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Dismissed by Dementia Specialist So What Next? - Carers UK Forum

Dismissed by Dementia Specialist So What Next?

For issues specific to caring for someone with dementia.
Yes, I know there is no answer to this question but I am felling sorry for mum and myself so thought I would have a moan ....

I didn't expect mum's appointment with the dementia specialist to bring any good news as I am certainly aware that there is no cure and mum is getting worse but did he have to be so depressing?

Amongst other things, in a 20 minute appointment, he told me/mum the following:

1) he is surprised that she is not presenting more "challenging behaviour" and that would be expected
2) anorexia is a side-effect of dementia and she would most likely die of that - could be months, could be years.
3) No more support from Social Services would be available until such time as there is a crisis.
3) It would be better to have cancer as then there would be some hope Image

I am just glad that mum could not hear / understand all that he said, especially as she has had cancer twice ... This was apparently our final appointment with the specialist as there is nothing more he can do (part of me thinks just as well), but do you not think they could be a little more tactful especially in front of the patient??

So I am left with an upset mum, not understanding who family are, what house she is in etc etc and to pick up the pieces. Not happy!
That's awful (((((((((((((((((((())))))))))))))))))))))))
I cannot believe the tactlessness of that doc. He/she clearly needs lessons in decent bedside manner. But of course, it's you who is left to deal with the aftermath.
The more I hear about so-called Social Services and the NHS, the more I shudder. I think that's the point, to get us to distrust, even hate, these two. That way they can be privatized/dispensed with (same difference) much more easily.
I'm beginning to think that interviews such as you described are just the thin end of the wedge. Apparently, there's some paper kicking around telling the NHS to concentrate on younger people as they are "more economically viable."
Reminds me of some film I once saw about someone wanting to escape from some 'paradise.' They only gave up trying to re-capture him when it would've cost more than he was worth. Everything in this film's version of society revolved around something called 'credits.' Sound familiar?
I think we're being forced down that rout. I think that 60's/70's film was very prophetic in many ways. Wish I could remember what it's called.
Good grief Anne, I'm not really sure that this guy was a specialist in anything excepting upsetting people.
When my Mum was diagnosed with Vascular Dementia many years ago, we only got to see the staff at a memory clinic who gave the diagnosis and then we were just told to go away and get on with it. Yesterday a friend rang from Canada and her husband has just been diagnosed with Dementia, there is a full team available to them both, a class arranged each week to offer advice and help and a full list of telephone numbers so that she can ring the right person with the right questions. I wish it could be the same here.

Sending you and your Mum love xx
Oh Anne - that's terrible Image

OK, we know that dementia is never going to spontaneously get better, but did he have to be quite so blunt ? and I'm sure he must be wrong about no more support from SS, apart from anything else your Mum is classified as a 'vulnerable adult' so surely they still have a duty of care ?

Best advice I can give at the moment is to get onto the Alzheimer's Society and see what they have to say.
This link provides details of local Alzheimers groups. Click whichever area you are from and see if one close to you. I am assuming you are in England. If from the others let me know and I will provide correct link.

http://www.alzheimers.org.uk/site/scrip ... yID=200138

Also, go back to your GP> You cannot and must not be left with no support. Fair enough sometimes you only see consultants on review or if problems but you need remain within the services.

Check with your GP to see if your area has a local memory protection services. Ours have been a Godsend to us.

x x
And sending you an enormous hug too since reading this!
Jx
Anne, this is almost unbelievable, and differs from the experience I am having with my husband's consultant. My husband was formally diagnosed in 2011, but we have regular repeat appointments (at least every 6 months, but we have asked for, and been given, extra ones at certain points) at the memory clinic to monitor his (steadily deteriorating) condition. We have one coming up tomorrow, when we will meet a new doctor, as his previous consultant has moved to another post. His daughter and I are given every opportunity to discuss his condition, and tomorrow we are going to ask about the possibility of using Rivastigmine patches, rather than pills, a change that has been suggested by the GP who looks after the residents at the home where he now lives. We hope this might help to diminish the low point he has in the mornings, when there has been a long gap since the tablet he took after supper the previous night.

The fact that somebody has an incurable disease should never mean that they and their family are just left to get on with it. We all die eventually, but that is no excuse for the medical establishment to wash its hands of a patient. Apart from anything else, the effect on the carer may become a medical situation in itself, which might have been avoided by a more tactful and helpful approach. And also apart from the human aspect of all this, dementias are being actively researched academically, so any and every case may be of value in improving medical knowledge and understanding, but for that, it has to be observed and recorded over its entire progress. This is the only means whereby we can look for better understanding and better treatments for these vile conditions.

I have found Social Services generally fairly useless, but the actual doctors who have been involved in my husband's case have been positive and supportive. I wish I knew what to suggest, but I have to say that the dismissive attitude of this specialist strikes me as both irresponsible and unprofessional.

Tristesa
Just an added point: I wonder whether this doctor is someone who values honesty and doesn't want to hold out false hopes, in case patients/carers are left expecting things to get better when they won't, and simply lacks the basic communication skills to convey that tactfully and kindly? It is possible to be truthful without being so harsh and depressing; I doubt whether anyone here is ignorant or optimistic enough to think that a dementia patient will actually recover, but knowing that there will be no improvement does not exclude the possibilities of making the best of things while the disease takes its course.

I almost wonder whether you have grounds for some kind of formal complaint, but in the meantime, discussing it with the GP (and perhaps asking for a referral to another consultant?) may be the best way forward.

Tristesa
I've met lovely and awful doctors. My replacement GP when the old one died said he was going to be brutally honest with me, concerning my weight issue. When I was brutally honest back, at the same consultation, he tried to get me to move to another surgery, not realising that I'd been a patient there for over 40 years!!! Once you've got over the shock and hurt of this appointment, I would complain to the hospital Chief Executive. Only when they know what their consultants are saying can they do anything about it.
Anne001,

He certainly doesn't believe in sugar coating the pill, does he?!? Image I can understand why he'd not want to give you false hope, but he could have showed a little kindness. The worst thing was that he seems to have said all this within earshot of your mother, and although she may not have been able to hear/understand everything, I think that was very thoughtless and ill mannered of him, to behave as though she wasn't even there.

My theory is that this man has met so many dementia patients and witnessed so many sad cases that maybe he's developed a bit of compassion fatigue, or has just mentally distanced himself, by way of self preservation. Perhaps he feels frustrated that he can offer no effective treatment? (I understand that tablets can sometimes slow the progression of the disease, but only for a year or so). I say all this not to make excuses for his horribly blunt manner, but as an attempt to understand why he behaved in such a cold way.

You could put a complaint in, but will it actually change things or make you feel better? Or you could request another appointment with him, then turn up on your own and explain how unhelpful and upsetting you found his attitude - he may have become so jaded that he does't realise how he's coming across to people.

On the practical front, at this stage I think you'll probably find better support from other carers, both here and in the real world, than from the medical profession. It's a case of making your mother's life the best it can be, under the circumstances, and helping her to find some contentment, in any way that you can. Some problems call for creative, unconventional solutions involving "out-of-the-box" thinking, which is where this forum comes in handy, for bouncing ideas around.

The medics have a role to play in the final stages, but for now you'll probably be a lot more useful to your mother than they will.