MUSSELBURGH MEETING CENTRE WORKSHOP: FEBRUARY 19th 2020
Musselburgh Health and Well Being Group, part of the Musselburgh Area Partnership, has started a community conversation about dementia and is exploring the possibility of setting up East Lothian’s first Meeting Centre. To start things off, we invited local people and groups to come together to talk about how we can improve the lives of people in our community affected by dementia. 37 people came along to the Brunton Theatre from a wide range of community groups and local and national organisations. Another 20 people said they were interested but unable to come along.
This set the scene for a lively workshop where we worked together to look at dementia in our community and how we can make a difference. The afternoon was full of energy, enthusiasm and a real commitment to working together to change lives.
DEMENTIA FACTS & FIGURES
Trish Carlyle, General Manager from the East Lothian Health & Social Care Partnership opened the session with a discussion about dementia in East Lothian and why a supportive community can make a huge difference.
- In 2017, 1,932 people had a diagnosis in East Lothian, 1,284 women, 684 men – the rate is higher than the rest of Scotland
- It is the most common cause of death in women in East Lothian (16.3%) & the second most common for men (9.7%).
- In 2019, 862 people had a recorded diagnosis of dementia (this excludes patients diagnosed in primary care). 62% were female and 38% were male
- Under 3% of people diagnosed were aged under 64 years; 38% were aged 85 and over
- 36% people had unspecified dementia; 17% were diagnosed with late onset Alzheimer’s; 14% had a diagnosis of Alzheimer’s and 12% of Dementia in Alzheimers Disease; 8% had Vascular dementia or other types of dementia (2019)
- 291 patients were on psychiatrists’ caseloads in 2019
- ELHSCP don’t currently collate data specifically on dementia
We know that a supportive environment can make a significant difference to the quality of life of people with dementia – having friends, accessible places and activities, feeling valued, loved and included. Things that work for everyone but which can get severely disrupted by life with dementia.
Sue Northrop from Dementia Friendly East Lothian spoke about Meeting Centres, a way of creating better support for people with dementia and carers in the community. Originally from The Netherlands, Centres are now found across Europe and are being introduced into the UK. They are social clubs that meet regularly in ordinary community venues where people with dementia and carers can get help and support from each other and from trained facilitators. What happens in a Centre is led by people with dementia and Carers and Centres are at the heart of a Dementia Friendly Community. Research shows they can improve quality of life for people with dementia and carers and help them live longer independently in the community, and reduce pressures on services.
The key issues are:
- Identifying the need for support in this community? Who’s it for?
- Finding the right place – Where?
- Getting people along – tackling stigma, social isolation, transport
- Identifying and using community assets – people, places, networks & resources
- Creating a Meeting Centre that works for us, based on what we know works in our community – made here by us
- Getting projects and organisations to join up!
The discussion is not about how to set up a Meeting Centre but whether one would enhance the lives of people living with dementia in our community. You can read more HERE.
OUR EXPERIENCE OF DEMENTIA
We started talking about our experience of dementia. Many of us had personal and family experience – a partner, parent, grandparent, friend. Some had experience through our work or community activity. We then watched a video of Wendy Mitchell talking about her experience of dementia and how it impacts on her daily life and family. You can view the video HERE.
In groups we discussed how dementia impacts on the person with dementia – the distress of forgetting, loss of independence and the impact on families. We spoke about the importance of getting support from friends and having things to do, people to see and places to go. Families and couples often struggled to cope and we agreed we must look at people with dementia and carers and how they connect to each other, families and communities. We also have to look across generations. Dementia is about all of us.
Some people said it was hard to distinguish dementia from other conditions, or just getting older. Some people found dementia hard to understand – why some people with dementia and families resist a diagnosis and deny having problems or don’t seek or accept help, often struggling alone. Some of us wanted to understand behaviours that we found difficult for example “aggression, sexually offensive language and behaviour”.
We agreed that we need to raise community awareness and understanding about dementia.
WHAT HELPS PEOPLE IN MUSSELBURGH LIVE WELL WITH DEMENTIA?
What we already have
We collated a long list of local projects and groups already helping people living with dementia including the Dementia Cafe at St Andrews High Church, Heart for Art and Let’s Sing. The Hollies is a valuable resource for people with mild to moderate levels of dementia providing a lunch club, entertainment, pet therapy and transport. The Hollies also offers education and new skills, for example on internet safely and using a mobile phone. The Hollies also has close contact with families. People also said that Workshops like this also bring the community together to talk about dementia.
What we would like to have
People had lots of ideas for making Musselburgh a good place for people with dementia, carers and families, where they feel safe, can access services and support and build confidence. We wanted:
- Dementia Friendly places and spaces: churches, business, communities and accessible events and activities.
- Visible support for people with dementia and carers – Signs in shops indicating support is available, eg. using the Sunflower lanyard, creating safe spaces for people with invisible disabilities.
- Quality Services – care in the community providing support services, Day Centres helping people to keep daily routine going and stay connected.
- Access to Arts and creativity – using art as a means of expression. Music, Choirs and groups, playing instruments. Relaxed events and performances.
- Community contacts and friendships – opportunities to speak together about dementia and with people living with dementia. We wanted links with schools, intergenerational work and with community groups – eg dog walkers. We wanted people living with dementia to be able to access friendly fun places to enjoy activities, learn new skills and meet friends and more opportunities for people of all ages to meet and have shared experiences
- Access to a range of physical activities and leisure – accessible sports facilities and Enjoy Leisure, Dementia Friendly walks to increase engagement in activity/exercise
WHAT ARE THE KEY ISSUES WE NEED TO ADDRESS IN MUSSELBURGH?
We talked about what we see as the priorities for making Musselburgh more dementia friendly and agreed on:
- Understanding dementia
- Supporting Families and Carers
- The role of the Community
Understanding Dementia – What is dementia, how does it differ from ‘normal ageing’? How do we know it’s dementia not just getting older? What works?
Supporting families and friends – we agreed it is essential to support families – seeing people with dementia as part of a family and community. We need to provide more support, help and information and involve family carers in discussions and plans. We need to appreciate the important role of young carers and the importance of the wider family in providing help and support. We wanted a focus on carers separately to people with dementia. And more access to respite, longer periods of time out from caring and addressing problem round financial worries and carer-stress. The move of Carers of East Lothian away from High Street in Musselburgh would make access to services more difficult for carers. We agreed we need to get information from carers themselves directly about what would help them most.
Services – We agreed there is a lack of services for people living with dementia and this needs addressed. For example having a special clinic with a GP to concentrate on diagnosis, or a room in each surgery giving recommendations and support for families. People wondered if there are enough GPs and services, we thought not. Day Centres were important and could help keep routine going and befrienders for home care were also suggested. We spoke about the central importance of accessible transport – buses, keeping people driving, community transport and new ways of thinking about transport. People felt there is gap after the Hollies Annex closed and need for more respite care.
Information – Access to information is really important. People across the community need to know about dementia, what it is, how to support people and what facilities, care, support and activities are already available. We need clear signposting of support and facilities available. Information about dementia should be widely available earlier on, before and soon after diagnosis and easily accessible for all – young carers, disabled people, people with mental illness, etc. Suggestions included a central information point where all dementia friendly groups can feed into – sessions in CAB, GP surgeries, public posters or the Hollies. People wanted information about how to prepare for life with dementia, eg power of attorney, driving and advice from CAB on finances. Information should be shared widely and creatively, using social networks and contacts.
Community – We felt a A Dementia Friendly Community could make a big difference. For example hairdressers making use of chats to impart knowledge. Local shopkeepers being aware when Mr B buys 10 tins of baked beans in 3 days in succession and knowing how to support customers. Facebook, Dementia Friendly Musselburgh and local groups and networks could all help spread the word.
BECOMING A DEMENTIA FRIENDLY COMMUNITY
A lot of the group discussions focussed on the community and its role in supporting people living with dementia. How do we involve the community in becoming more supportive? How do we know what support people with dementia and carers want and how do we provide it?
What is a Community? We discussed changes in our communities. Some felt communities are disintegrating when they need to come together. Some asked if Musselburgh is one community or many communities? We agreed Musselburgh is a community that is going through change – people are more mobile and there are many different views and identities. We spoke of how we are part of communities not based on where we live, eg mothers, dog walkers, hobbies. There were examples of active communities, eg Whitecraig Gala day is back and people spoke about their own sense of belonging. We spoke about the need to include new communities and be aware of hidden communities – eg children and older people who move to Musselburgh to be with families and carers and family that live elsewhere but support people in Musselburgh.
Creating a Dementia Friendly Community – We agreed being a Dementia Friendly Community could make a big difference. For example, through DF shops and businesses and being a good neighbour. How can we help/assist? How do we give good customer services to carers and people with dementia? What does it mean to be ‘kind’? If we have a neighbour with dementia, what can we do to help? Could we set up a Neighbourhood Watch area?
Building community connections – We agreed we need to challenge the barriers that separate people, including ageism and stigma, using community education and discussions in the community about dementia. The Area Partnership Community Day was suggested as an opportunity to engage with local clubs/associations and that we should use intergenerational work to involve schools and nurseries. We could also encourage younger people (in school) to get involved eg volunteering at care homes. People were concerned about isolation and want to find ways to link people to what’s already in the community. We can also use our rich community networks, local paper and local radio to spread information and connect people.
Mapping community assets – We need better information on what is already available in the community – for example, do care homes and nursing homes have someone who can spot early dementia? Sheltered housing can feel like a community a ‘wee family’. Churches can help more. Where are the Community Hub where family and friends meet? We talked about creating opportunities for people with dementia and carers to attend creative activities/centres, clubs, meet new people and have a daily routine. There are some very good facilities and groups, but not enough and we need more.
WHAT HAPPENS NEXT ??
Where do we start to make this happen? We had lots of ideas! On no particular order….
- Grow Dementia Friendly Musselburgh – Community and Businesses
- Organise a steering group from various groups in MB, churches to set up hub/Meeting centre
- Get more informed about dementia
- Involve people with dementia and carers
- Involve medical centres and local business
- Get evidence – what is the need? What do we already have? What are the gaps?
- Find the venue
We will be arranging the second stage of the Meeting Centre Discussion to start planning and setting up working groups. We will get together on March 24th, where we will be joined by Dr Shirley Evans from the UK Meeting Centres Support Programme and Graham Galloway who runs Kirrie Connections, Scotland’s first Meeting Centre.
Thank you to Trish Carlyle and Jane Ogden-Smith from East Lothian Health and Social Care Partnership; Stuart Baxter and Shirkey Gillies from Musselburgh Area Partnership and the staff at the Brunton Theatre. And Thank You to everyone who came along to the meeting, we are very excited about what happens next!
PLEASE GET INVOLVED & STAY IN TOUCH
You are welcome to join us at meetings, on working groups and through our network.
If you’d like to get involved or find out more, please contact:
Janice MacLeod, Chair of Musselburgh Health and Well Being Group
Sue Northrop, Dementia Friendly East Lothian
tel: 07727 883 881
Janice & Sue