The Maitlandfield House Hotel, 16th January 2025
At our workshop in late 2024, we agreed to meet again early in 2025 to take the conversation forward. A group of 20 or so of us returned to the Maitlandfield House Hotel with lots of tea and some rather excellent scones….
Our focus was on learning about the communities in the Haddington Area and talking about what makes communities strong, supportive and a good place to live if you are affected by dementia. We used Cormac Russell & Nurture Develoment’s Assets Based Community Development approach.
Conversation 1 Why have we come today – turning up, gifting time, experience and views?
We started sharing why each of us had come along and given their time and energy to be there. Everyone, paid and unpaid, brought something unique and special to the conversation and gave their ideas, experience and skills to our discussion. We talked about why we had come along and what motivates us to ‘turn up’. We were inspired and motivated by many different things that we care about.
- Personal experience
- Care about our community
- To meet needs in the community
- Make things better
- Raise awareness about how dementia affects people and build understanding and connection
- Raise awareness of the different groups that can get dementia (eg different ages), and who are affected – families, supports
- Ongoing support for people over their ‘dementia journey’
- Giving people options and choices
- Help people affected by dementia to live well and be connected
- Address isolation in rural areas
- Improve transport options
- It’s about our own futures too
- Answer my questions
- A better older age for young people
Conversation 2: What do communities in the Haddington Area do well, what’s strong?
We then went on to share our knowledge and experience of communites around the Haddington area and what our communites do well. That we start with discovering together the strengths of the comunity – people, places, networks and resources. This is very different from defining communities by ‘need’ or deprivation which is often how services approach communities. We have too many misery maps! A focus on community strength places a focus on what communities can do for themselves and opens converstions about what services can do to support people and communities rather than to ‘fix them’.
- There’s lots of activities and things to do
- Lots of groups and interests
- Community Centres – courses, programmes – Nungate and Bridge Centre
- Lunchclubs in villages – Humbie, Pencaitland etc
- Small local community groups can have closer and deeper bonds
- Re-engage – meals with community members in Haddington
- The Day Centre
- Village Halls and managers and groups etc that run there
- Churches – Minister, congregations, venues
- Primary care – GPs, link worker
- Care at home support
- Local business – hairdressers, pharmacies, dentists, podiatrists, etc
- Area Partnership & Health and Wellbeing groups
- Young people, schools and nurseries
Conversation 3: Living with dementia in the Haddington Area – community assets and support
In conversation 3 we focussed in more detail on what community assets and support are available for people living with dementia and unpaid carers in the Haddington area. This included specifically designed round dementia or caring and generic services open to all. We found a wide range, many run or led in and by the community and under community control. Others are services based in the community and some are outwith the community and not community controlled. Each is valuable and has a role to play.
This is only a partial list – we agreed there are many more!
- Day Centres
- Lunch clubs
- Primary care – GPs, link workers, pharmacists
- Dentists, podiatrists, physios, Allied Health Professionals
- Hairdressers, beauticians, therapists
- Local groups and activities – lots!
- Maitlandfield House Hotel Singing Group – Anne Traill
- Maitlandfield House Hotel
- Local shops and cafes
- Michael Huddleston, Alzheimer Scotland Development Worker
- Phone services
- Carers of East Lothian
- Churches, people and building
- Local social networks – Community Councils, Resilience Teams, U3A
- New community centre at the Garlton Building
- The natural environment, outdoors, parks
- Our Community Kitchen and Community Garden
- Friends of the Tyne
- Aubigny Sports Centre and activities and groups (eg walking groups), cafe
- Amisfield Walled Garden
- Bus services – Prentice
- Royal Voluntary Service transport for hospitals etc
- Library
- The John Gray Centre
Conversation 4: Challenges and opportunities
Finally, we started to analyse the challenges and opportunities open to us in the area. Again this is very much a starter for 10.
Challenges
- People with dementia and care-partners become disconnected from people, places and activities of daily life
- Barriers are often attitudinal and harm is avoidable and preventable
- Links to stigma, discrimination and negative attitudes toward dementia
- Lack of awareness about available supports and how to access them
- Transportation and accessibility issues, especially in rural areas
- Need for more dementia-friendly spaces and activities so everyone included
- Difficulty reaching and engaging people who are socially isolated
- How to work with manageable size communities in a large town
- Who would we support?
- What is the gap/demand/need?
Opportunities
- Changing attitudes around dementia
- Desire to challenge stigma
- Dementia Friendly Communities
- Promoting ways that help people adapt to life with dementia
- The possibilities and positive narratives round Brain Health inspires people to get involved
- Small communities know people
- More public education on brain health and dementia prevention
- Intergenerational approaches and supporting healthy brains and positive ageing for future old people
- Learning from how attitudes changed around other conditions like cancer
Where did we get to?
Looking at our conversation as a whole:
- We adopted an Assets Based Community Development approach to take forward the discussion about whether a Meeting Centre approach would support community aspirations in the Haddington Area.
- We described many existing community assets that are supporting people living with dementia, care partners, families.
- But they are only supportive if they are inclusive and accessible and stigma is challenged
- Attitudes and stigma around dementia remain a significant barrier to inclusion and support and they discourage many people from getting engaged
- Stigma and harm are preventable
- A new focus on promoting brain health across the life span has been transformative and has encouraged more discussion, more openness and an inclusive, whole community whole life approach.
- We need enabling connections and conversations, including people affected by dementia
- We can learn lessons from other conditions and groups – stroke clubs, cancer support groups etc
- We were inspired by a community conversation about brain health and agreed to take this forward
- Organisations in and outwith the Haddington community can support this, including learning from the Musselburgh Meeting Centre, wider work in Musselburgh and Meeting Centres Scotland
Taking the conversation forward
- Focus on brain health – we need to shift from a deficit approach to dementia to a positive focus on brain health – it’s transformational and lights a spark
- We want to organize a brain health event/initiative to widen the conversation across the community
- Bring together and partner local groups like U3A to host dementia awareness/brain health talks
- Improve communication channels to share information about available support and activities – eg What’s On
- Explore ways to make existing community spaces more dementia-friendly and inclusive
- Engage healthcare providers like GPs and pharmacists as key partners
Next Steps – taking action
- Volunteers for a working group – please contact Sue
- Sue will arrange a meet in 6/8 weeks
- Shamin and Christine will follow up with primary and pharmacy about linking to the work
Massive ‘thank yous’ to everyone who made it along and made it such a positive and action focussed day. There were people who weren’t able to be with us and we look forward to them joining the conversation.
Making progress relies on people who live and work in the community getting involved, in particular people with experience of living with dementia and care partners in the area. Please get involved, spread the word and we can make it happen together.
Cheers
Sue