What are the benefits of a diagnosis?

[Kingfisher1]

My 92 year old BIL is looked after in his own home by carers. They have recently asked me to make an appointment for him with his GP as they believe he has the onset of dementia. What benefits would there be for him if he has a definitive diagnosis? How will it help him, or is it something to do with benefitting the carers? He is housebound so the GP would have to visit him at home, what tests would they carry out? He is very confused (although has periods of perfect lucidity) and has started asking where his mother is and what has happened to his brothers and sisters (they have all passed away sadly)

Will a diagnosis help in any way at all or would it be better to just leave him in peace as surely these things are expected at his advanced age?

 

[Beate]

Not every 92 year old has dementia! Wouldn't you want him to get medication if appropriate and the chance to get support from social services as well as the possibility to apply for Attendance Allowance and subsequent council tax disregard, to name a few things?

 

[canary]

If he does have dementia then Im afraid that things will only get worse. A diagnosis of dementia can open doors. I have been struggling for a long time with my husband and just been told that he has depression. They are now talking about dementia and if he is diagnosed with that I will get more help.

 

[Saffie]

All dementia is not caused by Alzheimer's of course but if a diagnosis of Alzheimer's is made, it warrants medication that can slow down the progress of the disease in its early stages. This would be better for your BIL, especially at his age, as it might possibly mean he would not deteriorate to the severe stage of the disease, due to his age and chance of passing away before this is reached. It could also give him a better quality of life.

If his dementia is caused by other factors e.g. vascular, although no medication can help, diagnosis can bring benefits as suggested already by Beate.

 

[Kingfisher1]

Thank you so much for you kind and helpful replies! Beate, I didn't mean my question in a nasty way, I just want the best for Harry and if a diagnosis of dementia would help him then of course I will make the necessary arrangements for his doctor to visit. Being new to all this I don't understand about the benefits and pitfalls of diagnosis, for instance I didn't know about the whole council tax thing because Harry pays full tax at the moment and living in London that is very expensive so if I can get him a reduction that would be great! Also if there are any medicines that can help him I would like to know about them as his GP doesn't have any input in his treatment at the moment except to issue prescriptions for paracetamol and blood pressure tablets.

So you have all been very helpful, and I'm sorry if my post came across as insensitive, I certainly didn't intend for it to be like that.

 

[balloo]

All dementia is not caused by Alzheimer's of course but if a diagnosis of Alzheimer's is made, it warrants medication that can slow down the progress of the disease in its early stages. This would be better for your father, especially at his age, as it might possibly mean he would not deteriorate to the severe stage of the disease, due to his age and chance of passing away before this is reached. It could also give him a better quality of life.

If his dementia is caused by other factors e.g. vascular, although no medication can help, diagnosis can bring benefits as suggested already by Beate.

a don't know about help but my MIl has vascular dementia ad has lived with us for over 2 years she cannot make hot drinks forgets to eat and drink and cannot cook. help not sure what you mean we have just got attendance allowance for her and 1/4 of council tax but that's it .ANd a sitter 9 hrs a month from Age Uk so I can have time with my husband alone. Thats all we get .I have had to cut my hrs I work from home from 52 to 15 .

 

[Kingfisher1]

Please could you tell me what the "tests" might involve as Harry might not agree to them and I would like to have a little chat with him beforehand to put his mind at rest? His normal response is "NO DOCTORS!" if I mention anything to do with the medical profession

 

[Saffie]

help not sure what you mean we have just got attendance allowance for her and 1/4 of council tax but that's it

My post didn't mention help, merely benefits which you say you are already receiving.
If diagnosed with Alzheimer's, medication can help.

 

[Saffie]

Kingfisher, have a look at the AS Factsheet on diagnosis.
I've added the link below.

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200346

I hope it helps.

 

[Beate]

Thank you so much for you kind and helpful replies! Beate, I didn't mean my question in a nasty way, I just want the best for Harry and if a diagnosis of dementia would help him then of course I will make the necessary arrangements for his doctor to visit. Being new to all this I don't understand about the benefits and pitfalls of diagnosis, for instance I didn't know about the whole council tax thing because Harry pays full tax at the moment and living in London that is very expensive so if I can get him a reduction that would be great! Also if there are any medicines that can help him I would like to know about them as his GP doesn't have any input in his treatment at the moment except to issue prescriptions for paracetamol and blood pressure tablets.

So you have all been very helpful, and I'm sorry if my post came across as insensitive, I certainly didn't intend for it to be like that.

I know you didn't, but even a lot of doctors seem to think what's the point in a diagnosis and I think there is always a point if only that you can get clued up on how to best communicate with that person etc. A memory clinic visit would involve a cognitive test plus a blood test and maybe a scan - not necessarily all on the same day. I think it started with the cognitive test so he would be asked some questions, and I was asked how I felt he was as well - it helps them mak a diagnosis as often patients think there is nothing wrong with them.

The prescription of any medication would be down to the memory clinic doctor who would forward it to his GP so he can continue with repeat prescriptions. You're usually seen every half year again for a follow-up appointment.

If your BIL lives on his own he should actually already be on a single person discount for council tax that shaves 25% off the bill. If he is disregarded due to severe mental impairment, that bill would reduce to zero. If he lived with someone else his disregard would reduce the bill by 25%. I've never understood why it doesn't go down to 50% but that's how it is.

Attendance Allowance is not means-tested, there is a lower and a higher rate. It would be a good idea to fill it in with the help of a charity like Age UK as they have experience with this. You should fill it in with the worst day in mind not the best and list every help he needs whether it's fulfilled at the moment or not. If he needs help at night as well, the higher rate will be paid.

 

[Beate]

I should add that in any case it would be a very good idea to get power of attorney sorted ASAP while he still has the capacity to understand what he has to sign. These forms look daunting but aren't all that bad actually. You can fill them in online or in paper form. You can also ask charities to help you with these. A solicitor could do it as well but that can cost hundreds. We did both forms (financial and health) ourselves so the only cost were the registration fee of £110 each, which reduces to half if the donor (your BIL) has less than £12,000 a year coming in, and if he is on qualifying benefits he doesn't have to pay at all.

 

[Kingfisher1]

Thank you both very much, and I will have a look at the link too.

Beate, Harry cannot get out of the house unfortunately as his legs don't really hold him up any more and spends most of his time in bed. So any trip out to a memory clinic would be very difficult unless the hospital would be prepared to come and get him up, dressed and on a stretcher and then bring him back and put him back to bed. He doesn't want to go out, he doesn't remember where he lives and the last time we tried to get him out it all ended in tears as he got so upset and bewildered and just wanted to go home. I wonder if they would come to him?

 

[Beate]

I am pretty sure they would if you asked! You could also try and dress it up as a visit from a friend rather than a doctor if they played along.

 

[Saffie]

In our case, the GP referred my husband to the Consultant Psychiatrist who did come to the house. He carried out the Memory test and diagnosed Vascular dementia on the basis of my husband having been a diabetic fron the age of 37 and having associated Peripheral Artery disease a few years later. He said no benefit would be derived from having a scan so didn't arrange one but, in case there was an element of Alzheimer's present as well, he prescribed Aricept.

My husband actually attained the 'normal' score of 28/30 but the consultant said this would have been skewed due to his high level of education! So, the test is not particularly accurate but can refelct deterioration when carried out at intervals.

The Aricept had to be overseen by the nurse in the Memory clinic for the first 3 months whilst the dose was adjusted - there can be side effects - and then passed on to the GP surgery. Afterwards, the only contact my husband had with the memory clinic was an annual review, I suspect to see if the prescription of Aricept was still appropriate.

If your BIL cannot get out of the house, I dare say the CPN could do this review - if your lucky enough to ever see a CPN - we never did!

 

[JayGun]

My parent's friend had to go into nursing care in his 90s, when carers coming in and out wasn't enough any more and he needed somebody with him 24/7.

It was more stressful and upsetting for him than it needed to be because after a few days in the nursing home they said he would have to leave because he clearly had dementia and they weren't set up for that. An official dementia diagnosis would have saved him the distress of having to move again.

Just a thought about the benefits of a diagnosis.

My mother in law (84) was a bit happier once she knew there was a disease causing her symptoms and she wasn't going mad as such. She doesn't have many physical problems so I wouldn't be able to get any help for her without the Alzheimer's diagnosis. It can open doors.

On the other side of the coin, we have been told that my husband's uncle (81) has been advised by his GP not to make the diagnosis official "because they'll stop you driving".But that's a whole other can of worms.

In Harry's situation I'd be tempted to consider trying to get the diagnosis and then leave it at that. Did you know that you can phone and speak to his GP? They can't break patient confidentiality, but he or she could perhaps give an opinion on whether Harry would benefit from a diagnosis in terms of access to services?

Best wishes to you both.

 

[Beate]

Yes you have to report a dementia diagnosis to the DVLA. It doesn't automatically mean you have to stop driving but let's face it, the older we get the more our hearing, eyesight and reflexes fail so how fit a 92 year old is for driving even without dementia is debatable and should be looked at individually anyway.

 

[Kingfisher1]

Oh he doesn't drive, he gave that up about 20 years ago. I already have POA for him Beate but thank you for mentioning it.

I did a quick test on the MMSE thingy using answers I think Harry would have given and I believe based on his recent cognitive abilities he would score roughly 8/20. He certainly wouldn't know what the date or season was, and I highly doubt that he would be able to answer hardly any of those questions. I shall call his GP first thing on Monday morning