How do you explain to your eight-year-old why grandpa can no longer remember their name? Or that grandma can't take them to the park on her own because she might forget how to get home or wander away and leave them at the top of the slippery dip? These are the questions facing parents of kids with grandparents suffering from dementia.
Over 330,000 elderly Australians suffer from the disease that causes a progressive decline in a person's mental processes, including loss of memory, intellect, rationality, social skills, inhibition, and physical ability. And that number is expected to increase to over 400,000 in less than 10 years, according to the charity Fight Dementia Australia. It is the third leading cause of death in Australia and there is no cure.
But how do you explain these facts to your children?
Jessica Ozbay, a Sydney-based social worker specialising in aged care, has worked with dementia sufferers and their families for eight years. She recommends being age-appropriately honest with children about the disease and suggests explaining the symptoms in a visual way children can relate to, for example a bucket analogy;
"Grandma is struggling to remember things because her memory is like a bucket with a hole in it – it doesn't matter how many things you try to put in, they just keep falling out of the hole in the bottom."
Ozbay advises, "It's also very important to reassure children about the feelings involved. If grandpa doesn't remember your name it doesn't mean he loves you any less, it just means we must treat him like he's even more special and take even more care of him."
She recommends encouraging children (and adults) to try not to contradict what a dementia sufferer believes.
"It helps keep them much calmer if they aren't continually being told they are saying and doing silly things" she says. "Even when dementia sufferers appear very confused they can still determine feelings so it's very important not to become impatient, however frustrating their behaviour is, because they won't understand why you're exasperated but it will hurt their feelings and that's all they'll remember."
Dr Ruth Westheimer, behavioural therapist and author of Dr. Ruth's Guide for the Alzheimer's Caregiver, recommends ten practical steps to help children cope with grandparents with dementia:
1. Be open and honest – dementia progresses continually so it's important not to hide from a child that grandpa will be going through dramatic changes. Children will be more accepting and less anxious if they are prepared.
2. Keep visiting – don't assume it's not worth visiting grandma if she isn't able to remember the visit. Research shows the feelings created will remain much longer than the length of the visit, and a visit from grandchildren could positively influence the rest of her day. There is probably nothing that gives a grandparent with dementia more pleasure than being with grandchildren so try to make this happen as often as possible.
3. Encourage interaction – it's vital during the time when grandparents can still interact with their grandchildren that they do so as much as possible. Westheimer says, "It is important to make sure the last image a child has of a grandparent isn't just one of them at their worst but instead those memories from the final days are balanced against many other positive memories."
4. Let children know they're helping – getting the child's co-operation is one reason why you have to explain to the child exactly what is happening. Let children know they're being helpful by spending time with grandpa and lifting his spirits.
5. Document their time together – take lots of photos of grandparents sharing a book or doing a jigsaw with grandchildren. This way they will have mementos to support their memories. It's going to be difficult for a child to forget their grandparent's final days but if you can show them lots of pictures of them in happier times it will reinforce the positive memories and help downplay the ones that are best forgotten.
6. Don't despair – that's not to say that once dementia advances you won't want the children to have any memories of those times. At this stage, young children may even interact better with grandparents than adults.
7. Encourage lots of cuddles – one sense that dementia sufferers miss is being touched and young children can fill that void. Westheimer recommends watching a movie together. "Grandma may not understand the movie but she'll treasure having a warm little body up against her."
8. Get children involved in the care – slightly older children might enjoy doing things for their grandparents like making a cup of tea or a snack to share. "Dealing with someone with dementia may not be the most pleasant of tasks yet it's still a teachable moment for any child. It will help them understand that life isn't always about happy times," says Westheimer.
9. Keep children informed of the changes – by keeping children fully informed they will be less shocked when they see the differences in their grandparent.
10. Stay positive – grandparents might not be able to express their appreciation but be assured that if you are creating happy experiences with grandchildren you are making a positive difference to the dementia sufferer's quality of life.