dementia forum

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rodge34
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Joined: Fri Jul 13, 2012 2:09 pm
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by rodge34 on Wed Jul 18, 2012 9:47 pm

dementia forum

Why is it that NHS leaflets, talk about support at home from GPs or District Nurses, when no help is available? Five years ago, was the last time that my wife saw the specialist, she has vascular dementia and as there is no treatment or medication available, she was crossed off the list. Three months ago I asked our GP for Namenda, which is meant to be good for cognition and speech, without the nasty side effects of Aricept. She is not allowed to presribe this, so we have to wait as a new referal for four months, to see the specialist, the appointment is next month.
Over the years, I have tried to find things to help my wifes condition. There have been two things that have helped her immensly, I would like to pass this information on to help others. As there is nobody that knows my wife in the NHS, there is nobody to confirm this, and nobody to tell to pass on this news.
My point is - Why is there no support, once diagnosed with dementia? Why do we not get a visit once or twice in a year, to see how things are going? If I have found a couple of things that have helped, haven't others? Pooling of information must be useful.
From day one, GPs have been little or no support, the first one told me that memory loss was nothing to worry about. They have given me no practical advice. For this I now go on the American and also the Australian dementia websites, as problems arise, I go to see how others have dealt with it. I have learned alot from this. Had we had a support nurse, I might have received the same advice.
Rodge34

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cwilliams2010
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Joined: Fri Aug 27, 2010 11:20 am
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by cwilliams2010 on Thu Jul 19, 2012 11:02 am

Re: dementia forum

Hello - I completely agree that pooling our practical knowledge is something that everyone can benefit from. Infact it was the reason why talkhealth was founded over 10 years ago -simply because Deborah whose young daughter had eczema couldn't find all the information she needed in one place - and found the level of care and advice she was given totally inconsistant throughout the medical profession. I am not sure that it is necessarily the GP's 'fault' as such - based on the fact they can't know everything about everything, but if they had clear guide lines as to tell one where to find particular support that would be good for starters. My mother's GP was totally uninterested about her Vascular Dementia and said well that was that - goodbye in so many words.
Catriona - talkhealth team
Please visit my blog on dementia http://www.talkhealthpartnership.com/bl ... onas-blog/

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Nurse Ian Weatherhead
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by Nurse Ian Weatherhead on Thu Jul 19, 2012 11:27 am

Re: dementia forum

Hello Rodge,
Sadly your experience is something we here all too often here at Admiral Nursing DIRECT. Although services are improving nationally, it is very patchy, and quality of services available vary too.
We are seeing an increase in the number of Dementia Advisors around the UK, and also of new Memory Services following the 2009 National Dementia Strategy launch. These should provide ongoing contact throughout the journey for you and your wife.
We are also beginning to see GP practices keep registers of people with dementia in their practice, and the plan is also to identify carers too.
But it is slow, and doesn't help people in need right now such as yourself.
People with Alzheimers disease taking the anti dementia drugs should always be reviewed in a specialist clinic every 6 months, and I would hope this will happen for your wife if she is prescribed Namenda (or Memantine as it commonly called).
People with vascular dementia often slip through the net, because, as you rightly point out, some services say nothing can be done.
Obviously what they say is incorrect, though they are probably only looking at it from a medication perspective. Practical advice, education, information on the illness, and support for yourself as a carer are just as important on a day to day basis.
From the research you have obviously done you will have found a lot of information. Alzheimers Australia is a very good resource, and one we often recommend.
As an Admiral Nurse, our work is to provide support to the family, but sadly at the moment there are only around 100 of us in the UK, and Admiral Nurses are usually employed within NHS Trusts, so can only cover their trusts catchment area, for information on where Admiral Nurse teams cover take a look at Dementia UKs website http://www.dementiauk.org or ring Admiral Nursing DIRECT on 0845 257 9406. Another option for information and support are local Alzheimer's Society branches or associations. These can offer a variety of services and support locally, see http://www.alzheimers.org.uk
There is nothing worse than feeling isolated and alone to struggle on day to day, and services should provide at least some basic follow up just to review the situation, and I hope this improves soon.
Sharing knowledge is invaluable, as we all learn from each other, after all, we see the carer as the expert, usually living with the person, knowing behaviours, habits, what has worked, not worked, how to be creative and imaginative. Carer support groups are invaluable for sharing stories, and many areas now run them.
Ian Weatherhead
Lead Dementia Nurse
http://www.admiralnurseacademy.org/

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OT Lindsey Skelt
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by OT Lindsey Skelt on Thu Jul 19, 2012 1:18 pm

Re: dementia forum

I agree with Ian, services do vary across the country. In addition to Ians comments the contented dementia trust (www.contenteddementia.org) provides lots of advice and information for carers as well as giving an understanding of one method of approach that can help with maintaining communication. The mental health foundation (www.mentalhealth.org.uk) have a range of publications for example 'becoming a carer' some of which are free to download and give a lot of advice. Do look out for local carers groups to join for support and to share advice and experiences. You are right we all find different things that help us manage and the sharing of those tips is invaluable.
Lindsey Skelt
Occupational Therapist
http://www.shires-therapy.co.uk/

Dr Andrew McCaddon
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Joined: Tue Jul 17, 2012 3:59 pm
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by Dr Andrew McCaddon on Thu Jul 19, 2012 7:41 pm

Re: dementia forum

Hi Rodge,
I am really sorry to read about the difficulties you have had accessing support. I sincerely hope that the new initiatives in General Practice (particularly with regard to focusing on dementia as a vital and important part of the training of new General Practitioners) will help in the future. I was intrigued to read that you had found a couple of things that had helped your wife's dementia. I would be very interested indeed to hear what these were.
Dr Andrew McCaddon
General Practitioner

rodge34
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Joined: Fri Jul 13, 2012 2:09 pm
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by rodge34 on Thu Jul 19, 2012 10:06 pm

Re: dementia forum

Dear Dr McCaddon,
A couple of years ago, my wife usually sat or slept all day and hardly spoke. She had to be fed at mealtimes. She had to see a GP for something fairly minor and we saw a locum GP. She reviewed my wifes medication, properly, rather than the cursery glance, that is the usual review. The result was that 12 or 15 pills daily dropped to 2. Over the next six months, she lost 20lbs, on the same diet, her sentences increased from 3 words to 10 and she started feeding herself again.
After nine months, we started on coconut oil, 20 gr per day in her morning porridge, over the next three months she was lifted a few notches back up the scale. She now takes an interest in her surroundings, enjoys listening to conversation and jokes. Her wicked sense of humour keeps popping out. After 18 months on the coconut oil, we are giving it a break, as we think it may have been making her too hyperactive. We may restart this again soon. She thoroughly enjoys her food, feeding herself with only occasional help. Her weight has held at 10 stone, which is far better for her than the previous 11 stone 7 pounds.
The medication was for a bad back. In 1989, she had two discs removed and three vertibrae fused together. For 10 years this was fantastic, but the spine wore out above and below. The only answer was pain killers, we had many visits to the Macclesfield Pain Clinic, hence the massive amount of pills and patches. I stopped the patches, as I felt that they were not necessary, I did inform our GP and was encouraged to stop them, slowly. Having done that it was 3 months before the review by the locum. Her back pain has vanished, and now her only medication is 1 statin, 1 angina capsule and a 75mg asprin.
Life is not a bed of roses, on the American website they descibe the 7 stages of dementia, we are in 6 verging on 7. As we first aproached our GP in 2005, that is hardly surprising. We take great care to avoid aggression, incontinence is a problem, as are a multitude of other things. We have to learn to cope with each thing as it arises.
I wish that with the coconut oil, that it had been started earlier, before too much damage had occured. I reccomend it to anyone, it does not always work, but at least there are no side effects, unlike Aricept.
Rodge34

Dr Andrew McCaddon
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Joined: Tue Jul 17, 2012 3:59 pm
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by Dr Andrew McCaddon on Mon Jul 23, 2012 6:45 pm

Re: dementia forum

Hi again Rodge
Many thanks indeed for sharing that! Yes, I entirely agree that a good comprehensive review of current prescribed medication should be undertaken in anyone presenting with memory loss, and as part of the ongoing process of any dementia assessments. There are very many medications that can adversely influence cognition, and I have similarly seen some very striking responses to a complete overhaul of medication in several patients. Regarding the coconut oil, I had only heard of this recently during correspondence with another patient. Interestingly, there does seem to be some scientific rationale behind this, but I think it is still at the stage of undergoing formal trials. The closest related product that I am aware of is called Axona, which is a "medical food" currently undergoing assessment I believe. Perhaps the others can shed further light on this? Once again, many thanks indeed for sharing these observations!
Dr Andrew McCaddon
General Practitioner

rodge34
Posts: 4
Joined: Fri Jul 13, 2012 2:09 pm
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by rodge34 on Mon Jul 23, 2012 10:01 pm

Re: dementia forum

Dear Doctor,
As far as I know there are no trials in progress re coconut oil, there is no funding because it is a natural product and cheap. To get more info please Google, Dr Mary Newport. I was directed to her site by an Australian relative, there is a very interesting article about her husband's improvement on coconut oil. It explains much more than I can, I know that it helped my wife.
Your note sounds like the text books, talking about ongoing assesments, I do not know where you are based but here in Cheshire, there is no such thing. Today we had a meeting, as I had applied for Continuing Health Care for my wife. Social Services and an NHS nurse were present. They did tell me what I already knew - we are no longer on any list, because there is no treatment or medication available. We are not even a statistic, no longer listed as a dementia case. How do you think I feel when I read your words about "the ongoing assesment process"?
And you wonder why we try unproven treatments like cocnut oil.

Rodge34

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