While a child's central relationship will be with their parents, siblings or other main carers, children may also have important relationships with a grandparent, other older relative or family friend. Such a relationship can provide consistency and security to a young child. But what happens if this person develops dementia?
There are currently some 700,000 people in the UK with dementia. About 15,000 of these are under 65 years old, but the chances of developing dementia increase significantly with age.
Spending time with or caring for someone with dementia can be a distressing and frustrating experience for family members and one that is all the more difficult for a young child to understand.
The child may enjoy particular routines or activities with the person, and will find it confusing when that person begins to change. It is likely, too, that family members, themselves stressed and upset by the illness, will fail to gauge the impact on the child.
Many grandparents play a significant part in childcare arrangements, some full-time, others in combination with early years settings. When it is no longer safe for them to be left in charge of the child, it is a wrench for all concerned.
The young child may become sad, curious, confused, frustrated, afraid, jealous (of the attention given to the person with dementia) and feel, above all, that they are no longer loved by the person with dementia.
For early years settings, the first sign that something has changed in the family may be changes in the child's behaviour. Key workers may in particular notice these changes. Young children may become withdrawn, tearful, angry and unwilling to separate from parent/main carer.
As with any other change or stress within the family, young children may revert to previous stages of development. Previously dry toddlers may start to need reminding to ask for the potty. Children who sleep through the night may start to wake. Those who have moved through any tantrum phase may begin again to show their frustration. Early years practitioners can be a great support to their families.
Open and honest
Open and honest explanations, given in a way that is appropriate for the individual child, are always best. Most children will accept explanations if they make sense to them and are reassuring.
One parent described her mother's dementia to her young child in the following way: 'I explained to him that sometimes bits of our bodies don't work properly. I said Grandma was still his Grandma and always would be. I said that her brain wasn't working properly and that sometimes she gets very muddled up and confused and she forgets things. I was careful to stress that she still loves him very much and still loves to see him and play with him. I know he will ask more questions as he gets older and I will always answer as honestly as I can.'
Children may want to know:
- Why does Granddad get my name wrong?
- Why can't I stay overnight any more?
- Why can't Grandma fetch me from nursery?
- Will you get ill in your brain?
- When will she get better?
- Is Granddad cross because I was naughty?
With simple answers, children will accept the changes that are happening. They will feel reassured that it is not their fault, that they can't catch the illness and that they are still loved.
It is important to support a continued relationship between the child and the person with dementia. They may no longer be able to look after the child alone, but with another adult present, there are many activities they can continue to do, such as playing with toys and jigsaws, looking at books and photographs, simple cooking and gardening, drawing, colouring and singing songs and rhymes.
One parent described watching her three-year-old daughter play with her mother-in-law, who was in the early stages of dementia: 'They were using her Zimmer frame, which has a basket on it, as a shopping trolley. They went into the bedroom and filled it with a very odd selection of things - clothes, books, toys. They came back into the sitting room and my daughter announced they had been shopping. My mother-in-law said 'Oh no, we forgot to pay!' Off they went again into the other room. I don't know who was having more fun!'
With understanding family and practitioners, a child can be helped to continue the vital relationships they have with older people with dementia.
- Kath Tayler is an associate lecturer, Open University, Early Childhood Studies Foundation Degree
Further information: www.alzheimers.org.uk