Over 840 000 people are living with dementia, affecting over 22 million people in the UK, either as a family member, neighbour or friend. One in three people over 65 will die with dementia and the average age of a patient in an acute hospital is 75.
The #DementiaDO campaign is about involving the whole community in making life better for people with dementia. That’s NHS staff, social care workers, ordinary members of the public especially if they’re not yet directly involved with someone affected by dementia.
Hi, my name is Andy Tysoe and I’m a dementia nurse specialist, based at the Countess of Chester Hospital. Part of my role is to help people affected by dementia through the challenge of an acute hospital stay and also to deliver dementia awareness sessions to the staff who work there.
I got involved in dementia care because I wanted to make a difference and stand up for people who can’t stand up for themselves. Over 840,000 people are living with dementia, affecting over 22 million people in the UK, either as a family member, neighbour or friend. One in three people over 65 will die with dementia and the average age of a patient in an acute hospital is 75. So it’s a no-brainer for me – all staff need to know about dementia.
But for me, dementia isn’t just an issue for hospitals, health or social care – it affects us all, whatever we do – as we all intend to grow old, we all have older people in our families and we all live in communities too. Also, when someone is given a diagnosis of dementia, someone else is given a diagnosis of ‘carer’. Who prepares that person for the journey ahead?
Who tells the daughter what to say when her 90yr old mother asks for her mother, or the wife of the husband who wakes up suddenly at 2 in the morning, asking to go home, when he’s in his own bed, in his own bedroom, in his own house? Who tells these people what’s the best thing to say? But the expectation is there, isn’t it? That the carer should know all this and cope.
Over the years, many guidelines, strategies, campaigns and visions have been produced highlighting what we should do and how to provide care and support for people with dementia and their carers, treating them with dignity, respect and compassion. But I still regularly meet people who come up against a healthcare system that seems to come up against them.
Don’t get me wrong, I also see every day, examples of great care, compassion and support but my heart sinks when we see media reports of the neglect and when it all goes wrong for people affected by dementia in our hospitals.
We also see more subtle forms of discrimination that lets us all down – like shouting across at someone with dementia to ‘sit down’ instead of going over and finding out why they just tried to stand up. Or getting frustrated because someone with dementia can’t keep up with the constant rush, rush, rush of a hospital ward.
Would it be ok to get frustrated at someone in a wheel chair if they couldn’t keep up? or with a blind person for not seeing what you are pointing at? We all know it’s wrong so why does it still happen? I think it’s about TIME – people with dementia need more of it and hospitals don’t seem to have any and time costs money. But there are low cost/no cost high impact changes that will make a real difference.
- Support informal carers and communities by opening up your training sessions to them and fill those empty seats
- Next time you paint, use dementia-friendly colours – every hospital has a redecoration programme – see this http://www.kingsfund.org.uk/projects/enhancing-healing-environment/ehe-design-dementia or tweet @TheKingsFund for more information
- Every policy and procedure needs reviewing at some point – next time it does, make it dementia-friendly.
- Use dementia volunteers on your wards – see what Kingston Hospital has done! http://www.kingstonhospital.nhs.uk/ or see Twitter @KHFTVolunteer
- Open up your visiting and invite carers to stay the night if they choose to – http://www.johnscampaign.org.uk/howyoucanhelp.html or see Twitter @JohnCampaign
I did it, I persuaded the Countess to share and open up our dementia sessions to other organisations, and invited members of the public and carers to come along too. Free NHS education for all! I now work closely with our local council, commissioners and Strategic Clinical Networks as for me, what’s the point of a dementia-friendly hospital if the community in which it sits, isn’t? The session has also been run outside the hospital in banks, museums, supermarkets, schools. And that’s why I got involved in Change Day, to share further and inspire others to do the same!
I want to see the same rights and consideration for people with cognitive or thinking disabilities as there are for those physical disabilities. I want to see ‘cognitive’ ramps alongside physical ones so that people with dementia can have equal access to services and buildings too. After all, isn’t that what the 2010 Equality act is all about?
So my call to action goes out to anyone who works in hospitals – it doesn’t matter what you do, you can all do something from becoming a dementia friend or talking to your manager about what you can do to make life better for people with dementia!
Also if you work for the NHS and are a @DementiaFriends champion, why not run a dementia friends session? Invite everyone to attend and help your hospital to become even more dementia friendly https://www.dementiafriends.org.uk
Take some inspiration from these initiatives
These dementia events and initiatives attracted media coverage from ITV news. We need more stories like these getting out there for the wider public to see.
Liverpool musician raises awareness of living with dementia
A musician from Liverpool who is living with dementia is using music to raise awareness about the disease. Paul Hitchmough joined forces with the Countess of Chester hospital choir at the “Listen, Learn and DO’ event as part of dementia awareness week. Just to get people with dementia to get their message across. To shout loud and clear about what we want as we are the experts. Event Organiser Andy Tysoe who’s a specialist dementia nurse at the Countess of Chester hospital said: We can’t expect people with dementia to change their behaviour, we need us to change our behaviour and our approach then we can help people live better with their dementia.
Out shopping? Check out dementia symptoms at supermarket
A dementia-friendly checkout has been opened at a supermarket in Chester. It features diagrams to help customers identify symptoms. It follows dementia workshops at the Countess of Chester Hospital to raise awareness of the condition. Gina Shaw was 61 when she noticed her memory was beginning to fail. Click here for the full story
Share your stories
Share your stories and innovations with everyone Twitter, using the #DementiaDo hashtag, so people learn from what you have done. Look at the list of no cost/low cost changes and implement them and look outside and see whats happening in your community too.
Get on Twitter and follow our social media dementia heroes out there campaigning for a better life for people affected by dementia! Lets work collectively to push down the walls around dementia and really have a dementia friendly NHS because if we get it right for people with dementia, we get it right for everyone. It’s not a choice anymore. Join our #DementiaDo groundswell for Fab Change day. Thank you and let’s do this – lets #DementiaDo this!