Women and Dementia – UK Dementia Congress

Yesterday saw me speaking with Philly Hare and Dawn Booker at the UK Dementia Conference.

The day started off perfectly with breakfast with Philly, Emily Abbott and Nada Savitch.
We had a lovely chat about how nervous we should be…….ha!

We were on during the first Plenary session so met in the main hall so we could test the lapel mikes as we thought these would work better for me and Philly as our bit was a double act.
We’d all dressed in red which was hilarious!

Me, Dawn, Philly
Me, Dawn, Philly

The hall soon filled and there were several hundred delegates.Dawn started by giving the global perspective of Women and Dementia and then it was down to me and Philly. We spoke of so many issues affecting women – I did point out at the beginning that we weren’t saying that men’s experience of dementia was any less important, what we were saying was that statistics categorically prove that more women than men are affected by dementia so services and support need to reflect this.

Me and Philly in deep concentration from Twitter!
Me and Philly in deep concentration from Twitter!

I spoke about my first experience with a health professional post diagnosis. My first contact was with an Occupational Therapist – I was in FT work at the time – She rang me to arrange a home visit – when I said I was in work, it threw her, I was the first person she’d come across in full time work. She’d called to offer me practical support – she wanted to assess what piece of equipment would help me – I didn’t need any equipment, what I wanted was someone to talk to about the emotions and guilt I was feeling – guilt about what the future held for my daughters. I needed emotional support in order to help me sort out my feelings before I spoke to my daughters. Emotional support wasn’t available and has never been offered as an option.
We spoke of how there’s an assumption that women will take on the caring role.There’s an enormous pressure on women to care – some want to care but don’t have the skills but other don’t want to care but feel obliged. This must put enormous pressure on relationships as such a sensitive time in their lives.

Philly talked about the brilliant projects that had taken place in York. One was an event at York University a year ago on Women and Dementia. This was the very first dementia event I attended. I remember thinking that there were very few people with dementia present but what I now realise is that compared to other similar sized events I’ve attended since there were actually quite a few of us – 6 or 7 in total I think.I naively thought at the time that there would be many people with dementia speaking out. Those of us with dementia initially met separately and again whilst I can’t remember the content I do remember much laughter, ‘a can do attitude’ and I came out of that meeting feeling very positive and upbeat and felt part of a very special group of people. However we then joined the main body of the event and the difference in attitude and atmosphere was most tangible – gone was the laughter and the ‘can do’ attitude. I remember feeling disappointed that the attitude of those without dementia was less positive and more depressing.

Much can be gained from women supporting women. Women feel safe talking in the company of other women. We can instil confidence in those less confident than ourselves. Due to the sheer numbers of women affected by dementia, it’s a travesty that services don’t reflect this. Philly ended by saying:

Don’t lets be gender blind – ‘we need to think of women as a marginalised majority.’

It's thanks to Philly that this experience came my way - so big thank you to her
It’s thanks to Philly that this experience came my way – so big thank you to her

The talk was received very well and we had lots of positive complimentary comments afterwards both in person and via Twitter.

The rest of the day seemed to be taken up talking to people, which was lovely but very exhausting………….it’s the turn of Philly, Natalie and me on today to talk about Dementia Friendly Communities………..and then, sadly I’ll have to shoot off home for last minute packing………..😱

Next week I must write a refelctions blog as this was my first Congress and the experience wasn’t quite as expected……

Happy 10th Birthday Congress
Happy 10th Birthday Congress

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

9 thoughts on “Women and Dementia – UK Dementia Congress

  1. I very much enjoy your blog, I am 58 and worked in the NHS until totally exhausted, and am now a support worker for a local charity in west wiltshire called Alzheimers Support. They’ve been going about 20 years and offer counselling to BOTH people with dementia and their main family member/friend/spouse who is supporting them in living at home. People don’t always want formal counselling of course but it’s there if they do.
    Have been to conferences as a Professional in my previous job and am loving being free of all that and just a person! I am sorry you had such a difficult experience….but not surprised. It is wonderful you are willing speak publicly Thankyou.
    Happy Moving.

    Like

  2. Well done.
    Day I was diagnosed & day after I was still same ME it’s how others see us particularly professionals professionals .
    Hope move goes well x

    Like

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