Many children enjoy a particularly special bond with their grandparents. If they are lucky enough to have them, grandparents are a valuable outer ring of the nuclear family. They are often able to offer the best elements of parenting (such as love, support, attention and the occasional treat) with fewer of the downsides (such as being the disciplinarian who must ensure homework is done and rooms are cleaned).
This special relationship, however, can shift dramatically when a grandparent has dementia. Some 50 million people around the world are living with dementia, which – the World Health Organisation (WHO) explains – includes several diseases that affect a person’s memory and other cognitive abilities, and can significantly inhibit a person’s ability to maintain their independence.
“Although age is the strongest known risk factor for dementia, it is not a normal part of ageing,” the WHO continues. How can you support your children’s understanding and their gentle interaction with grandparents who may be experiencing cognitive decline and memory gaps?
Claudia Andrews is an occupational therapist at Livewell, a specialised dementia care facility with estates in Bryanston, Johannesburg and Somerset West, Cape Town. She supports the Livewell residents in their daily lives and her role subsequently includes interacting with the families (and, naturally, grandchildren) of residents.
Additionally, she is also a mother to a young daughter in a family that has also been directly affected by dementia.
From both her personal and professional experiences in this regard, Andrews says children are usually very adaptable and remarkably able to cope with the changes introduced by dementia – if they are supported in honest and age-appropriate ways.
“My daughter loves coming to work with me because she feels she has many grannies and grandpas around her. And they love interacting with her,” she says. “For many living with dementia, they are actually reconnecting with a more childlike state, and this means there is often a lovely understanding between them and their grandkids.”
Here are some of her top tips for parents:
There is no point denying that anything is wrong once granny or grandpa begin to show symptoms associated with dementia. Milder symptoms can include forgetfulness and confusion, such as asking the same questions repeatedly or being unsure of names. As dementia progresses, however, many patients experience a considerable loss in function, personality changes and delusions.
“Children should be allowed to ask questions, and be given honest answers,” she says. This can be scary for everyone in the family and unpleasant to talk about, but open dialogue is essential. Children are incredibly perceptive and will be aware of the changes or even your feelings about those changes. So pretending they aren’t happening is not only ineffective, it can be outright damaging. A child also takes their lead from their parental figure, so if you’re willing to talk about dementia and your emotional response to it, you create a safe space for your children to do the same. Your keywords here are acknowledging and encouraging.
Keep it simple
A commitment to honesty doesn’t necessitate overwhelming a child with medical explanations. The amount and complexity of information provided must be age-appropriate and informed by your child’s ability to understand. This ability will naturally increase as children age, Andrews explains.
Putting things in terms of an accessible metaphor is a great way to tackle the conversation, Andrews says. This might be something like talking to your kids about how older computers and mobile phones are sometimes slower or unable to do the tasks that newer ones can. “Well, you can explain to children, the same can be applied to people.”
Encourage connection and responsibility
Don’t limit or curtail the relationship between your child and their grandparent because of the onset of dementia. The connection between generations can be a beautiful thing. Kids can be encouraged, but not forced, to take part in a family visit with a grandparent in a dementia home. Another great tool is the video calling on WhatsApp – especially if you want to keep the connection, but limit the direct engagement for whatever reason. For example, Andrews says, “as a parent, it is important to keep an eye on the family’s health. If someone is sick, rather hold off the visit until everyone is happy and healthy again or keep up the visit virtually.”
Set the ground rules
Be clear and upfront about the rules your children must follow and which ones they can expect their grandparents to flout. For example, Andrews says, one of her patients at Livewell has become a prolific swearer since the onset of dementia. Andrews has had to explain to her daughter that even though that Granny swears, the same is not allowed from kids.
In summary, children can and will approach a grandparent with dementia in a kind and gentle way, informed by an awareness of their difficulties, when guided gently and responsibly by their parents. And remember model the behaviour – patience and kindness – you want to see from your children.
And her tips for kids?
- Play pretend: Live in the moment with Granny. If they are confused about your name or what year it is, don’t fight with them. Play pretend with them
- Don’t correct them: Grandpa doesn’t know when they are wrong about a fact or name and they won’t understand or change their mind. So just go with the flow
- Don’t yell or hit: Loud noises and quick responses can be scary for anyone. Even if Granny is yelling, it is not fair to yell back. Let’s keep our voices at a nice even level
- Be kind: We all have bad days. We are all grumpy sometimes. And we all make mistakes, like dropping things or saying the wrong thing. Be kind and try to remember this