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Mum diagnosed with early onset dementia

Hello, I hope I'm posting in the right place. Last month my mum got diagnosed with early onset dementia aged 62. The diagnosis was a huge shock to everyone in the family. Any advice would be much appreciated as we're not sure what to expect.


  • danWdanW Posts: 9

    I'm sorry to hear about your mum.It's a horrible illness but there's help out there. Try finding a support group, we found it really helpful. Make sure to keep her brain active as well by keeping a journal for example. Also exercise can help, try going on a walk or gardening a couple times a week.

    Here's some more information too:

  • Hi Mary78. I am sorry to hear this! Its the hardest when everything feels unknown, but use the articles on this site to help guide you. Try not to get overwhelmed as everyone is different. Just make sure you have a loving base and patience you'll get there!

  • Mary78Mary78 Posts: 30 ✭✭

    Thank you so much for you support it means a lot to us now. I will try and look for the articles thank you

  • George RookGeorge Rook Posts: 1

    Dear Mary, dementia is just a name for symptoms caused by disease in the brain. Having it diagnosed does not change anything at all. Your nan is the same person as the day before diagnosis.

    i was diagnosed at 63. My symptoms were mild, with a few specific difficulties. They have progressed slowly, and ai still, at 69, live my life as I wish, doing things that give me pleasure.

    Please only change your behaviours towards Nan in so far as you have to so she can follow or understand things. Support her when she asks or needs it, but allow her and encourage her to go on as before. Be positive. Be cheerful. Be yourself/herself.

    she must go on doing shat matters to her. What makes her smile. She may need support occasionally, but she will find new ways of doing things.

    Try reading my blog. I try to dispel myths and challenge stereotypes. https://georgerook51.wordpress.com/

    contact Young Dementia UK.

    contact Innovations in Dementia and The DEEP network of peer groups. There may be one in her area. And we meet on zoom at the moment.

    please encourage her to be open, not to hide it and herself away.

    If she is not on twitter, encourage her to join and follow like minded people in the dementia community. Like Wendy Mitchell. Indeed, read her book.

    ignore the doom merchants. Ignore those who say it is a crippling disease or death sentence. It is not. Any more than any disease. Or life!

    Wish her good luck!

  • John HewittJohn Hewitt Posts: 2

    Hello Mary,

    I am very sorry to read your situation, what very bad luck.

    My wife was diagnosed 2 years ago and had great difficulty accepting the diagnosis because it caused her to loose a lot of her freedom.

    The biggest mistake we made was taking the driving test and her subsequently loosing her licence. You have to report the diagnosis to the DVLA but you do not have to have a test unless they tell you to. We did it voluntarily expecting that as we paid for it we would have some greater control of the situation. However the test centre we went to were very negative and a 2 - 3 hour session involving discussion followed by a Cognitive Test followed by a driving test in a strange car in a strange location was too much for my wife. We were then told that if we did not notify the DVLA of her failure they would. I am unsure if other testing station are different but I do understand that some are a great deal more considerate. Make careful enquiries of any testing station that may be in your area.

    In addition my wife was unwilling to reveal her diagnosis which I fully understood but it is very difficult as family and friends will begin to notice some differences as time passes and will become questioning. In time you will have to tell them and if they are good friends they will immediately be understanding and supportive. You will need support and there are some excellent voluntary services and groups for your Mum and for yourself and whilst you may not be your mum's "Carer" yet getting early advice and other carer's experiences will help you to plan.

    The most important thing which I found out was NOT to run he life but to help her to run her own.

    Good Luck and may it progress very slowley.


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