What’s wrong with Granny? Talking to your children about Dementia

My husband is in Ireland visiting his Mum’s grave with his 94 year old Dad.

Judy died during the pandemic , not due to Covid but due to Alzheimer’s and Parkinson’s Disease. My father in law Arthur looked after her at home for 10 years and after her funeral we all went to Ireland to lay her to rest in her family grave in Oola, just outside Tipperary.

But it brought back how we all handled the situation and what I told my children during that sad time.

Here is what I wrote and here are some suggestions to help you as a family. I hope you find them helpful.

‘My children’s Grandma has senile dementia and it has been sad to see this once incredibly active, kind and weekly golfing woman become a shadow of her former self.  When I found out I Googled “Dementia” as my husband and father in law both had their heads rather firmly in the sand but I wanted to prepare myself and my family for what was going to happen and how I could prepare my teenage children for the changes.

Talking to children about a grandparent’s dementia can be challenging but important to help them understand the changes they may observe and provide them with support.

Here are some tips for discussing dementia with children:

Choose an appropriate time and place: Find a quiet and comfortable setting where you can have an uninterrupted conversation with your children. Make sure both you and your children are relaxed and have enough time to discuss the topic. Answer your children’s questions as best you can.

Use age-appropriate language: Tailor your explanation to the child’s age and level of understanding. Use simple and clear language, avoiding complex medical terms. Explain that dementia is an illness that affects the brain and can cause memory loss and changes in behaviour.

Be honest and realistic: Explain that dementia is a progressive condition, meaning it gets worse over time. Help your children understand that their grandparent may have difficulties remembering things, recognising people, or behaving differently than before. Be honest about the challenges without causing unnecessary fear or anxiety.

Encourage questions and emotions: Give your child an opportunity to ask questions and express their feelings. Reassure them that their feelings are valid and that it’s okay to feel sad, confused, or frustrated. Encourage open dialogue and provide reassurance and support.

Provide simple explanations for behaviours: Help your children understand that any unusual behaviours or forgetfulness from their grandparent are not intentional but a result of the illness. Explain that their grandparent may sometimes struggle with recognising people or may repeat things. Emphasise that it’s important to be patient, kind, and understanding.

Offer reassurance and support: Assure your children that their grandparent still loves them, even if their behaviour or memory has changed. Reassure them that they are not responsible for the grandparent’s condition and that it’s natural to feel a range of emotions. Emphasise that there are ways to still spend quality time with their grandparent, even if it’s different than before.

Share coping strategies: Help your children understand ways they can support their grandparent, such as speaking slowly and clearly, using pictures or reminiscing about shared memories. Teach them empathy and encourage them to offer love and comfort to their grandparent.

Maintain routines and stability: Children often find comfort in routines, so try to maintain stability and familiar activities as much as possible. This can help them feel more secure during the changes associated with dementia.

Seek additional resources: Consider accessing additional resources to help children better understand dementia. Books, websites, or support groups designed for children dealing with dementia can provide further information and support.

Remember that each child processes information differently, so be prepared to provide ongoing support and address any concerns or questions that may arise. Additionally, involve other family members or professionals, such as counsellors or healthcare providers, to provide guidance and support throughout the journey.

Here is a very informative and helpful article from BrainHub

“Children cope remarkably well and can handle the truth far better than many adults imagine. On the contrary, keeping young people in the dark can have adverse affects; as hard as adult family members might try to conceal what they believe to be difficult and depressing situations, such as a family member with symptoms of dementia, children pick up on stress and upset and this can make them anxious.

Also, it can be fairly upsetting for children to find out later that they can’t trust someone close to them, perhaps more so than dealing with realities in the first place, however tough they might be.
Changes in a family member with dementia will also become too apparent to hide; children need to understand why that person has changed, and why for example, grandpa will start to no longer be the one giving out advice but instead be the one in need of support.
In short, finding out that this changed behaviour is part of an illness can be a relief to children.

Emotions children may experience

As well as picking up on the stress of family members caring for someone with dementia, children and young people may also feel resentment and anger because they are receiving less attention from their parents.

They may also be worried about the progression of the disease in their loved-one and be quietly grieving for the loss of the person they once knew.

Feelings of embarrassment, fear or irritation can also be quite common if they witness unusual behaviour in front of other people. It can also be difficult and boring for young people to repeatedly listen to the same old stories which is a common symptom of dementia.
But just as different adults deal with things in varying ways, so do children. As well as having unique personalities, young people will react differently to dementia depending on their age and stage of development, how important the person with dementia is in their lives and how often they interact with that person.

Keeping a watchful eye on your own child and maintaining open channels of communication is vital. Whilst it’s important to manage the care of a loved-one in the family who has dementia, this shouldn’t be at the cost of the well-being or peace of mind of other dependents.

How to talk AND listen to children

Every child is different and in most cases parents will be the best people to know what their children can cope with and how to talk to them.

It’s best to be as honest and as clear as you can, explaining in simple terms what dementia is and how it will affect their loved-one with dementia and the impact this may have on immediate family.

If the person with dementia is in the early stages of dementia, he or she may be able to talk to your child about their own condition (perhaps with you present) which can be particularly reassuring and help to maintain a positive bond between your child and their grandparent.

Giving examples of how dementia can affect people can also be helpful, so that children aren’t shocked when they see grandma putting her keys in the fridge or wearing a winter coat in the heat of summer, for example. Laughing about these unusual behaviours can also be therapeutic and help to lighten the atmosphere in the household which somehow makes things easier to cope with.

It’s also important to focus on the positive and the things that their grandparent can still do and enjoy. Listening to music, gardening and reminiscing about the past are all things that children might like to share with their loved-one with dementia.

Giving children the opportunity to ask questions and express how they feel is also vital. Ask them how they feel and listen carefully to their answers to see what might be troubling them so that you can reassure them.
Adolescents are often good at expressing themselves and their feelings, but often don’t initiate discussion. Watch for clues in their behaviour that something is on their mind and then try to talk openly. Some young people may have problems talking with parents because they don’t want to worry them, or are afraid of making them sad or being an extra burden. They may prefer to talk to people of their own age or to counsellors.

Read more on => Questions young people may ask