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
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 how to make them more inclusive and enabling. 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 can also tell you more about Meeting Centres and how they work. See our Training Blog for more information.
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.
There is a group already meeting weekly in Musselburgh on Thursday mornings, 10.30 – 12.30 at the Musselburgh Old Course Golf Clubhouse. The Friendship Group is a partnership between the Musselburgh Old Course Golf Club and DFEL’s Musselburgh Meeting Centre. We are working with different groups and organisations to set up local Friendship Groups which are designed to support people living with dementia and unpaid carers.
Friendship Groups and the East Lothian Dementia Strategy
Friendship Groups are part of the East Lothian Dementia Strategy. 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. We want everyone to be able to be able to get a long to a group near them, or travel to meet others.
DFEL provides development support, training and helps to oil the wheels. We have 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. We can also offer training round designing places and activities to be dementia enabling and inclusive. We find these approaches work for everyone!
If you’d like to know more about Friendship Groups, please get in touch!
Take care
Sue