Only Connect: Inclusivity and tackling Inequalities in Dementia Care

“As people come and go, there’s no time for cliqueness to develop. Everyone is welcomed with compassion and interest.”

Nusaibah Hasan, a researcher on the EMPOWER Network interviewed Trevor Synge Perrin (longstanding member), Ellie Robinson-Carter and Peter Daniels (co-chairs) from Only Connect. Read on to find out more about their work.

Activities the organisation does that represents best practice in inclusive dementia care

We create space for people with dementia to take the stage and share, from their perspectives, how creativity has impacted their lives and enabled them to continue to contribute and build their sense of self.
We set an example of what is possible when people with dementia are given the right platforms and creative frameworks to tell their stories and share their experiences widely.

Insights from Trevor (long standing member):

“Happiness of the service-users is paramount.”- Being driven to meeting venues that would otherwise be inaccessible and having an inclusive, welcoming space that contrasts with many socially inclusive wellbeing groups run by non‑empathetic individuals who impose rigid plans that few participants actually enjoy.
A variety of activities are offered such as crafts, being outside, visiting different local areas and attending regular group meetings. Even when returning to the same locations, it is rewarding to see how they change with the seasons and the people present. It helps to gain confidence revisiting a place some part of them recognises. Some service users also share lifelong professions, interests or skills, such as flower crafts, cooking, photography or button making.

Why are these activities important for good practice and inclusive dementia care for the local community?

So often people with dementia aren’t given the opportunities to continue to thrive, on the terms that work best for them. Flipping the power balance so that people with dementia are viewed as the experts, and ensuring we create opportunities to learn from them, is essential to enable inclusive dementia care for our local communities.

Insights from Trevor (long standing member):

Including everyone and building a sense of belonging, giving them the chance to participate in things most people exclude them from.
- “I was partially sighted but there was no hesitation in including me in visiting an art gallery, drawing, clay making and going for walks. It’s a terrible thing to be excluded automatically because you can’t see.”
- “It’s important to always remember that just because someone has lost their memory and some basic physical to mental abilities, they are also the accretion of their past lives. Don’t dumb down and revert to childish music, art and so on. These have their place but are not for everyone.”
Professional group carers, like many medics, often isolate their speciality from the individual, overlooking other health problems and disabilities that commonly accrue with age. It is not widely recognised that people living with dementia may also develop hypoacusis (a debilitating sensitivity to sound). Having a controlled, safe setting in cafes and group activities can help those who feel overwhelmed and upset by loud noises.
- “If someone is dull to respond to a voice or a sight, don’t assume this is dementia, it might well be sight or hearing loss and there may be lifelong quirks, unwisely assumed to be part of dementia, like fear of dogs, a deep antipathy towards something, major tactlessness or a tendency to hug.”

What impact does your work have on people living with dementia and amplifying lived expert voices?

Only Connect amplifies the voices of lived experts and inspires projects where co-creation with people with dementia is at the heart. At previous gatherings, attendees have shared incredibly positive feedback and the need for in-person events is very evident:
- “This is the first time I’ve attended an event when someone hasn’t read my name tag before speaking to me” Professor, University of Exeter
- “Feels like there’s no longer any tension or nervousness in my brain. Resolved-by the power of a smile. Met so many wonderful people” Person with dementia, London
- “I feel sad that it’s over. It was a coming together of like-minded people. Passionate people. Compassionate people. People who do their work with hearts” Practitioner, Suffolk
- “The loneliness was there, the vulnerability was there and, most of all, an overwhelming sense of togetherness and companionship. I would like to build on that” International attendee

Insights from Trevor (long standing member):

Many carers who attend the group say it’s made all the difference to their lives. Mutual support, understanding, shared problems and answers. The mood of participants was overall improved, if not throughout the whole week, for several days afterwards.
Participants gained confidence and self-regard, rediscovering themselves in doing an activity they didn’t know they could do like macramé, clay modelling, growing their own food and making a Christmas wreath. Creating a new found sense of self-validation.
- For example, photography is a great activity. Anyone can take a photograph. In my case, not being able to see through the view finder, I’d ask someone to photograph something for me like bare branches against a blue sky.

What key factors have made your work and organisation successful?

Creating a space where people with dementia’s voices are amplified and celebrated first and foremost.
Creating an inter-disciplinary space where everyone is seen for their unique self, regardless of their professional role or personal circumstance.

Insights from Trevor (long standing member):

Inclusivity – again the transport when necessary.
Total respect for all participants – They still have personalities and often hopes and anxieties like everyone else. Especially in the early stages of dementia.
Learning from the participants themselves and ‘working’ with that. Not imposing ideas of what’s good for them or what they might like.

Quotes from Only Connect Members that illustrate the impact of the organisation:

“As people come and go, there’s no time for cliqueness to develop. Everyone is welcomed with compassion and interest.”
“For those of us feeling isolated and with no family, being part of a group is an activity in itself.”
“Pottery, felt making, gardening and making hot drinks on a fire in the open created shared memories of living and being happy in the moment.”
“It’s vital that the achievements and liveliness of people with dementia are publicised through this and other groups – to the world.”
“The knowledge that it isn’t all doom and gloom, new friendships can form, new experiences had, laughs to be laughed and even cake to be shared.”
“Never assume anything about a participant. Dementia is so random there may be pockets of full clarity you alight on, unexpectedly. People have good days and bad ones as dementia progresses at different rates.”
“This is a person whose ‘inside’ is as conscious, feeling and reactive as yours. Dementia is an ‘add-on’ which eats away at them but must never define them.”