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
So nine years ago I took up yoga. Best thing I ever did.
Why do I go to yoga? I never done yoga before dementia. I admired people who done yoga, I always thought they looked very elegant and it sounded very worthwhile but I was too busy getting on with life, taking care of my dad who had dementia and going out to work. And doing the mundane family things that one does. Then I got dementia and suddenly life took a different meaning on to me and I needed to do things that were going to be good for my health. I listened to the government and they said exercise was good for you.
So nine years ago I took up yoga, best thing I ever did. I done it for the exercise but oh my goodness me, I got so much more from it. And when I started to have balance issues and to start falling and going toward the sides. We were concentrating on core work and that helped my balance issues. My yoga teacher was very aware of my dementia because I told them, as indeed were my yoga buddies, and they were very keen in helping me and assisting me, all that they could. So over the years we’ve been working very, very consciously on my balance issues and I believe that it’s been a tremendous help to me.
And then when I started to develop respiratory problems, yoga came to the fore again. My yoga teacher, along with the class – we started doing Ujjayi breath work and opening up heart and lung movements, which helped keep my lungs wide open, and it, I don’t know, it was exercises for my lungs. It was fantastic. And so were my yoga buddies. They’ve all put up with my coughing and my wheezing over the last two or three years. They’ve been concerned – as your pals are. They been very helpful with various suggestions, which I’ve dutifully tried. But most importantly I feel part of a yoga family.
I love going to my yoga: it helps in so many different levels for me. I’m fortunate my yoga buddies welcomed me. They very rarely used the big D word: Dementia. It’s all about what works, what we need, what we need to do today. But most importantly, we claim our mat, we be all we can be that day. We are grateful for that day. It’s just a whole new way of life for me.
An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/agnes-4-nottingham-uni
Natural England have just published an interesting new report: ‘Is it nice outside?’. The report investigates how engagement with nature and the great outdoors can be improved for the benefit of people living with dementia.
There were a couple of findings that resonate particularly strongly with what we have found in our own work.
The first is that only 20% of people living with dementia who were consulted consider that their condition is a barrier to using outdoor spaces. In contrast, 83% of their carers believe that dementia limits the person’s ability.
This mirrors the cautious view and risk averse culture we find in many care settings. Our first job is often to reassure care staff that people living with dementia can work safely in the garden.
Of course we totally understand carers’ concerns. Gardening is not risk free and we regularly frighten ourselves by running through all the things that could go wrong to make sure we have adequate safeguards in place. However, we argue that it is a much bigger risk for people with dementia to spend too much time indoors, being inactive and cut off from the sensory benefits of connecting with nature. We believe in a positive attitude to risk. With proper risk management and lots of support from trained volunteers we have found that people with dementia can be active in the garden very safely.
The second is that some urban green spaces, such as community gardens, are underused by people with dementia.
Growing Support recently consulted 28 community gardens in Bristol and found that only one had previously supported people with dementia. Garden staff were concerned that they might not have sufficient resource to provide the necessary level of support. People with dementia were worried about how they would get to the garden and if they would have someone to help them to work there.
By addressing these concerns we were able to set up a thriving gardening group for people with dementia in a community allotment. Allotment staff learned how to break down jobs into smaller, more manageable tasks and we introduced light, long handled tools that enable gardening from a wheelchair. A local day service provided transport and support. Very quickly the group were integrated into the allotment routine, producing food for the community kitchen and joining in with all the activities.
Other studies have shown that access to the natural environment has health and wellbeing benefits for people living with dementia including reduced stress, agitation and depression as well as improved self-esteem and sense of belonging.
We look forward to the day when nobody sees dementia as a barrier to enjoying the outdoors and accessing these benefits.
Setting out to write a blog post about creativity begins as a rather meta process: a piece of creative writing on what it might mean to be creative. It’s easy to be seduced by the Romantic idea of creativity as being ‘lost in the moment’. Of a revelation sweeping in, sometimes in the most unlikely time and place, and the artist in thrall, playing conduit to a tide of creative power. Captive to their own momentum and ‘flow’, conducted by a spiritual muse, the artist rides the wave, unaware of anything other than their words, notes or brush strokes. (Needless to say, I am not in the blissful throes of any such force writing this.)
Our language for describing creativity safeguards this notion of it as something lofty and unattainable. We talk about inspiration ‘striking’, as if hurled as a lightning bolt gift from Olympus. Hand delivered by Hermes. Sponsored by Zeus. Esteeming the creative process in this way elevates it, presupposes it is out of reach to all but a few gifted individuals with artistic credentials, able to host dialogue with the stars. However, this isn’t true. We all have the potential to be creative. Expression is not the sole preserve of painters, or poets or choreographers. And who are these people anyway? Are these titles self-proclaimed, defined by an industry? Earned through publication, curation or payment? We can all produce art. Creativity is surely a democratic leveller across the human experience – whether cave paintings on a craggy rock, wobbly crayon lines displayed proudly on a kitchen fridge, or a Turner prize winner hanging in the Tate. Neither is creativity limited purely to the arts. Science, technology and business are all disciplines similarly capable of innovation and illumination. Creativity should be drawn as a universal possibility, achievable by all people. And for that matter, animals too. The tool use displayed by dolphins, or an ant’s flare for navigation, each reveal an impressive capacity for ingenuity and imagination.
So why does any of this matter? What’s the link between Greek gods and dementia? Increasingly, there is traction for the recognition that the arts, and arts interventions, can have a meaningful effect on our health and wellbeing – that the arts can harness a unique and healing impact unlike any medicine. As a trained NHS manager, and singer, turned PhD student in dementia research, with a literature degree, I am truly excited by the potential of merging arts and health. The therapeutic benefit of the arts in this context is interwoven with questions about creativity.
Enabling people with dementia to be creative provides stimulation, and allows them to actively reclaim their identity, reassert their own agency and explore their sense of self. In turn, this helps them to connect with others – at a time when communication might ordinarily be difficult. Such creativity could be experienced passively, as part of an audience, or through participation – with no pressure on output or aesthetics. Though people with dementia are equally capable of producing art that is high quality and beautiful, there is as much merit and value in the creative process as there is in any product of it. The fleeting presence of the moment is critical for people with dementia, and the glow of creativity can be an original way of engaging and drawing them to it. Indeed, some findings suggest that cognitive decline can actually enhance existing abilities to create, or certainly intensify an appetite to consume art, particularly music. Even as the ageing brain deteriorates, it maintains plasticity and an ability to adapt.
Above all, most simply, creativity can provide entertainment, enjoyment and fun. This right to pleasure, and quality of life, is too often overlooked as a luxury in a health and care system doing its best under extreme circumstances. The irony of course, is that the arts offer a low cost, easily implementable solution to some of its challenges. A bit of creativity in decision-making processes could perhaps help us to inject some colour, sound and movement into the lives of those living with dementia. Being creative is about thinking outside the box. And we’re all capable of doing that.
A binturong is twice as long:
You might have thought
It’s very short -
In spite of that
It’s round and fat
A binturong is twice as long.
A binturong will get it wrong:
It goes to school
And plays the fool
And makes an ass
In every class
A binturong will get it wrong.
A binturong emits a pong:
Does not wash well
No shower gel
And give up hope
Of using soap
A binturong emits a pong.
A binturong will sing a song:
High in its tree
Beautiful harmony
You may not hear
Lest you come near
A binturong will sing a song.
I popped down to our ward this week to see how the new carer’s passport is going. We are working with John's Campaign (http://www.johnscampaign.org.uk/) to champion open visiting for patients with dementia and in the process of piloting it on our ward. It appears to be going well and we have a promise from three more wards who have volunteered to do a second phase pilot for the scheme.
While there I was very happy to bump into one of our longstanding volunteers. She was, as always, sat busily chatting with one of the patients and they were engrossed together in some colouring books and puzzles. I reflected how wonderfully fortunate we are to have such a fantastic team of committed and altruistic volunteers. They generously give their time to help patients with dementia to feel at home and settled in an unfamiliar, sterile and clinical environment without their loved ones.
They have to go through a period of training before they can launch into volunteering. The hospital volunteer co-ordinators provide a comprehensive programme which includes safeguarding, health and safety, fire safety, manual handling, values and behaviours, mealtime assistance, information governance, infection prevention, bullying and harassment, as well as a police check.
Take the mealtime assistance role as an example; they help patients with cutting up food, filling up drinks, washing their hands, making a warm drink, ensuring they have serviettes, condiments, an extra ice cream perhaps. They may even just sit with them to offer a gentle reminder to eat when dementia has clouded their ability to simply remember that it is lunchtime.
The volunteers are fully supported to undertake further training with the speech and language department if they want to feed patients, and this results in a competency assessment.
These activities may seem simple to an outsider looking in, but to the people in the frame, such activity is vital, and possibly the highlight of their day. They have the warm friendly engagement of a concerned human being who cares enough to make sure that they experience a sense of normality in the frightening world they have suddenly found themselves in. A place where strangers do the most unexpected and inexplicable things to them.
Our volunteers are part of the team. I am often astonished by their deep sense of altruism and kindness. In a busy world where we are all running to stand still to deliver care, our volunteers make the difference between ‘good’ and ‘excellent’.
Of course, some patients don’t want to sit with a volunteer, they just want their family and to go home. Quite right too and we pull out all the stops to make sure this happens. But in the meantime, we have our lovely volunteers to smooth the way and make their stay as pleasant as possible.
I am so drawn in by the whole phenomena of volunteering that I have decided to focus the next three years of my career into researching this for a PhD. As part of my MSc degree, I have developed a manual to embed the work I have already done and in the process of rolling this out the rest of the Trust. I have also developed an educational resource to help volunteers with their communication skills in dementia care and have written about the work I did with volunteers in the Nursing Times (http://www.nursingtimes.net/roles/older-people-nursing/the-value-of-volunteers-on-older-peoples-acute-wards/5075876.article).
This seems to be an under researched area, and what first appeared to me to be common sense, has evolved into a fascinating and absorbing piece of work which I hope will in time benefit other areas.
On a damp, dark evening in November around 80 people came together at County Hall to think about how to meet the challenge of dementia. People came from all parts of Nottinghamshire, from many different organisations and backgrounds, each with a personal or professional interest (or both) in dementia.
The presentations are available from Nottinghamshire County Council’s website (http://www.nottinghamshire.gov.uk/care/health-and-wellbeing/health-and-wellbeing-board/stakeholder-network-events). Speakers included Professor Tom Dening, University of Nottingham, on how research helps people with dementia.
The theme of government policy is 'living well with dementia’ and this is the challenge. Nottinghamshire has achieved most of the 17 objectives in the National Dementia Strategy published in 2009, and has a comprehensive range of services. However, approaches to dementia care move on and ideas change. We now have the Prime Minister's Challenge 2020 and a new set of recommendations to address. The meeting in November focused on 5 of these: reducing risk, Dementia Friendly Communities, care after diagnosis, the role of Primary Care and carers.
So, first, how do we reduce our risk of getting something we understand so little about? It’s well known that there is a link between smoking and lung cancer, alcohol and liver disease but the public health messages about the risk factors for dementia aren’t as well known. What is public health doing about that? One thing is the NHS Health Check which is your chance to get a free midlife MOT. For adults in England aged 40-74 the Health Check aims to help people live longer healthier lives, and everyone who has an NHS Health check is made aware that the risk factors for cardiovascular disease are the same as those for dementia. People who are aged between 65 and 74 and have a health check also get a leaflet with information about dementia.
So, how do we bring about those simple changes in lifestyle that are so important? The evidence is that people know what behaviours help promote a healthy lifestyle: stopping smoking, becoming more active, drinking less alcohol and improving diet. It sounds simple enough and these behaviours can also reduce our risk of getting dementia, especially vascular dementia.
Here’s a link** to Physical activity benefits for adults and older adults which helpfully advises us to be more active, sit less and something is better than nothing! So I have made a New Year’s Resolution to be more active, sit less and eat more healthily. Specifically I have joined an exercise class, taken up swimming again and got out my pedometer to increase my daily steps. What will you do this year?
* http://www.nhs.uk/Conditions/nhs-health-check/Pages/NHS-Health-Check.aspx
Safety and autonomy when capacity is compromised
My mum has dementia. She was diagnosed with Alzheimer’s disease last year although she had been deteriorating for a while prior to that. Mum is only 64 years old and still has young grandchildren who live nearby. In my blog (www.mumhasdementia.com) I attempt to make some sense of the chaos that dementia has wreaked in our lives by outlining everyday issues that arise. The following is adapted from a post on my blog regarding the delicate balance between safety and autonomy when dealing with the fluctuating levels of understanding that can occur in people with dementia.
We've recently come back from a family holiday complete with water slides and outdoor adventure areas, where a few issues arose regarding mum's safety. The experience has led me to question how we can ensure that someone is safe whilst still allowing them to make their own decisions and exercise their freedom of choice. It often seems that through trying to do 'what is best' for a loved one with dementia, in most circumstances we err on the side of 'keeping them safe' and that this may be potentially more damaging. On our family holiday there were a few striking instances of how potentially dangerous situations can arise and how we differ in our response to them. The first incident occurred on a water slide: Mum can swim and enjoys being in the water much more than she used to (now thankfully untroubled by whether it will ruin her hair or make-up) and my dad suggested that we all went down the individual water chute. This was a fairly standard plastic tube slide with a few twists and turns terminating in a shallow pool for disembarkation. There was a height restriction to deter small children and advice to avoid if heavily pregnant etc but otherwise it was billed as a mildly exhilarating ride that all of us had been on several time earlier in the holiday. My sister and I were initially a little sceptical as to whether mum wanted to go on the slide but dad gently jostled her in the right direction and she seemed amenable to the idea. She had already been down one of the double chute slides with him on an inflatable and seemed to enjoy herself so we thought we'd give it a go.
My sister and I went down first and waited for mum. What we hadn't banked on was that whilst she can swim safely and can sit upright going down a slide she clearly couldn't then push herself up out of the shallow pool at the end. As a result, we saw mum emerge, lying flat on her back as she plummeted into the spray and then we watched in escalating panic as she remained on her back, face covered in water, arms thrashing about, trying to get purchase on the sides of the slide. The basic reaction of pushing one's hands against the floor to propel your upper body into a seated position and thereby not drown was no longer functioning properly. After a few seconds of frozen horror we rushed to haul her up out of the water. She walked unsteadily out of the pool supported by a daughter on either side and we waited for dad. In the meantime we attracted curious looks from other holidaymakers but generally the whole episode had passed unnoticed. Dad slid out a few moments later in his usual bombastic fashion (accompanied by lots of noisy laughter and a massive tidal wave). We tried to impress upon him the severity of the narrowly averted calamity we'd just witnessed but seeing mum stood there, in one piece, albeit a little bedraggled, he was fairly dismissive of our concerns.
A similar incident occurred later that day on the water rapids. Unpredictable at the best of times, the rapids can throw you about a bit and disorientate even competent swimmers, although they are shallow and in theory an adult who could sit up should not be in any danger. It was impossible to keep hold of mum as we went down them and she clearly had knocked into some of the hills and turns (as we all did - I have the bruises to prove it). She looked traumatised as we emerged, as did the lifeguards, although none of them had intervened. Passers-by enquired whether we needed assistance and some threw fairly withering looks our way implying that we had wilfully inflicted psychological damage on an elderly frail woman (except of course she is neither frail nor elderly but relatively young and physically robust which is where the confusion arises). We sat her down, got her a coffee and peace was restored but I couldn't shake the uncomfortable feeling that we had pushed our luck too far.
Later still that same day we went into the pool with the wave machine. My sister had previously rescued mum from what were pretty substantial waves when she slipped and panicked so, in view of the preceding events, I was nervous as to how we would manage - but dad insisted that mum liked the waves and in we sloshed. The waves started coming, at first minor ripples, then more significant undulation and finally crashing breakwater monsters and mum was bobbing about smiling away. She looked crestfallen when they started to taper off again and exclaimed "Oh! Is it over?" in a genuinely disappointed voice. I was struck by how easy it would have been to have assumed that this particular scenario would have been too much for her - and how close we came to missing out on a good experience - bearing in mind that these opportunities are now limited.
Of course the easiest and safest thing to have done all holiday would have been to have sat mum in a chair, given her a warm drink and told her not to move while we all leapt in and out of the water and threw ourselves down chutes and whirlpools but would this have been right? Would it have been better than exposing her to near-drowning? I simply don't know. Looking back now I could construct a list of things mum enjoyed, the things she seemed ambivalent about and those that were simply too fraught with peril to pursue again but it was only by trying them out that we established her limits and this would be true of anybody. Any parent knows that sinking feeling of having set a child on a path of something we would have predicted was well within their capabilities only to be presented with a tearful howling infant at the end of it. Or to have resisted a child's determined entreaties to let them go horse-riding / on the dodgems / diving with sharks only to find that they go and do it anyway and LOVE IT! Of course if we go on exactly the same holiday next year mum's limits will have changed again and we will have to experiment to find their new level but that will also be true of the children and maybe some of the other adults (personally I have made a mental note to avoid some of the geysers on the lazy river which came a little too close to colonic irrigation for comfort). My sister and I are sometimes surprised and even shocked by how much dad pushes mum to try things out and test her boundaries but in a way I admire his gumption. He is determined that mum continues to experience life in all its exhilarating, whitewater glory and if that involves a few nail-biting moments then so be it.
The Mary Chester club is a day centre in Perth run by the Alzheimer’s Society of Western Australia. They opened their doors today to hundreds of delegates to the Alzheimer Disease International conference. A majority of those attending are from Asia; I met practitioners and researchers from Japan, Singapore and Hong Kong - as well as several from far-flung parts of Australia. The Mary Chester club is run along Eden Alternative lines, an approach to care that seeks to ‘abolish boredom and loneliness’ by creating stimulating, warm and welcoming environments for people with dementia. This club also provides a library with masses of information about different aspects of dementia care and technological solutions for everyday problems. Its personnel set up peer support groups of people with a diagnosis, while specialist consultants are on hand to work with individuals who encounter specific problems at home or in residential care.
The provision for men was particularly interesting to me. Many men attending the club included a love of sports in their personal profiles, and had been active players of golf, tennis or other sports. Appropriately, therefore, regular outings to the leisure centre with a dedicated fitness trainer were part of the weekly routine, while those who were too frail to leave the premises enjoyed chair-based exercise and meditation, we were told. One room in the centre was called a ’mens’ shed’, equipped with a workbench and tools for woodworking, and I saw that at least two of the care staff at the club are male. Of course women enjoy exercise and woodworking too, but it was good to see the attention given to meeting mens’ needs.
Yet it was noticeable that the vast majority of the delegates to the conference are female. I wonder why there is such a gender imbalance in dementia care. Men with dementia are seldom offered the option of a male carer, simply because they are so rare. Perhaps we should find out what obstacles stand in the way of a better match between the proportion of men with dementia and the proportion of male carers.
