Dementia can bring loss, uncertainty and fear. But as our first mindfulness course for people living with dementia showed, it doesn’t diminish the capacity for connection, calm, and joy. Julia Powell shares her experience of running a mindfulness course for people living with dementia.
Mindfulness for people living with dementia
This spring, Sussex Mindfulness Centre, ran its first eight-week mindfulness course for people living with dementia and their loved ones. Teaching on this course was something I’d been hoping to do for a while. I cared for my mother who lived with dementia, and during that time I often found myself drawing on mindfulness. It helped with my own wellbeing and in the moments my mum and I shared together. I wrote about my experiences caring for my mother, including leading mindfulness practices, in Julia’s Dementia Blog.
My mum often felt anxious and frightened by what was happening to her. Sometimes she was distressed because she couldn’t remember where she was or what she was supposed to be doing. At other times she had moments of insight into her condition and became fearful about what the future might hold.
What I noticed was that when I could gently bring her attention to something happening right now – the sound of birdsong or the warmth of the sun on her face – there were moments of calm, connection, and joy. I led practices, such as body scans and they seemed to create a sense of calm and connection. Those experiences stayed with me and left me wondering whether mindfulness might offer something valuable to other people living with dementia and to those who support them.
How the course came about
With the support of Sussex Mindfulness Centre (SMC) and particularly Robert Marx, Co-Lead of the Centre and Lynn Ley, an experienced clinical mindfulness teacher, the course became a reality. Lynn, recently retired, generously volunteered her time and expertise to support the project. Quite simply, without Lynn’s enthusiasm, warmth and willingness to help, the course would not have happened.
The adapted approach for dementia
From the outset, I wanted to ensure the programme was genuinely accessible and relevant for people in the early stages of dementia.
The curriculum was informed by a review of the evidence for mindfulness programmes for people living with dementia, alongside consultations with people living with dementia and professionals working in the field. This informed the choice to adapt the Mindfulness Based Stress Reduction programme. Recommendations highlighted the importance of shorter practices, repetition, predictable session structures and a slower pace. We shortened the sessions from the usual two-and-a-half hours to two hours, with a fifteen-minute break in the middle.
Practices were briefer, familiar themes were repeated from week to week, and Lynn and I used clear language, visual prompts, and sensory experiences to support participation. We also created simple visual summaries of each session as reminders and prompts.
As teachers, Lynn and I learned to slow down. We allowed more time for transitions, gave participants space to respond in their own time, and created an atmosphere where there was no expectation to remember what had happened previously or to do anything perfectly. As far as possible, we inquired about what people were noticing now, rather than in the practice that just finished.
Connection and community
One of the unexpected joys of the course was the sense of connection that developed between participants. The fifteen-minute break in each session – complete with tea, coffee and biscuits – was much more than a refreshment break; it became an important part of the morning.
Participants shared experiences with one another and bonds began to form. There was a sense of solidarity in being alongside others who understood. Dementia can be isolating, both for the person living with the condition and for those who care for them. The opportunity to meet others facing similar experiences seemed to reduce that sense of isolation.
Participant feedback
One participant living with dementia told us:
“It’s helped me accept my dementia diagnosis.”
For me, that simple statement captures something profound. A diagnosis of dementia can bring fear, uncertainty and grief. Mindfulness cannot take those feelings away, but it may help people find a different relationship with them.
Others spoke about feeling calmer and more aware:
“I found a release from daily stress and worry. I can use the practices to reduce stress and to chill out a bit. I have been pleased with my achievement of being able to do it.”
“It made me more aware even doing routine things. Helped me to concentrate on occasions when I might have lost concentration, by learning how to notice small details.”
Several participants also appreciated the pace and atmosphere of the course:
“No judgements were made on whether or not we had any difficulties. The pace of the sessions was helpful. There was no rushing.”
Carers described benefits too:
“Increased awareness that we are all together and have to look after ourselves and each other. Making time to check-in and do a practice. And making the things we do together count.”
Another carer said:
“I am now able to recognise my feelings, the sensations and reactions. The breathing space is so helpful to come back to myself.”
That phrase, “come back to myself“, feels particularly significant. Caring for someone with dementia requires attention and emotional energy, and it can be easy for carers’ own needs to slip into the background. The mindfulness practices offered permission to care for themselves, as well as the person they supported.
Reflections
Dementia inevitably brings losses, and it would be unrealistic to pretend otherwise. Yet one of the things I learned from my mother, and again from this course, is that alongside those losses there remains an extraordinary capacity for connection, pleasure, curiosity and presence.
Mindfulness does not deny what is lost. But it helps us notice what is still here too. Watching participants appreciate flowers outside the window, notice the movement of clouds across the sky, support one another through difficult moments and find ways of meeting their experiences with greater kindness made me reflect that this work matters.
The course also reminded me that mindfulness is not simply an individual practice. It can help us connect more deeply with one another and, as one participant put it, “make the things we do together count.”
Looking ahead and acknowledgements
I hope that we can offer more courses like this. It was a genuinely collaborative endeavour. It grew from lived experience, research evidence, professional expertise, practical support and, most importantly, the willingness of people living with dementia and their carers to help us explore what mindfulness might offer in this context.
I would like to thank everyone who contributed to the development and delivery of the course, including Lynn Ley, Julia Fountain, Davina de Laszlo, Robert Marx, Rachel Garlick, Clara Strauss, Amy Dunn, Zoe Baty and Pretty Ipe for their support in making the course happen.
Most of all, I would like to thank the participants. Their openness, courage, humour and willingness to explore something new made the course a rich and moving experience for me, and for all of us involved.
Roles of the main contributors (not already mentioned)
Julia Fountain (Research & Development (PPI) Facilitator SPFT) who convenes the Dementia Consultation Group provided advice and facilitated a consultation with her group;
Davina de Laszlo (Public Health Specialist – Age and Dementia Friendly, Brighton & Hove Council) promoted the course to local organisations working with people living with dementia in Brighton & Hove;
Amy Dunn (SPFT Knowledge Services) reviewed the evidence of mindfulness programmes for people living with dementia and produced an evidence search report;
Clara Strauss (SPFT Professor of Clinical Psychology / SMC Co-Lead), Rachel Garlick (SMC Research Officer) with Joshua Moses, Maya Brook and Pretty Ipe (SPFT interns), did a deep dive into the relevant evidence, identified scales for evaluation and recommendations for adaptions to the eight-week mindfulness programme;
Zoe Baty and Pretty Ipe, supported with setting up, creating a dementia-friendly environment, preparing refreshments and helping sessions run smoothly, contributing enormously to the warm welcoming atmosphere of the course.