To diagnose or not to diagnose

[SueLin]

All officialdom seems to recommend getting a diagnosis......this opens up the world of doctors, tests, drugs, assessments, support etc...
However my mum has seen at close hand the effect this has had on a couple of friends and does not want this for my dad, and I am pretty much in agreement with her.
My Dad is nearly 80, has pretty obviously got ( what seems to me after a lot of reading) textbook Alzheimers.

Their quality of life is very good at the moment, should we be insisting that he gets diagnosed ... with all the attendant distress.....or keep managing without one.

Has anyone gone through a similar experience.

thanks

 

[stanleypj]

I'm very sympathetic towards your mum's view.

However, the two reasons usually given in favour of seeking a diagnosis are:

1) There are drugs available which might help (they may not though and may have side-effects).

2) A diagnosis ought to give you access to a lot of valuable support.

I'm so glad to hear that their quality of life is very good at present. Long may it continues with or without a diagnosis.

 

[TooHard]

It's tricky.

Mum refused, for almost a year, to consider being assessed because she knew someone who deteriorated very quickly after diagnosis. There was no convincing her that it wasn't the diagnosis which was responsible for the deterioration but the disease itself.

As it happens the diagnosis seems, at times, a waste of time as mum has refused all assistance or support and rejected medication out of hand.

Personally, I think it's necessary so that, if required in the future, we are able to say that she has dementia - for instance if she's in hospital or has a problem in the community.

 

[Kevinl]

With my mum a few years ago I got a "general" diagnosis of dementia from the GP, he did offer to refer here to the memory clinic but I didn't see the point. in those days Aricept (now Donepezil) was so expensive he said they probably wouldn't prescribe it anyway, that added to the fact she became... well let's say "irritated" when anyone questioned her ability so I never bothered.
I think it's more important to get things like an LPA sorted as irrespective of whether it is AZ or not you may need to take more control in the future.
K

 

[Shedrech]

Hi SueLin
I appreciate your mum's view, too
I'm not sure though that a diagnosis has to cause distress - dad was content enough to go to appointments with me and went through the various tests and a scan - he didn't, however, seem to take on board what was said, not even when Alzheimer's and dementia were mentioned to him - maybe he shut it all out, maybe he chose not to 'understand', maybe he just trusted me to deal with everything, maybe he was no longer able to take it in ... who knows ... his symptoms caused him distress at times but not the diagnosis itself
it did take some time to get him to see his GP, he's never been one to 'bother the doctor' - so maybe it's all about picking the right time for your dad, and your mum, as I guess her distress is to be taken into account, it's tough for all of us to face up to the changes in our lives

I did want to have dad checked out, though, as self diagnosis can be deceptive - maybe there is another explanation for your dad's symptoms - or as stanleypj says, if the diagnosis is Alzheimer's, there are meds available which may delay its progress, they certainly helped dad

I do believe his GP needs to be kept up to date on your dad's situation so that s/he can respond to him fully aware of how he is - maybe just write to his GP describing your dad's symptoms so that the GP has a full picture

I'm glad your parents quality of life is good - maybe they would begin to put some things in place eg LPAs for peace of mind? I do wonder, though, whether you feel they may already require some support, as you mentioned in another post that you have thought of moving in with them.

Best wishes

 

[2jays]

A diagnosis opens doors for financial support like attendance allowance and reduced council tax and possibly "free" carers if assessed as non self funding, which once extra help is needed, everything is in place to just arrange for them to come in type thing.

The battle I would advise you to fight is getting lasting power of attorney (financial and health and welfare) in place. xxx

 

[BR_ANA]

A GP visit can rule out some reversibles dementias. I.e. Lack of some vitamins.

 

[nitram]

AIUI the GP has not been approached.
The first step of diagnosis should be blood tests, it is possible that dementia is not involved, the symptoms may be caused by a number of controllable conditions, B12 deficiency, thyroid problem, electrolyte imbalance,.....

 

[fizzie]

A diagnosis opens doors for financial support like attendance allowance and reduced council tax and possibly "free" carers if assessed as non self funding, which once extra help is needed, everything is in place to just arrange for them to come in type thing.

The battle I would advise you to fight is getting lasting power of attorney (financial and health and welfare) in place. xxx

We didn't have a formal diagnosis and my mother had attendance allowance, and council tax waiver and carers hours from a carers assessment - we did have a good GP but to put her through the process of a formal memory clinic diagnosis would have really upset her so I didn't.
I agree with the LPA - it is so important and for both health and financial

 

[Sue J]

I agree it is very tricky and also see little benefit in a diagnosis when it means crude assessments of abilities, or lack of them and is such a struggle to get any appropriate help and support.

Call me old school, but we have lost the Health Visitors for the elderly who were a good point of contact between patient and GP and were able to identify problems more quickly and help offered - that all elderly were considered for not just those showing signs of dementia thus diluting the stigma that remains with all things 'mentally' related, especially for the older generations. Whatever someone's diagnosis human needs remain the same, shelter, security, sustenance and human contact and compassion, additional things can then improve quality of life.

True friends and caring family are the most important in the decision making for people with dementia in my view as they have a view of the person that the professionals rarely get and, as you do SueLin, have their best interests at heart. Professionals can become compromised by the demands of 'officialdom'.

Unable to care and support my friend as I once did the 'official' pathway is the one we must go down to get any help but I do not think the 'dementia diagnosis pathway' is the right one for her either and can serve often to make matters worse and not better.

We're not very good in our society at respecting the wisdom of our elders, if your Mum thinks this is right for your Dad and given what she has witnessed with friends who can blame her?

I hope their quality of life remains good for as long as possible.

Best wishes
Sue

 

[Lawson58]

I think that it could be important to get a diagnosis in order to eliminate all the other possibilities that could be causing some of your dad's problems.

No two Alzheimer's patients behave the same way so I think it is unwise for you to assume anything based on stuff you have read. It may be that there is help for your father and you could well be missing something important.

Medication is available that may or may not help slow the process down if he has AD but it needs to be prescribed by a doctor.

 

[SueLin]

Thanks

Thanks to all fro your comments, very helpful.
LPA's all in the pipeline.....and I think in the 1st instance I am going to get my mum to at least go to see the GP by herself......I'll probably go too.

Both me and Sister are finishing work soon so we should be able to help a lot more and spending more time with them should give a clearer picture of what needs to be done.

Thanks once again

 

[Linbrusco]

Thanks to all fro your comments, very helpful.
LPA's all in the pipeline.....and I think in the 1st instance I am going to get my mum to at least go to see the GP by herself......I'll probably go too.

Both me and Sister are finishing work soon so we should be able to help a lot more and spending more time with them should give a clearer picture of what needs to be done.

Thanks once again

Different country here, but in my experience getting a diagnosis for Mum with Alz and Dad with cognitive impairment has opened the way to all the health services, disability support, and disability top ups on their pension.
Am pretty fortunate that both Mum & Dad are obliging, and what ever there GP says, goes.