Sunday, 16 February 2014

Dementia Charities

There has been a lot of discussion over the Internet about the role of Dementia charities, and who is best  to cover our problems. Some of this is starting to get very political and in some cases annoying



I guess before going any further I do think that there is a lot of politics involved in this subject, and if you are not careful you could be dragged into something you don't want.



I have worked with the Alzheimer's Society and the Lewy Body Society, where I am honoured to be an Ambassador.



The Alzheimer's Society in the UK like other charities claim to cover all forms of the illness, but its up to the person with the illness as to what they want and no one else can tell them what to do.



But I personally feel that if you want to get all of the information concerning "your own form" of the illness, you should then seek out a charity which covers, and which is totally dedicated to that form of the illness.


I say this because they are usually backed up by professionals in that one field, people who are doing research into that form of the illness and nothing else.



In the case of the Lewy Body Society the information is backed up and supported by professors in Lewy Body Dementia, people who are the leads in this research, so nothing can ever beat this.



These people are better positioned to give the correct advise and the whole picture  



when I look at literature about Lewy Body Dementia, each charity tells us different things, and not all are accurate, which is very sad, because, when I was diagnosed I looked everywhere for advice and was staggered at the different advice given out, much of which had not at that time been updated.



However the advice is only about certain types of illness, and not everyone is covered.


There is also a danger that if you enter a chat room on the wrong website, you may be given the wrong advice, by someone with a different form of dementia, or from a carer who has looked after a person with a different form of dementia



I remember early on being told to get a second opinion, by a carer who knew nothing about my form of the illness, something that was distressing and wrong.



But please remember that each country has different ideas and treatments.



The reason for this is that dementia is a vast and complicated illness. There may be around 10 types of dementia, but there are over 120 variations, so no matter what we do, we will never find information which covers all forms of the illness, simply because no two people have the same symptoms and problems.



Some forms of the illness also get combined which makes life even more complicated

This is why I started this blog in the first place, because I was told to write down my problems, so that it could be followed, and better understood.



Many people have contacted me over the last few years, saying that I have mentioned problems that they or someone close had struggled with, and yet they were never told about it by the professionals or charities.



The answer I guess is simple, everyone takes the shortest possible route, and cover only certain subjects.


One problem that many charities will not cover is the graphic nightmares we struggle with in certain forms of dementia, and the answer is that they don't wish to frighten anyone.



But if you are not told about it,  it can have the wrong effect on the person.



I had discussed my problems with my consultant in the first place, so I knew all about these graphic nightmares, but many people are not told about them, and simply think that they are going mad.



My advice would be to find a charity which covers your own form of the illness first, in your own country if possible, and get the advice you need and then if you want to look at other charities.

I am not being political, or telling people what they should or should not do, but simply telling people what I would do if I was diagnosed today.



Each charity has its own ideas and these are my own ideas from my experience only, and I still work with any dementia charity which asks me, because its very important that we raise the profile of dementia.



I must also point out that when I was diagnosed the Alzheimer's Society were very helpful to us, and got me going in a role of travelling around the UK talking about living well with dementia, and I will be eternally grateful, to them for everything they have done and will continue to support them while I can.



Many small local branches will ensure that all local  information is kept up to date. So never forget your local branches whoever they are run by



Sometimes smaller charities are better places if you want someone to help, with local information and support, and sometime's they are more friendly as they are more hands on, but its all down to the person and what they want from the charity.



Many years ago the Alzheimer's Society used to have local branches in most towns, now they have nearly all gone, and many are simply locality offices for the staff.



I found local office much better for support and help, but as we know life changes as do large charities

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