dementia advice .

edited 26 December 2010 at 9:09PM in Over 50s Money Saving
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Old_GitOld_Git Forumite
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edited 26 December 2010 at 9:09PM in Over 50s Money Saving
Advice please ,A relative has been diagnosed with first stage dementia.
They have home help three times a day ,but otherwise they are on there own .In general terms ( I know its hard to be certain ) how long can someone with dementia continue to live on there own .
Is it advisable to tell the person at this stage (or any stage ) that they have dementia .

If they have to go into a home they will be self funding ,should we sort finances now .All finances are in there name only .
"Do not regret growing older, it's a privilege denied to many"


  • barnabeebarnabee Forumite
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    Dementia is so cruel. The illness is known as the 'long goodbye' but the earliest that essential plans can be made the better.

    The Alzheimers Society have some good advice when first coping. The link is here

    Power of Attourney, finances, will changes and other legal matters may be more complicated if a diagnosis has now been made.

    After 10 years with my Mum the best advice I can give is to enjoy every single moment and ensure your relative does too.
  • veggieblobveggieblob Forumite
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    There is no substitute for good medical and professional advice, but from my experience there are a couple of things that may help make life a little easier for as long as possible - try to keep some sort of routine going as it may help them feel safer and calmer, and talk to them about things that are in their long term memory to keep them in touch with reality. Especially in the early stages the long term memory is still quite good. This is just from my own experience with others and my not be appropriate for your relative, but I'd still like to show my support for you - it is not an easy thing to deal with but there will be good days and funny moments to balance the hardship I hope.
    Sue x
  • anamenottakenanamenottaken Forumite
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    Old_Git wrote: »
    Is it advisable to tell the person at this stage (or any stage ) that they have dementia .

    I find it so sad that the person about whom the diagnosis has been made may be the only one involved who does not know what it is. She is being lied to by omission.

    Perhaps this could prompt others to let their loved ones know whether they would want to know (or not) if such a diagnosis were made on themselves.
  • katrinaokatrinao Forumite
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    In my experience people with dementia can continue to live independently in the community for a long time. There is no need to rush off and find a care home just because a diagnosis is made provided your family member is safe and supported, however all assessments are based on the individual.

    have you contacted your local social work department to ask for some advice on community supports or assistive technology within the home(if required)? Access to non personal care services although chargeable, can often help provide support and social stimulation allowing people to live at home longer.

    as far as finances go, I take it your relative still has capacity to make informed decisions regarding who they wish to manage their finances having only been diagnosed recently. In Scotland a POA can still be nominated as long as capacity is intact, I'm unsure of legalities South of the border.

    Hope that helps a little
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  • janeawejjaneawej Forumite
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    Its sad but good that you have got an early diagnosis, it took me years to get mum diagnosed because she was verbally very eloquent and plausible but not so once she was home and trying to care for herself, in the end the Dr sent a specialist social worker round and she sussed mum in minutes thankfully and helped put in place the support mum needed as with 4 young children and a job as a single mum I wasnt able to help her enough, when she was unable to live independantly she came to live with the kids and I, it was very hard but i dont regrert a minute of our last 3 years together. Make sure you set up an enduring power of attorney as soon as possible, however it only needs activating when your relative is unable to deal with their own finances but will save time and fuss when it is needed and make sure your relative gets the help they need straight away, I had to pay for mums care for 18 months and got heavily in debt because the solicotors waited too long for this. With good care and planning your relative may be able stay in their home for many more years
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  • i don't think there are any hard and fast rules - there are so many different types of dementia that have different patterns of change and put on top of that the personalities of the individuals involved and any other medical problems.... there are so many factors.

    i agree that the best advice is to set up the power of attorney and suggest that the relative makes sure that they have a will set up and all those kind of things. morbid, but practical and best dealt with as soon as possible.

    i haven't seen a situation where the person wasn't told about their diagnosis.... presumably they are under the care of some kind of memory clinic who will be monitoring their progress and making decisions about any kinds of medication? i'm also unclear on what they mean by 'first stage dementia'. they should be able to be put in touch with various services and support. who is attending their appointments with them? they usually ask for someone else to come along to give their perspective.

    information about all kinds of dementia are on these websites - everything from how to cope as a relative to how to help. a scary but massively helpful read.

    the only other practical advice is to keep all the family in the loop. managing other people can be difficult when they don't necessarily understand, or want to have an opinion on treatment/lifestyle changes without really knowing what's going on.

    it must be a difficult time.... good luck. being prepared can make a real difference
  • Old_GitOld_Git Forumite
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    thanks for all the replies .I found out about the dementia last week .I asked the GP if she had dementia ,otherwise I may not have been told . The home help ,did tell me about the dementia a few months ago .The home help has experience off working with dementia I dont . I do think these people should have passed on there concerns earlier if they know things where not right .The family beyond myself dont want to know and have already said "stick her in a home and forget about her " .I know I will have to deal with this on my own .To put it in perspective she is 79 and got 5 birthday cards this year ,I bought them all .So if the family wont buy a birthday card there is no chance off anything else.
    The GP has said she will need more regular visits ,which is difficult because they dont live near .I was considering asking about a move to sheltered housing nearer me ,but I am not sure if this would be a right or wrong move .
    The GP has said between him and I we will monitor the situation .No medication at this stage .
    So many things I dont know .
    "Do not regret growing older, it's a privilege denied to many"
  • sheilavwsheilavw Forumite
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    My mums nearly 84 and has recently been diagnosed. Its came on over a few years, started with just forgetting, but in last few months wandering out. She started on Aricept last week. Its difficult because she lives with my brother who has downs syndrome and is 43. Me and my sister go every day between us but we both work full time. We havent been offered any other help, just to apply for her to get attendance allowance which they said helps towards taxi costs to hospital etc. She is coping fairly well and we help a lot with laundry, cleaning making teas etc. If the medication stabilises things perhaps we can carry on with her at home because shes fit and healthy otherwise
  • MojisolaMojisola Forumite
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    Has she been seen at a Memory Clinic or did the GP diagnose the condition? If she hasn't been seen at a Memory Clinic, I would ask for her to be referred.

    If she hasn't been prescribed any medication, such as Aricept, ask why. The medication doesn't help everyone but it has given my Mum several extra years of independent living.

    As for planning a move - the worse your Mum gets, the harder it will be for her to adjust to somewhere new. As you also have your brother to consider, start planning now how you will deal with their future so that you can think it through and not have to deal with a move as an emergency.
  • well the GP needs to decide what type of dementia it is, because that has massive implications for what treatment options there are.... my take would be that a formal assessment in an old age psychiatry clinic would be useful too, but that isn't always an option. i'm very surprised that a non-specific diagnosis like this would be made without involving the family to give information about memory problems in every day life.

    have a meeting with the GP - they may be very experienced in this and entirely appropriate to manage to care, or a referral may be a better option. this doesn't sound like it's been managed very well so far in terms of information being shared and i think some kind of meeting with the GP to find out who has been told what might be useful. you are going to have to manage this situation if the rest of the family isn't interested, so they need to know to keep you 100% in the loop.

    i'm glad that you're looking out for your relative - sounds like no-one else will.
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