Any family that receives the devastating news of a dementia diagnosis will have a period of adjustment and grief, but for those families with young children it can be a particularly difficult time. Often this age group is forgotten about when dementia is discussed, possibly because it is more unusual for a family with young children to have a parent affected by the condition. Yet many grandparents are carers for young children within the family, and many more are an integral part of daily life. In addition, there are families where early onset dementia has made an appearance, where children will need extra help and support.
A University of Sheffield study in 2017 found that having a parent with dementia unsurprisingly causes a lot of emotional, mental and physical distress, which can impact younger people throughout their lives.
Participants who had experienced the effects of dementia as they grew up explained how their personal lives were affected by their parents’ condition, with parents missing their significant life events, such as graduations and weddings. They also felt they could no longer rely on their parents for help, advice, or have them involved in their life decisions.
Talking to children
Talking to children and keeping them involved is key in helping them to adjust to the new family situation, even though it can seem daunting to do this. If the person affected by the dementia is still in the early stages of the condition, or if they have a form of dementia that does not affect understanding and communication straight away, they can talk to the children themselves. At any stage, they will be able to hug or hold hands, which can be a good way of reducing fear and maintaining a positive relationship.
Younger children will need much simpler, clearer explanations of what dementia is and how it affects people. Try to use concrete examples of strange behaviour, such as putting keys in the fridge or forgetting a familiar journey, to help them grasp what the condition means. You may have to be patient and explain things several times, depending on the age of the child. For older children, encourage them to ask questions and to explain how the dementia is making them feel – you may find that, as so often with children, it is something small and tangential that is worrying them.
Whatever age the child is, encourage them to take part in activities with the loved one, so that they feel involved and cared about. These could range from walks to looking at photos or listening to music.
Watch out for signs of stress and anxiety
Watch out for signs of distress and anxiety, particularly from children who have not been able to articulate how they are feeling. Telltale signs are difficulty sleeping, ‘playing up’, being sad or weepy, retreating into themselves and possibly poor schoolwork.
In all cases, make sure the child knows that the condition is not his or her fault – children often mistakenly blame themselves for adult situations, particularly where the issues are hard to understand.
The Alzheimer’s Society has a useful fact sheet for explaining the condition to children here.