"Someone with dementia won’t remember what you say, but they’ll remember how you make them feel”

The Living Well with Dementia Group at ellenor in Kent was set up in May 2019 to offer those coping with the condition the chance to attend weekly support sessions over a 12-week period. Twenty-year-old Shania moved into her role as a Therapy Assistant at ellenor at the end of last year; here she explains what those sessions involve and how she and the team continue to support attendees even though Covid means that they meet in person.

The Living Well with Dementia sessions are designed as part of ellenor’s ongoing day-therapy service, to help those coping with early-to-mid-stage dementia. Around 12 people attend as part of each cohort and, after an individual assessment, the groups kick off with a variety of activities. In each session, we’ll offer memory-recall exercises around music and singing – we’ll sing something well-known and then see if it sparks off any recollections, for instance.

We’ll also do various art projects, to encourage fine-motor skills with lots of painting and drawing to encourage creativity. We also make full use of the hospice’s lovely garden because all the different smells, textures and wildlife there means it’s a very stimulating environment for everyone.

Some attendees may have been referred to the group by their GPs or via other local services such as Imago and Crossroads, but others come because their carers – most often their spouse or child – have found out about the session, and they come too. Not only does the group get to work together, but the carers also get valuable support.

Though everyone’s situation is different, there is a sense that no one is alone.  Once the 12 sessions are over, participants can continue to access any of ellenor’s other free Living Well services, such as our fitness or relaxation groups. If their condition has deteriorated over the 12 weeks, we can refer them on to outside agencies, or to our hospice at home team or inpatient unit if necessary.

Because of the Covid lockdown, we’ve been unable to have sessions in person since mid-March, but we’ve been working with the Alzheimer's and Dementia Support Services (ADSS) in Gravesend to offer support in a variety of other ways. For instance, we’ve been phoning group attendees on a weekly or monthly basis to see how they are and to find out from their carers if there are any respite needs. Chats will last around half an hour, longer if I need to refer someone on to ADSS and they’re always carried out by a team member who is trained to handle the anxieties that may arise.

We also offer zoom calls to those whose condition allows them to join us. Our Living Well team has been offering music therapy and a weekly chat on a Tuesday and many of the patients who came to our Dementia group have joined those, too. The mix of participants with different needs has really benefited everyone, and there’s the reassurance of seeing familiar faces on Zoom. It has been great to see how attendees living with Dementia have been able to absorb the technology side of things too, without seeming remotely fazed by it – something that’s surprised a lot of us. And of course, a real benefit of phone and Zoom contact is that you don’t have to confuse or cause anxiety to any participants by wearing a mask.

Whether I’m talking to dementia group patients or working with them in person, the priority is that they’re happy and calm. That’s what’s very rewarding about this work: you see real progress being made. Sometimes on a first meeting they’ll be very agitated or quiet – give it six weeks, though, and they’ll be far chattier and more relaxed.  For example, we have one patient who wouldn’t talk to me at all, but I ended up actually getting a sentence out of him, which was a goal achieved. And when we were offering art therapy, one lady who thought she couldn’t paint cried tears of happiness the end of the sessions when we looked through her work and she realised all she’d achieved – she was still able to contribute and make progress. 

Although the Living with Dementia group only got going in 2019, it’s already proving invaluable for all those involved, and the feedback from the carers has been excellent. I think there’s still a lot of misunderstanding around the nature of dementia and what it means for those living with it. I’ve never forgotten being told, “Someone with dementia may not remember what you said to them, but they’ll remember how you made them feel.” My job as part of the team here is to make all those who join in with our Living Well with Dementia group feel happy and calm, and to know just how valued they are.



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