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. Jacqui Allen

    Jacqui Allen Registered User

    Aug 5, 2004
    2
    Hi Everyone,

    It has been suggested that the social and psychological context of younger people with dementia is different to that of older people. Younger people are more likely to be working, thus the loss of pension rights may place considerable strain upon the family. The loss of a driving license may also mean loss of independence and possible social isolation may lead to feelings of low self-esteem and depression. All these things may affect children. Family conflict is also often identified by carers as a possible side effect of dementia. Some carers have stated that their children had suffered psychological or emotional problems as a consequence of the dementia. Parents have reported that their children may have suffered emotional problems, problems at school and conflict with the person with Younger Onset Dementia, especially when the affected parent was their father.

    I am training to be a Clinical Psychologist at the University of Birmingham and as part of my doctorate I am investigating young people’s thoughts regarding their parent’s Younger Onset Dementia, and the impact that this may have on their relationship. Perhaps in the future understanding the healthcare, psychological and emotional needs of children, will help to build services in the future based on the needs of families.

    I wondered if any other trainees/students have an interest in this area and would like to discuss the pros and cons of the project. Obviously it is an extreemely sensitive area and the ethical issues have been thought about very carefully.

    I would be really interested in your views
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jacqui

    Welcome to Talking Point! We put in this particular Student section because we are aware that it is those who are students right now who may, in the future, come up with something that can alleviate the worst effects of dementia, if not sort out the causes.

    Yours is, as you can see, the first post, so you are especially welcome.

    It is great to have you acknowledging the sensitivity of the area, and also the ethical factor.

    I can't help you directly myself. My wife is an early onset person, and I know ALL of the problems associated with trying to work and care at the same time, as well as being especially aware that I've blown my pension, etc

    However, we don't have children, neither am I a person who has knowledge of dementia in a parent of mine.

    I do hope that you will benefit from joining the forum and please do let us know if we can help in any way.

    At this early stage there will be very few students who will know of Talking Point or the opportunities it affords for details of hands-on caring experience, or indeed of the needs and problems of dementia patients and families.

    It would be good to build a community of students with an interest in the subject, and if you have any ideas how we can do that then please yell! Perhaps a first stage would be to bring the forum to the attention of your professor/supervisor/whatever. They may know of interest groups in the med. schools.

    Best Wishes
     
  3. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    reply to Jacqui

    It was very interesting to read your post. I am wondering the same as my husband was diagnosed four weeks ago and he is only 51!

    Our sons are 17 and 22 but my husband has been ill for some years so life has been difficult sometimes as a family.

    I can't really say more at present as although I am sneaking entries on this forum (as I feel I need the support) I am trying to respect his wishes not to discuss him behind his back.

    I can only say I think that there are very probably a different set of 'problems' for familes of persons who have youger onset dementia although many 'problems' i expect are the same for all age groups. I as a relative beginner in the caring scene can not say very much.

    egg
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    When I joined the forum I believed that there were huge differences between those experiencing dementia at an older age, and those with early onset dementia. Perhaps that is to be expected since early onset dementia is one of those things that so few people know about - there is precious little publicity.

    Over time I have modified that view somewhat, though my impression these days is that, overall, the different experiences of those with early onset are additional to those of the older age groups, but not so much generally different.

    There are classic problems of
    • identification of early symptoms
    • early attempts to cope
    • quandary: whether to tell anyone
    • dealing with symptoms as they get worse
    • getting the medical fraternity to recognise there is something wrong
    • getting a diagnosis
    • identifying models for coping with behavioural problems
    • coming to terms with the long term
    • realisation of loss [of future, of partner/parent]
    • protecting parent/partner
    • confusion of all parties
    • lack of initial knowledge of where to turn
    • presence of too much information from a variety of sources
    • grief
    • difficulty of identifying care services
    • difficulty of gaining access to/funding for care services
    • difficulty of being able to make care home visits [distance, time]
    • etc

    To these the early onset family adds
    • total unexpectedness of this problem affecting them at such an age
    • additional financial strain
    • perhaps children/young adults involved: what are effects on them, emotional, educational
    • major problems of spouse: to work or to care, or to try both; what about children
    • additional financial problems: spouse and/or sufferer blow their chances of a pension, yet there may be many years left to one or other of them
    • spouse put at risk when finally left alone: financial risk - no pension and home may have gone by then; emotional risk - age may be difficult by then for starting another life
    • etc

    I've left off loads here but I'm sure others will add stuff.
     
  5. Jacqui Allen

    Jacqui Allen Registered User

    Aug 5, 2004
    2
    yod

    Hi Brucie,

    Sorry it took me so long to reply. I agree that there are lots of similarities between perhaps the 'processes' that families either younger or older need to go throught when a family member is diagnosed with dementia at what ever age. As you pointed out it is quite some task list. Thats why I think it is so important to find out what impact these 'processes' and also emotional plus psychological changes that are occuring within the family have on children and young people. When there are so many changes and such a lot is happening it is bound to be difficult for them. If we knew what 'bits' were particularily difficult or when families most need help, we may be able to ease the burden a little bit.

    regards

    Jacqui
     

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