The impact of YOD on children

kids and dementiaToday I am in Sydney attending a research workshop about the impact on the children of people diagnosed with younger onset dementia, and my youngest son is here with me as he and one of Christine Bryden’s daughters have been asked to present. They are both moderately terrified, but I know they will be brilliant; they probably are feeling extra pressure because their mothers speak out so much and so publicly!!! I have attached an article on this topic, published by the people who are running the workshop today, with more on this topic soon.

The emotional well being of young people having a parent with younger onset dementia

Karen Hutchinson
Cognitive Decline Partnership Centre, University of Sydney, Australia
Chris Roberts
Northern Clinical School – Hornsby, University of Sydney, Australia
Susan Kurrle
Cognitive Decline Partnership Centre, University of Sydney, Australia; Hornsby Ku-ring-gai
Hospital, Australia
Michele Daly
Northern Clinical School – Hornsby, University of Sydney, Australia


Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data was available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 10 – 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.

Here is the full article The emotional wellbeing of young people having a parent with younger onset dementia

7 thoughts on “The impact of YOD on children

  1. Oh Kate I am so delighted for you mothers and for everyone attending. I resolve that should I be invited again next year I will manage it no matter what the flight schedule! It sounds like a truly positive and powerful day. Is there anything better than a combined pooling of wisdom from caring souls who collectively become more than the sum of their parts?? What a creative energy you describe. You’ll be exhausted today Kate? I am however, about to email you about September posts to the YOD Facebook page (no rest for the wicked?) :o) xx


  2. Great! My best to them in their presentations. So glad someone is showing concern for the children. It must be difficult on them, especially the younger ones who are more dependent. Keep up the great work Kate. Creator is loving you for this! VK xxoo


    • Thanks VK… it was I suspec the day that will be the beginning of real change, as when shildren get involved and speak up, people realise then things that do need to change… there were five young speakers, all amazing, courageous, and gut wrenchingly honest! lots of tears in the room, but lots of healing too… love and hugs my dear friend xox


  3. Oh Kate I hope this goes really well. I was asked to attend but was unable due to lack of flights at reasonable times mid week. I am with you in spirit. Please give my regards to Christine and also Karen Hutchinson and Mark Gaukroger. My thoughts are with your lovely offspring presenters too. If they are in any way like their mums they’ll be fantastic speakers and advocates and it is in the ‘doing it’ that we realise just what we can do. I’m there with you all in spirit today Kate. Enjoy, and make a difference. x


    • I said hello to everyone for you, and they of course said hello back to you! We wish you were there too, it was a wonderful day, although extremely emotional for the two mothers there! My son and Christine’s daughter were spectacular, brave, honest, incredibly couragteous, as were two sisters who presented later on whose mum is now in aged care, and a young man qo presented about mental health and young people. It was enlightening, and extremely gut wrenching… xxx


  4. Wonderful.. a book that will help them with future talks.. How To Present by michelle bowden. Quite simply, it’s brilliant, and so is she.
    Enjoy the day…


    • Thanks Peter… after seeing my son present yesterday, I’m thinking he might have written the book himself! He was really good, and that (I was told) is not just a mother’s bias!!


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