Tips to help children understand grandparents with dementia
Marissa Sandler is the CEO and co-founder of Careseekers. Prior to founding Careseekers Marissa worked as a social justice lawyer and researcher for over 15 years with a strong focus on disability discrimination and women’s rights. She is passionate about helping people live with dignity and finding innovative solutions to problems she sees around her.
Many of the people who call Careseekers for help are the adult children, husbands, wives or partners of people diagnosed with dementia. Navigating dementia can be challenging and unchartered for all family members, including grandchildren. How are children coping with grandparents with dementia? And what can you do to make it easier for them to understand the illness and its impact on their grandparent.
We spoke to Helen Carswell, Senior Counsellor at Alzheimers Australia who gave us some valuable insights that have helped us create tips for helping children cope with dementia in the family.
How to explain what dementia is to your child
- The amount of information you should give will depend on your child’s age, knowing what is appropriate for them.
- It is important for children to understand that it is a disease of the brain that makes them behave differently.
- Use examples to show how sick the person is. A great example is “If grandpa had a broken leg you would see that his leg is broken because there would be a plaster around it. We wouldn’t expect him to walk around on a broken leg like he used to. The problem with Grandpa is his brain not his leg, it is now gluggy and not like it was before and we cannot expect him to think and behave the way he used to.”
- There have been many storybooks written for children which help explain what is happening to someone with dementia. Here are a couple you can find at your local library
Do You Remember? By Kelly O’Gara and Anna McNeill
A beautiful exploration between a child and their ageing grandparent . Children will relate to the mice as they read the story and understand their grandparent's condition. The book can cater for multiple ageing conditions but specifically is focussed on explaining Dementia to children.
Wilfred Gordon McDonald Partridge by Mem Fox
Wilfred Gordon McDonald Partridge lives next door to a nursing home in which several of his good friends reside. Of course, his favorite is Miss Nancy Alison Delacourt Cooper, because she has four names just as he does. The only problem is Miss Nancy, who is 96, has "lost" her memory. Undaunted, Wilfred sets out to "find" Miss Nancy's memory for her.
How to respond when a child sees frightening behaviour in a parent or grandparent
- Be honest and deal with things as they arise to help them make sense of what is going on around them.
- If they have seen something that may upset them, ask them about it, ask them about how it makes them feel.
- Remember that not everyone with dementia acts in an angry or violent manner so there is no need to keep your child away from someone with dementia in fear of them witnessing scary behaviour.
How to help children remember what their grandparent used to be like
- Tell stories from the past about the grandparent using photos and videos and referring to things they used to do with him or her.
- Explain to your child that they will need to keep the memory of their grandparent alive because unfortunately they can no longer hold onto those memories.
- Get children to create photo books, scrapbooks or collages of them and their parents/grandparents lives together and also before they were born. Let them share it with their grandparents and with other family members, friends and teachers at school. If possible give the child objects that may have relevance to the grandparent’s life to hold, smell and talk about.
For more information, Alzheimer's Australia have a factsheet: About Dementia – Information for Young People which can be downloaded here.
The Alzheimer's Australia video above shows children and grandchildren of people with dementia speak frankly about what it is like having a relative with dementia.
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