Alison Rogan

Alison Rogan, our External Affairs Director, writes about the UK Dementia Congress.

My eventful train journey to Brighton started off with a group of noisy young ladies from Eastern Europe drinking Lambrini and listening to loud music and the return journey was equally interesting with a large group of chattering Chinese students nearby.

Despite the noise, I reflected on the thousands of people affected by dementia and what I have learnt over the last two days in Brighton at the 9th UK Dementia Congress and National Dementia Care Awards

I chatted to a lovely man with early onset dementia who told me a little about his life. When he was two years old, his three brothers and sister were taken into care, but unfortunately were split up in different place. It took him 59 years to find his siblings and when he eventually got to meet them, it was like they have never been apart. What a wonderful bond to have. He had worked in the hospital as a nurse and the day he was diagnosed, at 59 I think, he was asked to leave. What a double whammy. Yet here he was, telling his story at the biggest event for dementia in the UK, with confidence, pride and total honesty.

I learnt that for someone with Lewy Bodies syndrome, you can also have the symptoms of Parkinson’s disease. That it’s impossible to go out on your own as your sensory awareness is practically nil with the dangerous possibility of walking out onto a busy road. That during the night you may suffer from horrendous night terrors, maybe getting no sleep at all. Yet here was a man who had just won an amazing award “for exceptional contribution from a person living with dementia” who with his partner, was the original Purple Angel.

It was interesting to listen to Dr Stephen Judd from HammondCare in Australia who asked us all ‘why isn’t excellent dementia care the norm?’. Identifying the four main drivers preventing change is the key – finance, fear, fame and passion. For example, the manager of the care home may be fearful of not complying to a strict regulatory environment. Or he/she may be obsessed with marketing how brilliant their home is at the expense of what is really happening inside. Whist it may sound obvious, to make change happen you really have to understand the motivation of the decision makers and do you best to put yourself into their shoes.

Brian Longman from Croydon gave a presentation on his work with telehealth in care homes. He explained that a lot of care teams can spot when things aren’t quite right with a resident’s health or wellbeing, and then blame themselves by expressing ‘I should of seen that coming’ when they are told that a resident has gone into hospital as an emergency admission over the weekend.  20 patients with dementia and other co-morbidities are using bespoke telehealth solutions in one particular care home. The findings are really interesting, particularly the impact on the care staff.  The social interaction is really improved and the positive impact on admissions is starting to come through. Learn more here.

Finally, we held a workshop on the dementia-friendly technology charter. The Programme Officer for Dementia Friendly Communities at Alzheimer’s Society, a geriatrician and myself took the audience through the key learning from the Charter. I’m always interested in the questions and I wasn’t disappointed.

The questions spanned three areas

  • Finance – isn’t cost for many prohibitive?
  • Workforce – how do you get over workforce and cultural barriers?
  • Preferred providers – how do you choose a provider?

Finance could be problematic because often the resulting outcomes are of benefit to other fund holders such as a reduction in hospital emergency admissions or GP callouts. That’s why a whole system approach works well, such as the Calderdale ‘Quest for Quality in care homes initiative’ which involves the CCG, Foundation Trust and the Council. However, if this isn’t possible, there a some very low cost solutions out there that can make a big difference.

Workforce and winning hearts and minds needs to be identified early on in the process and sufficiently resourced. There is no point going in once and expecting it all to fall into place. With staff turnover in care homes being one of the worst in the sector and a possible reluctance that technology may be there to replace people, there is a great need to involve staff from the beginning, ask for their opinions and ideas and make sure they are involved every step of the way.

One person asked if there was a list of preferred providers for dementia-friendly technology. The truth is there isn’t. There is a balance to be made between ensuring that standards, safety, governance and processes are documented and met; and ensuring that innovation is not stifled. It does take a leap of faith to do something different and sometimes you just have to fail a little to succeed. But there is plenty of best practice in the charter.

After a very busy couple of days in Brighton, it was really heart-warming to see a piano at the entrance to the station with a simple sign ‘play me’. I found my grade four piano exam certificate the other day and realised that it was from 36 years ago and sadly I’ve not really played a piano since, but it was really nice to sit in the station for 10 minutes and hear a piano playing in the distance. I’ve learnt a lot about dementia and perhaps the old adage ‘music is the cure to all ills’ has a little bit of truth in it.