Hope for the future

I’m sitting here feeling properly positive today for the first time in weeks.

The biggest source of recent worry – my dad’s deteriorating health and search for suitable nursing care, seems at last to have turned a tide. He’s been in his care home for 10 days now and has settled in well enough that today I was able to visit. Whilst on one level it certainly wasn’t easy, it wasn’t as grim and upsetting as I feared it would be.

Nobody wants to see a loved one in a nursing home, but with a condition like dementia you eventually run out off all other options.

I attended a conference in Bristol yesterday organised by the dementia research charity BRACE. It was chaired by ex-BBC newsreader Martyn Lewis, who’s late wife had a form of dementia. He spoke about how he and his family rose to the challenge of looking after her, giving her two more years at home, but when it began to effect their own health, they sought full-time professional support.

“I like to think that we did the best that we could for as long as we could,” he told an attentive audience.

My mum was sitting alongside me. I thought of how she too did the best for dad for as long as she could, despite her own troubled health.

Chris Roberts, a businessman in his early-fifties, who has mixed dementia, spoke about “living well” with dementia. His story of how he’s tackled the diagnosis head-on by setting up and assisting with various help and support schemes was inspiring and full of courage.

Dr Liz Coulthard, one of the BRACE clinical research team leaders, shared encouraging news about work to slow down and halt progress of the disease, and her ultimate goal of finding a cure, without wanting to give false hope.

GP Dr Peter Bagshaw described dementia as “a uniquely cruel disease” and talked of a tsunami in diagnosis – 850,000 new cases a year, that’s one every three minutes.

But he said there had been a “genuine revolution” in dementia care, as he outlined some of the pioneering work being done in South Gloucestershire, now spreading to other areas.

Delays in, and difficulty of diagnosis, were both covered.

Hilary Doxford had concerns for six years before being diagnosed with Alzheimer’s disease in December 2012. Smart, articulate, and capable, she now volunteers as an ambassador for the Alzheimer’s Society and is involved in their research work. Like Chris Roberts, she is facing up to dementia, and living well with it.

There was optimism too in things as simple and straightforward as building design.

Tony Hall’s wife Barbara was diagnosed with Frontal Temporal Dementia in 2008, after 9 years of living with symptoms. He recalled a recent plane trip, where arrays of public toilets and complex airport security were confusing for Barbara.

As chair of the Bristol Dementia Action Alliance, Tony contacted Bristol Airport with his concerns, and announced to wide applause that Bristol Airport is to be the country’s first dementia friendly airport.

Completing the line-up of speakers was campaigner, writer and blogger Beth Britton, who’s late father had vascular dementia for 19 years.

Beth spoke about her concern that of the £30,000 spent per year on each person with dementia, just £90 of that goes into research.

Hands in the air on the finish line of the Dublin Marathon. Hands of Hope!

Hands in the air on the finish line of the Dublin Marathon. Hands of Hope!

On the hot political topic of the £55 GP diagnosis fee, she and Dr Peter Bagshaw were unequivocal in seeing it as a retrograde step.

“It will muddy the waters and is morally bankrupt,” they both agreed.

“You need to look at the quality of the diagnosis and post-diagnosis support,” said Beth. “Without that in place, you’re diagnosing people into a black hole.”

This informative, interesting conference was certainly no black hole.

It was shining a bright light in what can be a dark place.

It did indeed deliver what it promised, Hope for the Future.

 

 

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10 thoughts on “Hope for the future

  1. Rosemary Bishop

    What a lovely blog it’s The Calm after the Storm I could read it without my eyes misting up. Well done yet again.RB X

    Reply
  2. wendy7713

    Thank you for your kind comments about my blog Jo – such comments inspire me to keep going – This is also brilliant to read – it’s so good to know that all over the country there are people who care passionately about seeking out a cure and finding better ways of living well with dementia – keep on running!

    Reply
  3. gemmamitch

    Really interesting post, thanks for sharing. Fantastic news about Bristol Airport as well – since my mum wrote about her experience of travelling on the tube, Transport for London have been contacted by a top dementia researcher to ask what their dementia friendly policy was! I’m really glad I found your blog 🙂

    Reply
  4. Peter Bagshaw

    Thanks Jo for an excellent blog: very glad you found the event useful. I’m always inspired by the huge energy and enthusiasm around Dementia, and feel honoured to be able to try to make a difference.
    Thanks for your accurate and upbeat reporting, keep up the good work!

    Reply
    1. Jo Earlam Post author

      Thank you Peter. Always pleased – as a former journalist – to hear a report is accurate; and – as a freelancer with no demanding editor’s negative twist – to be able to write something upbeat.

      Reply
  5. Pingback: The Future After A Dementia Diagnosis

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