1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #1 jc141265, Sep 20, 2005
    Last edited: Sep 20, 2005
    I've always wondered if there might be a link between Dad's early onset dementia and the way he was before he got it, I know we all struggle with wondering why they got this disease and I'm probably grasping at straws, especially as there are so many different types of dementia but did anyone else's early onset dementia sufferer display these kinds of behaviours:

    1. Dad was almost obsessive compulsive about things, had to stick to the same routines, got unreasonably angry if you disrupted his routine;
    2. Dad was extremely smart, extremely high IQ (this is partly why I think this is the worst fate to have befallen him), never was able to put a brainteaser to him that he couldn't answer in seconds;
    3. Dad was a mainframe computer programmer originally,he later worked as a sugar chemist and then was company manager;
    4. Dad would get extremely angry if he drank, he was never a happy drunk, he might start off happy but then you knew there would be hell to pay later;
    5. Dad was a quiet very private man, with few friends, but greatly respected by many, i.e. he didn't let people in;
    6. Dad was a workaholic;
    7. Dad would never want to do any fun stuff, but when you managed to drag him to it he would enjoy it;
    8. Dad grew up in a very poor family in Northern Ireland, 6 of his eight brothers and sisters died from cancer before the age of 60;
    9. Two of Dad's siblings were alcoholics, one was a gambler,i.e. addictive personalities;

    I know that there is little chance that these issues are related to/the cause of/or predecessors of his dementia but I do wish researchers would collect data on dementia sufferers so that patterns could be recognised if there are some. I am pretty certain that it appears that many personality types make up the later onset dementia sufferers but don't know about early onset dementia sufferers. Thus this post in this section.

    I appreciate any feedback.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    The problem with research on dementia is that it all has to be retrospective at present. Most then has to be subjective, based on other people's accounts.

    For instance, in our own case:

    Jan, who has dementia, compared with me [I don't have ir as far as I know] :eek:

    1. Dad was almost obsessive compulsive about things, had to stick to the same routines, got unreasonably angry if you disrupted his routine;

    Jan - no
    me - no, though I am a rut person, unhappy in new situations until I have made a rut there. I don't get angry.

    2. Dad was extremely smart, extremely high IQ (this is partly why I think this is the worst fate to have befallen him), never was able to put a brainteaser to him that he couldn't answer in seconds;

    Jan - yes, highly intelligent and a fabulous musician
    Me - I'm not highly intelligent, but I like to think I'm not too dim

    3. Dad was a mainframe computer programmer originally;

    Jan was a musician initially, then did a range of jobs, culminating in credit control. Total waste of her capabilities.
    I was a mainframe computer operator/programmer/manager over my first years, later in sales and marketing but mostly support of computer users.

    4. Dad would get extremely angry if he drank, he was never a happy drunk, he might start off happy but then you knew there would be hell to pay later;

    Jan - never drank a lot, was always lovely, with booze or without
    Me - rarely drank a lot, crawled to a corner and slept if I had too much

    5. Dad was a quiet very private man, with few friends, but greatly respected by many, i.e. he didn't let people in;

    Jan - initially hugely gregarious but dementia stole that from her
    Me - shrinking violet who broke out as Jan's dementia took hold

    6. Dad was a workaholic;

    Jan - worked to live
    Me - made early decision that my wife was more important than any job

    7. Dad would never want to do any fun stuff, but when you managed to drag him to it he would enjoy it;

    Jan - always up for fun
    Me - had to be dragged in, but generally enjoyed it

    8. Dad grew up in a very poor family in Northern Ireland, 6 of his eight brothers and sisters died from cancer before the age of 60;

    Jan - poor-ish family in South Wales; 2 elder sisters both alive, one possibly with dementia starting
    Me - less poor family, but broken home. Late arriving brother, much younger.

    9. Two of Dad's siblings were alcoholics, one was a gambler,i.e. addictive personalities;

    Jan - one sister drank and smoked too much [the one with probable dementia]; the other is moderate in all things.
    Me - my brother and I collect things - family history, photos, etc. Neither drink that much, nor smoke [my brother has given up on that; I never did]

    So, what can one make of that, in connection with your Dad's info...?

    Clearly research would be a good thing on a representative sample of the population, both with and without incidence of dementia. The range of factors [location, relationships, habits, genes, proximity to pollution of some kind, travel, work and conditions, accidents, etc, etc] would be immense and the research would be a major thing requiring many years and lots of data.
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    The dreamer

    Having done a bit in statistics and data collection, and with today's technology, I can't see why collecting such information and finding patterns would be a problem. If every doctor treating a dementia patient entered such data onto a world wide database (completely possible in today's computer and internet age) imagine the possibilities and at very cheap cost. It may be that such a database would find that absolutely no patterns exist but that is still finding something.

    I know, I know I'm a dreamer.

    I also know that if someone could tell me that absolutely no patterns exist, or that only those who grew up in poverty, etc tended to sufferbased on scientific evidence not just a few cases compared, I would sleep a lot easier at night. I also know that based on laws of cause and effect, it is very unlikely that a pattern doesn't exist. And if a pattern was found this could bring cure and prevention so much quicker to the world.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I've worked in analytics too and theory is very different from practice.

    If you take into account the way a single medium size business may work today, then it collects all sorts of data:

    employee data
    customer data
    data from their web site
    data from their products
    data about their market

    that is just some of it.

    Many companies today create a 'data warehouse' where all this stuff should be available and cross related, so they can do what is called 'data mining' to understand interactions, reasons, trends.

    But the task of normalising and validating data even in one company, where hopefully everyone is singing from the same hymn sheet is enormous and hugely costly.

    If you then grow the company to a global one, and the problem gets huger.

    Now take a worldwide collecting of data on every factor that might cause/influence the development of dementia. Just ensuring the data was valid and consistent would be a challenge.

    That is not to say it couldn't/shouldn't be done - but it is not an issue of technology. Current technology can handle it. It is a question of finance, will, ability, priority, data protection, international collaboration, etc etc.

    But reasons can be found! In the place I worked, I once asked a data warehousing expert what was the payback time [ie how soon to get return on investment] for implementing a warehouse. She said there was an insurance company that had only been evaluating what they needed to do, and they immediately found fraud within their own company. In their case, payback was before they had even implemented the warehouse.

    We just need to keep plugging away...
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    There's the answer!

    Who could save millions by setting up such a database?

    Insurance companies! :D
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I think you would find that all illnesses would need to be catered for though, not just dementia, cancer, cardio-vascular, and also things like infertility, and far too many to mention. A mammoth effort.

    Final concern would always be that once insurance companies - for example - knew the causes of something like dementia, they would refuse cover to someone because of their situation way before they ever got close to showing signs, possible when they would never get the disease anyway.

    In Jan's case, the medical insurers funded much of the exploratory work prior to diagnosis, but dropped her like she had the plague once there was a diagnosis.
     

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