Diagnosis Help??

[mayfield]

Interested what help and information people received when they or love one were diagnosed with dementia/Alzhiemers. Did you receive any information on financial help, care in the home, day centers, approaches on care?

From our experience we received very little help on diagnosis and we would like to redress this for future carers so any thoughts on this welcome!

Many thanks

 

[Lynne]

In a word, NO

and I would be surprised if many here can say yes.

It seems to me that none of the various 'agencies' (for want of a better word) communicate with each other at all.
Therefore the consultant who confirms/delivers the diagnosis has no information about other aspects of dementia care outside his own professional sphere of interest.
The GP, however good or sympathetic, is not an expert on dementia generally, let alone all the variations within that category of illness.
The Social Worker ... don't let me get started on that one - suffice it to say that they don't communicate or interact with other 'bodies', even if they DO take any interest, personally or professionally.
The DWP (who administer carers' & attendance allowances) have to be dragged to the coalface, kicking & screaming, via an obstacle course of repeated form-filling.

There seems to me to be very little 'joined-up thinking' anywhere outside Talking Point, and here we only preach to the converted - no-one else reads/listens.

Sorry - rant over, back under the duvet!

 

[Margaret W]

Lynne is sadly right. You are given little information from doctors, a bit more from social workers, but largely it is down to you to determine what help is available.

The DWP are particularly poor in my experience. I note that they do not have a formal complaints procedure for obvious reasons.

Margaret

 

[Tender Face]

On reflection I realise how lucky I was ...... but this is the post-code lottery we all find ourselves in .... even before a more formal diagnosis - but having secured a consultation with a psycho-geriatrician - I was offered help through a partnership with my local PCT who were linked to the local Age Concern dementia project ..... help as in OTs, home care (not that mum would have had any of it), a buddy service, a carer's outreach service, (clearly didn't use that enough!) .... a daycare facility ...... in fact, makes me think should be a prototype ..

No it certainly didn't magic away all my problems (as well evidenced here) but I count myself as lucky in having so much drop into my lap at that stage when I know others bang on doors and get nowhere ..... nothing to do with my PCT or SSD ... just lucky I lived in an area where a charitable organisation had recognised gaps in dementia care and had the people, skills and funding to 'plug it' .....

Sad that a charity fulfilled what one might expect of social and health services?

Karen

 

[Bookworm]

My GP's have been so sweet = telling me 9 months before the Consultant that it is Alzheimer's or similar and starting to say how difficult it will be (in the area of deceit and manipulation)- I know they are "there" for me and concerned for me. The AD support worker was helpful but too busy to do much. that's it - no-one seems to care that a man who can still occasionally lecture on a complex subject to 2nd year University students does not know where the paper for the printer is kept in the house although it has been there for 10 years (he knew this last week.....).

Trying to find peace in the chaos that has become my life!! With TP as my help.........

 

[Royalslady]

Apart from my mother's GP telling us she had Dementia and referring her to the Memory Clinic - my mother has never seen a Consultant to confirm any diagnosis. It is clear she has some form of dementia, but we do not know what type. From my reading on the subject, I suspect it is Vascular Dementia.

Should we push for a formal diagnosis?

 

[Numberlock]

Should we push for a formal diagnosis?

We sound to be in a similar position, Royalslady. I'm also wondering if there is any benefit to getting a formal diagnosis for my mum.

I'll be interested to see what people think?

 

[Grannie G]

Should we push for a formal diagnosis?

Yes you should.

Are you getting Attendance Allowance and the disregard for council tax? If you are, without a formal diagnosis , fine. I just wanted to check.

 

[myheadisinaspin]

Apart from my mother's GP telling us she had Dementia and referring her to the Memory Clinic - my mother has never seen a Consultant to confirm any diagnosis. It is clear she has some form of dementia, but we do not know what type. From my reading on the subject, I suspect it is Vascular Dementia.

Should we push for a formal diagnosis?

hi my mum is in oxford area she was referred to memory clinic by gp at the john radcliffe, they are very good there and they do tell you a diagnosis by the end of an appointment.(something that shocked us as we were not expecting to get one so quick as others had said it takes a few moths etc)

 

[Royalslady]

Yes you should.

Are you getting Attendance Allowance and the disregard for council tax? If you are, without a formal diagnosis , fine. I just wanted to check.

Yes we have qualified for both. The GP has diagnosed it - as have Memory Clinic, but she has not had any clinical tests as such.

 

[Grannie G]

We took my mother to see a consultant neurologist, who diagnosed possible Alzheimers but definitely a loss of insight.

The consultant`s mother had had Alzheimers and he advised us just to accept his diagnosis. He said although tests would confirm it, they were distressing and didn`t feel there was anything to gain by putting my mother through the ordeal.

Admittedly there was no medication such as Aricept and Reminyl then, in 1995.

 

[Lynda Pope]

Diagnosis Help

Quite agree - we just got on with it for four years after SS did not return my call. Finally got in touch with SS again and now have a really nice CPN.

I now realise that you have to go out and fight for the help - I also realise that dementia is a condition the authorities prefer to ignore. Maybe the latest high profile sufferers will instigate a proper government response especially since we carers are saving the country a fortune!

By the way - what is a Memory Clinic?

 

[Numberlock]

Are you getting Attendance Allowance and the disregard for council tax?

Thanks for raising this, Grannie G. My mum doesn't live in her own home any more so doesn't pay council tax.

As for Attendance Allowance, I had never heard of this until yesterday when I rang the Pension Service to advise of her change of circumstances.

They are going to send me an information pack but in the meantime, if someone could explain what it is and who is eligible, that would be great.

Gosh, it's certainly a voyage of discovery isn't it - I'm learning new things every day!

Detective Numberlock xx

 

[tillygirl]

No, no help at all really.

The doctor from the memory clinic came to the house to assess my dad. Because he is prone to develop ulcers it was decided not to give him any Alzheimer's medication. I had to ask what the diagnosis was, it was not offered. He said if I needed any help to contact my GP or Social Services. There has been no follow up. Just left to get on with it.

I have had to ask for everything. I was refused Carer's Allowance because I have come from Australia to care for my dad and plan to go back at some point in time!! I did appeal and was granted it but that I believe is par for the course. They hope that people will accept the decision and not appeal. It saves them money. They have also been told not to offer any information just to give it if asked for (this was when I worked for DHSS years ago).


This is the link re attendace allowance

http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012425

 

[Clive]

Hi Mayfield

In general help was hard to get. Most of what you expected as a tax payer did not exist, or was so camouflaged, or I was so stressed, that I missed it.

The GP did nothing for 2 years until his practice nurse “diagnosed” mum with dementia whilst giving her an injection.

The mental health consultant was excellent as a person, and was working in a new purpose built health centre. We had a three month repeat appointment with her for three years. She was full of new ideas. (lunch club, CPN present at appointment, Alzheimer Society volunteer on hand to offer advice etc.) but each initiative was not followed through, or repeated for more than one or two visits. In practice mum just did a mini mental each visit, and I was told “not much change from last time”.

The brain scan and heart checks were done very very efficiently… but in two different hospitals.

The consultant told me that it was probably Alzheimer’s disease, and prescribed Aricept plus something for depression. The Aricept was stopped the moment mum’s mini mental recorded 12. (Not 10 as it is now).

The CPN stopped visiting mum because he had “too much paperwork” and “he couldn’t help mum” No visit during last year at home.

The Social Services Occupational Therapist could fit ramps and rails which mum did not need… but had nothing for dementia and could not help with gas safety or any electronic device to help me know mum was OK after she forgot how to answer the phone etc.

The Day Centre tried for a couple of weeks to get mum to go, but had no one trained to get a memory loss person ready to go out. The driver would knock on the door… said “are you ready”… mum would say “no, so I won’t go today”… and off the driver would go.

When mum became incontinent I asked the GP for help. He told me to see the (mental health) consultant. The consultant said see the GP… who said he had referred mum to the consultant so it was her job. The compromise was the consultant wrote to the GP who referred mum to a specialist clinic on the other side of town.

I had to chase up the Incontinence Nurse who eventually visited mum at home on a day when I was not in the house (which I had expressly told her not to). Having not heard anything about the visit I rang the Incontinence Nurse to ask when she was coming to see mum. She shouted down the phone that she had already visited mum who had become very aggressive and thrown her out… and she would never be coming again. So I had no NHS help.

Social Services were slow to come, and quick to say mum would have to pay for a Care visitor. The lady told me about Attendance Allowance… but did not mention Council Tax discount. Once the lady had assessed mum SS never came again in 4 years.

They did give me the name of a private Care Agency which was run by an ethnic/religious body who turned out to be excellent.

The Alzheimer Society introduced mum to an excellent Community Action over 60s club. This was organized by a full time professional, but run by volunteers. Unfortunately someone forgot to send in the club’s yearly application for a grant. So the club was closed down… even though 99% of the staff were volunteers !

My final brush with Social Services came when mum was taken to A & E after a fall. The doctor was not happy and thought SS should be aware, and called in the hospital’s resident SS team. They referred mum to SS in her own area. Local SS rang next day and took down all the same details I had given to the hospital SS lady. The following day another lady rang from SS and took down all the details again for her team. Though I rang SS several times (because I hoped for help finding a Residential Home) nobody had visited mum when I had to move her into an EMI home approximately 12 weeks later.


Then I started the application for NHS Continuing Health Care…. But that’s another story.

Sorry for going on… but it does help to let it out.

Clive

 

[Numberlock]

Ok, so now I am wondering what is NHS Continuing Health Care...

And also - in order to be eligible attendance allowance, would my mum have to have an 'official' diagnosis of Alzheimers?

 

[tillygirl]

Sites to check out


http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_079285

http://www.alzheimers.org.uk/site/s...oryID=200203&gclid=CL_c3dLH6JgCFQ4yQgodSBkV1A

http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_076288

 

[Clive]

You do not need an 'official' diagnosis of Alzheimer’s to apply for AA.

Your loved one just needs help. You must make out a worst possible case. Put everything down. The CPN signed mum’s and added that she walked home through the wood after picking up her pension… not aware of own safety. Remember you have to have required help for 6 months before it is paid so (if true) remember to put date loved one needed help more than 6 months ago.


.

NHS Continuing Health Care is when you have proved that you really are very ill and they agree to pay for your Care at home or in a Residential Home or Nursing Home.

There is no means test so you do not have your savings or pension taken.

 

[Numberlock]

Thanks Clive and tillygirl, that's really helpful.

 

[vivienz]

Pushing for a diagnosis

Royalslady and Numberlock - yes, yes, yes! My mum developed dementia, or certainly dementia like symptoms of memory loss and confusion in December last year. She went to see her GP about the memory loss (before things became too drastic) and was fobbed off, told it was her age and not to worry about it. She had a major episode a couple of weeks later, and I have been the bane of everyone's life since then struggling to get what I could done for her.
I was pretty sure it wasn't alzheimers, but thought there was a strong possibility of vascular, given that the GP (a different one in the same practice) didn't think it was a stroke, and she suffers from diabetes.
At the end of today's assessment, the consultant concluded that he's pretty sure she has had and is having a succession of mini strokes. On discussion, it seems that at some point last year, mum stopped taking her one a day low dosage of aspirin. Needless to say, I rectified this today. It may be that she doesn't recover the memory loss dependent on the damage that has been done, but at least we can try and limit further strokes and as her physical health improves, retain her independence.
My point here is that even with being a complete pain in the backside to all the parties involved and not giving them any peace until I got the result I wanted, it has still taken 3 and a half months to get to this stage. In that time, mum has had numerous other attacks, some of them more severe, but imagine how much worse it could have been without discovering such a simple thing as making her take her aspirin again. I'm sure there will still be complications along the way for us, but having anticipated the very worst, this has turned out to be quite a good result for us - one that we wouldn't have had without the diagnosis.
It's far too easy and too common to be fobbed off - as the wonderful Ronnie Barker said, "don't let the ******** grind you down!". At least I think it was him, but after today I wouldn't be surprised if my memory is letting me down!
Best wishes,
Vivien