Dementia Action Week 2018 – A new International Association

Yesterday, on Day 2 of Dementia Action Week 2018, at the World Health Organisation Conference in Geneva, Kate Swaffer of Dementia Alliance International proudly announced a new International Association called

The Global Rehabilitation Alliance

This is to be a global association of 14 organisations to promote rehabilitation, hopefully,  from the point of diagnosis.

For too long, we receive a diagnosis of Dementia, are told to put our affairs in order and then there is nothing. In my experience and that of many others, as I walked out of the consultants room and it felt like I had stepped off a cliff into a dark hole.

For those readers who do not have a diagnosis, you feel that life as you know it has come to an end. Unlike some other Chronic Diseases, where you get a specialist nurse, OccupationalTherapist, Dietician, Speech and Language Therapist etc, with Dementia you are left on your own.

For me, that meant a year lost to Dementia. I had great support at work but because I wasn’t getting any other support and there is no signposting of services. There is the internet but during that time I couldn’t focus on endless searching. What I and we all need is that face to face contact with someone to guide us through our initial journey with our Dementia.

There is no one size fits all solution to a diagnosis of Dementia. There are over 100 types of Dementia, which have their own variants which is where rehabilitation comes in. The different specialities and others I mentioned earlier bring that face to face contact and have the skills to enable us to live well with Dementia.

In my own experience, it was taking part in Taking part in a Genetics of Alzheimer’s study and attending the 6 week  A Good Life with Dementia course in York which began my rehabilitation into living well with my Dementia. I should’t have had to undertake a 130 mile round trip to access the course as it should be available worldwide in every community affected by Dementia, that being said, I still do not have access to other services.

There are those in Government and Health Bodies who could make a huge difference through adequate funding, awareness and services and there are the medical professionals who mock us through journals and social media because we do not have wrinkly hands, (MRIs, Pet Scans and SPECT scans do not lie) and who will not see the benefits of rehabilitation.

Because of the system here in the UK, I had to stop working, I do not receive any benefits or pension. My PIP assessment was done by a young woman who didn’t have sufficient knowledge of Dementia and was obviously not a Neurologist. Because I didn’t look like I had Dementia, the PIP assessment bore no relation to what we discussed or the problems I was having with day to day living and I am not alone with this experience.

As with the Tories blatant disregard for disability, in the UK the news is full of Labour attacking the Tories for Austerity and the lack of funding of the NHS, it was Tony Blair’s Labour Government that turned a 40+ billion budget surplus into a 1.6 trillion deficit and mismanaged the banks and the Windrush scandal caused by the Labour Government of 1948 not issuing passports when these wonderful people arrived.

Before you shout in horror reader, I do not vote Tory, nor do I vote Labour or Lib Dem, I was just trying to balance my comments over the last two paragraphs.

To add further balance Katy Styles has been running a petition:

https://petition.parliament.uk/petitions/209717

asking for a Carers strategy UK wide, apart from her local MP, neither side of the House of Commons is actively supporting this and it doesn’t appear to be news worthy hence the low number of people who have signed it, bearing in mind there are millions of carers and cared for who will not have heard of her petition.

The point I am trying to make is

People living with young onset Dementia do not make good news stories,

there are no wrinkly hands. 

Those that have the authority to make rehabilitation from diagnosis happen need to stop paying lip service to our needs, stop playing political football with our lives and understand that

we have Human Rights to equal access to Post-Diagnosis Rehabilitation

 

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