Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission.

Dementia has been dominating my thoughts lately — as I know it does for so many people using adult social care services or working in the sector.

Usually this is our secret and not widely talked about. But I think that is slowly changing as the profile of dementia is becoming more prominent. The stigma attached to a diagnosis of dementia sadly still remains but the work of so many people to raise awareness has led to increased understanding. However we need to do much more as this recent blog from Pippa Kelly makes clear.

Cracks in the pathway

This was also shown by the CQC review we published last year exploring the experience of people living with dementia as they moved from care home to hospital and back to care home. The title of the report Cracks in the pathway gives you a good idea of our main findings: while we found more good care than bad, the experience of people moving between services was often poor with breakdowns in communication, information sharing and person-centred care.

Last Tuesday I spoke at The King’s Fund conference Leading change in dementia diagnosis and support to highlight the findings of the review. It was a good day and a browse through the presentations would be time well spent.

Personal experience

The most powerful contributions in the morning session came from three people who shared their personal experiences. Jean Tottie and Frank Arrojo both cared for loved ones with dementia. Frank shared the impact of dementia on him and his mother — loneliness, isolation, lack of help and understanding. He told the conference “unless you have lived with dementia you can’t understand its full impact.” Jean Tottie, Chair of Life Story Network highlighted that “family carers are the biggest workforce in dementia care and we need to support them.”

Graham Browne was forthright as he spoke about his experience of living with dementia — “you have no idea what we lose,” he told us. A salutary reminder to us all that we need to take time to understand the impact of dementia on people and their families and carers. I have shared Ming Ho’s blogs before, but her most recent one yet again lays bare the emotional impact of dementia on family members.

I was really sorry that I had to miss the afternoon session as I would have loved to have heard from the Sporting Memories Network guys, not least because they announced that day a partnership project with four Premier League clubs, including my beloved Sunderland. I also missed out on the final plenary session, which heard from some of the most vocal campaigners on dementia — Beth Britton, Dr Shibley Rahman, and Chris Roberts as well as Jean Tottie, Gary Rycroft and James Cross. I have consoled myself by reading Beth’s latest blog which I recommend too.

Another way to catch up on a thought-provoking day is to read the storify of the tweets from the day.

Celebrating good dementia care

The dementia theme continued at the Norfolk Care Awards, which I had the great pleasure of attending on Thursday evening. We don’t say thank you or celebrate success enough in social care and it was great to see the dedication and commitment from everyone to deliver great care.

The winners of the team award were from the dementia unit at Halsey House, a Royal British Legion home in Cromer, which I visited on Friday morning. Their passion for person-centred care was inspiring and the attention to detail in the unit was fantastic. Murals decorated the walls and incorporated tactile features like the soft skin of the cow in the picture. I thoroughly enjoyed myself and even got a marching lesson from one of the residents. Thank you to Sally Mills and her team.

Taking action

This week colleagues from CQC met with Professor Alastair Burns, National Clinical Lead for Dementia at NHS England, the Department of Health and providers to consider further the contribution we can all make to improving rates of diagnosis and support for people living with dementia, particularly in care homes. This is an important piece of work and a subject that I will return to I am sure.

Dementia in the spotlight

I will be ending this week in York on Friday night for A Night to Remember, a charity evening for the Alzheimer’s Society organised by Ian Donaghy who providers training and support for care staff. It promises to be a great evening so if you are in the vicinity, check out the Grand Opera House for the last few tickets!

Last week I highlighted the Oscar-award winning performance of Julianne Moore in Still Alice, which gets released on Friday. I’ve already booked my tickets at our local cinema in Crouch End for Saturday evening and am looking forward to that too.

And, last but not least, if you haven’t seen it already, I can highly recommend the BBC Children’s programme My Life: Mr Alzheimder’s and Me, a tender portrait of dementia and its effect on children. There’s only a few days left on BBC iPlayer so don’t delay!

Originally published at www.cqc.org.uk.

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