Third and final blog about the Hull Conference

Apologies yesterday – many of you had problems accessing Part 2 of the blog. I set them to be released on the same date and when I realised I must have done something it didn’t like. If you’re still interested you can access through todays blog by clicking on the link to the right or by going to the ‘blogs’ tab on my home page………I think!

Cathryn Hart and Professor Esme Moniz-Cook – the 2 people who asked me to speak at the conference – it was now their turn to present their findings regarding Famcare – dementia in people’s homes.

Esme in the middle and Cathryn standing
Esme in the middle and Cathryn standing

The study had to have people with dementia who had a supporter at home. Of over 5000 identified in the region as potential participants 5.7% were living at home alone so weren’t eligible. 8.4% were at home with a carer. So the obvious question was, that if 40% of the 5000 were in care homes (as Professor Graham Stokes mentioned yesterday), 5.7 were living alone and 8.4% were at home with a carer, where were the remaining 45.9%?

Because of this they couldn’t get enough in the sample needed. They had 157 couples in total.
The baseline was that people had 11 challenging behavioural issues (e.g. wandering, repetition) apparently theres’s 24 recognised behaviours. They found that people who had more contact with professionals in the first 2 months did better than those who had contact in the last 4 months. This shows the importance of early support.
Cost – cost of health and social care was relatively low for families – significant input however came from family support – 112 hours of their week rising to 129 after 6 months – it was 23 hrs for those who didn’t live with the person with dementia. Some family carers didn’t see themselves as warranting support but we can help with many of them. Many people look for support in a crisis instead of at the beginning when initial support would be beneficial, which is sad.
We’re left with the question – How can evidence based intervention be delivered to family carers in a timely manner?
We need to be offering support to offer understanding and care for families continually following diagnosis. As with anything, if people understand ‘why’ something is happening, they can often cope with the situation better……

Jaqui Whurr then gave the carers perspective. She cared for her mum who had vascular dementia and she died 2 years ago. She apologised if we found her words negative.
Jaqui told the harrowing story of her experience of care homes and hospital. Her experience was so shocking that I don’t want to document it as I don’t want to remember the story.One thing I will document is when Jacqui said:
“In hospital I naively thought they’d understand – once they found out mum had dementia they asked me to stay with her to look after her. Esme helped me to understand the challenges mum was facing.”

What is so continually shocking is the lack of awareness in many health care professionals who really should know better. Lack of training and understanding is surely unacceptable…….

After a nice lunch it was the turn of Professor Jill Manthorpe from the Social care workforce research unit Kings College London. She spoke of how the NHS and local authority were facing relentless cuts. There was less money for training. Despite the Prime ministers 2020 challenge there were new priorities. She mentioned the ‘We have to’priorities – to keep people out of hospital – to concentrate on reablement – to reconfigure rapid response  – to get through people through the service………..dementia doesn’t appear in the list of ‘we have to’ priorities……….
Carers often rule themselves out of services. “My little problems aren’t bad enough”resulting in self excluding. Carers don’t see themselves as deserving earlier enough but end up with a need in a crisis.

As some people know, my concentration levels disappear in the afternoon and I only have random notes for the rest of the afternoon.
I can decipher the fact that Bev Milson – care home manager of The Anchorage in Grimsby – and who spoke in the afternoon, seems like an example of a good care home
‘Caring for residents is not rocket science – it’s caring how me or you would want to be cared for’ – she invited all of us to visit but not all at once!
Sadly my notes then disappear and become illegible so apologies for not having anything on the last speakers.
What I did have is that Alan Johnson MP came to close the conference. – “I’m the official secretary of the Esme fan club”, he said and “ she taught me more about dementia than anyone else”. Being a labour MP he doesn’t agree with much that the prime minister says but he does agree with the prime minister re the 2020 challenge.
He spoke of the tiny amount of money going into dementia research and a realisation that it can hit young people is a growing problem – the cost to society will be huge. We can hold our heads up high in Hull and Esme has done great work.

I can’t fault the dedication of the professionals present. Esme appears to be an angel brought down to help carers at a time when most needed. The concentration of the day was around carers and maybe this was due to the research being disseminated. Hopefully they also work directly with young people with dementia and for those living alone. I did enjoy the day but what struck me was the difference in the feel of the conference. All the people I met focused their chats on the carer………….

I’ve noticed, since moving, that young people with dementia are not in evidence in groups in this area. I remember being told that no person with dementia is a part of the involvement groups in the area I live until I arrived – I can’t believe I’m the only person in East Yorkshire with Young onset dementia…………need to find a way of finding some playmates………


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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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