Since August last year, Bury Shared Lives have been part of a Greater Manchester wide project called Live More. It aims to keep people living with dementia connected to the things they love, while giving their families and carers a break. The project is helping us develop and evaluate day support and is shaping the future of flexible, person-centred dementia care in Bury.
We asked Mo Arthur, Shared Lives Registered Manager:
What impact has the project had on people we support in Bury?
“The biggest difference it's made is for family members. Families are desperate for help and the council is stretched for assessments and funding to support people and their families.
People we support who are living with dementia are in denial or they don't understand or feel they need support. There's so much for families to deal with, having the same conversations over and over and seeing confusing or upsetting changes in their loved one. For example, the person might want to watch different things on tv because their attention span has changed and they're no longer interested in what they used to enjoy. Families can find all of this difficult to understand and we know how valuable a third person coming in can be. Just having someone new around, with fresh eyes and different questions or responses can create big changes; they can have a big impact on the people we support. It can be difficult to introduce someone new though; people we support said things like "I don't need support" and "I don't want a stranger in my house", so we built on our existing matching process with low key, informal introductions and we named our dementia project carers 'companions', to minimise upset during the transition to people getting regular, professional support through the project. For example, David is Jewish orthodox and needed support but we were concerned that his match wouldn't work because his companion, Daniel, was Jewish but not orthodox. We got advice from the Carer's Hub and the change in David was obvious from their first meeting! David appreciates having another man to talk to and they have enough in common to be helpful. It's been a challenging project for our team on a personal level; once people we support deteriorate, they decline fast and that is understandably very upsetting. We do know how much of a positive impact we have been able to make on many people's lives in Bury though, and we're grateful to have had that opportunity."
Has the project made a difference in people's lives?
We asked Sulyn Waddon, our Shared Lives Dementia Support Worker, who says:
"if only people knew how simple it is to make a huge difference; just to spend 2 hours talking - that's all it is. This project has been a vital link with Bury Council's work, as the gap between what's needed and what's available is huge."
It's been great to get feedback from people involved in the project too; Sulyn got a lovely email from Jane, whose dad Neil has been supported by the team and by his companion Mike:
Dear Sulyn,
I just wanted to say a massive thank you for your amazing support and help. You have a big heart and I honestly don’t know how I would have managed to look after them both without your help, advice, compassion and kindness.
A massive thank you for sending Mike to look after and spend time every Thursday for 2 hours with Dad. His visits have been invaluable for Dad’s quality of life especially as he won’t leave the house and it’s the only time he socialises outside of the family!
Mike is always patient, kind, understanding and always does his best to engage Dad in conversation; he has even found out things from Dad's past that none of us even knew about. He has Dad smiling and laughing which is not an easy thing at times; he is an absolute star whom we hold in very high regard and has become a friend of our family. Through talking to Dad, looking at photos and delving into Dad’s past life, Mike has brought back so many happy memories which means that Mum and Dad now have something they can talk about again. Dad started reminiscing about his navy days and how he speaks French, he also shared that he doesn't like rice pudding! We were astounded by what's been coming out thanks to Mike.
We were worried about Mum's mental wellbeing as she felt trapped in the house and this was hampering her recovery from her own health problems. Mike spending time with Dad has given her some time to recover but has also meant she can go out of the house and lead a more independent life by doing some shopping with help from me, having a meal or going to appointments while being happy that Dad is being well cared for by someone we all trust and that Dad has a good rapport with.
I don’t know what we would have done without you and Mike. I feel as a family we were in crisis with no help from anyone else and we were desperate to improve both Dad's and Mum's lives. You have also helped me enormously in desperate times, with advice about needs assessment, with contacting adult social care and by contacting others who could help us, like the Carers Hub and the Staying Well Team. Your team have supported us more than anyone else in the Bury borough at a time when we felt let down. You have been there when I really needed someone to talk to because my own stress levels have been very high at times and I have needed support.
You and Mike are amazing, selfless people who make a big difference to people's lives and from the bottom of my heart I can’t thank you enough; I'm so grateful to the Shared Lives dementia project. I am incredibly worried about both my parents' future wellbeing without you both involved in Dad's care and support.
Dad's health has deteriorated considerably recently and Mum's health isn't great either; she has a lot of hospital appointments coming up. I honestly don’t know how we will manage as a family without the help of the Shared Lives dementia project.
We are forever grateful to you Sulyn, Mo and Mike for everything you do for me and my family. Your work is so important and essential to families and to my dad.
Thank you so much!
Jane
We are working with with Shared Lives Plus and ARF (Accelerating Reform Fund) on this project, which you can read more about here.
Want to know more about Bury Shared Lives? Click here.
Read more case studies from across Persona - just click here.
Get dementia support in Bury here.
