Younger vs Older onset dementia?

Source: Eyre Peninsula Tribune

Source: Eyre Peninsula Tribune

Dementia is a syndrome, and is the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. It is a terminal illness. There are approximately 100 types or causes of dementia; Alzheimer’s disease is one type of dementia, and is the most common type of dementia. Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process. Dementia over the age of 65 is more recently being referred to as older onset dementia, and under the age of 65 as younger onset dementia (YOD). All age groups go through the stage of early onset dementia. Alzheimer’s Disease (AD) and all dementias as currently not just incurable but untreatable. The available drugs for AD can alleviate some of the symptoms, but they don’t cure the disease. There is currently no treatment for the other types of dementia.

There are many differences in the experience of a person diagnosed with dementia under 65 vs being over 65.  Obviously in reality I can only discuss my personal experience, but I have seen it through being a carer of older people with dementia. With certainty though, I can say I have thought about this question a lot, mostly because of my own diagnosis.

The picture above is of me with my mother and another member of the Cleve Probus Club… most people would not expect the younger person in it to be the one diagnosed with dementia.  My mother remains deeply sad, and often horrified that her daughter has dementia.

Recently I was discussing with a friend about younger onset dementia being different to older onset dementia, and was told, ‘what a load of bollocks, older people have as many things to lose as you do’. I disagree with this person, and I do think in some ways, it is worse, perhaps in the same way as dying from cancer aged 48 as opposed to dying from cancer aged 75 is. We do have more life or living to lose, and therefore more lost dreams. The idea of not seeing our children get to 21, or marry, or to meet our grandchildren is distressing, and although older people lose their dreams too, they have experienced so many more of the dreams and experiences younger people are losing.

Imagine being diagnosed with dementia in your 20’s or 30’s; I think it is worse, the younger a person is, which is probably true for any terminal illness or serious chronic condition. Suffice to say, it is not a competition of how horrible it is, merely a recognition it is very different. For older people, I imagine losing a partner you might have been married to for over 60 years is worse, and definitely different, than when you are younger. The longer I am with my husband, I know, the more we ‘know’ each other, without having to say anything, and I suspect, the more I would miss him.

The losses and issues people with dementia of any age face varies significantly, but I felt it worthwhile blogging this updated list of the impact on a person under this age and their families, which highlights some of the differences to someone diagnosed over the age of 65.

  • Prescribed disengagement – we are told to ‘go home, give up work, (and in my case give up study), and live for the time we have left’ (whatever living means after you’ve given up everything!)
  • Usually are are still in paid employment, and there is no support to remain employed
  • We may still have school aged children, or not have had their kids yet
  • Once we have to give up paid employment, usually recommended early, our family income often halves as we become a single or no income family
  • Our symptoms are not generally seen as disAbilities
  • Our health costs can more than double
  • Reduced self worth as our valued roles are diminished or completely negated
  • Increase risk of depression, low self esteem, anxiety
  • Travel costs, to accommodate health care appointments and other services required, increase
  • There are almost NO age appropriate services
  • Therefore many of the Aged Accreditation Standards are currently being breached in the (Australian) residential setting
  • Childcare may be required because the person with dementia not being able to care for their children
  • They may no longer be able to drive; this impacts us in a number of ways, including not being able to pick up their own children from school, take them or themselves to medical or other appointments; they may not be able to take elderly parents to appointments or on outings, and so on, and their partner (if they have one) becomes less able to work as they are required to assist with more
  • Unequal social status
  • The impact of the diagnosis of dementia is treated differently to other terminal illnesses, and no support services are set up as they would be for other terminal illnesses
  • The loss and grief caused by a diagnosis of dementia is often under recognised and under treated, and complicated
  • The fear of a loss of identity, the loss of privacy, of not knowing your children or grandchildren,
  • Means tested carer allowance is not only unreasonable, it is not cost effective
  • The negative impact, and the physical and emotional burden on their children, husband and older parents, as care givers, becomes significant
  • Lack of support for meaningful engagement and pre diagnosis activities

20 thoughts on “Younger vs Older onset dementia?

  1. I agree with everything you have said above Kate. Everyones dementia is different and everyones journey with it is different. I agree, being diagnosed with Dementia at 80 is much worse than at 49, and being diagnosed with terminal cancer at 49 is much worse than being diagnosed than being diagnosed with terminal cancer at 80. I feel for your mum Kate, she sounds like a lovely and very caring mother-no parent should ever loose there child or no parent should have a child diagnosed with dementia or any other illness-it is very very difficult for them to watch and can have an effect on there health too. Being diagnosed in your 30’s or 20’s with dementia is horrible-i hope no one in my family gets in ever. Yes, it certainly is very difficult not getting to see your children reach some very important and wonderful and memorable milestone in there life like there graduation, wedding day, 21st etc. Your income does half and yes the medical costs are expensive when you are faced with something like that. All of the other things you have said above are so true-it is very hard losing your license although i am find being “carless” currently and not having my license although it might change once i have my full becuase i might become addicted to driving!


  2. Pingback: Memory Bank: Blogging with Dementia | Sydney WordPress

  3. Kate

    I didn’t see the mention of losing friends with time …….. this has happened to me.

    What I learnt from the above is that I DON’T have dementia. My disease is a form of dementia if there is no treatment, but I eventually got treatment so I’m left with a lot of symptoms of dementia but it’s not progressing. Here’s a link I found that is one of many saying I don’t have dementia,8599,1930278,00.html


    • It is good you don’t have a progressive dementia, although I know you are living with other awful and chronic health issues… thanks for the link to the article too, interesting. Take care xx


  4. Hi Kate,
    I love this blog and I totally agree with your comments about Old and Young onset Dementia. I have met many people who have got annoyed over people in their 70-80-90s who claim to have early onset dementia etc, because when you get old, you are very lucky if you don’t get dementia. Many years ago people of that age would have been treated for what was called senile dementia, a term which I have been told no longer exists.
    I have also heard people of that age being called younger people with dementia, which was staggering to me, as I believed that the younger people were under the age of 65.
    I was 56 when I was diagnosed, and that came as quite a shock, because I had only ever heard of senile dementia. But like many I lost my job as a University College Engineer, but through the Alzheimers Society I was able to pick the pieses up and start a new life.
    I do think many people get quite a shock when they learn that once we are diagnosed with this illness our travel insurance etc hits the roof, so it sometimes costs me as much for the travel insurance as it does for the holiday.

    Please keep blogging as you are a real inspiration to many including myself, and even reading these each morning, I feel as If I have known you for years, even though we have never met at all.

    Your a real treasure to us all, as you are showing the way in the demenia field

    Best wishes

    Ken Clasper

    Follower on twitter and facebook

    I wrote something this afternoon but lost it somewhere in the ether


    • Hi Ken,
      I love your blog too, and get in into my mailbox… you are an inspiration to me and many others too. Thanks for your wonderful support. It is a pain in the you know what that we have been diagnosed, but on the other hand, it is lovely we have connected, and without dementia, we would not have. Take care my friend,
      Love Kate


      • I agree with Ken Kate-people are very lucky(and there families)if they don’t get dementia before they die-even the most mildest forms. My Dad often days that you are blessed if you have no health issues by 85 or 90 and i so agree💜


  5. Great post Kate. I find myself wondering if the shift towards early (sorry, not allowed to say that any more) I mean TIMELY diagnosis will mean that many more people are diagnosed while they are still quite young. I used to work on a dementia helpline and so often heard people say things like “looking back we can see that there were changes long long before the diagnosis” – and I wonder if this happens, whether it will shift public awareness or not.


    • Let’s hope so Steve… and thanks for joining the conversation here, always great to have new voices. Almost everyone I know diagnosed, says they can see many symptoms retrospectively, usually from years before diagnosis. Let’s hope the awareness campaign helps..


  6. Hi Kate I fully agree with your comments about younger and older onset dementia. I always thought it was very odd hearing people in their 70- 80- 90s talking about early onset dementia, and this has caused many people to get annoyed. It may well be the early stages for them, but not so long ago this would have been the start if senile dementia, something I gather we are not allowed to say anymore.
    I do thiñk this blog is wonderfully written and easy to understand, and hope you can carry on for some time to come.
    I get this blog just in time for breakfast, so I don’t have to hear the rubbish on the news, just read something interesting and entertaining

    ken clasper
    big fan


  7. Beautifully captured and expressed, as always Kate. I would like to share this post on the Young Onset Dementia Facebook page please, I’m sure this post will generate much head nodding in agreement. Warm hugs, Denise


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