Younger onset dementia and the impact on children

The books and resources for children are almost exclusively based around a grand parent having dementia, rather than a mother or father with YOD, and therefore it is time we talked about it. If anyone can refer me to a book for children of any age who have a parent with dementia, please do let me know. I’m not sure I’m capable of writing a book exclusively for children of parents with dementia, but decided it is time to write something about the topic again…

YoungDementia UK follow my blog and asked me to write about the impact on children of a parent living with younger onset dementia. It is a difficult topic, but 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 younger 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 every parent and child takes for granted.

Last year, my husband was unable to attend the funeral of a friend who died from YOD, 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 very aware of what is ahead.

My other son held me tightly after the funeral of another friend with YOD, 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 and can be sad. We tend 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 Lewy Body dementia, the fear of the possibility of one day having to visit me in a home was so intense it stopped them from visiting their granddad. When he died, they then both felt a deep sense of guilt for not having been to visit him. This is another negative effect on children of having a parent with younger 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.

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

14 thoughts on “Younger onset dementia and the impact on children

  1. Hi Kate,

    YoungDementia UK is very grateful to you for sharing your thoughts on this very difficult issue in the piece your wrote for our new website (launching in February, we hope!). In researching the impact of young onset dementia and children for our website, I have come across some resources that we link to that I felt would be useful to share here too. Not all relate to a parent with dementia, but I felt these were some of the best resources I could find on the subject.

    The Alzheimer’s Society has a useful leaflet available to download from their website about explaining dementia to children and young people:
    http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1835

    The milk’s in the oven is another well written booklet about dementia for children and young people:
    http://www.mentalhealth.org.uk/content/assets/PDF/publications/Download_MilksInTheOven.pdf

    The When Dementia is in the House website has a very informative section on Discussing dementia with your kids: lifeandminds.ca/whendementiaisinthehouse/ps_sec2.html
    as well as a section specifically for teenagers, giving them more information about a parent with dementia:
    lifeandminds.ca/whendementiaisinthehouse/ts_home.html

    The Alzheimer’s Association website has a section that contains a series of videos created for children and teenagers that explain more about Alzheimer’s disease:
    http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp#introduction

    And finally, the Association for Frontotemporal Degeneration have produced the following leaflet for parents / children:
    http://www.theaftd.org/wp-content/uploads/2009/03/What-About-the-Kids-web-version.pdf

    Sorry for the length of my reply, but I hope all the links work for people and prove useful. Certainly a book on the subject would be appreciated by all. I couldn’t find one for parents / children either.

    Kate, Communications Coordinator, YoungDementia UK.

  2. Kate, thank you so much for sharing this. I get so many calls from people who ask for books and literature for their chidren and as is often said, there’s a small amount available for younger children but nothing of value that I’ve come across for older children, particularly teens.
    I’m looking at doing intergenerational work, firstly, talks in schools. If you have any ideas or know of any resources, I’d be grateful to hear them.
    I hope your good days far outway the bad and that you can keep on using your experiences to inspire others.
    Thanks for sharing.

    • Hi Clare, it is fab to hear of your intentions and will get in touch with you with a few ideas. I was going to write an Honours thesis on teenage grief, as this group seems to get left out… but I ran out of energy and motivation, with my focus now so much on dementia. And yes, my god days far outway the bad…

  3. Another excellent thought piece Kate – fact is that there must be a growing number of young people worldwide who have had the experience of having a parent with Younger Onset Dementia. They must have stories to share that can help other young people who find themselves in the situation. I think a key issue is recognising that these young people have their own support needs and that they need to feel that they are not alone and that they can live through and survive the experience. Some work has gone in to this area of consideration and I see that Karen Hutchinson, Research Fellow at University of Sydney presented at the Alzheimer’s Australia 2013 Conference on Coping with a parent living with younger onset dementia – The experiences of young people. There’s also research going on and papers being written in US. I found some interesting material at http://www.afateens.org/learn_dementia.html
    A book though – I couldn’t easily find one. It’s there for the writing. (But you don’t have to do everything).

  4. While the book I wrote is about a young child helping care for her grandmother with dementia, I think there are many aspects that could still be helpful to a child dealing with having a parent with early onset. I think it’s important, first to understand the disease, second to know that the person you loved is still there (they have not become someone else), and last, it is important to have some useful coping mechanisms to handle some common behaviors of the disease. http://amzn.to/1hHRn7U

    • Hi Max, great to see you hear. I have been following your wonderful work for some time now, although have not read your book. My one comment to your comment is I’d really like the language change to communication challenges, rather than behaviour, which is derogatory and negative. In Australia, dementia educators teach that almost all ‘behaviour’ is a form of communicating, and so it will be good to one day (hopefully in my life time) change the language.

  5. Oh Kate, what memories your writing brings up. Geoff did not fall into the category of YOD because he was 70 when I saw the first signs of his dementia, but our daughters were 10 and 8. I know it has had a deep impact on them, but I would not say it was all negative. Having to take their father by the hand and guide him to the bathroom because he had forgotten where it was, having to cut up his food because he had lost the ability to use a knife and fork, these are things they took in their stride. As things progressed it got more difficult, and whilst our eldest chose to visit him when he was in a care home for the last year of his life, our youngest, 14 by then, decided not to, wanting to remember the active, vibrant father he had been of her early childhood.
    One of the striking things I noticed was the difficulty their friends had in providing effective support, until he died. Death was easy, people understood death, they could offer sympathy, a shoulder to cry on. They hadn’t understood, or were able to cope with, the equally devastating loss of a parent who had effectively disappeared but was still alive.
    I’m sorry, my comments don’t offer you much comfort, but hey, keep writing and being the wonderful wife and mother you clearly are. Thank you for another beautifully written and thought-provoking post.

    • Thanks for your thoughts Zoe… and I have edited (slightly) as per your tweet, but not all!! It is such a complex situation for everyone. Keep commenting, and writing. I love having you here.

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