The impact of young onset dementia on children

Kate Swaffer with her husband and two sons

A confusing time for us all

At the age of 49 I was working full time, studying at university, caring for a home, a garden and my two sons with my husband, and volunteering; I was also diagnosed with young onset dementia.

It was confusing for us all, and perhaps especially so for my children, and I realise now I probably neglected to give them the support they needed, as I was so traumatised by the diagnosis myself.  We were all worried about upsetting each other, and became over-protective by trying to hide how we felt.  I spent a lot of time walking and running, and during this time, crying.  I could barely stop crying, and this was my escape.  Sadly, I realise now it took me away from helping the boys.  At the time, there was also very little support for any of us.

When I was first diagnosed, my youngest son said; ‘But mum, I thought dementia was a funny old person’s disease?’  He said it casually, and with humour, and we all took it that way, but the reality for my children is they have a mother who is very slowly deteriorating in front of their eyes.  And, it is not funny.  I'm quite sure it was difficult for my teenage sons, who at the time still lived at home, to watch me progress from a highly capable woman to someone who is sometimes ‘too scared to leave the house’.  Aged 50, I also lost my driver's licence, which meant I could not pick them up from school or sport, or drive them to the doctor or shops, all simple things most parents and children take for granted.

Glimpsing the future

Last year, my husband was unable to attend the funeral of a friend who died from young onset dementia, and so one son came with me, partly to take me because I can no longer drive, and partly to support me.  Part way through the service, he was crying as much as I was even though he had never met them, and we both hugged and held onto each other tightly.  It wasn’t until afterwards when we discussed our feelings that I found out why he was so upset.  He had felt it was like attending my funeral.  I too felt it was a more than a glimpse of what is ahead, and it affected us both deeply.  Of course we cannot live in fear every day, but it was and is occasionally very confronting, and makes us all fearful of what is ahead.

My other son held me tightly after the funeral of another friend with young onset dementia, with the same sense of fear.  Like all young people, they get on with their lives, but lurking in their subconscious most of the time is the fear I might one day be in an aged care facility, and will probably die much sooner than we all would want.  At times it is desperately sad for everyone; whether it is your grandma, or mother, or friend, if they don’t remember you or you are confused most of the time, it really hurts.

Living in the moment 

We try to live as if every day is our last together, just in case it is, and we are trying to make sure we spend more time together.  We always hug and tell each other we love each other, every time we connect.  When my father in law entered high care with dementia with Lewy bodies, the fear of the possibility of one day having to visit me in a home was so intense it stopped them from visiting him.  When he died, they then both felt a deep sense of guilt for not having been to visit him, another negative effect on children of having a parent with young onset dementia.

Whilst neither of my children are technically ‘carers’ for me, they do have to be with me sometimes, as well as provide transport.  Their lives don’t completely revolve around this, but there is a sense of ‘being on call’, in case my husband is not able to help when needed.  It is probably difficult for them to express their feelings or fears with their own friends, as almost none have a parent with dementia.  Many do have grandparents with dementia, so at least there is a common thread of experience, but it is not an easy topic to discuss.  Talking about the abilities that have ‘gone into hiding’, and are slowly getting worse, feels like a betrayal of their mother.  Accepting the repetition of conversations, and my increasing forgetfulness is also hard for them, and as they don’t live with us anymore, it is easy for them to forget about dementia, and so they can become more easily frustrated.

When the parent becomes the child

Eventually, it will be like having a parent who is absent, and they may then also have to take on the role of parent.  I read about the effects of this on adult children, who care for their elderly parents, and know many feel like their elderly parent has become the child, and they have become the parent.  They write about the intense sense of loss they feel at not having a mother or father capable of fulfilling the roles they had for their whole life, the sadness and grief of not having a parent ‘there for them’ or to ask for advice from, and the burden of having to become their ‘carer’.  Imagine that, but your mum is 35 or 49.

I don’t feel desperately sad or fearful today, but there are times when I do.  I’m sure these feelings wrap themselves around my children too, and impact their lives and hearts. The best we can do is support each other, and work on being at peace with ourselves and each other, as whole human beings.  There are still very few books about the impact of dementia on children, and even now the books and resources for children are almost exclusively based around a grandparent having dementia, rather than a mother or father, and therefore it is time we talked about it. 

Kate Swaffer is an author, poet and blogger.  She previously worked as a nurse, then a chef and is now a committed volunteer, advocate and activist for aged and dementia care.

Share this page