DEMENTIA FRIENDLY EAST LOTHIAN: MUSSELBURGH MEETING

On 24th June 2022 we had our first DFEL Gathering since Covid arrived in March 2022.  A lot has happened then aand we’ve been inspired by how communities supported each other during the lockdowns. If anyone doubted that community matters, they surely can’t doubt it any more.

The most exciting news for us is that DFEL was awarded the grant to set up and run the Musselburgh Meeting Centre  by the East Lothian Health and Social Care Partnership (ELHSCP). We want to ensure people with dementia and unpaid carers are fully involved in all we do and work as equal partners with the Musselburgh community and the East Lothian Health

The Musselburgh Meeting Centre will be East Lothian’s first centre and will be developed alongside making Musselburgh a Dementia Friendly Community.

Twenty two people got together at Queen Margaret’s University on 24th June  to continue the conversation about the Musselburgh Meeting Centre and Dementia Friendly Musselburgh. We worked in small groups to share our ideas and experience of:

• What makes Musselburgh a good place to be if you have dementia or are an unpaid carer/supporter?
• What could be better?
• What changes need to happen?

We came up with lots of ideas and already people are making changes happen. We agreed to keep the conversation going and see how far we’ve got at the Musselburgh Area Partnership Communities Day on 10th September

When you’re first given a dementia diagnosis it feels like everything goes quiet. You aren’t given any information
“ [Diagnosis] ..it’s a kick in the stomach. What happens now? And then suddenly you are overloaded with information”
Some people don’t like to leave home and don’t feel safe outwith groups that ‘know’.
Even attending ‘dementia’ groups is a struggle at times.
“You can be more free talking to people who aren’t your family. You don’t have to worry about them”.
“When I meet someone now, I make it my duty to tell them I have dementia. When I was diagnosed I lay awake all night, turning it over and I decided then & there I wasn’t going to be ashamed.”
There is huge importance to getting out within the community & being able to rely on support from people who aren’t your family.
People with dementia & unpaid carers/supporters don’t want to feel confined to ‘dementia only spaces’.
Need to balance with ‘feeling safe’, being with people that understand dementia or are in the same boat

What makes Musselburgh a good place to be if you have dementia or are an unpaid carer/supporter?

Good community spirit
Good outdoor spaces
Transport hub, not isolated
Libraries, MELC, Fisherrow
Churches – North Esk, At Andrews High – people, facilities & gardens
The Hollies
The new Meeting Centre

What needs to change

“There is nothing in Musselburgh for people with dementia, Sue has done a wonderful job. I live on my own, and she really brought me out of my shell. She kept up communication and encouraging me – it’s important that people don’t give up on me.”
Spaces need to be dementia friendly that everyone can access
Home has to be a place of sanctuary for people living with dementia, where they feel safe and stigma free.
It is important that the space for the Meeting Centre feels like home and is a comfortable space.
Acoustics of a room are one of the most important parts.
The ability to freely make yourself a tea or a coffee too.
It [Meeting Centre] also needs to be easily accessible.

Create opportunities to come together with people in the same boat
Create welcoming spaces not dementia specific
Ensure places are good for people with hearing and other sensory problems
Comfortable and friendly places with carpets, couches, soft furnishings, comfortable and friendly
Spaces where we can bring pets
People could wear badges/lanyards to show they have dementia – but would that help or hinder?

People need to feel welcome and connected to each other more
Advocacy – being able to speak for ourselves
Challenging stigma – I am not dementia!
Importance of a physical space for dementia where people can go and find out more
Loss of local services based in Musselburgh has weakened links

The Hollies is struggling – funding
Used to have the Marches in the 90s
Information on what’s available and activities, maps
Accessible Parking, close to amenities
Easier access to the beach
Benches, spaces to pause in new housing developments

Something built for us; developers give something to the community
Design buildings based on how people experience them
Accessible parking needed if you don’t have blue badge
Better transport with assistance
Provide more accessible information about what’s available – support, activities, events etc
More accessible activities – drama, singing art, easy exercise classes

Create opportunities to come together with people in the same boat
Create welcoming spaces not dementia specific
Ensure places are good for people with hearing and other sensory problems
Comfortable and friendly places with carpets, couches, soft furnishings, comfortable and friendly
Spaces where we can bring pets
People could wear badges/lanyards to show they have dementia – but would that help or hinder?