Sunday, 28 June 2015

Finally meeting up with Kate Swaffer

Finally Meeting up with Kate Swaffer

Finally Meeting Kate

Last night my wife Janice and I finally met Kate Swaffer,  and her husband Peter, when they stayed over in Durham City for the evening.
Kate Being a founder member of the Dementia Alliance International, is working to get a louder voice for those in Dementia, and by setting up DAI

Here they give an independent voice, speaking solely for people with dementia, and therefore not tied to any Charity,  which can tell them what they can and cannot do.

This was a lovely evening and I was honoured, and very proud to meet them both on home ground so to speak, and it was an evening I will remember for some time.  

This was a little unnerving for me, because I had sat thinking about this all day, and had never met Kate before. She has such a high profile in Dementia circles these days, that  I did feel slightly out of my depth, as I am taking a back seat these days.

 But Kate is such a down to earth person, so much so, that I do not know what I was nervous about.

Her Husband Peter, who seems to stay in the background, was also amazing to get to know, as he seemed to have a lovely outlook on life and was very funny, even though they had just  flown up from Milan, then driven from London to meet us.

This would have been exhausting for anyone, but they were full of fun, and Kate was quite down to earth, but also very vocal and passionate about dementia.  

But this is  something that "Dementia" needs today, as its not in an ideal position in the World, let alone in the UK at present 

We spoke about the needs of people in England,  Wales, and Northern Ireland, as well as the well know Independent, Scottish Dementia Working Group, which is a model of what was needed in the rest of the UK. 

It brought back many memories of the Alzheimer's Society's Living with Dementia Working Group, which was based in London at the charities head office, until it was disbanded, because it appeared that it had too big a voice, for many in the Alzheimer's Society, at the time. 

The  Living with Dementia Working Group, had hoped to mirror what was happening in Scotland, with the Sottish Dementia Working Group, but this was never going to happen sadly.

I do think that its problem was that the Alzheimer's Society, wanted total control over it, where the Scottish group is independent of the Scottish Alzheimer's Society . 

These days we see and hear far too many people standing up, telling those with the illness what they should and should not be doing, but I do wonder just how many of these people really understand about the illness. 

There is an old saying which comes to mind, that you have seen one person with dementia, therefore you know it all, but just how wrong can this be.  

As an old member of one charity I was staggered, at the total lack of knowledge shown by its staff, so much so it appeared that it was a 9-5 job dealing with dementia, so why bother trying to understand the illness. 

So its up to people like Kate and groups like the DAI, to get a prominent and high profile place in society, away from Charities who may claim to represent the interests of those living with dementia. 

I personally feel that to get anywhere these days, we need groups like DAI, because they are dedicated to helping and supporting those with dementia.  We must also ensure that these groups get heard, where governments around the world are concerned

The only problem they face, is that they have to be self supporting, and therefore need to find their own money to support things like, the daily jobs, such as the website and administration, and then helping support people to go to conferences and workshops etc. 

But in the end, that helps them to remain independent and focused on their main role, to support and give a voice to those living with any form of dementia.

 I can honestly say that after listening to Kate last night, I was amazed at her dedication to her role, and her passion to see that people with dementia get a voice, and are not forced to listen to the views of others, who have little or no real experience of living with Dementia on a daily basis. 

I can only hope  that I get another chance to speak to Kate and Peter again before they go back to Australia, because they inspired me so much last night.    

       

Technolgy and dementia

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