Founder of the Community Interest Company For Brian CIC and an Associate of Dementia Pathfinders, I design and develop therapeutic interventions for people with dementia and their families. There are many creative interventions emerging for people living with dementia and their families and friends, however many remain illusive to families for a host of different reasons. For Brian CIC has been set up to address these reasons where possible, empower people living with dementia and their families to build sustainable and meaningful support. Living with dementia is a huge challenge, and living as well as you can with dementia is a human right.
Dementia is a complex condition which can affect people in many different ways (see articles on Communication, Perceptual disorders, Hallucinatinations & Delusions, Memory, Speech & Language Disorders, and other related topics) and there are a number of unusual dementias often affecting younger people (such as Frontotemporal Degeneration, prion disease, Pick’s Disease, Cortical Lewy Body Disease). There are some medications which can relieve the symptoms of some types of dementia, however the availability of therapeutic activities for people with progressive cognitive impairment is limited and varies a great deal across the country. Recent advances advances in the understanding of neuroplasticity, how neurones that “fire together, wire together”, and that loss of function occurs through “learned non-use”. Norman Doidge makes an extensive review of research in this area in the Brain’s way of Healing, Stories of Remarkable Recoveries and Discoveries. Some important criteria for rehabilitation are:
- an investment in the process, through understanding, through enjoyment
- graded steps
- avoiding fatigue
Counselling and Psychotherapy
I have many years experience counselling people with dementia and their families, in addition to people at risk of inherited dementias. I have an independent practice in London, and in association with Dementia Pathfinders we are looking at ways to develop a UK wide service. Do contact me if you would be interested in receiving counselling.
YOGA for people with a diagnosis of dementia and their families
An article about using yoga to enhance the wellbeing of people with dementia was published in the Journal of Dementia Care in 2015. You can read it here.
Yoga and meditation has an emerging evidence base to show that it benefits people physiologically, structurally, and emotionally. The potential of yoga to improve the quality of life for people with dementia is enormous. From my own clinical experience I have found:
- yoga increases a sense of wellbeing
- yoga improves balance and therefore will reduce the risk of falls
- yoga is an excellent intervention to manage the anxiety that arises from progressive cognitive impairment
- yoga can be modified to use with people who are largely confined to bed to maintain flexibility and facilitate personal care
- yoga is an excellent way to develop relationships with people in the advanced stages of dementia
- yoga can be practiced with a partner and this has proved very important for some couples living with the symptoms of dementia
I provide yoga therapy for individuals and couples in London and also provide sessional work in residential care homes. A yoga retreat for people with dementia and their families is in the pipleline, and one day workshops in London for health professionals, yoga teachers and family caregivers are available through Dementia Pathfinders
CYCLING for people with a diagnosis of dementia and their families
Cycle Training UK facilitated the opportunity for people at all stages of dementia to learn/relearn cycling skills with professional cycling instructors, establishing the huge potential for rehabilitation and wellbeing, taking part in inclusive activity, outdoors, and shaping the vision for Positive Spin to be a UK wide cycling ‘club’ for people living with dementia, their families and friends.
Cycle Training UK ran 5 projects very successfully, 3 on Clapham Common funded by Lambeth Council, 2 in Finsbury Park funded by Hackney Council, and this summer a new project in Lordship Rec funded by Haringey Council. CTUK has now sadly closed, however Positive Spin lives on through For Brian CIC and Bikeworks at Lee Valley Velopark in the Queen Elizabeth Olympic Park, we have proof of concept and considerable experience across a range of venues. Our vision of a UK wide cycling club for people living with dementia and their families and friends is ready to be taken to the next level.
Since Positive Spin was conceived 4 years ago, it has received superlative feedback from all participants, people with a diagnosis of dementia and their families.
The project requires expertise in understand the nature and symptoms in living with a diagnosis of dementia, and professional cycling instructors who have been trained to understand the needs of people with dementia. The project attracts people with dementia who do not agree to attend other services. The National Standard Outcomes for cycling ensure everyone is continually risk assessed without taking invalidating case history material on referral. People with dementia are able to experience a degree of independence, socialising and fun in the outdoors, improving motor and cognitive skills, on an equal footing with their carers and other participants. People come rain or shine.
On the 31st August we made a unique journey with 12 of our regular participants in Hackney. We travelled together by cycle from Finsbury Park to have a picnic in Springfield Park and back again. A video of the day can be seen here
We were shortlisted for two awards in our first year (2016): the National Transport Award for Excellence in Cycling and Walking and Behaviour change Campaign of the Year: Transforming London’s Streets. And we have had visitors to the project who have blogged about us
Some of our feedback:
Violet: “We were welcomed by lovely people. No matter whether you were white or black, pink or brown: there were very nice to us. I felt like I had known them for ever. I thought I would go to have a look, to see what other people were doing. But the people were so nice that I got on a bike and did the pedalling myself. Very enjoyable. I really enjoyed myself and I learned something I didn’t know”.
Richard: “They had all sort of clever bikes. I had not got on a bicycle since I was a young boy, but I tried a few. There were tricycles, and you could ride sitting down, either on your own or with somebody else who would help you with the pedalling. I did not think I could do it, but I did, and I was very happy I went. Thank you for telling me about it. Those nice people and the clever bikes – it is all to do with the clever cabling – make it possible for people like me to have new experiences in their later life.”
Simona Florio, Healthy Living Club at Lingham Court: “When Richard and Violet went off from the Club in the morning they were a bit nervous, but their sense of anticipation and excitement was palpable. That – the fact that they were to participate in an initiative that aroused their sense of adventure – felt like a good thing in itself. But them coming back, with their faces glowing and so keen to tell the rest of us what they had been up to, was even more delightful to see: what they had been up to had made them feel good and they had felt special.”
Claire Wheeler, Dementia Advisor Alzheimer’s Society: “As a dementia advisor I must admit to having been somewhat sceptical about the idea of Positive Spin – cycles and people with dementia not immediately striking me as being an altogether happy combination. I am, however, now a convert!!
A week after having had his first go on a bike through Positive Spin I met with Granville. He was accompanied by his daughter. Granville is a lovely man – quiet and contained – who doesn’t often join in conversation and very rarely initiates it. But when his daughter mentioned the bike ride, Granville’s face lit up and he interrupted her to tell me about how when he was a boy he had ridden from end to end of the island of Barbados. Granville was clearly delighted at being able to get back on wheels and it was great to learn of an aspect of his growing up that we had not heard of before. Positive Spin really does tick all the boxes!!”
Kaye Medcalfe, Hackney Carers, concludes in his article about Positive Spin: “Swiftly, the groups conversation turns to plans for the future, they want to cycle on the roads next and are looking forward to yoga sessions, and mindfulness workshops. It is clear that despite the difficulties dementia brings, diagnosis isn’t the end, there is lots of laughter, sunshine and fun left to be had”.
And some participants living with young onset dementia”:
“Since April 20th my husband, who has Early onset Alzheimer’s, and I have been attending Positive Spin in Finsbury park, nearly every week, and have thoroughly enjoyed it. The trainers are helpful and patient and it’s fun to try out different bikes. I didn’t expect to enjoy this activity so much but I’ve found it’s not only good exercise for Roger but for me too, and feels like a break for me as I ‘m not totally responsible for him. We have also made progress from cycling around the basketball court to trips down the Parkland walk and to Clissold park and back. We have cycled in wind and rain, and would like to continue this through the winter, but have been told it’s finishing next week.
If you know anything about people with Dementia, you will know how important continuity and routine is for them; Roger has great difficulty with remembering what day it is, but when I tell him it’s Wednesday, he knows it’s cycling and looks forward to it. he even has some idea of the route we take to get there! Also, if you know anything about unpaid Carers of people with Dementia, you will know how important their well-being is, and this activity gives me more energy and patience to look after my husband and my mother who lives with us. Another activity we take part in on a regular basis is brisk walking, which we continue through the winter, whatever the weather, so we’d like to continue cycling too!”
“Ian and I thoroughly enjoy Positive Spin at Finsbury park and are sad to know the project will not continue over the winter. As you know Ian has Young Onset Dementia and over the last six months his Alzheimer’s has progressed and now needs my help with most things including personal care. However Cycling is the only activity Ian does not require assistance from me. Positive Spin has given Ian a sense to be independent and confident enough to cycle regularly the whole distance and return of Parkland Walk. Most of all he is very happy when he is on a bike. We have both benefitted immensely from the exercise we get cycling regularly each week. If at all possible we could request Positive Spin to continue over the winter, we would be extremely grateful. A break from cycling for a long period would set Ian back in terms of exercise and independence. We look forward to signing up to the next session of Positive Spin.
I also would like to take this opportunity to thank all of the Trainers of the Positive Spin team for their help and support. Many thanks for giving us the opportunity to enjoy cycling again”.