The arts hold a unique place in our lives. Whether it’s singing, poetry, museums or dance, the arts and culture enrich our lives and bring pleasure to everybody at some point.

For people with dementia this is no different, as the popularity of Singing for the Brain shows. Researchers have therefore begun to develop an increasing interest in the arts, aiming to find evidence as to how and why the arts may be able to help people with dementia.

Bringing together the arts and dementia research

In 2015, Alzheimer’s Society funded eight Doctoral Training Centres** around the UK, to train the next generation of dementia researchers. One of these centres is shared between the Universities of Nottingham and Worcester and is known as ‘Tandem’ (for ‘The Arts and Dementia’), and will train eight new PhD students in understanding the role of the creative arts in dementia care. As part of the work of the DTC, these bright and energetic students were charged with organising a conference that would bring together academics, arts practitioners and people affected by dementia.  It was described as the first conference of this kind in the UK on this topic, and I was a lucky invited speaker.

Along with interactive dance and poetry sessions, there was a lot of discussion about the role that research has in the arts. After all, if the arts are pleasant and enjoyed by people with dementia – why do we need to measure this effect? Who are we trying to convince? Lots of discussion focused on how research can better collect and use the many anecdotal stories reported by people who run arts groups. Other researchers talked about understanding the mechanisms by which the arts were beneficial for people affected by dementia. For instance, does singing have direct effects on the brain, or work indirectly through promoting social interaction between individuals? Can it help to break down barriers between professional staff and carers in care homes?

The researcher presents did a lot of soul-searching as to the important role they could play. Meanwhile, commissioners talked about the wider local benefits they often looked for in funding arts projects, not just to benefit those taking part but also for the wider local community.

‘Wellcome’ to the hub

There seemed a sense that dementia research was really just getting going in relation to the arts. Another project that Alzheimer’s Society is involved in started on October 4, called the Wellcome hub. Based near Euston in London, this offers a large exhibition and performing space where researchers, people affected by dementia and arts practitioners can mingle and work together. The space is open for two years and we have some interesting ideas how we will work with them – watch this space!

‘Shall I compare thee to a dose of Donepezil?’ is a tongue-in-cheek line (but has been written by an actual poet!) but asks an important question about whether using the creative arts could be comparable to the therapeutic effect of anti-Alzheimer’s drugs. Thankfully, people with dementia should not have to choose. All people with Alzheimer’s disease should be prescribed appropriate medication, and also be provided with rich opportunity to take part in non-drug activities such as the arts.

Photograph by Lewis Stainer of BeSeenPhotography

Whenever I have to use a public toilet, I am fascinated to see how they are designed. Many years ago, there was a publication called ‘The good loo guide’ (first published, 1965) where loos in London were awarded stars for excellence. My fascination for loos in public places stems from then.

Too often, going to a public toilet is stressful  – hard to find, not clean, too small, no paper or paper that’s hard to get, no soap – the list goes on. We’ve all had such experiences.

A couple of recent examples:

• At a conference held in an architectural ‘Centre of Excellence’, a gentleman was overheard coming out of the toilet, saying (I hope in jest!) that “the urinals were awfully high up…” – these were in fact trendy round metal basins in a row along the wall
• In an airport ‘Ladies’ room, a desperate lady with soap all over her hands was heard asking “how do you turn on the water?” – there was a black button to operate the water located under the shelf at the back of the sink, which was completely invisible.

For people with dementia, even getting to a toilet can be a real achievement – as signage is often very poor. Needing the ‘loo’ and not being able to find one is very stressful – and stress is disabling for us all and particularly so for someone with dementia.

Many people in the UK have poor sight - by 2050, it is predicted that the number of people with sight loss in the UK will double to nearly four million. Currently 1 in 5 people aged 75 and 1 in 2 people aged 90 and over are living with sight loss; 63% of people with sight loss are female, 37% are male (Access Economics, 2009).

So you’ve managed to find the toilet – and help! – everything inside is white, the toilet, seat, walls, grab rails, paper…This is likely to be really hard to see for someone with sight impairment, as it will blur into a white fuzzy mass. People with dementia just won’t understand it.

So what do we need?

• A toilet that’s easy to find, with a cubicle large enough for someone to use with ease
• Good colour definition so we can see what is what – and good lighting too
• A paper dispenser that is easy to use and understand (not the type that you have to put your hand up inside to scrabble desperately for paper!)
• Grab rails to help you if you need them 
• Locks that are easy to use 
• Basins that are understandable – not little round sinks or great big troughs 
• Taps that work easily – and if a hot and cold tap, ones that you can tell easily which is which 
• And the if the kind of tap that is a single lever from cold to hot, it must be pressure controlled or else you are drowned by the time you get hot water!

Then, drying your hands…paper towels are the most effective to use and understand.

The latest mechanical dryers are very noisy, which can be frightening for many people, both young and old. Noise levels can vary from approximately 58 dB taking 45 seconds to dry up to 90dB taking only 12 seconds to dry. (http://www.restroomdirect.com/hand-dryer-noise-levels.aspx). 90dB is equivalent to a hand drill and the level at which sustained exposure may result in hearing loss.

Visiting the toilet should be a pleasant experience – where the basics such as paper, soap, water and ways of drying one’s hands are easy to find and use, in a peaceful environment. And particularly so when we are older and if we have dementia.

So let’s get back to sensible and thoughtful design – and make going to the loo a pleasant experience for all, young, older, old and those with dementia.

In recent years there have been major initiatives to change the way that society is able to respond to the growing number of people with dementia - we are aiming for “dementia friendly societies” where people with dementia and those who care for them are not alienated, or even merely tolerated, but enabled to sustain their local connections and lead meaningful lives. Living with dementia is often full of many challenges and can leave families isolated, lonely and exhausted; as a society we need to minimise these ongoing issues and promote valued connections within local communities. We know that maintaining these connections supports wellbeing amongst older people with dementia. These connections can be supported in ways which are acceptable, accessible and affordable to individuals and local communities by many organisations including businesses, public services and the voluntary sector. A dementia friendly society has to be compassionate and collaborative.

The recent release of the “Dementia Atlas” by the government provides a visual map of living with dementia in England (see image above or visit: http://www.bbc.co.uk/news/health-37092989). The information used to devise the map uses a range of data, most of which depend upon a formal diagnosis of dementia. Various kinds of information are provided in clear ways which allow anyone to click on their own region and see how this fares compared to the average. This map is a good starting point for exploring the regional differences in the care of people with dementia and includes the rates of diagnosis, emergency admissions to hospital, end-of-life care and dying where one wishes to do so. There are wide differences between the measures and regions which highlight the need for continued work to narrow these gaps.

One section of the Atlas includes a measure of how dementia friendly an area is compared to a national average. One of the key measures gives an indication of the number of individuals who have attended a Dementia Friends session to learn about living with dementia. Whilst this scheme is to be lauded as a way of improving our knowledge about dementia, reducing stigma and stimulating inclusion, it is a broad measure of how dementia friendly a community actually is. Dementia friendly communities are ones which embrace and value the challenges of living with dementia of individuals who live in these communities. What matters to one individual and local community may not be helpful to another. 

Building and sustaining dementia friendly communities is a challenge which many key organisations, such as GP surgeries, NHS hospitals and care providers are enthusiastically engaged in. Small local businesses such as hairdressers, post-offices and pubs are managing to provide dementia friendly places, often in the absence of any national initiative but as part of a genuine desire to support local residents. However, much more can be done and the real strength of developing such communities are that they have to include people affected by dementia, family caregivers, neighbours and providers of services. My own work seeks to examine what makes a dementia friendly community as a way of understanding the particular diverse needs of each community. Rural communities face particular challenges which are often overlooked by national bodies but are nonetheless important now and will be more so in the future.  

There are larger numbers of older people living in rural than urban areas in the UK yet the majority of dementia care research is located within urban areas. A study funded by the Alzheimer’s Society and located at the University of Nottingham bucks that trend and seeks to understand the particular aspects of living with dementia amongst rural dwellers. There are concerns that, despite the idyllic scenery of rural areas such as the National Peak District, the challenges to developing dementia friendly societies in rural areas are complex for a variety of reasons.

In a study called “Scaling the Peaks; Understanding the barriers and drivers to providing and using dementia friendly community services in rural areas: the impact of location, cultures and community in the Peak District National Park on sustaining service innovations”, we will visually map the services and resources available to people with dementia and their carers, and examine how these are affected by the local geography and seasons of the year. This study includes people with dementia and the providers of support in a very rural location with a particular interest in what makes a dementia friendly community as told by older people with dementia. In short we are examining the ways in which rural dementia friendly communities operate.

This study has commenced work with voluntary, health and social care providers by regularly meeting with them to observe and discuss the ways in which they collaboratively work to build and maintain dementia friendly communities. Early evidence suggests that there is a diverse and committed number of mostly small “grassroots” initiatives which seek to value all members of a community. So far the findings suggest that the role of the church, local shop, pub and agricultural markets are seen as pivotal places which are valued by members of the community; arguably more so than public services locations such as health centres, libraries and village halls. Robust reliable and affordable infrastructures such as transport, internet and landline services, fuel and housing, as well as accessible health and social support are all considered as key characteristics of sustainable rural dementia friendly communities.

We are currently seeking to recruit up to 90 families living with dementia as part of the longitudinal study to understand their experiences and views about living in the Peak Park. Each family will be visited by the research team every few months to discuss their everyday lives and explore what they value the most in their communities. This will include physical, social and community sharing activities in addition to the everyday  needs.

This information will be used to develop a visual and conceptual map of the area to identify the types and locations of dementia friendly communities. This map will be freely available on the internet. We also plan to make a toolkit so that communities can build their own dementia friendly communities in ways which are useful for their residents. This will help in the future planning of services and support the development of truly dementia friendly communities across the trajectory of living with dementia.

Older people and their caregivers are very welcome to discuss the possibility of taking part in the study by contacting Dr Fiona Marshall by email on [email protected] or mobile on 07920 813613.* A formal diagnosis of dementia is not necessary to take part but you do need to be 70 years or over. Family and friend caregivers are also invited to take part and can be any age over 18 years.

*For further details of the study, please go to: https://www.alzheimers.org.uk/info/20053/research_projects/752/understanding_the_needs_and_experiences_of_people_affected_by_dementia_in_rural_areas

In the 1970’s when I commenced my nursing, most people with dementia were diagnosed nearer to the end stage of the disease process, and little was known about dementia. In fact, I doubt I had more than 1-3 hours education on it, if that much, and it was known then as senile dementia or pre-senile dementia. Patients, as we called them then, even in the geriatric wing where they were permanent residents, required end stage management. Over the last few years, perhaps in particular since the previous UK Prime Minister David Cameron’s Dementia Challenge in 2009, there has been a global push for early diagnosis, including it being incentivised in the UK.

This has been helpful, but what is still happening in the sector is people with dementia are being managed post-diagnosis as if they are end stage. There is still such a disbelief that anyone can live well with dementia, and most who are report they are often ‘accused’ of not having dementia. I am one of those people, and was diagnosed with dementia aged 49. Following diagnosis, everyone in the dementia sector, including health care professionals advised me to “give up work, give up study, to get my end of life affairs in order, to get acquainted with aged care, and to go home and live for the time I had left”. I was diagnosed early with dementia and at the time was a working mother of two teenage boys, and studying a double degree. It is not even logical that the next day, I was not capable of doing anything.

Some time after my diagnosis I termed what happened to me, and what I have heard happens to almost everyone, at any age or stage, 'Prescribed Disengagement®', and believed in it enough to Trademark it. The cost of this is a sense of hopelessness for everyone, as well as a prescription of ‘suffering’ for the person diagnosed, and the development of learned helplessness as their families take over from them, which, they are told they will have to do and which often also causes the more severe care partner stress, a loss of hope for their own future as well, and what appears in many to turn to martyrdom. It is unhealthy, unhelpful, and in my opinion is not only unethical; it is a serious breach of our most basic of human rights.

It is clear that the dementia sector must stop managing people with dementia who are diagnosed early with the disease, as if they are late stage, with little life to live. We have a human right to be supported to remain employed if we are still working when diagnosed, a human right to rehabilitation, inclusion, and also to full support for the disabilities caused by the symptoms of dementia, in the same way any other person living with disabilities is proactively supported. Dementia enabling environments are also part of our rights, in the same way that all buildings have wheelchair ramps and hearing loops. The ADI (Alzheimer's Disease International) global charter of ‘I can live well with dementia’ needs to become more than rhetoric.* Those who care for people with dementia must now support them to do just that.

Kate Swaffer © 2016 (Kate's own personal blog can be accessed at: https://kateswaffer.com/)

* Details of Alzheimer's Disease International global charter can be found here: https://www.alz.co.uk/global-dementia-charter

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

Becoming a dementia friendly organisation is no longer about satisfying some altruistic need or Community Social Responsibility policy. It is a matter of complying with equality legislation.

The number of people with dementia who are of working age is estimated to be nearly 50,000. Due to the difficulties in diagnosis it is possible that there are more. I think it is not a long way off before we have a case resulting from discriminatory attitudes towards employees with dementia.

The symptoms of dementia in younger people are the same but the impact can be more far reaching. Many will have more financial commitments, children and parental dependents. They will have future hopes and aspirations to fulfil before and after retirement.

Becoming a dementia friendly organisation promotes the empowerment and inclusion of employees living with dementia. It develops managers listening and empathy skills and support employees to access the right solutions and adjustments they may need. The process includes raising dementia awareness which is an impactful way to meet the equality and inclusion agenda of any reputable organisation. Training can ensure that all employees understand dementia diseases, the appropriate language and treatment used to talk about people with working age dementia and ultimately support then to feel positive about themselves.

There is a serious business case for recognising that people with working age dementia can continue to be productive and make a valuable contribution to their organisation for a long time. The right information, support and strategy will increase retention, reduced absenteeism, build greater employee loyalty. A compelling business case for becoming a dementia friendly organisation.

For more information about our Dementia Friendly Organisations programme, please visit: http://www.joco.gb.net/dementia-friendly-organisations/

Little did they know it was crumpling me up inside.

After I had had my diagnosis of vascular dementia, all my family and close friends were unbelievably supportive. All were somewhat distressed and surprised at me having this condition, and they all wondered what sort of life for us was going to be like.

Would we be able to cope? Well of course we would, we told them. Everyone offered their help. However two, now exfriends, one of whom is a teacher in a college didn’t believe I had dementia and began to mock me. They would make fun of things I did, especially if I forgot something. They’d call me names and laugh or sneer. Of course they must have thought it was funny, a bit of a joke, a laugh. Little did they know, it was crumpling me up inside. Their hurtful remarks ringing in my ears for hours.  

This verbal abuse and bullying was shocking, and went on for many many weeks. My wife too was threatened verbally, saying to her there was nothing wrong with me, and couldn’t she see I was making it all up, exaggerating forgetting things.  

At home afterwards (I am nearly 70), we just used to break down crying like two kids. Why on earth were they so wicked? I just wanted to push them in the canal and stab them with a stick. Of course at that time, I had no help, no one to turn to. But I have now.  

The help came in bucket loads. We’d never told anyone about what had gone on until now, because time has passed and things have moved on. I have dozens of new friends now, all of whom are great big sticks, sticks of information, to teach morons like these how to behave towards anyone with dementia, or any other condition for that matter. But I suspect making fun of someone with cancer or some other well publicised condition would not have been so easily tolerated or really funny.

It just shows the amount of work we have to do to educate these nice people, and why on earth do they think like they do. Is it that they consider dementia nothing more than just getting old? Just being forgetful, something that is going to happen to most of us. Whatever their views are, they need to be educated, beaten ruthlessly with a stick of information, until they understand that taking the piss is just not on.

An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/steve-1

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

When you have difficulties and issues you begin to realise how many times you cross a road.

You know I expected the memory issue with dementia and put up tips and strategies, and people talk about them a lot – in fact all the time. But my senses, my sensory challenges – this is a different matter and they are so scary, especially a normal thing like crossing the road. We cross the road lots of times, we don’t think really think about it – how many times we cross a road in a day. But when you have difficulties and issues you begin to realise how many times you cross a road. And all the times that you have to walk further to try and get a proper crossing to cross the road safely. 

You have to expend an awful lot of energy and it can be quite hard and almost put you off from going out. When you’re crossing the road you tend to use a lot of your senses, we don’t really  think about it: the cars, the environment with the sounds and the noise, you have to use your  eyes to look, to see and then you’ve got to judge how big are the cars – are they coming towards you or are they going away? And then when you look left and right and left again that kind of knocks your balance off, moving your head from side to side and then you jog your memory and you forget; and you’re slower because your judgement is slower. It’s almost sensory overload.  

I’ve been bumped crossing the road a couple of times, I’ve been scared and had near misses. And eventually, I have a low vision officer, she has said to me that I really need assistance when crossing the road. Can you imagine it? Here I am and I have to look about me and ask for assistance to cross the road. People look at me and think – you know I don’t look different, I don’t look as though I’ve got anything wrong with me why does this woman want help crossing the road? I think I was surprised when it first happened to me. I didn’t know why – I’m not a consultant. I did ask the consultant but it was as if he’d never heard me say anything, and I did speak to my CPN (Community Psychiatric Nurse) and she said ‘oh that will be your spatial awareness’, depth perception or something like that, and never went on to explain.

An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/agnes-2-nottingham-uni

I’m having to find the strength to ask for help, and this is not an easy task for me.

This morning it came to me. When after I had my meditation and quiet time. Some … not problem, maybe challenge or issue that I’ve been thinking about. And it’s one of the losses, the many losses of what happened to me when I was given the diagnosis of dementia. 

Before I was diagnosed I was an independent go-getter, a leader. And I managed to keep a lot  f this independence and leadership for the first four years, five years of my dementia, but now I realise that I’m needing assistance more and more. And I’m having to find the strength to ask for help, and this is not an easy task for me. To ask for help. When I ask for assistance, is it a sign of giving into my dementia? Is it a sign that I am a weak human being? Am I stigmatising myself by having these thoughts? 

What I do know is that if I want to live in my home for a couple of years more, I really need more  assistance. That’s why my daughter Donna had to give up her life abroad and come home, because she realised I was not getting any assistance, and I was struggling. And for her mum to remain independent longer, she would need to be around more. Not living with me, no, not that, but she’d give me a gentle touch. I remember someone telling me when they took over a  position that he was going to insure that people got gentle touch. You do, what I was needing. There’s no gentle touch for me. I’m at five years, six years ago, no gentle touch for me. I’m not sick enough for gentle touch, I’m not needy enough. Maybe I’m just one of the band of people with dementia who shrug and just get on with it. 

Anyway, back to my asking inability to ask for help. My neighbour had a stroke. She was a very  feisty, independent woman. And I watched her, and now she’s getting help to be dressed. Tears streamed down my eyes this morning because I realised that will be me too. Yes I know that I can, and I will, do the task when it comes with the help of my daughter Donna. I believe it’s coming faster than I’d like, but I know that together my daughter will help me come. 

I’ve also realised don’t look for help from the professionals, because nine years into my  dementia and I realise that every time I’ve asked for help, it’s been refused. I don’t expect help now. I’m one of the band that just get on with it.

An audio version of this blog can be accessed at: https://soundcloud.com/dementia-diaries/agnes-1-nottingham-uni