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Why are there only men at this meeting?

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Manuela SkyesA few years ago, I met an extraordinary women. I still don't know how she came to know about Innovations in Dementia, but it was Manuela who contacted us.

She has Alzheimer's disease and wanted the world to know more about what it about dementia. She was a perfect person to help us with our work. We spent many hours talking. And Manuela would often come back to the same key issues:

'Why is dementia such a neglected area of medicine and social care?'

'Why do we not hear from people with dementia themselves?'

Manuela had a simple answer – 'Because, it's a disease that affects woman – and older women at that!'

She also had another theory – 'More women get dementia because they use their brains more!' When I first had this conversation I use to try to 'correct' Manuela. It wasn't that women were more prone to getting dementia, it's that women live longer. It won't be the last time that someone with dementia has taught me something. I looked it up. More women do get dementia – full stop. [Whether she's right about the brain work is something I hope will get researched in the future!]

Innovations in Dementia was just starting up. We were developing the idea of our ThinkTank – a group of people with dementia who we would work with flexibly and who would advise us about our projects.

We invited Manuela to a number of meetings and she spoke at some events and conferences about her experiences. She never failed to point out that more often than not the meetings were packed with men. 'Where are all the women?'

Time passed and we got involved with the Dementia Engagement and Empowerment Project (DEEP). We began to notice that many of the people with dementia who are active within DEEP are men. And we began to wonder why. Where are all the women?

Manuela is passionate about a lot of things – Christianity, politics, not eating meat. I haven't been able to live up to all her expectations of me, but one thing I did promise her to do was to keep raising the issue of women and dementia.

Nada Savitch

Tags: rights, women with dementia Written 2014-06-02

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