It all started in October 2019 at the Big Conversations event in Nottingham Racecourse. It was an event led by people living with dementia planning for it over eight months. It was a second event in its series. Around 100 people attended, mostly people living with dementia and their families. There the project manager, Dr Jane Rowley, announced the start of the #1000MilesWalk initiative. Virgin Pulse donated 100 step counters to Trent Dementia to help people living with dementia and their supporters and families to become more active. Suzanne, our project worker, helped us get this donation and it has proved a really popular initiative
I started to talk with local organisations like Best Foot Forward project in Age UK Nottingham, Notts Guided Walks, and Ramblers to see how we could join hands and cooperate together to help people living with dementia and their families and supporters form walking groups in Nottingham. I also undertook training with Ramblers’ to learn more about leading walks. I started to feel more confident after the training to lead walks with people living with dementia and their families and supporters. Our approach is to support people to run their own groups and my role is to help organise and lead walks until the group has sufficient members to run itself. Covid-19 has delayed this process but, we are working online to promote physical activity: https://www.trentdementia.org.uk/projects/walking-groups/.
A meta-analysis and systematic review conducted by Du et al (2018)i showed that physical activity might improve the cognitive function of Alzheimer’s disease or slow down the decline of cognition. Another systematic review and meta-analysis (Li et al, 2019)ii showed that exercise programmes might help with cognition and activities of daily living in people living with dementia. Walking five miles per week might protect the brain structure over 10 years in people with Alzheimer’s disease and mild cognitive impairment, especially in areas of the brain’s key memory and learning centres,” says Dr Cyrus Raji (MDedge Neurology, 2011)iii.
Trent Dementia charity decided to keep in contact with people online to stay healthy and start or continue their physical activities, be it gardening, walking in place, on treadmill, walking around the house, in the park, around neighbourhood, etc. Virgin Pulse step counters were a great help. We also received a small grant from The Thomas Farr to purchase trackers and maps for people living with dementia and their families.
We started promoting our project on social media. Wewe decided to initiate a small walking group open to people living with dementia and their families and supporters to come and have an half an hour walk around the Lake in Wollaton Park, Nottingham. We send out Virgin Pulse step counters to people living with dementia and their families and asked them if they would like to send us the number of steps that they take each time they go for a walk. We register their steps for them online and then send it to the Country Walking magazine and will send for #1000Miles Walk medal when they reach 1000 miles. Just by walking around half an hour each day (roughly 2.5 miles a day), one can finish 1000 miles in a year.
We had this group run for a few weeks before we decided to shut it down because of coronavirus and social distancing. At the time of the lock down, we decided to support our group members by having a Wednesday online Zoom meeting and start making videos of the pictures they take when they go out for a walk. We also run several other groups online and in each of them we promot physical activity and encourage gardening, walking, taking pictures of outdoors, and exercises. We also sent seeds and bedding plants through Bring Joy Foundation small grant and they are happily attending to their plants now. We also devised a survey to ask people how else we could support them to start or continue a physical activity of their choice. We sent the survey to DEEP network, GP surgeries, Alzheimer’s Society, Carers in Hucknall and other organisations to reach as wide an audience as possible. Some of the people who answered our survey expressed an interest to have group physical activity sessions with a trainer. So, we applied for funding and last week we received a small grant from Robin Hood Fund to arrange these online sessions for people living with dementia and their families and supporters. We use online films of walks around the world and I developed a training in making videos for people to use their own photos or film their daily exercise using their phones.
We will not allow the lockdown to stop us from supporting people living with dementia in their walking endeavours and in doing physical activities. Last Tuesday, we had a hand jive followed by a hand massage session with people living with dementia and their families in our Tuesday’s Coffee & Chat meeting. They laughed and took part in the activity with good spirits.
I think one of the mottos of Trent Dementia charity is: ‘We NEVER give up!’
References
i Du, Z., Li, Y., Li, J., Zhou, C., Li, F., & Yang, X. (2018). Physical activity can improve cognition in patients with Alzheimer's disease: a systematic review and meta-analysis of randomized controlled trials. Clinical interventions in aging, 13, 1593–1603. https://doi.org/10.2147/CIA.S169565
ii Li, X., Guo, R., Wei, Z., Jia, J., & Wei, C. (2019). Effectiveness of Exercise Programs on Patients with Dementia: A Systematic Review and Meta-Analysis of Randomized Controlled Trials. BioMed research international, 2019, 2308475. https://doi.org/10.1155/2019/2308475
iii MDedge Neurology. (2011). Walking slows progression of Alzheimer’s disease. Neurology reviews, 19(1): 23. https://www.mdedge.com/neurology/article/72791/alzheimers-cognition/walking-slows-progression-alzheimers-disease#:~:text=%E2%80%9CWe%20found%20that%20walking%20five,over%20five%20years.%E2%80%9D%20Dr.
I often reflect on the positive impact of being outdoors and connecting with nature has on me, particularly as this year I have moved home to live in a rural community with many opportunities to experience a range of outdoor activities. During walk with my dog last winter, after a very busy day, I stopped for a while to feel the late winter sun on my face and delighted in the accompanying gentle breeze. This moment wasn’t about the activity of dog walking but more about how the whole experience made me feel. I reflected on how incomplete my life would be if I was unable to have the freedom or ability to experience being outdoors. These thoughts moved me so over the past few months of this year I have been working with Dementia Adventure, Rutland County Council and Rutland Wildlife Trust Centre to develop a project that aim to enable people living with dementia and their family carers to share time in nature.
We have been committed to ensuring that this project takes the time to ensure that carers and the person living with dementia are involved in its development. The name of the project - Time in Nature - was the title chosen by the group. Whilst we had an idea of what might or might not work during the session, we didn’t want to assume that it is what group participants would want. So to prepare we spent a morning sharing and discussing ideas, some of which we managed to build into the session itinerary. Interests expressed were many and varied; including dry stone walling, building badger boxes and bird nests and generally helping to maintain the woodland. I felt personally enthused at some of their ideas and that I may learn some new skills myself.
After this productive co-production planning day we launched the first Time in Nature activity group on the 9th of October at Rutland Wildlife Trust Volunteer Centre. We anticipated a slow uptake and low numbers initially, perhaps four or five couples? To our great pleasure and surprise we welcomed 17 participants each dressed to experience the great outdoors. My colleague Kath Pyke of Dementia Adventure and myself introduced ourselves and the purpose of the group. Following a welcome of coffee and biscuits we presented a table displaying a variety of interesting objects, such as, an owls skull, conkers, leaves and a variety of foliage, all with different textures and smells. Participants were encouraged to handle the objects and conversation was facilitated. Even those who had difficulty communicating verbally visibly enjoyed the experience.
Part of my role as an Admiral Nurse is supporting and maintaining relationships. Spousal couples often experience difficulty communicating with each other when words are lost. As the relationship changes and care needs emerge for one of the couple so there are changes where one role develops into that of care giver. The risk is that the interaction then changes into one which is merely task driven. One couple I was supporting attended the group; they were experiencing difficulties in communicating with each other which left the spouse of the person with dementia feeling isolated and lonely. During the Time in Nature session I worked with this couple and supported them to share the experience of feeling and smelling the items on the table. The person with dementia started to use words her spouse had not heard for a long time; “beautiful” “lovely” “look at that“ - the words weren’t lost she just needed a little help to find them.
After the table top session we split into smaller groups and, supported by a crew of enthusiastic volunteers from the Wildlife Trust, donned binoculars in the observatory to look over Rutland waters wildlife. Some headed out to ramble along the hedgerows with lots of chatter, laughter and knowledge shared. Before we broke for lunch participants had the opportunity to make a posy from the items on the table to take home with them as a reminder of the day and continue conversations.
Here are a few quotes from the day:
“I don’t usually get chance to walk in fields anymore only trips to town; reminds me of when I was young walking on the Yorkshire Moors “
“I’ve really enjoyed the comradery”
“Really enjoyed using the telescope “
“Nice to be outside”
J.A.N. Corsellis and his colleagues are one of the many contemporary heroes in the field of neuroscience. Amongst their many contributions there’s one that stands out the most. They have helped to promote our understanding of trauma-related neurodegeneration and made us appreciate the thin line between a robust and healthy brain, and a fragile and injured brain. Today, the legacy of Dr. Corsellis, his Corsellis Collection of Brains, which is one of the largest in the world and the largest in Europe, is used to assist epilepsy research in the UK. Surely, despite its main objective, this project will have its connections and contributions to other diseases of the brain and nervous system. Praise the interdisciplinary nature of science!
In 1973, Corsellis and colleagues investigated the brains of 15 retired boxers, identifying cerebral changes that have been shown to underlie the increased risk of developing dementia. Today, it is known as chronic traumatic encephalopathy (CTE) or popularly referred to as dementia pugilistica. In the early 20th century a more derisive and biased term has been initially used to describe boxers whose heads had gone through a bit of trouble – the so-called punch-drunk syndrome. The name really speaks for itself, but today it comprises a wide variety of victims, ranging from professional athletes to war veterans to cyclists who couldn’t care less about wearing a helmet. One of the prevailing theories that explains the pathophysiological manifestation of trauma-related neurodegeneration is the progressive neurodegenerative tauopathy, which is the aggregation of destructive tau protein seen in many other forms of neurodegenerative disease such as Alzheimer’s. However, the evidence is not certain and more research is required. On the other hand, what is certain is that traumatic brain injuries are long-term, dormant threats to life and many people are unaware that their concussion might be a silent killer in the making. In the US alone, there are approximately 5.3 million people with TBI-associated disabilities (traumatic brain injury) and this number will continue to grow if we don’t start to appreciate the severity of this condition.
Fortunately, CTE and its consequent detrimental effect on the brain, namely the possibility of dementia, are increasingly becoming a worldwide concern because of its growing public attention. Its rising awareness is especially evident from the real experiences told by athletes and shared by ordinary people on social networks. The late boxing legend Muhammad Ali is one notable example, though he never allegedly admitted it to be true. Nevertheless, the likelihood that he contracted Parkinson’s disease after repetitive TBI is very high. A 2015 dramatization “Concussion” based on Dr. Bennet Omalu’s investigation of CTE in American football players is yet another piece of evidence that communicates the gravity of CTE research and the need for its awareness. Certainly there are other cases, which deserve to be mentioned, but there’s one case that I would like to go over because it relates to me on a personal level.
Not so long ago I came across a YouTube clip of a former ice hockey player (which in fact served as my inspiration to blog about this topic), with which I have connected emotionally through my long-standing relationship with ice hockey. The link to the video is down below if you’re interested. Daniel Carcillo is a former NHL player who suffers from CTE. He has put his life story out, sharing his path to rehabilitation and revealing what it means to live with this condition. His story is highly personal to me because I am an ice hockey player myself and I have a close friend who has had several on-ice accidents involving his head. I am lucky that when I played junior hockey the only injury I’ve suffered was a broken thumb. It’s a completely different story with my friend whose concussions might lead to bigger problems. He’s only 21 years old and understandably it’s not something that he worries about. In fact, if I have stayed in Latvia to continue my ice hockey career instead of joining university I would have been most likely oblivious as well and wouldn’t know any better about the bigger picture of getting hit in the head. I showed the video to my friend and he instantly became unsettled when he heard Carcillo say: “Old-timers with dementia, Parkinson’s disease, you’re 80% more likely to contract these diseases if you have three or more concussions.”
But there’s hope and now my friend knows it. The neat thing about Carcillo and other athletes who decided to tell the truth about CTE is that thanks to them sports organizations are now aiming to educate and make people more aware about the consequences of repetitive TBI. It’s not that before it was different, but now this information has become more accessible to a layperson and change is finally taking place. New regulations are being introduced in contact sports and more emphasis is being directed towards human health and safety. Hopefully, with greater recognition of CTE as an underlying cause of dementia, clinical research will in turn receive more endorsement to try and fight this disease in its earliest stages. Even if the unpredictability and inevitability of Rota Fortunae exists, the closer we get to the truth, the greater our odds are, and raising awareness might just be one of the first things we can do to get there.
CTE Awareness Foundation: http://stopcte.org/
The link to the video: https://www.youtube.com/watch?v=K4BySsH6FgQ
References:
Castellani RJ and Perry G, Dementia Pugilistica Revisited, J Alzheimer’s Dis. 2017; 60(4): 1209–1221. Doi: 10.3233/JAD-170669.
Smith DH, Johnson VE and Stewart W, Chronic neuropathologies of single and repetitive TBI: substrates of dementia? Nat Rev Neurol. 2013 April; 9(4): 211–221. Doi: 10.1038/nrneurol.2013.29.
https://www.researchgate.net/publication/18439689_The_aftermath_of_boxing
https://www.epilepsyresearch.org.uk/research_portfolio/new-purpose-for-historic-epilepsy-brain-collection/
People have lots of reasons for doing exercise. Some people want to lose weight, some people want to gain weight. Moderate exercise could be very important for people with dementia.
Exercise, and any form of physical activity, can also improve a person’s mood, self-esteem and opportunities for social interaction (Sharma, Madaan and Petty 2006). This is because exercise releases hormones which make a person feel happy. Exercise improves the function of your heart and lungs which in turn improves the health of your brain.
In fact, exercise might even stimulate 'neurogenesis': this is when parts of your brain are renewed. Scientists in Canada have found that regular exercise can increase the size of areas of the brain that is involved with memory and learning (Lourenco et al 2019). This happens because more energy is sent to the brain during exercise which means that the brain has more energy to go about everything it needs to do.
However, a group of scientists from the University of Oxford have argued that exercise is bad for people with dementia. They found that there were a small decrease in scores on the Alzheimer’s disease Assessment Scale in people who did exercise when compared to those who did no exercise (Lamb et al 2018). These differences were explained as being possible to be due to several things other than exercise. Scientists haven’t determined that exercise is bad for you. There is more evidence for moderate exercise having positive effects in people with dementia.
A list of appropriate exercises for people with dementia is available from Alzheimer’s Society; this list includes walking, gardening and dancing. The Department of Health recommends 150 minutes of ‘moderately strenuous physical activity’ per week. This means 30 minutes of activity per day, five days of a week. This can be broken up into shorter sessions throughout the day, with each session lasting a minimum of 10 minutes. For example, it could be a 15-minute walk to the local shops in the morning, and then housework or gardening tasks in the afternoon.
If you’re worried about anything that could affect your health, please be sure to consult a medical professional. If you do want to start exercising, make it fun and social by doing it with friends, family or carers.
References
Lamb, S. E., Sheehan, B., Atherton, N., Nichols, V., Collins, H., Mistry, D., Dosanjh, S., Slowther, A. M., Khan, I., Petrou, S., Lall, R., DAPA Trial Investigators (2018). Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial. BMJ (Clinical research ed.), 361, k1675. doi:10.1136/bmj.k1675
Lourenco, M. V, Frozza, R. L., de Freitas, G. B., Zhang, H., Kincheski, G. C., Ribeiro, F. C., … De Felice, F. G. (2019). Exercise-linked FNDC5/irisin rescues synaptic plasticity and memory defects in Alzheimer’s models. Nature Medicine, 25(1), 165–175. doi.org/10.1038/s41591-018-0275-4
Sharma, A., Madaan, V., & Petty, F. D. (2006). Exercise for mental health. Primary care companion to the Journal of clinical psychiatry, 8(2), 106. doi.org/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1470658/
Dear Tom,
My Colleague, and Director of Dementia Services for my company, Juliet Holt Klinger, contacted me today with a link to your article on Swimming and Patients who have a Diagnosis of Dementia (click here to see the article: https://www.ncbi.nlm.nih.gov/pubmed/29600876). I am currently a Recreational Therapist that works with patients with dementia and have one specific patient that is in the early moderate stage and has been asking about going swimming. I am very interested in reading what your research discovered, I can only find abstracts of the research on the internet. Do you have any suggestions on where to look or reach out to, to find places in the States that offer swimming to Patients living with Dementia. Or do you have any suggestions on what to ask of places with pools to gain access to leading a swimming session for this person myself?
Thank you in advance for your time and Knowledge.
Sincerely,
Elizabeth Kozlowski, CTRS
**********************************************************
Dear Elizabeth
Thank you for your enquiry. I have attached a copy of our paper so that you can read it in full if you wish: https://www.ncbi.nlm.nih.gov/pubmed/29600876
I am sorry but I don’t know anything about any dementia friendly swimming initiatives in the US. I would be surprised if there isn’t somebody thinking about it somewhere though. You could ask the Alzheimer’s Association if they have any information or any plans in this regard.
Our project teamed up with a national initiative that was being delivered through local authorities and public swimming pools, though none of these things would be necessary. It would be entirely possible to set up dementia friendly swimming with a private facility or leisure club. What we did find though was the thing that made the biggest difference was having someone who was really committed to the project and also had the skills to persuade people with dementia and their carers to come along. This was Kris, the Alzheimer’s Society worker. She was brilliant. Before she came on the scene, we had everything else – nice pools, dedicated sessional time – but no people with dementia in the water. I also think the fact we had two student researchers (Mary and Tanya) doing their project and therefore there was interest from the University also helped.
Comparing swimming to other leisure activities that we have researched, I would say that there is a higher threshold to cross before people will join in. Therefore it takes a real push and some commitment to get started and also to keep going. So, you probably need a real ally at the pool (maybe someone who has a close relative with dementia), someone to encourage participants to attend and to get into the water, dedicated time and space in the pool, and somewhere to hang out as a group afterwards (for English people, that is tea and cake in the pool’s café). The session needs to run weekly and regularly without too many gaps. Thought needs to be given to how people will get to and from the pool. There probably needs to be a higher proportion of helpers to participants than in a normal group, though this would be so for any group of people living with disabilities.
That’s about as much as I know!
Best wishes
Tom
Tom Dening
Professor of Dementia Research
Institute of Mental Health
University of Nottingham
Dance Movement Psychotherapy was first founded by Marian Chace in the 1920s and is widely used within schools, the health sector, various charities and organisations. This type of therapy is catered for all ages from infancy to the elderly.
Dance Movement Psychotherapy is the use of therapeutic movement and dance in which an individual or a group of people can engage creatively to helped further their emotional, social and physical integration.
Not only does Dance Movement Psychotherapy exercise and awaken the body but it also awakens an individual’s thought process through the exploration of movement. For a dementia patient a certain movement or expression can trigger a memory or image which leads the individual into a reminiscence stage, allowing them to communicate this across when engaging within Dance Movement Psychotherapy.
Since 2014 I began my journey as a Dance Movement Psychotherapist and have had opportunities to offer this type of therapy to individuals living with dementia. I created and developed a programme called “Dance for Dementia” within the NHS which allows dementia patients to freely explore expressive movement and imagery within the space, or for those with limited mobility are able to engage when moving in a chair.
I have worked closely with an individual who struggled to verbally communicate. However, when I introduced movement into our one- to-ones I discovered that this individual enjoyed knitting and repeatedly introduced this movement into our sessions. Bearing this mind, I mirrored this patient’s movement so this individual could see that I was supporting and guiding the patient’s movement into an improvised dance.
Here, a transferential relationship was developed between both therapist and patient which helped this individual to reminisce and gain bodily awareness when communicating this movement across to others.
Dance Movement Psychotherapy as a practice is continuing to develop within the aforementioned areas and the potential for it to expand into other sectors, and for its implementation to benefit an ever growing array of patients is an exciting prospect.
I wrote about apathy for DDD in 2015* but the topic is still important and even featured in today’s Daily Mail!** This leads me to pick up the quill again:
Apathy is a common symptom throughout the course of dementia. It can also be associated with many other types of brain disease. By its nature it can be easily overlooked and hence its importance has been underestimated until recently. People have perhaps been more interested in looking at more visible changes in behaviour, such as agitation or aggressive behaviour.
A recent paper, from researchers in Holland, is quite correct to make a distinction between apathy and depression. The two may occur at the same time, so that apathy is often a symptom of being depressed and people with apathy can of course become depressed. But they have a different neurological basis and different courses. For example, apathy does not respond especially well to treatment with antidepressant medication.
The Dutch study was conducted with nursing home residents and therefore the authors were interested in the effects of apathy on mortality. However, our research and that of others shows that apathy can arise any time during the course of dementia. It’s not just a problem with dementia in care homes.
Apathy is extraordinarily frustrating for families and carers, since it appears that the person with dementia is perfectly able to do things (make a cup of tea, turn the TV on and off, or change their clothing) but instead they just sit there and do….nothing or very little. Often, carers will interpret this as being due to wilfulness or to gain attention, but actually the person has a problem with initiating actions. In technical language, they have a problem with executive functioning – or, as I often explain this to relatives, it’s like the engine just won’t start.
My colleague, Rianne van der Linde, did her PhD looking at the course of behaviour changes in dementia. We looked both at the published literature and also data from the MRC funded Cognitive Function and Ageing Study (CFAS) and we were struck by just how prevalent and persistent apathy was. For example, once apathy had occurred, two-thirds of people still had it 12 months later. And we found that, even with a sample of people living mainly in the community that people with apathy were 3 times more likely to die than those who didn’t have the symptom. That’s certainly consistent with the findings in the paper by Johanna Nijsten and her colleagues.
What’s the mechanism by which apathy leads to death? One factor is that apathy reflects damage to the fronto-striatal circuits in the brain, so if you have apathy and dementia, then you have evidence of brain damage in different areas of the brain. This is borne out by people with apathy and dementia having more severe cognitive and more severe functional impairment than those who don’t have apathy. The second factor is that if you are apathetic, you don’t move around as much so you are at more risk from the consequences of being sedentary, e.g. losing mobility, developing pressure areas, urinary and respiratory infections, circulatory problems, and so forth. The combination of these things is likely to shorten your life expectancy.
In summary, death results from having (a) more extensive brain damage and (b) being sedentary and suffering the consequences. That suggests to me that someone should do a clinical trial of measures to make people with apathy more active, or maybe they are already planning to do so.
*Link to Tom's previous blog on apathy: https://idea.nottingham.ac.uk/blogs/posts/apathy
**Link to the Mail article: http://www.dailymail.co.uk/health/article-4773340/Study-finds-elderly-life-care-homes.html
Access to the outdoors is known to have a positive impact on wellbeing, due to such benefits as exercise and activity as well as the promotion of social inclusion and interaction, however, for people with dementia, this access is often denied. The reasons for this are wide ranging including disorientation and a lack of appropriate support to compensate for this, inadequate public transport provision and the negative and stigmatising attitudes of the wider community.
A similar exclusion from outdoor spaces is experienced by people with dementia living in care homes. For in spite of the widespread availability of gardens and other outdoor spaces within these settings, my experiences as nurse suggest that these outdoor spaces are rarely used by residents. While inadequacies in dementia care are often attributed to corresponding inadequacies in the front line workforce, wider factors are also at play in this exclusion. These include the inappropriate design of outdoor spaces and the lack of availability of staff to facilitate access to these spaces.
Also important are care home cultures which place an overriding focus on minimising levels of risk amongst the resident group. Thus having a resident ‘wandering off’ on their own outside or falling over and hurting themselves are seen as incidents to be avoided at all costs, with care home staff having to account for and justify their actions should such incidents happen on their shift. Consequently, in their negotiation of the fine line between care on one hand and control on the other, due to the wish of care home staff to avoid such events, the emphasis is normally placed on the latter. This can lead to overcautious and task centred approach to care and a subsequent ‘institutionalisation’ of more vulnerable residents with a focus on ensuring their physical safety rather than on their individual social and psychological needs and aspirations. This is exacerbated by the fact that people with dementia are not always able to fully express these needs as well as by high levels of staff turnover and the increasing scale of care homes meaning that staff often do not gain familiarity with each resident and be ‘person centred’ in their practice. In view of these multiple barriers to outdoor access, measures aimed at overcoming them should adopt a similarly eclectic approach. These measures could include the incorporation within each persons care plan a consideration of their need for outdoor access and how this will be achieved and which potentially permits an acceptable level of risk in this achievement. ‘Dementia friendly’ spaces and support to access them also need to be available both for people living in care homes as well as in the wider community. While on a wider level, government policy and legislation should recognise that access to the outdoors for people with dementia is a basic human right and key to the promotion of their social inclusion.
Follow this link to find out more: http://www.tandfonline.com/doi/full/10.1080/13607863.2016.1222351
Our expectations of old age are increasingly overshadowed by the probability of progressive memory loss. The issues thrown up by this phenomenon have implications for scholars in the Arts and Humanities, as well as in the Social Sciences and Medicine. The Dementia, Arts and Wellbeing Network has been funded by the Arts & Humanities Research Council. The purpose is to generate and communicate wider knowledge and appreciation of innovations in the arts and dementia. DA&WN will address one facet of dementia where the interests of many academics from different disciplines converge: the use of the visual and performing arts to promote wellbeing in dementia.
Much existing knowledge is tacit and lies with the artists and individuals affected by dementia, so DA&WN will help to draw this out, by bringing the complementary perspectives of people with mild to moderate dementia together with practising artists and academic researchers from a range of disciplines to advance knowledge about wellbeing for people living in the community with this condition through the visual and performing arts. People – including those with a diagnosis of dementia – clearly enjoy making music, listening to music, singing, dancing, painting or visiting galleries and museums, according to their tastes. The film 'Alive Inside' (YouTube and Netflix) illustrates how individuals who appeared to be uncommunicative can respond to art - music in this instance, in an astonishing way.
The potential benefits to be gained from the widespread adoption of arts interventions that have such positive effects on individuals with dementia make the topic worthy of academic attention. DA&WN will:
- bring together for the first time academics from the Arts, Humanities, Social Sciences and Medicine to explore the issue of wellbeing in dementia from a wide range of perspectives;
- increase knowledge and understanding of the wellbeing of people with mild to moderate dementia living in the community, and of their family carers;
- provide opportunities for artists to meet with people with dementia and academics in order to develop new approaches;
- help to underpin existing approaches to the arts in dementia by generating research-based evidence; and
- foster co-production (between people with dementia, arts practitioners and academics) of both academic and artistic works targeted at a wide audience
These objectives are to be achieved by means of four, two-day workshops in Nottingham, each focusing on a different art form. The first workshop, on Dance and Dementia, was held on October 3-4, 2016. Fergus Early of Green Candle Dance Company, London, and Dr Richard Coaten, a dance and movement psychotherapist in South West Yorkshire Partnership NHS Foundation Trust, shared their skills with a group which included academics, artists and people living with dementia. Evening entertainment was a screening of videos selected by Richard, who co-ordinates a website of resources at http://www.dancedementiahub.co.uk. Day two saw intense activity in working groups around knowledge translation, research and the development of engagement and training activities for more dancers to work in the field of dementia. Outputs from the event and related materials can be found at www.nottingham.ac.uk/dawn.
Gosh! This month’s exciting news is that Growing Support’s work enabling people with dementia to stay socially and physically active has received national recognition. We have been selected as one of the Observer’s 50 New Radicals for 2016.
Run in partnership with Nesta, an innovation charity working to help bring new ideas to life, the 50 New Radicals is a list of innovative people doing radical and useful things to make Britain a better place.
I’m thrilled that a national newspaper has even noticed we exist, never mind judging our work to have the potential to change the UK for the better! I’m also very proud that Growing Support has been placed alongside previous New Radicals such as Care Charts, Dementia Adventure and Sporting Memories who are all doing great work to improve the quality of care for people living with dementia.
However, part of me feels a little downhearted that society is still at the stage when something as simple as enabling people with dementia to take part in sociable gardening activities and stay connected with their community is considered radical.
To me, spending time outdoors, being with friends and sharing the enjoyment of working alongside one another is such a natural part of life its sometimes hard to understand why it isn’t already considered an essential component of care.
One day I hope it will be and Growing Support won’t be needed anymore. Until that day I’m grateful for opportunities like this to raise awareness, not only of the challenges faced by people with dementia in their everyday life, but also how the community can work together to help overcome them.
For now, it’s time to head off to the awards reception. I’m going to enjoy the moment and put off worrying about how to change the world until tomorrow!
See the full list of 50 New Radicals here: https://www.theguardian.com/theobserver/series/new-radicals-2016
