You need friends…
Friends make life sweet. Friendship can be a wave to a fellow dog walker every morning, supporting a life-long friend, closer than our family; or enjoying a hobby or activity with people who share our passions and interests. Friends can offer a helping hand when life gets tough and opportunities to give and receive. Friendship makes us resilient and better able to cope – whether we have a few special friends or lots.
Life with dementia can be tough on friendship. Carers may struggle to find time and energy to meet up; people living with dementia may worry they will be judged. They may struggle in conversations or social environments and withdraw to avoid anticipated hurt and embarrassment. Anxiety, worry and fear make it all much worse.
Friends may be unsure of what to say, worried they say the wrong thing, sad to see a change in a dear friend. Sometimes people simply don’t understand what dementia is, how it affects people and what they can do. Contact with friends can drop after a dementia diagnosis, just when we need our friends the most. And of course dementia is the most feared condition, reminding many of us over the fear and stigma round cancer in the 60s and 70s.
As dementia progresses, people living with dementia and unpaid carers work hard to adjust to the symptoms of dementia and the changes it brings. That includes managing social relationships and friendship. We developed Friendship Groups to help people who live with dementia as unpaid carers and supporters and who have dementia to stay keep connected to people, places and activities.
Friendship Groups – a potted history
Friendship Groups are informal, cafe-style weekly get togethers with friends for friendship, fun and mutual support; time with people in the same boat. People living with dementia, unpaid carers, supporters and friends get together in local community settings like cafes, community centres and church halls. We do what friends do – chat, have a cuppa, do activities and play together, we celebrate, have days out and often educate people about dementia and caring.
Friendship Groups started because people on the Memory Rehab course made friends and asked us to help them stay in touch. We found an accessible room, kettle and provided tea and coffee and we’ve never looked back. Over time Friends have given their views and experience to a range of consultations and policy discussions. Have visited schools to help pupils learn about dementia and working with older people and invited people to come and tell us what they do and hear our views. We’ve met local politicians, children, academics and historians and animals. We’ve shared our experiences with local supermarkets and shops and, being East Lothian, our views on parking!
Covid had a major impact and groups were unable to meet for a long time. Many Friends have died or are in care homes, some still struggle to get out and about. People living with dementia and unpaid carers were often extremely socially isolated in Covid and struggled to manage the restrictions and new ‘rules’. But the power of Friendship is strong and Friends helped each other through. We were very grateful to the Community Resilience teams who provided great support to Friends in Covid and built new community relationships which we want to nurture and support.
Friendship Groups now
If you live with dementia, you know about resilience and the Friendship Groups are coming back with a new community focus and energy. We’re now developing and running groups with people with lived experience and communities in partnership, so groups are better connected locally. Communities also become more informed and confident about dementia. DFEL provides development support, training and helps to oil the wheels.
There are currently 3 Friendship Groups in East Lothian –
Port Seton – Friends meet Thursday mornings. Our base is the Port Seton Community Centre, but we like to get out and about. Pop in on the first Thursday of the month between 10.30 and 12.30 if you’d like to find out more. We’re very grateful for the support from the Port Seton Community Centre and PSG Connected Communities Team.
East Linton Friends – meet weekly on Wednesday mornings, 10.30 – 12.30 at The Stables behind PrestonKirk. It’s a brand new groups so we haven’t got plans made yet, but we have enjoyed New Age Kurling and looking for some competition! The Friendship Group is run in partnership with the Lynton Day Centre, the Parish of Traprain, DFEL and Alzheimer Scotland
Musselburgh – also meets weekly on Thursday mornings, 10.30 – 12.30 at the Musselburgh Old Course Golf Clubhouse. This is a brand new group so we’re still making plans. The Friendship Group is a partnership between the Musselburgh Old Course Golf Club and DFEL’s Musselburgh Meeting Centre.
Dunbar – we got great local support for a new Group in Dunbar and plans are underway for a group due to start in the summer. Watch this space or get in touch if you’d like to get involved.
Gullane – we had a community conversation in Gullane during Dementia Awareness Week and there was some interest in a group. We’re currently working with the Day Centre and Village Association to see what the demand is for a Friendship Group.
Other Groups – we’re working with ELHSCP to plan the development of new Friendship Groups so the people who benefits most can access them.
Behind the scenes
Friendship Groups are designed to be small, local and sustainable, linked to community aspirations and energy. Partners include Day Centres, Health and Well Being Groups, Churches, Rotary, Schools, Libraries, GPs and local business. They help us find venues, people to host and help and get the word out. We work together to talk with the community about
.It always amazes me just how much work goes into making a Friendship Group work! DFEL and partners work to create a supportive and stimulating environment for people living with dementia and unpaid carers by:
Training local hosts and helpers in dementia, Dementia Friendly Communities and the Friendship Group model.
We base the Friendship Groups on the Meeting Centre model, flexed to a shorter, more informal session for people who want the benefits of friendship and social contacts. We work with East Lothian Health and Social Care Partnership, Connected Communities Teams, Alzheimer Scotland, Carers of East Lothian and to develop local ‘support pathways’ to help people living with dementia and unpaid carers get information and support when, where and how they need it. Friendship Groups, linked to a Dementia Friendly Community are an important local community resource and contact.
Gatherings, days out and visits help Friendship Groups connect to each other to share ideas and visit a new area, visit a new place talk about what matters to them. Gatherings and Have Your Say events bring people together to provide a forum for making a difference and impacting on policy and practice. It was this approach that led to the development of Meeting Centres.
People are inspired by friends and friendship, especially since covid. Friendship Groups are a critical part of the DFEL approach and are in proposals for the East Lothian Dementia Strategy, providing a flexible hyper local and community rooted supportive environment.
The new East Lothian Dementia Strategy provides an important focus for community conversations about dementia and how they can make a real difference and set up new groups. DFEL has free training on dementia, Friendship Groups and DFCs to support their development. As local groups grow, we help them meet up, invite them over for a cuppa, have a shared day out. Our role remains to initiate, support and ensure the quality of experience of Friends and transform their lives.