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
On bad days it’s like living in a fog.
If you talk about metaphors, whilst it’s easy exaggerate using metaphors, I think it can be useful to give people insight into my world of living with dementia. One metaphor I use is about the fog. Which on bad days it’s like living in a fog, on good days – and there are more good days than bad – the sun shines and life is much clearer.
The other metaphor is about the hole punch, which is where the memory and something you’re trying to do: it’s as if someone has got a hole punch and punched holes in what you’re trying to do or look at or remember. Sometimes there are few holes, sometimes there are lots, sometimes is almost entirely obscured by holes.
The third one which people like to use is the Swan. Often people think you’re doing well – you’re coping well, because they only see what’s on the surface like a Swan: serene and majestic on the surface and below the surface paddling madly.
The fourth metaphor, one which has occurred to me recently, is about mining, which might surprise people. In studying my family history it became clear that I have mining – coal mining – in my roots. I have recently thought that there is a link between my current thinking around living with dementia. This is because living with dementia is sometimes like digging a new mine and posting pit props to support safe movement in the mine. The props are like a support I receive which allow me to be safe and confident. Remove the props and the mine cracks. Very much like my ability to live as well as possible.
An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/keith-3-nottingham-uni
One big psychological hit to having young onset dementia is a feeling of guilt.
There is a psychological impact, because, as I say, often the person who’s diagnosed won’t anticipate that that’s going to be the diagnosis that they get. There's a stereotypical image that people have that dementia is just for the elderly. And then there’s the psychological impact of – if they’re a younger person – carrying on working, carrying on driving, carrying on living if you like, carrying on travelling.
If we take each of those individual points for the moment, carrying on working is a problem, it’s also a problem for the carer, the other half, the spouse, because, or partner, because they often have got a career that they want to or need to maintain as well. And the demands placed upon them increasingly as a caring role has an impact upon their working pattern. Meaning in my case, and many other people I know who have dementia, that one is quite rapidly in many cases put out of the workforce, but the carer isn’t. And the carer needs to carry on working while still taking on an increasing caring role. So that’s another impact. And then consequent to that you feel guilty. It’s one big psychological hit to having young onset dementia: a feeling of guilt. Guilty that you’ve got this wretched disease, and all it presents to you.
Linked to that is obviously memory difficulties but also the ability to organise oneself, to even do things like cross the road. I find that very difficult now. And spatial awareness is quite difficult; it varies from day to day. I’m often bumping into people, I’m often knocking myself. I’m often needing to be restrained when I’m walking across the road because I haven’t seen the traffic coming, the brain hasn’t registered. So all those things may consequently have a big hit on your self esteem.
If you take for instance travel, I mean I am no longer able to travel on my own. So when I go to London or when I go anywhere, I go with either Rosemary, a student supporter or a friend. That’s a big hit on your independence. I don’t mind it in one respect because it gives me someone to talk to, and I like people’s company, but there are times when I’d like to travel on my own, or have the right to be able to travel on my own. Because travel insurance now is such that I can only get insurance if I’m with somebody. We’ve traveled extensively around the world over the last 30 odd years, and now I feel that my ability to travel is much less. To the point now where there are times when I think I won’t go on holiday again outside this country. And for someone who just a year or two months ago was thinking about going to Australia again, that’s a big knock to my self esteem, I guess.
So it shouldn’t be underestimated, because physically I’m pretty well, and I’m active and I’m fit, and I do a bit of training each day and I’m mobile. Intellectually I’m – putting aside the challenges that dementia presents to me by way of recalling, memory, not being able to remember what I’ve read and what people have told me – but actually, fundamentally intellectually I’m potentially strong as I ever was. But there are frustrations around being able to use that intellect, that’s the problem. And to be able to articulate myself without a script and without pre-thinking.
An audio version of this blog can be accessed here: https://soundcloud.com/dementia-diaries/keith-2-nottingham-uni
We are still the same people.
I went to the supermarket with my girlfriend just to get some bits and bobs. I just walking down the aisle, coming to the other way was this guy I know from way back: he used to work for me way back. He just kind of looked the other way and shuffled off, quick, as though he never knew me.
I think the old stigma hit home again. I don’t think he wanted to talk to me, or maybe didn’t know how to approach me, or was maybe a little bit frightened. I don’t know, but sometimes it just hurts a little bit when you think about the past and how you get along with people, and then suddenly because you’re diagnosed with this thing called 'dementia', in some shape or form you become an alien. I really do think it needs to be opened up, this thing. Again to harp on about things . . . Just to let people know that you are still the same, come what may and all the rest of it.
We are still the same people.
I couldn’t be bothered to tell him that, should be intelligent enough to know that anyway, but apparently he wasn’t. Anyway, another one bites the dust.
An audio file of this blog is available at: https://soundcloud.com/dementia-diaries/paul-2-nottingham-uni
There is something apposite about a university – which runs on brain power – becoming dementia-friendly. It recognises that human beings have value beyond their intellectual capacity. How can an institution whose purpose lies in developing intellectual potential also be dementia-friendly? We identified four ways that the University of Nottingham may be judged to be supportive towards individuals with dementia and their carers: in our education, research, organisational practice and public presence. As a university we aim to provide excellent dementia education across many faculties. We want our research on dementia to have international impact while being relevant to the lives of local people with dementia. Looking to our own organisation we aspire to exemplary and innovative employment practice, particularly regarding employees who are dementia carers. In the wider world, we are well placed to reduce stigma, dispel fear about dementia and create a more tolerant society towards individuals affected by dementia.
Western society is being affected profoundly by the growing prevalence of the incurable, degenerative group of brain disorders known as dementia. In the UK, dementia will affect one million people 2025. Many of us will live with a failing memory for several years towards the end of life. Our expectations of old age are overshadowed by the probability of progressive memory loss, families are under pressure to support frail older members in the community, while health and social care services are struggling to meet the challenge of unprecedented numbers of older people living with memory loss. The World Health Organisation and UK Government policy is to prioritise research and service development, recognising that change is also needed at grassroots level to engage entire communities in efforts to improve life for people with dementia and their carers. The UK Alzheimer’s Society launched two initiatives under the auspices of the Prime Minister’s Dementia Challenge 2012. The University of Nottingham is already a member of the Nottinghamshire branch one of these programmes: the Dementia Action Alliance, a coalition of organisations which each undertake to implement a ‘Dementia Action Plan’ relevant to their purpose. Our action plan focuses on awareness-raising, volunteering opportunities, and excellence in teaching and research. The second programme fosters Dementia-Friendly Communities, where “people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives.”
To demonstrate our commitment to becoming more dementia-friendly, in addition to the initiatives undertaken previously, we have been supporting two online campaigns: Dementia Friends and Join Dementia Research. In 2016, several hundred staff, students and alumni have signed up for both of these initiatives and more are welcome to join: https://idea.nottingham.ac.uk/pledge
On May 19th, 2016, our accreditation will be formally acknowledged by the Alzheimer’s Society. This will take place at a public seminar called ‘Dementia: University Challenge’ given by two respected leaders in the field, Mary Marshall and Jill Manthorpe, at 5-7pm in Room B63, Law & Social Sciences Building. The official strapline says ‘becoming dementia-friendly’, in recognition that the work of inclusion is never-ending. A committee of volunteers will carry it forward to ensure that we are true to our goal of making a real difference to the lives of the individuals with dementia and their carers who come into contact with the University of Nottingham.
Dementia is the perfect subject for Health and Wellbeing Boards to address. The Nottinghamshire Board is made up of County and District Councillors and Lead GPs from the 6 Clinical Commissioning Groups, plus others…
Nottinghamshire now has a new County-wide ‘Framework for Action for Dementia’ and this was adopted by the Health and Wellbeing Board on 4 May [1]. The plan aims to improve care for people with dementia, building on the stakeholder event held in November, meetings with carers and people with dementia, and the rather enormous Prime Minister’s Challenge Implementation Plan.
So how will this bring about improvements? There are 5 main areas.
First, the plan wants to make people aware that there is something they can do to reduce the risk of getting dementia, and that is to adopt a more healthy lifestyle, especially increasing physically activity, of whatever kind. Essentially ‘What’s good for the heart is good for the brain!’ If you would like help with this, see Public Health England’s One You campaign [2]
Secondly, the plan aims to make sure that GPs continue to refer people for a diagnosis and ensure that practices know who they are. The process of getting a diagnosis for dementia is very much about the person and their relative or friend telling their story – it’s this narrative, rather than a CT scan which will determine the diagnosis and what may then be most helpful.
Thirdly, after diagnosis, it’s important to improve the care available: better information (for people with dementia and carers), better communication (within the NHS and between the NHS and social care) and better education (especially health and social care staff – but just about anyone really). Nottinghamshire is keen to consider and support new ways of helping people to stay at home for longer and new ways of living such as the Extra Care housing development at Poppyfields which has been done in conjunction with Mansfield District Council [3]
Fourthly, there is now more awareness of the importance of carers. New research and new approaches are being trialled across the country. Nottinghamshire has commissioned a range of different services for carers, including the Compass workers who help support carers of people with moderate or severe dementia living at home. All referrals are made via the Older People’s Community Mental Health Teams. The staff provide practical and emotional support to help carers remain in their caring role, should they wish, for as long as possible. The service is unique because all the Compass workers have been family carers themselves and that makes a difference. This is reflected in the comments from carers:
‘It really helps that you understand how I’m feeling.’
‘To be told my reactions are normal is very reassuring….after our talks I always feel better about what I’m doing.’
And finally, the plan aims to promote Dementia Friends (for individuals) and Dementia Friendly Communities (for communities and organisations) [4]. We can all become Dementia Friends and all the organisations who are members of the Health & Wellbeing Board are being encouraged to make their organisations Dementia Friendly, including GP practices. District Councils have shown that they are keen and willing to support this, for example, Broxtowe Borough Council is one council that has already pledged to make their area a Dementia Friendly Community [5].
Will this new framework make a difference? Watch this space!
References
1. http://www.nottinghamshire.gov.uk/care/health-and-wellbeing/health-and-wellbeing-board
2. https://www.nhs.uk/oneyou#MIj8QV84uvrXHclf.97
3. http://www.nottinghamshire.gov.uk/care/adult-social-care/somewhere-to-live/extra-care-housing/extra-care-housing-schemes
4. https://www.dementiafriends.org.uk/
5. http://www.broxtowe.gov.uk/dementia
Gill Oliver
Senior Public Health Manager
May 2016
Last week I found myself onstage at Nottingham University’s Lakeside Theatre as part of an evening exploring Comedy and Mental Health. The gentle reader may be relieved to learn that I wasn’t there to perform stand-up but instead as part of a panel to discuss the topic, albeit in a relaxed rather than formal ambience.
The event was one of a pair organised by Kirstie MacDonald [1], the other workshop having addressed diversity. Kirstie runs a social enterprise, connected with our Business School, called Laughing Matters and she has lots of contacts in the world of comedy. The event was hosted by Lucy Porter [2], a comedian familiar to Radio 4 and other audiences. There were four of us on the panel. Sam Avery [3] is a comedian from Liverpool (no stereotype there then) representing the Comedy Trust [4], a charitable organisation who run brilliant programmes to help people build confidence through stand-up comedy; Julie Gosling, described in her honorary doctoral citation [5] as ‘a resilient champion of social justice for disabled people and others’, though her own description is much more pithy; Gary Winship [6] from Nottingham University’s School of Education; yours truly.
Each of us delivered five minutes or so on our work and how we saw humour interacting with mental health. My own presentation featured our research on arts and dementia alongside other work we have done on activities, such as sports. How, if they work well, these things get people with dementia to light up from inside. How the common element of success is to suspend the fact of having dementia so that everyone participating does so as an equal. How that, if you could do this with a drug, it would be available on the NHS and be paid for, but because it isn’t a drug it often isn’t paid for.
Fortunately, I was the first to speak as I knew I would be immediately upstaged by two professional comedians, a self-confessed madwoman and subversive, and a tour-de-force slideshow from Gary with the history of comedy in five minutes.
After this we answered questions pre-arranged and from the floor. These included such things as whether there is any humour in dementia, what outcome measures might be relevant in demonstrating that an intervention works, and whether humour that is in bad taste can be genuinely funny. In response to the first question, dementia is of course not funny in itself but humour features in various ways: first, it is of course one of the ways we cope with life; second, if we can laugh at ourselves it is often good medicine; and of course the unexpected is always going to happen now and again at any time in life and that includes dementia. Finally, there is no reason why people with dementia should not retain their sense of fun, their ability to smile or to laugh. All these things are part of the human condition – as too is the propensity to develop dementia under certain circumstances.
The evening went by in a flash. We were just getting warmed up when we had to finish. It would be good to do it again.
[2] http://www.lucyporter.co.uk/
[3] http://www.chortle.co.uk/comics/s/243/sam_avery
[4] http://thecomedytrust.com/
[5] http://www.ntualumni.org.uk/your_alumni_association/notable_alumni/honorary_graduates/julie_gosling
About a year ago I applied for a new position within the audiology department that I work in. Little did I realise quite how much it was going to change my life and change me. The post I applied for was to “further develop the provision of services for patients suffering dementia and hearing loss”. I had some experience in dementia care previously when as a recent graduate back in the depths of recession I had taken a job as a trainee care assistant in a care of the elderly hospital. The patients that most stick in my mind from this time were diagnosed with dementia, living somewhere between our world and their own. For example, there was the gentleman who had been a driver on the night train from Edinburgh to London. Every night just before bed time he would get up and declare he had to go or he would be late for driving the train and we had to convince him that on this particular night he didn’t need to go.
I don’t remember anyone talking of the connections between dementia and hearing loss back then, but the unique individuals I met have stuck in my mind ever since. So how can we improve services for these people? It is about making sure patients with dementia who come to us receive care adapted to them. This would help them get the best out of their hearing aids, which in turn would help them get the best out of the world.
It is also a question of awareness. Once you know that hearing loss and dementia are closely linked and can impact each other, it seems fairly obvious. If somebody can’t hear you, how can they remember what’s been said? The confused answer to a question you just asked. Maybe it wasn’t the dementia this time; maybe she heard the question differently. The connection between hearing loss and dementia goes beyond this obvious first level though. Research shows that people with hearing loss are more likely to develop dementia. Results so far are inconclusive as to why, but there are various theories. One is that the extra strain on the brain from hearing loss causes extra deterioration. Another theory is that hearing loss causes social isolation, less stimulation of cognition, which leads to a deterioration.
Knowing this, and knowing that the patients most likely to have hearing aid and dementia are older, it seemed obvious to us that what we had to take our services to the patients, rather than waiting for them to come to us. Time in hospital can be very stressful to patients, especially those who struggle to make sense of their surroundings. Add to that a broken hearing aid and you might be labelled aggressive, uncooperative or said to have “selective hearing”. So I see patients in hospital, and help them with their hearing and hearing aids. Having done this regularly and often for almost a year now, it seems to be paying off. We’re getting more and more referrals to the service as doctors and other health care staff realise just how big an impact hearing can have on cognition.
In this way I feel our service has become crucial to patients and staff. It increases communication, enables capacity assessments which might in turn enable faster appropriate discharges and fewer readmissions. Patients will be enabled, and staff members don’t have to watch patients struggle on with lost/broken hearing aids or poor hearing.
In some ways it seems impossible to help every person. For each person I see I am convinced there is another one that could do with the same help, but hasn’t come to our attention. But hopefully as our service grows and gets more imbedded in people’s consciousness more and more people will get the help they need. In the meantime I focus on those I know I have helped, and doing what I can to make their lives better. And in the end, isn’t that what makes it all worthwhile?
Four years ago, it all changed. My Grandmother, Jasmin, was diagnosed with Alzheimer’s. I always knew what dementia was, but I didn’t know the huge impact it would have on my family, especially me.
Someone once described me as ‘fiercely loyal and loving’; I can now see why that description is so fitting. I confronted Nan’s diagnosis as if it was my own: in life it’s about fight or flight and I fought.
Growing up I was the only Granddaughter and the youngest, so I did have a special relationship with Nan. You could even say I was spoilt, but don’t tell the others that. Nan always supported me and encouraged what I wanted to do with my future. So when I went off to study Photography at University, Nan couldn’t have been prouder.
I remembered being told. I was in my second year, and dad, my brother and I had just had dinner together and dad was dropping us home. People deal with news differently; my dad was quiet and anxious about the future, my brother seemed concerned about what she would forget and I thought about how the dynamics of the family would change and how could I help.
I began to see the changes in Nan; it started off slowly, a few confusions here and there but she was still living an independent life. She always enjoyed company, she had been on her own since my Grampy passed away in 2002, so she had made new groups of friends, started bowling, continued with her beloved gardening and had her little Micra to get around in. Nan lived in a lovely one bedroom flat underneath my Auntie’s house; she had a garden she could potter around in and family close by, so we all felt she was safe where she was.
As I entered my third and final year at University, I had thought a great deal about my final year project and what I wanted to concentrate on. I decided to focus my Photography on Nan and approach her Alzheimer’s from behind my lens. What a better way to finish my degree than spending a year photographing a lady who taught me so much and gave an opportunity to learn more about the journey she was about to take.
The fight or flight response is a physiological response when we feel a strong emotion such as fear or love. I felt both when I first began my photographic journey, but Nan was the same person we all recognized and cared for and that’s what I began to show in my series of photographs; and so ‘1938’ began . . .
Words are both beautiful and terrible things. Using words like ‘mellifluous’ or ‘Christmas cake’ brings to mind a whole set of associations and images. On the other hand, words are used to spin the web that is the stigma around dementia. Like any powerful medical treatment, they have both beneficial and adverse effects. Language is at the heart of dementia. Impairments of language are common early features in conditions like Alzheimer’s disease – people have difficulty finding words for things, they use common rather than less frequent words, they struggle with people’s names. (We all do, of course, it’s a matter of degree!)
Susanna Howard and Kate Sweeney are leaders in the field of connecting words and people living with dementia, though they come with different perspectives. Susanna takes literal quotes from her participants and the end product is often a book that is shared and celebrated with the person who has written it. She has a clear methodology and there is a training to work with this method. Kate comes as an artist and emphasises the need for the art to come first. For her, art is where it takes place which means that you have to be there to witness it. Therefore other forms of evidence, such as photos or even videos, are unsatisfactory. At the centre of both approaches is a recognition of the need to listen, to be still, in the moment, and to accept what comes forth. ‘Escaping from memory’ and ‘let the medium speak’ were key messages.
The audience, more accurately the invited members of this workshop, wanted to talk about the nature of evidence and evaluation. There are some real constraints with working in this area. One practical issue for the artists is that they often don’t control the environment (for example, in a care home) or even the number of people who attend their group. Examples of residents pressing to queue up to take their turn with ‘the Listening Lady’ or dozens turning up for a group meant for eight people. There’s a considerable tension between the research environment, where a health paradigm prevails, so ‘interventions’ have to reduce ‘symptoms’ or improve ‘behaviour’ or ‘quality of life’, and the artistic endeavour where ultimately perhaps no ‘outcome’ is required at all. Kate Sweeney makes the point that in the mainstream of life, people don’t ask the question ‘What is art for?’ in the way they used to. But asking it in relation to dementia has somehow persisted.
Towards the end, we started to talk about professionalism and this raises questions about how this emerging field perceives itself. There are now quite a lot of arts practitioners offering various types of experience. They are obviously highly skilled and there is a corpus of knowledge even though there are many individual approaches to the work. The ethical framework is starting to be discussed too. How does the corpus of practitioners inform itself and to what extent are they regulated, other than by their success in winning contracts? Definitely something for future discussion.
7th April 2016
