LIVING NOT EXISTING: ANNUAL GATHERING 2018: FULL REPORT

 

 

LIVING NOT EXISTING

DFEL ANNUAL GATHERING 10 & 11 OCTOBER 2018

 

This year we gathered over 2 days. Day 1 was for people with dementia and family carers and friends, Day 2 was for everyone. In Day 1, we started with people talking about things that mattered to them and that they would like to change. We also discussed the idea of Meeting Centres in East Lothian and whether this would hep us build on the great work going on across the county.

Day 2 was for anyone interested in dementia and focussed on Meeting Centres as a possible approach for East Lothian.   East Lothian is a part of this new programme bringing Meeting Centres to the UK.

We were delighted that the Meeting Centres discussion was led by Dr Shirley Evans, from the University of Worcester. Shirley runs the UK Meeting Centres Support  Programme. Read more HERE.

 

Meeting Centres are a local resource, operating out of ordinary community buildings, providing warm and friendly expert support to people living at home with dementia. At the heart of the Meeting Centre is a social club where people can meet to have fun, talk to others, and get great help that focusses on what they need. 

There is good evidence both from research that Meeting Centres can help people with dementia and their family/friends and carers adjust to life with dementia to feel more positive, connected and better able to manage life with dementia. Meeting Centres are an important way of keeping active and feeling supported to manage the cognitive, emotional and social challenges of living with dementia. They provide accessible support and information at a local level.

We were also very fortunate to be supported by Paul Thomas from DEEP (the Dementia Engagement and Empowerment Project) and Beau Nieuwenhujis, Amanda McCarren and Mark from TIDE  (Together in Dementia  Every Day) who facilitated the sessions, and so much more!

DAY 1- LIVING WITH DEMENTIA

Day 1 was for people who live with dementia all day, every day, either because they have dementia or are a family member, friend or care-partner for someone who does.

In the morning we talked about what matters to us.  In the afternoon, Shirley Evans from the Meeting Centres Support programme at Worcester University told us about Meeting Centres and we then talked about how they might work in East Lothian.

These are the comments fed back to DFEL by Paul Thomas from the Dementia Engagement and Empowerment Project and Beau Nieuwenhuijs from Together In Dementia Everyday who facilitated these discussions.

WHAT PEOPLE SAID: KEY MESSAGES

  • Living with dementia (and getting older!) is hard work, and people work hard to stay active, stay positive and maintain normal life.  
  • It’s important to stay involved and connected to the community, of all ages and to feel able to speak openly about what it’s like to live with dementia. We need to continue to raise awareness about dementia and challenge stigma.
  • Relationships with family and friends are crucially important and there is a need for services like counselling to help people keep family relationships healthy and strong. We must also  recognise that not everyone has family support.
  • People get great support from spending time with others with similar experiences and this is crucial to living with dementia.  
  • Transitions, such as having to give up driving, are tough and people with dementia and carers want more help to manage this and better, more accessible public transport.
  • People also want help to access their rights, for example to a comparative assessment, to have access to services and support from diagnosis to the end of life, not just for a year after diagnosis.  Plus more open communication from professionals and better access to information.
  • Services must get better at supporting people from diverse cultures and backgrounds, including more male buddies and carers.

DAY 2:  A DAY FOR EVERYONE

On Day 2 we invited anyone with an interest in dementia to join us to find out about Meeting Centres and talk about how they might work in our different communities.

An Introduction to Meeting Centres

Dr Shirley Evans opened the day by telling up about Meeting Centres.  Meeting Centres originated in the Netherlands and now operate across Europe. Shirley and colleagues at the University of Worcester have got funding from Big Lottery to develop Meeting Centres across the UK and East Lothian is part of the programme. 

Meeting Centres are a local resource, operating out of ordinary community buildings, providing warm and friendly expert support to people living at home with dementia. At the heart of the Meeting Centre is a social club where people can meet to have fun, talk to others, and get great help that focusses on what they need. 

There is good evidence both from research that Meeting Centres can help people with dementia and their family/friends and carers adjust to life with dementia to feel more positive, connected and better able to manage life with dementia. Meeting Centres are an important way of keeping active and feeling supported to manage the cognitive, emotional and social challenges of living with dementia. They provide accessible support and information at a local level.

Recapping Day 1:

Paul Thomas and Beau Nieuwenhujis outlined the main issues raised in Day 1 by people with dementia and carers. The full details are provided in the write up of Day 1 but the key points are:

  • You have to come to terms with life with dementia, stay positive, active and connected – this is hard work!
  • Getting out and about, relationships with families and transport (stopping driving, public transport) make a huge difference and should be better supported
  • Being with others in the same boat helps a lot
  • People need to feel able to speak out about dementia and feel free of stigma and discrimination
  • People should be able to access their rights – for example to a review and new assessment
  • Services should be available from diagnosis onwards not just for the first year and should be geared up to meet the diversity of people from different cultures, for men as well as women

We spent the rest of the day talking about Meeting Centres and how they might work in our different communities. We then got together to share ideas and thinking.

 

Day 2 discussions:

The main points that came out of the Day 2 discussions are:

  • People with dementia and carers must be at the heart of discussions about Meeting Centres, treated with respect and given choices.   
  • The outcome doesn’t have to be a Meeting Centre, this is the start of community conversations.
  • Centres should be for all people with dementia and their families, including people with advanced dementia and support/services to be sustained and developed not just at ‘key stages’. 
  • Centres are more than a building, it is about feeling included, part of the community and at home. That includes challenging attitudes to dementia as a community.
  • There are many opportunities to build on what is already happening – groups, community assets – by joining up and being smart about how we use our assets; not duplicating or undermining what is already in place. What we create must be sustainable and accessible and develop – transport is key. 
  • Conversations about Meeting Centres must be led by communities, bringing people together to talk about what people want in their community, respecting community diversity
  • There are many options and issues to consider, such as:
  • Finding the right place 
  • Will Meeting Centres work for people with advanced dementia? 
  • Should Centres include other groups or conditions or the whole community? 
  • What do we need to make it happen in our community?

 

WHAT PEOPLE SAID IN MORE DETAIL:

Day 1: Living with dementia: 

We worked in small groups talking about the the things that matter to us and that we want to address.  People with dementia and carers worked together and separately to do this.

THEME 1: LIVING WITH DEMEMTIA

Staying active, positive and hopeful

  • Do what I’m told!
  • Dog walking, colouring, gardening, 
  • Keep fit, design, a new life. 
  • Getting out
  • Keep active, swim, gym, keep physically fit, helps my brain.

Staying positive 

  • Coming to terms with dementia – to relax, I sing a song in my head
  • Take yourself out of a downer
  • No stigma, be positive try not to feel sorry for ourselves
  • Don’t blame your family
  • Important – shouldn’t think you’re the only person need to learn

Keeping on keeping on

  • Don’t feel stigma, still drive get out and about, walk dog, cycle, sponsored walk
  • The older you get the harder you work
  • Just get on with it, different all the time
  • Adapting and learning
  • Still drive, live alone, still do everything, chair guild,
  • Still driving, wife plays golf get about a lot see friends

Relationships really matter

  • Get out and about with my wife
  • Importance of healthy relationships
  • Sometimes hard not to let it get you down, help from friends,
  • Support from family is invaluable
  • Important to meet others or can feel sorry for yourself,

The tough stuff

  • Miss driving licence, lost it, independent travel, not fair
  • Driving knocked me hard – used to drive for family and work
  • Taking license away is not enough, goes against human rights to take it without replacing it
  • Gave up driving, can’t organise things husband does it all
  • Big disadvantage if you don’t have a care partner 
  • Doesn’t touch piano now
  • Why me?
  • No buses PS/C to Haddington
  • Bus services very complicated Dunbar to Livingstone
  • Public transport – too complicated and it makes people dependent on their families
  • Need to teach people to access public transport 
  • Memory gets me

THEME 2 WHAT HELPS – NOT ALL MEDICINE COMES AS A PILL

Speaking out and challenging stigma:

  • Speaking out about dementia and a diagnosis  and what it means to me and my family
  • Removing stigma

People in the same boat

  • New friends laughter humour
  • Common interests
  • Peer support meet up with peers
  • Getting together talking with people with the same problems

Being involved

  • Involving people keeps people going
  • We’ve got a really good set up round here, no one comes close
  • Sharing in community opportunities, all ages, learning together

Transport

  • Public transport very important

THEME 3: WHAT NEEDS TO CHANGE

  • Raise awareness about dementia in the community and remove stigma
  • Support relationships with families and carers eg counselling
  • Help people get together with others with similar interests and experiences – as people with dementia on our own and with care-partners
  • Support the transition to not driving for drivers and carers/family
  • Make public transport more accessible and teach people how to use it
  • Help people access their right to a comparative assessment – have I got worse or better?
  • Recognise that some people don’t have carers or family close by
  • Include people from different cultures and backgrounds 
  • Get more male buddies, carers etc.
  • Making sure community or support groups work for everyone from diagnosis onwards not just stopping a year after diagnosis
  • Get more open communication from professionals and better advice on where to get information 

DAY 2: MADE HERE BY US – MEETING CENTRES AND EAST LOTHIAN:  A DAY FOR THE WHOLE COMMUNITY

THEME 1 – People with dementia and carers must be at the heart

  • People with the most interest must be at the heart of it
  • Need to be choice and respect for changes and choices and be a balance – eg for later stages
  • Have a choice, not just 1 centre or option
  • Be part of the community
  • Have to reflect flexibility/choice
  • Have/be part of life again
  • Place must feel at home/comfortable 
  • How it feels not actual building
  • Everywhere – Meeting centres on tour – pop up hubs on the High street, supermarkets etc 
  • Need for something in the later stages – can meeting centres fill that need?
  • If people are fading we invite them to participate in something
  • Get together for dinner/cinema club
  • Tackle loneliness and need for company
  • Challenge attitudes round dementia, challenge as a community
  • No Floaters – provision of services etc needs to be for the long term not just in key stages (post diagnostic support)
  • We can’t just maintain it we have to progress

Theme 2 – we must build on what we have:

  • Lots on – everywhere
  • A chance to integrate into the community 
  • Must build on existing groups an support local activity, not reinvent the wheel
  • Existing groups could join up
  • Fortunate in EL with so much out there
  • Lot already in more groups
  • Dunbar need to join up
  • Make use of under used facilities in towns/areas – can this form meeting centres?
  • Physical hubs already exist – eg library, schools
  • Be smart and sensible about sharing services/facilities
  • Pulling all the strands together
  • Don’t want to destroy all the good things that are already here
  • Need to access places – transport to get there
  • An opportunity to mix not a hard sell

Theme 3 – Communities must lead and we must respect every community does it their own way

  • Organise what there is locally not centralised
  • Start locally and spread organically by word of mouth
  • Different models for different areas
  • Cockenzie – we can build it up ourselves
  • Get the Hollies and Friendship Group together, invite other
  • Different in North Berwick, not  just people with dementia
  • People in Musselburgh like to go home for lunch
  • Haddington has a blue print – who do we draw on?
  • Dunbar – lots happening, need to join up, Network could employ someone just for Dunbar (if funded)
  • Supporting local activity – need for central hub in EL to coordinate it all
  • Include Area Partnership 

Theme 4 – we must work through community conversations to find out what the community has and wants.

  • Start with people with dementia and carers
  • Need to start somewhere, initial meeting then invite others – eg leisure, transport, Friendship Groups, business planning
  • Have a public meeting and set up a core group
  • Find out what the community wants
  • Build it up ourselves bit by bit – eg add lunch (fund it ourselves)
  • Don’t try too much too soon, build it bit by bit
  • Find out what’s happening, map locally
  • How Dementia Friendly is Musselburgh? We need to ask people to find out
  • Find out if local people want something like Meeting Centres – consultation
  • What does the community want?

Theme 5 – Lots of issues and questions to consider:

  • How do we find the right place? 
  • How long? Two hours is not enough.
  • Will Meeting Centres work for people with advanced dementia? 
  • Should we look at Centres involving other groups or conditions or the whole community? 
  • Would that deflect us from dementia?
  • Can we involve everyone?
  • What do we need to make it happen?
  • What if people don’t want to go?
  • Many people have dementia and another condition.
  • Can others with conditions affecting the brain can it be accessible, can they be included?
  • Can it cover all conditions 
  • Only ‘targeted’ at people with dementia. can it include others
  • Will this take the focus away from dementia?
  • Good idea – right place/location, 2 hours is not enough
  • What is the missing magic – so much is already happening
  • Paid person to coordinate this
  • Whoever does it needs oommph!

Theme 6 – Some early actions were suggested:

  • We need to start/continue community conversations. 
  • Find out about and visit other Meeting Centres already running  – ZOOM?
  • Lots of ideas for groups, activities and clubs
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