Butterflies Memory Loss Support Group: Promoting Self‑Care for Family Carers

Butterflies Memory Loss Support Group helps carers recognise their loved ones’ abilities through activities that show people with dementia can still contribute and achieve.

Nusaibah Hasan, a researcher on the EMPOWER Network interviewed June Cooke, one of our community partners who heads Butterflies Memory Loss Support Group. Read on to find out more about June’s work.

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

Creative and Expressive Activities

Butterflies follows John Killick’s style of poetry, collecting statement lines during sessions and reorganising them into meaningful poems. This allows people to express exactly what is on their mind in a non‑threatening way, creating innovative poetry through storytelling.

Music sessions are an integral part of what we do at Butterflies, with a variety of activities such as a glass percussion orchestra led by an expert, percussion is something everyone can participate in. The instruments include glass bowls and glasses, scaffolding pieces, spanners, tools and other items familiar to people found in their homes. We have regular ‘jamming’ sessions on the guitars, saxophone, the keyboard, and other percussion instruments. Our members are often found teaching one another and perform together, helping those who have lost confidence, rediscover their musical abilities.

Other expressive activities include printing and photography, model making, textiles and glass engraving sessions, which are particularly popular among those who find traditional crafts, like colouring, demeaning. Velvet art projects are useful for those who struggle with sight issues and keeping withing the lines when colouring. One of our members welcomes new members by producing personalised pieces of art for them, fostering a safe and inclusive environment.

Social activities

The support group encourages organic social interactions. Where rather than structured interviews or formal sessions, activities flow naturally around themes like local history photographs, encouraging conversations about memories, life and experiences.

Our monthly carer support groups are designed so carers can bring their loved ones. While staff engage with those living with dementia, carers are able to receive separate training, support and advice.

Educational and Empowerment Programs

Our Good Life with Dementia course, a six‑week programme led by people living with dementia, fosters an inclusive and educational environment where newly diagnosed individuals explore topics of their choice, such as loss of driving licences, diagnosis and the impact of their diagnosis on their family.

Similarly, the Butterfly Effect Task Force ensures people with dementia have a continued voice in shaping services and sharing their experiences, emphasising meaningful inclusion and alignment with those directly affected

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

The activities are highly individualised, if someone does not enjoy a particular activity, staff provide alternatives. Each session offers multiple activities to accommodate different preferences and abilities. Ensuring a person‑centred approach.

Rather than focusing on what people have lost, we nurture what’s left and build skills and confidence in that way. The activities provide a sense of achievement, often a diagnosis leaves people feeling they are useless and unable to do the things they used to or learn new skills . We have observed that once they achieve something, they’re motivated to try again.

We focus on a softer wave of engagement through natural conversation and activities that feel less intimidating than formal assessments or structured questioning. Allowing people to feel comfortable enough to participate authentically and organically.

These activities support both carers and those with dementia, helping carers recognise that their loved ones can still accomplish things, challenging assumptions about capabilities and potentially improving relationships.

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

Through collaboration with the University of Hull, Butterflies has helped produce booklets addressing difficult topics that people often avoid discussing, from topics such as relationships to toilet issues. These resources come directly from the experiences and needs identified by group members.

Members have spoken at events with 300+ attendees, giving them a voice they felt they didn’t have before their diagnosis.

Butterflies help carers see their loved ones’ remaining capabilities, which can improve their interactions. Activities demonstrate that people with dementia can still contribute and achieve, countering the narrative that they “can’t do that anymore.”

Through partnerships and educational outreach, Butterflies is breaking down stigma and creating understanding across generations, from schools to universities.

Family Testimonies and Feedback

One member noted – “I have done so much since my diagnosis that I would never have done otherwise.”

Another member’s daughter in Greece calls regularly and reports that “all he talks about is coming to butterflies and what he’s doing at butterflies.” Before joining, he had nothing to say during phone calls.

A member who hadn’t retained memories for years suddenly remembered a detailed experience at a frozen lake after seeing an image during a presentation. This sparked other memories and gave hope to both him and his wife.

Our previous holiday initiative in Turkey gave participants the confidence to travel independently. One woman has gone on to travel extensively after her trip with the group joining a coach trip to Germany, a cruise around South Africa and more recently a trip to India.

What key factors have made your work and organisation successful?

June’s personal passion, driven by her experience with her father’s dementia, combined with “an amazing team who really care” forms the foundation of success.

Members feel genuine ownership of the organisation. Their artwork covers the walls, they contribute to booklets and resources, and they are engaged in decision-making processes.

We share updates on advocacy work and report back to members about hospital issues and systemic changes, creating a strong sense of shared mission.

Rather than imposing structures, Butterflies has grown organically around members’ needs and interests, allowing authentic development. We support people throughout their journey, from diagnosis to progression, building lasting relationships and trust.

Any national expansion projects the organisation is planning to do on inclusive best practices in dementia care and future goals?

Our current focus is our coverage area of Hull and East Riding. The East Riding district is vast and provides significant coverage challenges already.

Rather than a geographical expansion, we focus on “deeper roots than many roots.” Our expansion has been from one group in Hull to multiple services including:

Weekly luncheon clubs

Various specialised groups

Multiple support groups across East Riding villages

Butterflies focus on quality over quantity. Preferring to maintain high standards and quality service in their current area rather than spreading resources too thin.

To serve rural areas effectively, we are focusing on training other organisations and individuals to work with people with dementia in modern, 21st‑century ways, rather than expanding direct services.

Future goals:

We want to change the future rather than just maintaining the status quo of dementia care services.

We hope to improve relationships between voluntary organisations and statutory services, addressing the current disconnect where people feel discharged and unsupported after diagnosis.

We would like to use the network to reach younger generations and professionals, ensuring future care providers understand appropriate, person-centred care approaches.