How to talk to children about a loved one's dementia without traumatising them

Clare Childs had hoped her mother would be actively involved in her twins’ lives as they grew up. But just a month after their births, her hopes were dashed when the babies’ grandmother was diagnosed with vascular dementia.

Ms Childs found she not only had to care for her newborn boy and girl – Charlie and Rosie – but her mother, Christine, as well.

One of the biggest issues the young family faced, which new research reveals is too often swept under the carpet, was how to explain her mother’s illness to her children, who are now six.

“We’ve had to explain to them why grandma doesn’t live with grandad. Why she’s in the care home. Why she doesn’t know their names – and why she can be crushed sometimes and it’s not your fault – you haven’t done anything wrong,” Ms Childs, a classical musician from Hertfordshire, told i.

“It’s a bit of a learning curve trying to get it right. We try and keep things factual and we don’t want to upset them in any way but we also need to explain why they have a grandma but she is not the same as maybe other people’s grandmas.”

The majority of parents find speaking to their children about a relative’s dementia incredibly difficult, survey shared with i by Dementia UK has revealed.

In total, 67 per cent of parents said that the diagnosis of a family member or loved one had impacted their children, while 14 per cent were yet to tell their children a family member is living with the condition.

A third of parents said they were trying to keep things as normal as possible by limiting what they shared about dementia with their children.

This is despite 80 per cent admitting their children have asked to know more, the research, conducted by Censuswide, found.

Hannah Gardner, Dementia UK’s first consultant Admiral Nurse for children and young people, told i they are a “missed group” when it comes to care and awareness for dementia.

“Children pick up on changes and they often have fears that need to be addressed,” Ms Gardner said. “Sometimes they think you can catch dementia and could be really worried that they or their parents are going to get it.

“But being approachable and giving that child a ‘communication pathway’ can really help – so that they can come to you if they have any concerns and they don’t feel like they have to hold it in themselves.”

Any communication “needs to be at the right level” for that child, depending on their ability to process potentially unsettling information, she added.

Angelo Makri, a senior wellbeing officer at Alzheimer’s Society, said it was important for parents approaching the conversation to try to get a sense for how much their children can cope with knowing, and tailor the discussion accordingly.

“Try to be as honest as possible, offering clear explanations and plenty of reassurance,” he said. “It’s important to reassure children and young people that others are still there for them. They need to know that, despite all the pressures, they are still loved – however preoccupied or frustrated other people may be sometimes. This can help to provide opportunities for them to talk about any concerns they might have.”

The benefits of communication are borne out by the survey, in which 81 per cent of parents said their child was receptive when speaking about dementia. Two thirds of parents said that when speaking about it to their child, their child felt reassured.

The survey – of 500 UK parents of children between the ages of six and 16 who have a relative with dementia – found the benefits of talking are clear.

It helps children to understand the situation more clearly, makes them feel more involved and helps them to process their emotions, the researchers discovered.

This is not only good for the children but it can help the parents too, Ms Child said. “If I’m upset I’ll explain, ‘I’m upset about grandma today,’ and the [twins will ask], ‘You miss her don’t you?’

“And they have an understanding that even though she’s here, she’s not who she was.”

How to talk to children about dementia

Communicate clearly

• Focus on the things that the person with dementia can still do, as well as those that are becoming more difficult.
• Explain as clearly and calmly as possible, at a level that the child or young person can understand. Try to get a sense of how much detail they can cope with.
• Listen carefully.
• Try to imagine the situation from their point of view. Think about their relationship with the person with dementia. This will help you find out if they are worrying about something specific.

Validate their feelings

• Encourage the child to ask any questions they have and let them know that they can always talk to you.
• Set aside a regular time to talk or do activities together when they can speak with you alone.

Reassure them

• Acknowledge things that are happening that might seem strange – such as the person with dementia forgetting where they are or not recognising family members.
• Don’t be afraid to use humour, if it feels appropriate. It can help if you can laugh together.

Talk about your relative

• Repeat explanations, depending on the age and level of understanding of the child or young person.
• Talk about the person’s life and interests and show the child or young person photographs and mementos.

Painting and drawing can help

• The skills to talk about emotions develop over time, and many children need a lot of practice to be comfortable articulating their feelings. In those cases, there are non-verbal activities that can help children to process their thoughts and emotions.
• According to the Dementia UK survey, 31 per cent of parents said drawing – and 24 per cent said painting – can be beneficial when discussing dementia with children, with parents finding creating art useful in helping their child to express their feelings.
• Drawing is also an enjoyable activity for children to do with their relative with dementia, with one in five parents saying that their child and relative with dementia like to draw together.
• Other non-verbal activities for a child and relative with dementia to tackle together could include going for a walk, playing games, sorting objects, listening to music or making a scrapbook of past events.

Dementia UK is exhibiting artwork from children across the country who have relatives with dementia. The exhibition runs from 11 to 17 March in Paternoster Square, central London.