Dementia can strike earlier than you think. So what can we do? 37



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One in every 13 Australians diagnosed with dementia is aged under 65, and the numbers are increasing. Currently, more than 25,100 people are living with younger onset dementia, and there is a pressing need for specific, tailor-made services and programs to help improve the quality of their lives.

Not-for-profit organisation, the Brotherhood of St Laurence runs a support group for women and men with this condition, and coordinator Kylie Levett says this is a proven way of really helping those affected.

“Our members are at the early stage of the disease – slight memory loss and confusion,” Kylie says. “And we wanted to run a program that has been designed by them for their needs because we believe it’s a shared journey”.

Women don’t immediately identify that something is terribly wrong because the symptoms of younger onset dementia are similar to menopause, Kylie believes. And that means they often don’t get help and support until quite late after diagnosis.

“At the beginning, we had two ladies who were quite advanced in their condition, but were referred to us because they were younger. It’s confronting when you see someone you love so dearly who is only a young woman in an environment where there are many older people”.

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“Another lady in our group was a former nurse who had cared for people her entire life. She had been in a group for older people because there hadn’t been anywhere for her to go. In that group, she had retreated to curling up silently in her chair, not communicating with anyone”.

“But here, with people her own age, she became a different person. She would check to see if everyone was okay; she was dancing, she was shining – she was just glowing. She felt like she was back at work, helping people”.

“Because our group’s environment is built on support and connection with each other, the healing and the compassion and kindness shown to everyone is phenomenal”.

These personal stories can be devastating to hear, but Kylie says they inspire her. People tell her how hard and isolating it is not being able to work – that they’ve gone from being financially independent with thriving careers and fulfilling lives to being unemployed and coping with the disadvantages that comes from this.

“Our role is to be part of this journey after people are diagnosed and have to rediscover who they are. It’s a life after diagnosis and it’s about giving hope. That’s what I found from this group.

The program has been evaluated by researchers and has shown that it helps members to maintain their routine and continue to engage in activities that interest them.

This is why the work that the Brotherhood of St Laurence does is so important -providing families with peace of mind.

But there aren’t enough of these programs and there is a desperate need for more. This year, give back and support those people who are in need.

Visit to find out more about our Younger Onset Dementia Group or to donate to the cause.


Has dementia had an impact on your life? Share your story in the comments below.

This post was sponsored by the Brotherhood of St Laurence. It was written as we feel it delivers valuable insights into a subject important to the Starts at 60 community. For more information on how you can help those suffering from dementia, click here.


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  1. I hav worked in this area for many years….families are devastated by the changes happening n apologize to the workers for their loved one. I want to let families know that the worker who has no past with this person will find a person they can help, enjoy and communicate with in a pleasant way….in the NOW….its the families who hav the heartache… the workers I hav been with can always laugh and do a great job

    2 REPLY
  2. My Dad suffered from Vascular Dementia. His behaviour became very confronting. Luckily he was being cared for by people who understood what was happening to him. When I first spoke to one of the carers about his behaviour, she replied and I quote, ‘ he will fit right in here.’ Such a relief.

  3. My father suffered from dementia and it is one of the most devastating experience when they don’t recognize you anymore. I found that asking him about his childhood and gradually bringing him through the years would eventually trigger his recent memory. This was an enormous kick for him and you could see his face light up when the memories of his youngest son returned.

  4. How come so many get elected — with all due respect to those suffering from it — but there those who make it through elections and then they publicly prove their affliction.

    2 REPLY
    • If you had lived through dementia in a loved one, you’d not make light of it, even prefaced with “with all due respect”. In my experience, when someone says this, they mean “with no respect at all”.

    • Bloody hell Bill this is not something to make light of.

  5. A very cruel illness. I saw my cousin, Deb, go through it. Now Toni’s father in law is taking this journey. My heart goes out to the people who have it & their families & friends who are watching them go through it.

  6. Yes, she died recently fell and had a stroke in nursing home she had been placed in recently. Very upset that her family would not have her. Bit of a handful at times.well meaning but very scared. Sje would continually repeat stories until I would say “Jill you have told me that” – or I would be joining her! She learnt to accept this, but would forget and one just listened. So sad but once her husband died she deteriorated rapidly.

  7. My father had Alzheimer’s for 7years before he died in 2012 now my mother has had dementia for the last 3 years it is and was so hard every time I go to visit her to see my mum in body but not mind it is a horrible disease but one thing I can take heart in is mum still recognises her kids

  8. My mother had a toxic dementia….told hilarious whoppers she even thought my father was still alive n made him bacon n eggs…..poor dear we got her back with Dr’s help… all the meds….vascular n korsikoffs quite a different story

  9. Staff in care facilities are angels. True angels. They work so hard for so little money and I saw nothing but care and respect from 99% of them. I too remember apologising once as mum as a little fiesty. The response, ‘she’s a proper lady and that is the only way I see her”. Broke my heart, as that was indeed who she was.

  10. My wife has dementia , about four or more years now it becomes very frustrating at times, Everyday is a challenge , sometimes I donot cope at all well. But we must keep going , I can’t look to the future at the moment, Rhonda has just turned 59 , I take her to the clinic once a week it’s four hours with others like herself , ages between 35 to say 70 ish not great , the younger folk I feel more sadden for.

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    • I can relate with you Curtis except it’s my sister , the hostels and respite are not adequate for anyone with younger onset Alzheimer’s, the majority of people who my sister mixes with are 80 plus. At the moment it’s to late, she is beyond help. But don’t loose hope, but please get more assistance and don’t agonise about her staying in a nursing home or respite you need to look after you, so you can carry on. We have cried buckets but there is no stopping this insidious disease. Wishing you and you wife the very best, and if I my give you a nice hug. 😊 my sister a nurse got Alzheimers in her late 40’s.

  11. My late husband developed Alzheimer’s, it was a very painful and stressful almost 15 year journey. I was fortunate that his last 5 years were in a unit where the care was extraordinary. My family was supportive – I could never have coped otherwise. My saddest observation during the last 5 years were the number of patients who had virtually nobody to support and visit them.

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