing the Nurturers ~ Caring for the Caregivers ~ The Heart Of The Sandwich Generation
Carole Brecht
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