Making Space Bury Dementia service was set up in 2010 in an attempt to not only improve the lives of those living with dementia and their carers but also to reduce the stigma they encountered. We have developed 5 dementia cafes and a singing group in the last 6 years. The dementia cafes are informal, relaxed support groups which offer advice, peer support, information and fun for both the person with dementia and their carer
Making Space Bury Dementia service was set up in 2010 in an attempt to not only improve the lives of those living with dementia and their carers but also to reduce the stigma they encountered.
We have developed 5 dementia cafes and a singing group in the last 6 years. The dementia cafes are informal, relaxed support groups which offer advice, peer support, information and fun for both the person with dementia and their carer. Our cafes are run with the support of a number of partners who include Bury MBC Library service, Bury Art Museum, Greater Manchester Fire and Rescue service, Heaton Park Congregational Church, NHS, Persona Care, Seedfield Tennent’s and resident’s association.
Our singing group encourages involvement in the playing of musical instruments and singing. But, mostly promotes having fun. The singing group was originally set up with a small grant from the local authority. These funds allowed us to hire a room for three months to pilot the group. When these funds had been used up those attending the group were keen for it to continue. We approached a number of people looking for a room we could afford to continue the group at. We were offered the use of a Fire Station community room and the group has grown since moving to the fire station and we often get over 20 people attending.
Bury is made up of 6 townships and it has been our goal to have a group in each of the townships. At this time we are present in 5 of them and have just reached an agreement with a care home and a sheltered housing complex, in the other, to undertake activities on their premises.
When the service started we developed a dementia friendly logo by holding a design competition open to all school children in Bury. This was prior to the Alzheimer’s Society Government lead Dementia Friends movement. We encourage local businesses to display this logo, as well as the Dementia Friends “Working towards being Dementia Friendly” logo after they have completed dementia awareness sessions. These sessions have been completed with a variety of businesses and organisations. We have completed sessions with department stores, supermarkets, physiotherapists at the local hospital, social workers and have been involved with Greater Manchester Police in delivering awareness sessions to every officer in Bury.
From these we came to realise how difficult it can be for a store to help a person living with dementia that becomes separated from their carers or loved ones. We also became aware of the amount of time the police force, and other emergency services, could spend on trying to contact carers for someone who becomes separated and who is unable to give much information. We were aware of a lady who had gone into the town centre and had a fall in a shop breaking her hip. She was unable to tell the shop or the ambulance service who she was or where she lived. We became aware that not only had the shop and ambulance service spent time with the lady trying to find contact details for her family, but over 20 police officers had been searching for her after the family had reported her as a missing person.
In an attempt to rectify this situation, we have approached the Police and Crime commissioner for Greater Manchester’s fund for a grant to pilot a scheme of dementia buddy devices. These devices can be read by Near Field Communication (NFC) devices providing the person’s name and a contact phone number. Greater Manchester Police force is about to replace their walkie talkies and the new ones will have NFC readers. We had hoped to know the decision of the funding panel before submitting this application but are still awaiting the outcome.
We are working with a number of partners to encourage local ‘knit and natter’ groups to knit Dementia Twiddle muffs for people living with later stage dementia. These partners include a local shop who stock the twiddle muffs and the local hospital trust that encourage people to call at the shop to pick up a twiddle muff when they feel the stage on the dementia journey is appropriate. We have developed relationships with a knitting shop in the Town centre that hold copies of the pattern and also a stall on the local market which sells buttons, ribbons etc. who also stock the pattern. Our connections with the local knit and natter groups have led to us giving a number of awareness talks to the groups and associated organisations.
We design our service around providing dignity and respect for the members of our groups whilst treating everyone as an individual. Our groups could not run without an amazing team of volunteers who are highly valued by our members. An example of the feedback we receive from members about our volunteers is “the volunteers you have make the experience so enjoyable, they are compassionate when it’s needed but are also fun and a total breath of fresh air to us all, which lifts us on bad days and accentuates the good days. Please thank them all from Mum and I”.
Other comments from members include: - “It is a joyful place where people with dementia and their carers can relax in a happy caring environment for two hours with you, your wonderful staff and volunteers. On entering the café one is met by lovely warm smiles from you and your team followed immediately by either tea or coffee and biscuits. Nothing is too much trouble for you”. “When the Dementia Café opened in Tottington it was like a breath of fresh air. We could go together and feel perfectly safe, understood and supported. It was partly a social activity where we had lots of fun joining in activities”.
“Your staff have also been very supportive and I know I can phone them at any time for help and advice.”
One of our volunteers has recently been recognized as The Bury Volunteer of the Year for the work she undertakes in our service.
Making Space takes a positive approach to supporting and caring for people with dementia. The aim is simple – people with dementia must be able to do the things they’ve always done for as long as they can and the above services assist them to do this. We consider that the needs of carers are important and that peer support is important to them. To this end we organise one of the groups over lunchtime and the members all have lunch together in a local café. Carers have expressed to us how beneficial this is, as they receive support from other carers. We often hear a carer saying to another, “will you keep an eye on … while I go to the toilet/counter.” They know they are leaving their loved one in the care of someone who understands.
We work with many partners from the private sector, public sector and charitable organisations. These range from Bury Council, Adult Care Services older people’s teams, The NHS, Clinical Commissioning Group, Samaritan’s, Alzheimer’s Society, Greater Manchester Police, Shopping Centres, Care agencies, Libraries, housing associations, Care Homes, Day centres and groups for older people. A number of these partners value our input so highly they will often ask us to attend meetings to help them develop strategies around dementia. At present we are involved in a pilot scheme with a sheltered housing association to support the staff working at the scheme have a greater understanding of dementia and understand the importance of reminiscing; another housing association is encouraging their tenants to join us as volunteers as a way back into work for them. A third group is looking to us to provide awareness sessions for the older people who attend their social group.
We have recently completed a project for Bury Clinical Commissioning Group (CCG) around making GP practices more dementia friendly. We offered every GP practice a Dementia Friends session and also discussed with them how to improve the environment within the practices to make them more dementia friendly. A lot of the actions that the practices took following our meetings also improved the practices for other patients.
We work closely with the Jewish Community (The FED), the Asian community (The Jinnah day centre and ADAB) and with Bury F.C to assist them in setting up a sporting reminiscing group. We have undertaken dementia awareness sessions for the Elders at the local South Asian Community Centre also with the local Mental Health service users group and are in discussion with a local LGBT group about providing awareness talks.
The local theatre and Art Museum have just asked us to join them in helping to make the Arts in Bury more dementia friendly. As part of the joint working we will be providing awareness talks to staff at both venues as well as advising on how to make each venue more dementia friendly. The art museum holds a number of reminiscing boxes on behalf of the ‘House of Memories’ in Liverpool. We will be undertaking regular reminiscing sessions in the Art Museums café and looking for joint funding for the project. At present the theatre is closed for renovation work but they are hoping to re-open by the end of year. We are already discussing with the management of the theatre about putting on relaxed performances and ensuring that all staff are dementia friends.
We encourage our members to voice their opinions on what we do and regularly have chats about what is going well, what needs improving and what things we do not do, that people would like. At all of our meetings we have slips for people to complete anonymously with comments. We have set up a mailing group for carers and often will email out asking for opinions. Our members recently expressed the opinion that although the talks we have are very informative they can sometimes be boring for those living with dementia.
As an experiment we have organised a day where we have invited those who give talks for us on a regular basis (Fire brigade, Red Cross, Solicitors, Physiotherapists, benefits advisors) to come to a venue so that people can come and ask them questions. We have also organised activities on the day to keep everyone happy. As part of the work we undertook for the CCG recently we carried out a number of focus groups. Although these focussed on the GP practices many comments were also made about the work we do.
The development of the service has been a steep learning curve for all involved. We accept that things could have been done better. What we have learned from those experiences is what has made the services as good as they are now. If we had to pick one area that we would have done better; it is when we changed our funding approach from looking for grants to fundraising from our members. Although fundraising entails a lot less administration meaning we can spend more time in our prime target. We now realise that fund raising from our members limits our market, whereas applying for grant funding will allow us to develop the service.
The main challenge for the service remains funding. We have developed good relationships with local fund raising groups including Rotary, a small village charity, an allotment society and a farm shop. They have all supported us by raising funds. We have just entered into conversation with the local Freemason’s lodge with a view to support. We are also in discussion with the group behind a festival which takes place on the border of Bury and Manchester. The organisers of the festival are looking to make grants to local groups as a way of thanking people for putting up with the problems the festival causes.
One of the reasons we engage with so many partners is in the hope that we together can ensure services carry on. An example of this would be the dementia action alliance which has been formed in Bury. A Local Dementia Action Alliance is a collection of stakeholders brought together to improve the lives of people with dementia in their area. They usually include a range of organisations within a community and examples would include bus companies, taxi firms, police forces, fire and rescue services, high streets, local authorities, charities, care providers and health trust, faith groups, local associations or schools. There are currently 48 Alliance members in the Bury DAA who are working together to develop an action plan which will enrich the quality of life for those with dementia/carers in our communities. Those with dementia and their carers are also empowered to carry on the good work and practices as a blueprint to others.
We have not had a formal evaluation of the service, but regularly ask our members and partners for feedback on what we do. The feedback from our members mentioned above clearly shows that we are making a difference to the lives of the people of Bury.
We believe in sharing good practice and innovative ideas with others. To this end we are hoping to have a published article in a peer reviewed journal relating to the work we carried out with GP practices.
We also act as a hub to disseminate information on Dementia Friendly activities within the borough via our weekly ‘What’s On’ listing which is emailed to anyone who asks for a copy. We encourage all of the groups providing activities to let us know what they are doing and as part of every awareness session we undertake we encourage people to join our mailing list.
