Need to discuss Really Early Onset Dementia

Discussion in 'Younger people with dementia and their carers' started by unclekev, May 17, 2007.

  1. unclekev

    unclekev Registered User

    May 16, 2007
    8
    Old Basing, Hampshire
    I have joined this forum as sadly my Brother Andrew has been diagnosed with a very rare form of Familial Early Onset Dementia (Preseniline-1 Gene defect). He has just turned 44 and has been showing symptoms of dementia for at least 4 years. After the usual barrage of tests the medical experts diagnosed Pick's Disease (last Summer) but then just before last Christmas they revised this to a more accurate diagnosis of Familial EOD, specifically a "Spelling Mistake" in Andrew's Preseniline-1 Gene.

    Fortunately he has no children to pass the defective Gene on to, however his wife and the wider family are struggling to come to terms with loosing 'Andrew' as we knew him. The really sad part is that he spent all his working life as a Geneticist and now he has a genetic illness. He has declined rapidly from being the most intelligent member of our family 4 years ago, through pushing Trollies in Tesco's Car Park (the only job he could hold down) to being medically retired las t summer and now struggling with many day to day activities. As yet he is not suffering from incontinence and is still able to walk (albeit with a very slow gait and using a stick) but personal hygene has started to become an issue.

    For me the real frustration is that I live in Berkshire and Andrew is in Cambridgeshire. I want to be there for him on a daily basis but sadly I cannot.

    His local Soc Services have been very good, although I guess this is a Post Code Lottery. He is involved in diverse activities most days of the week, from Art/Pottery through music/movement and even Newspaper discussions.

    He has been told his condition is life limiting and my Mother, Sister (and family), and I are all attempting to provide him with the best quality of life in his remaining time with us. Any ideas on how we can make his life as much fun as possible would be appreciated.

    The worrying part for my sister and I is that, as Andrew has a Genetic condition, there is a 50/50 chance that we could suffer the same fate. Doubly painful in watching our Brother suffer knowing that could be us one day. I keep asking myself why us, but I guess everyone on this Forum probably feels the same.

    Luckily (sic!) Andrew had Critical Illness Cover that has been able to pay off his Mortgage. One less burden on him and his wife.

    I hope I have not rambled on too much but needed to put everything down.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,661
    Kent
    Hi Unclekev, welcome to TP, although it`s a tragedy you have needed to find it.

    This is the place to put everything down, so feel free to ramble as much and as often as you wish.

    We are hearing of more and more people being affected at a frighteningly early age. Not all have such such a definitive diagnosis, but I`m sure that`s no consolation.

    Is there any possibility you and your sister can be tested, or wouldn`t you want to.

    I hope you, as a family can support each other as best you can and will find some back up from posting on TP.

    Take care
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Unclekev

    Welcome to TP. There are quite a number of members who are carers of people with young onset dementia, and I'm sure you'll find lots of support here.

    Your brother is very young to have developed the disease, and I can understand that you and your sister are worried. Is there a test you could have, or would you want to know?

    Andrew is lucky to have such a loving family to support him. It's great that you are all rallying round. Is Andrew able to use a computer? Perhaps he could join TP himself, it would give him some company during the day. We already have one member, KenC, who has AD, and is very active in publicising the issues.

    Thanks for posting,
     
  4. unclekev

    unclekev Registered User

    May 16, 2007
    8
    Old Basing, Hampshire
    Thanks for your support

    Yes, Andrew is able to use a computer, albeit basically compared with where he was 4 years ago. When I see him tonight I will mention TP and see what he thinks. I have just purchased some small unfinished wooden storage boxes for Andrew's two youn g nephews to have as Memory Boxes of Uncle Andrew. They will be able to paint them with him to personalise them and use them to keep objects that remind them of him and their time together. My girlfriend has suggested hand impression kits that Andrew would enjoy doing with them.

    Andrew has always been mad keen on fish keeping, and although we had to dispose of his 6' tank last year as it was beyond his ability to manage it, we are actively trying to get a new 3' one that his Wife can manage for him. The local EOD Nurse says that is an excellent idea as access to animals, especially pets is great for Dementia suffers in their ability to visualise moving objects and show affection.

    My next objective is to discuss with him the benefits of an improved bathroom with a walk-in Shower, they currently only have a bath.

    Thanks for the support.
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    What a wonderful brother you are!

    You're doing a great job finding suitable activities for Andrew, the fish tank sounds a great idea -- less work than a dog! I agree though that pets are good, my husband loves our little Westie.

    Involving his nephews (are they your sister's children?) in making memory boxes is also good. It's so easy to try to exclude children from illness, and I think that's sad, both for the children and for the patient.

    Good luck! I hope you manage to persuade Andrew to join us, it will give him a new perspective.
     
  6. annesharlie

    annesharlie Registered User

    What a very very difficult time with you, tragic as Andrew is so young. I am so saddened to read your story. The one positive I can see right off is that you are clearly facing this together as a family, you are supportive and caring of each other. It will be very important to show support in practical ways to Andrew's young wife - she's the primary caregiver and may well have to cut down or give up on work.
    It would be good to start now with taking him out for a day - I am in a similar position to her and would love to have my family close by to help in that way.

    try to secure all the disability insurance etc that you can before you get testing done - it is such a hard decision to make - I feel so much for you in this situation.

    Your kind spirit comes through so clearly in your letter, I know you will be the very best brother to Andrew for the time he has left. All the best to you.

    Anne
     
  7. lornastevens

    lornastevens Registered User

    Apr 12, 2007
    6
    hertfordshire
    How very young

    I was really saddened by your story and i have to say i share some of your frustrations living in the UK whilst my lovely sister lives in Ireland.

    She has Frontal Temporal Dementia at 48 years old - she is over here at present and her husband is aiming to spend as much time here as possible they fortunately have a property nearby.

    She (Marie) is on antidepressants and they have helped enormously :)
    She is very sunny and cheerful which makes it easier all round. She is going horseriding which she loves and she loves her little dog - she never had time for children or pets before (they were owners of a pub in London for many years) but she loves both now.

    The genetics are an issue and all my family are wondering if we will be affected but i personally dont want to know but will deal with it if and when!

    Talking Point has really helped me - the fact that so many other people are in the same boat all over the world makes me feel incredibly sad and humble but also less alone.

    You seem like a close supportive family and that will get you all through. Everything supposedly happens for a reason so i guess we are being tested?!

    I wish you and your family all the very best
    Lorna
     
  8. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    Dear Unklekev

    Are you sure that you and your sister have a 50/50 chance? Did one of your parents have it? Has a doctor told you this? I thought with that type of dementia you could only develop it if one of your parents had it, but I might be wrong so don't take my word for it.

    My mum has early onset AD and I worried for a long time that it might be genetic as her mother had late onset dementia. We were never told what type her mother had, but looking back on it, it was probably vascular, which means there is not a genetic link with my mum's AD. Plus my grandmother had late onset which means there probably wasn't a genetic link with my mum's. However my mum's father died young so it is possible her carried the genetic AD young onset gene.

    However I wouldn't want to take a test as I know I wouldn't be able to cope if I was told I had the gene. Better to lead a healthy and happy life to give our minds and bodies the best chance for the future.

    I do know exactly what you mean about making it harder knowing that could be you one day. I know it is selfish, but I find it much harder to cope with my mum knowing that.
     
  9. unclekev

    unclekev Registered User

    May 16, 2007
    8
    Old Basing, Hampshire
    Thanks to all for your kind, supportive comments.

    In response to Zed, it is definately a genetic defect and my sister Jenny and I have had a councelling session with the Genetic specialist in Cambridge. Andrew could have inherited the gene in one of two ways:

    Either the defective Gene was passed onto Andrew through one of our parents who had in turn inherited it, in which case some evidence of Dementia would be expected in them, none is known, although Dad had Parkinson's Disease.

    The other option is that when Andrew's embryo was created a defective Egg or Sperm was produced by our parents and therefore he is the first and only person to suffer the illness.

    Both Jenny and I have decided not to be tested as we would rather live in ignorance. However we will have a cloud over us for the rest of our lives.

    annesharlie - Sadly my Sister-In-Law has really struggled to come to terms with her husband's condition and has needed to retain her Job for respite. Unfortunately it is in Central London which means Andrew is on his own at home for 4-5 hours a day.

    The local community team are excellent and have Andrew out doing diverse activities every weekday, from Pottery, through Art to Music and Dance.

    As a family we are arranging activities for him to enjoy with us over the coming weeks and months, Meatloaf concert on Friday, Painting and preparing Memory Boxes with his two young Nephews the following weekend, Taking his Nephews to the Beach so they can bury him in the sand!

    I found out on Sunday that Andrew is now incontinent, his dribbling is in need of medication, and he has been on 'walkabout' around his village. He has also recently become more vacant when trying to converse with him, in fact conversation is now virtually non-existant. I feel his remaining time with us may be very short indeed, although have no real idea, just a gut feeling, can anyone give us an idea over timespans, he was given 5-8 years last year and I feel that time started when he first showed signs and symptoms which is probably 2002?

    Harsh though it may seem I would love him to pass away today, and be at peace at last.

    Thanks for all the support.

    Kev
     
  10. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    I am not so sure about the genetics side. Yes my wifes mother, & aunt had AD at the ages of about 70. My wifes older brother seems to be ok. Yes my wife started age 52, but the healthy living issue seems to be hit and miss i think. Susan has not smoked for 33 years, we eat healthily - fruit veg. and exercise but that has not helped. One thing I have learnt is that this disease does affect everyone differently.
    cris
     
  11. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    #11 KenC, Jun 2, 2007
    Last edited: Jun 2, 2007
    Hi unclekev,
    Welcome to Talking Point from one of the many with Dementia with Lewy Bodies. I can fully understand how you all feel about this, as it is not expected, and when you get the diagnosis like my wife Janice and I you feel as if the bottom has dropped out of your world. I really thought everything was coming to an end but after going to our local AS branch we got so much support and help it was truly amazing. I was also lucky to get medication which got me back on track, although it is sad when I meet others who never got the chance to try it, or those who tried it only to find it did not work.
    Since then I asked to get more involve with the Society as a volunteer, which was nice as it kept me going, but I now find that it has taken over my life. But this is nice for me as it does not leave me with any time to think about what is to come.
    Many others are not as lucky as myself, and I see this when ever I go to the branch meetings and discussions groups which were set up for people who have this type of illness. All I can say is I hope your brother Andrew can use all the facilities he can get. There are a lot of us out here who not only have the illness, but also spend time helping those who are not as lucky as us.
    I am also very lucky that I can use a computer which gets me on to this wonderful website, and that means more to me than anything else, because I can write to people even when I am feeling rough. These are a lovely set of people on Talking Point, and to many including myself it is an extension to our families. It is nice to hear from you, please keep in touch and pass our regards to Andrew.

    Very Best Wishes to you all

    Ken
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Kev, just want to say I really feel for you and the extended family:

     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.