Changing face of dementia

We’ve a long way to go but changes to perception are happening. More and more people are becoming Dementia Friends and more people are watching films such as Still Alice and more people like me are writing blogs to raise awareness – we have to continue to get through to as many people as possible. I met someone the other day whose mum has Alzheimer’s yet she’s never attended a dementia friends session and fails to understand why her mum behaves as she does………everyone should attend a dementia friends session to simply understand the basics

Managers need training and guidance too
In his fast paced life in work my manager didn’t have the time or insight to notice what was happening or how devalued he was making me feel. Or maybe he simply was too embarrassed to do something about it. Managers need guidance and training on how to deal with someone who is going through the process of retiring due to ill-health. Not everyone has that inbuilt knowledge or empathy – some have to be taught and given guidance. The alternative is to have specially trained managers who take on this role and deal with those in the organisation who are facing this very challenging time in their lives. To ‘avoid’ the conversation or simply to do nothing and hope it will go away should not be an option, yet invariably this is what happens.
Maybe I was unlucky. At least I was resourceful enough to look after myself – even so, that still didn’t take away that feeling of being devalued. Others may not be as resourceful as me. I dread to think how they would feel once the time to leave had come – that’s if they hadn’t gone off sick due to low self esteem and depression.
The NHS has still a lot to learn with regards to how to treat it’s employees, and that’s why I’m hoping to continue to work with NHS Employers long after I retire.

Hope is on the horizon
Last week we saw the 2 day conference in Geneva – ‘World Health Organisation Ministerial Conference on Dementia’ – leading the way for global action against dementia. There are 47 million people world-wide currently diagnosed with dementia. Speakers at the conference, including Kate Swaffer, advocated for money to be spent not only on finding the elusive cure, but for a more balanced amount to be spent on pre and post diagnosis care. There’s a need for more research into the best way to supply better services, treatment and care for those currently living with the disease.
Only last week I had 2 emails asking for my input.
One from the lovely Emily Abbott who is working so hard in York to change perception. She’s working towards tweaking an assessment tool used by occupational therapists and community nurse practitioners when visiting those with dementia.The aim of the questionnaire is to find out what people, particularly young people, would like to do.
The second email was from the Alzheimer’s society asking if I would speak at the forthcoming launch of a new document from the Alzheimer’s society on supporting staff in the workplace – more to follow next month !

So, as I say, ‘hope is on the horizon’

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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.

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