Sir Terry Pratchett, OBE. 1948 – 2015

Terry Pratchett

As someone who is passionate about helping people who are living with dementia, I was really sad, and quite shocked, to hear about the death of Sir Terry Pratchett at just 66 years of age. Sir Terry had been diagnosed with dementia, eight years ago, following an initial suspicion that he had had a stroke. Unfortunately however, Sir Terry turned out, more seriously, to have an uncommon form of early onset Alzheimer’s, known as Posterior Corticol Atrophy.

Sir Terry was best known as the writer of the fantasy Discworld series, and had produced over 40 books in that particular series; the last one being completed as recently as the Summer of 2014. In total however, Sir Terry was the author of over 70 books, including books for children. His books were translated into many languages and enjoyed success worldwide. Indeed unsurprisingly, Sir Terry gained his knighthood for services to Literature. His determination, creativity and his prolific amount of writing were all impossible to ignore!

As an avid bibliophile myself, and having two degrees in Literature, I greatly admire Sir Terry’s outstanding talents and huge achievements. My life would be so empty and would have an unfillable void without my books. Without authors like Sir Terry, producing rich material for our imaginations, our lives would undoubtedly be missing an essential dimension, arguably as precious as the air that we breathe.

Sir Terry’s passions evidently ran deep throughout many areas of his life, as he had been a keen campaigner for the Right to Die and an advocate for Dignitas. Additionally, he campaigned tirelessly for dementia and raising the public’s awareness. As shown in the photograph above, Sir Terry even managed to carry on writing while living with dementia. What a positive image of hope and inspiration for people living with dementia.

Sir Terry died a natural death at home on the 12th March. He was apparently surrounded by his family and had his cat asleep on his bed. The family’s grief must be so profound and hard to bear, but how proud they must feel, and what comfort they can take, from Terry Pratchett’s immense achievements and effects upon the world.

A Just Giving page was set up in his memory. Donations are for the Research Institute for the Care of Older People. It can be accessed at:

http://www.justgiving.com/Terry-Pratchett

Further thoughts on Dementia

dementia friends

The final day of my last university module was spent taking part in a Dementia Conference. As this is my particular area of interest, I had very much looked forward to attending the event. The speakers included a carer and a person living with dementia. The day was fascinating and illuminating, and I enjoyed it immensely.

The Carer’s Perspective

One of the speakers was a lady who cared for her husband who was living with dementia. As the lady recounted their story – of struggles and humorous episodes – I was very emotionally touched by what she had to say, and at times had to compose myself and blink back the tears. The speaker’s patience and kindness were especially evident, but so too were her frustrations and ordinary everyday ‘non-perfect’ human qualities. The lady worked extremely hard to care for her husband, and had completely changed her life by giving up her former job in a position of high responsibility, in order to take care of the person that she loves. As well as her husband becoming a different person, the lady spoke about her own loss of identity – through her former role as a career professional and as a wife. It was really quite sad, but the change was inevitable, and it therefore had to be embraced in as positive a way as possible.

One of the speaker’s main messages to our audience was that it was really difficult to obtain an initial diagnosis of dementia. Many professionals discount symptoms or misdiagnose them as depression. The lady was also keen to stress how the voice of carers is often completely ignored, perhaps on account of their non-healthcare professional status, and ironically, despite carers often being experts on the person in their care. The lady additionally felt that people were often given no information following a diagnosis, and were just left alone to get on with their lives, as though nothing was different. This must be a very disempowering situation, and one that could lead to very negative outcomes. At this point in the conference I made a mental note to myself, to always support the people in my care and their families, and to keep them fully informed about what is going on in the short term, as well as what to expect in the long term.

The Person living with Dementia’s Perspective

A lady living with early-onset dementia (a pre-65 years of age diagnosis, which can be as young as 40) bravely addressed our audience, in order to share her story. Due to the unreliability of her memory, she read from a pre-prepared script, which was suitably lengthy, informative and interesting.

The lady had formerly worked in a highly responsible job, and had started to notice problems with remembering things and repeating herself within her career role. After her diagnosis, the lady made the decision to give up her job, despite not being forced to by her employers. She decided upon her own considerations and realistic self-honesty, as she did not want to make any grave mistakes and end her career with disaster. This decision must have been really hard to make and to accept, but to partially counteract it, the lady positively decided, at this point, to do all the things that she still wanted to do, like travelling, before her decline becomes too restrictive.

The lady explained how her life remains full through involvement with dementia groups and by socialising with other people living with dementia. The negative side of her experience has mainly come from other people’s perceptions within the general public. For example, a shop assistant was irritated because the lady took a long time to get the right money together, and the assistant apologised to the customer waiting behind, rudely pointing out how long the lady was taking. The other customer apparently joined in with the rudeness by agreement and general sighing. In a state of growing agitation, the person with dementia meanwhile, dropped all her money onto the floor and must have felt so embarrassed. What a terrible episode this must have been for her, and sadly this was unfortunately not an isolated incident.

In order to help with daily life, the speaker explained that she does have a badge stating ‘Please be patient, I have Alzheimer’s’. For personal reasons however, she chooses not to wear it; perhaps because of wanting to avoid people’s pity, patronising comments or just being treated differently. Bearing such incidents in mind, the need for developing dementia friendly communities is compellingly clear. As dementia is on the increase, the general public desperately need to be educated about the condition and how they can help. To alleviate ignorance, discrimination and stigma, public awareness is vitally crucial.

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In fact, this final point above reminds me of a comment that the speaker, who is a carer made: she said that some people that she and her husband knew, before his dementia diagnosis, now crossed over the road in order to avoid them. She felt that they were probably too embarrassed to talk to them, and they may well be afraid of dementia as a condition. The lady expressed a belief that, for many people, dementia is the new cancer. Before much investment in research, resulting advances in treatment, routine screening and increased public awareness, cancer used to be a particularly feared disease, which was often akin to an actual death sentence. Although there is still plenty to be done, recovery from cancer is now generally much improved, if detected early. As dementia currently stands however, there is no cure. Dementia is a progressive disease which commonly declines over 10 to 15 years, and eventually leads to death. Consequently much of the public are afraid of dementia, but like cancer, we must not give in to it. Until a cure is found, we must help people to live well with dementia. 10 to 15 years is a long period of time, and the person living with dementia is still there inside. Sometimes it is just a little bit harder to find them! Improved knowledge, the development of effective communication techniques and acceptance are key. If you are not already, I would urge any reader to become a dementia friend, and to see how you can help people living with dementia. Only together, can we make our society dementia friendly.

dementia friends

Exploring Advanced Dementia

Appropriately for Mental Health Awareness Week, I today attended a seminar which explored advanced dementia. The seminar was kindly hosted by a local hospice, and examined many concepts regarding the topic of dementia: including types of dementia and their features, the importance of getting to know each person with dementia as an individual, effective communication throughout the different stages of dementia, recognising that we might be the problem and not the dementia, and making environments dementia friendly.

A new concept for myself was the introduction of the Dementia Bookcase. This is an analogy which I found useful and apt; so please let me explain. Imagine a bookcase with four shelves, which represents the life stages of the person with advanced dementia. Childhood is at the bottom, adolescence and early adulthood is second up, mid to late adulthood is on the second from the top, and now – the present – is on the top shelf.

Now – the present

Mid to Late adulthood

Adolescence / Early adulthood

Childhood

Working from the top, the metaphorical ‘books are falling off’ and cannot be replaced; rather sadly like the brain cells of the person with dementia. The next shelf down, of mid to late adulthood, is now forgotten, and this is particularly hard for a carer / partner who has cared for the person with dementia – even worse for a second (later married) wife. On the third shelf, of adolescence to early adulthood, the person with dementia remembers going out to work as a milkman. He wakes up at 4:00 in the morning, and is desperate to get out, because he needs to deliver the milk. On the bottom shelf, as the person is getting nearer to death, he remembers being a child and may ask for his mother or father, and may well be concerned that they do not know where he is. If childhood experiences were bad, this stage may be emotionally difficult. At this final stage, spirituality becomes extremely important, and will allow the individual to form a vital connection with a thing that is special to them. Depending on the person, this may be through a piece of music – or singing or dancing, watching football or stroking an animal. Whatever the choice, it can be a joy to witness a person ‘coming alive’ in this way.

donkeys

record player

Another thing that really struck me today was a discussion regarding validation. Imagine a situation in which the person with dementia asks for their wife, but you know that the person’s wife is dead, and has been for 20 years. What should you do? Do you lie? Do you tell the truth?

If the person wants their wife, then you should validate the person’s needs by talking about her. “Tell me about your Sarah, where did you meet? Can you remember your wedding day? What was it like when you had your first child?” Talking about the person’s wife will bring comfort and a moment of happiness. They will feel that you really care. The person may well soon forget what you have just talked about, and may ask about Sarah again, or possibly they might not. Validation is surely better than telling a bare-faced lie? Consider for example: “Sarah is staying with her mother at the moment, but she is probably going to come and have tea with you tomorrow.” Or even worse, imagine the alternative, although it may be true? “Don’t you remember? Sarah died 20 years ago.” Imagine the person with dementia having to live through the pain all over again; it just seems so cruel. Validation is surely most appropriate.

On a warmer note, a concept called doll therapy was also briefly discussed. There was a story regarding a lady who longed to see her daughter, who was living far away in another country, and did not get to visit her mum as often as she would like. The lady believed that her daughter was still a child; and so when finding a doll in the residential home where she lived, the lady joyfully announced that the doll was her daughter – she had come back to her mum. The lady became totally attached to her newly found ‘daughter’, and took her around with her all of the day, slept with her at night, and ‘fed’ food to her at mealtimes. The doll became quite grubby with food around her mouth!

feeding doll

Some people may criticise this behaviour, and consider it inappropriate for a grown woman to be ‘playing’ with a doll. Doll therapy however, was clearly hugely beneficial for this particular lady. While it is clearly not ethical to treat a person with dementia like a child, through representation of the person’s former memories, doll therapy serves a completely different function. To live in the person with dementia’s world is a good and productive task of engagement. Approaches such as doll therapy can bring much happiness and benefit. The world of dementia may at times seem strange, but as discussed today, perhaps we are the problem and not the dementia? Person-centred, individualised care remains to be the main priority.

Back to University

The first semester of my second year is now almost over.  My favourite placement, so far, was passed with great enjoyment, and was signed off by my tutor earlier this week.  My two assignments for my optional modules were submitted then too.  One was regarding end of life, or palliative care issues, while the other was regarding families and carers, with a particular focus on dementia. 

There are now just a couple of lessons of the optional modules left, and these are mainly taking place in the simulation rooms alongside the patient mannequins.  These are basically high tech dummies to practise on, and they can talk, breath and have vital signs along with many other tutor programmable functions.  These were one of the first things that attracted me to my university choice, but as mental health nurses, I think that we do not get to use them perhaps as much as the adult nurses do.  They are a great teaching resource to have on site though.

As I prepare for my next semester and module, which is titled Mental and Physical Health and Wellbeing across the Lifespan, I picked up the set reading books which I had pre-ordered from the library.  Before the module starts, I am trying to read as much as I possibly can, in order to get a feel of what this topic is about.   This next semester is quite a crucial one, as we have a three hour anatomy and physiology exam at the end.  As this is potentially quite a factually intensive subject, this knowledge is a little daunting, so I am trying to get a head start.  With this in mind, I have read about 75 pages of one of the books already, and am finding it really interesting.  I have previously found anatomy and physiology really fascinating, but there is such a lot to remember.  It is a positive sign however, if you actually enjoy something, so I will just try to approach it with interest and enthusiasm.

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Before starting the first of the set books, I had just read a brilliant book about the topic of dementia.  The book is called The Nun Study and the science of old age: How we can all live longer, healthier and more vital lives – Aging with Grace, and it was written by Dr. David Snowdon.  The publication was recommended to me by one of the psychiatric nurses at the placement that I have just finished.  I had told him that one of my main areas of nursing interest was regarding caring for patients with dementia.  I am so glad that the nurse told me about this book, because it really was a fabulous and fascinating read.

I will not tell you too much, just in case you would like to read it for yourself, but Dr. Snowdon basically set up a long term research project of 678 nuns, ranging in ages from 75 to 106.  The nuns agreed to take part in annual mental examination tests to assess memory, concentration, language, visual spatial abilities and orientation to time and place, and they also agreed to donate their brains for examination and dissection when they died.  I will not say much else, but some of the nuns had Alzheimer’s disease, while others did not; so Dr. Snowdon and his team had a combination of diseased brains and healthy brains, to look at and compare.  If you are interested in dementia, then I would urge you to read this book.

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I will now get back to completing a couple of tasks for university.  I have just finished some essential Year 2 work regarding the Nursing and Midwifery Council, and I now just have a reflective piece of writing left to complete regarding family and carer input during my placement.  I will then continue with the anatomy and physiology reading…   

Welcome to my Thoughts on becoming a Mental Health Nurse

My name is Amanda Butler, and I have just started my second year as a Student Mental Health Nurse in Manchester. I am not your average eighteen to twenty something student; I am what they call a mature student. I have tried various career pathways in the past, including IT and teaching, but it is only now in my early middle years, that I have actually really found what it was I was looking for.

Like many things in life, it was a couple of major events that allowed me to reach my turning point. I lost both of my maternal grandparents to dementia – Alzheimer’s and Vascular dementia, respectively. I had been exceptionally close to both of these lovely gentle people, and I knew that I had to do something to help similar people, and their families, who were suffering with dementia. The disease is very cruel and often completely changes peoples’ personalities. The decline is progressive and it can be emotionally painful to witness.

The first part of my plan was to start a new job as a Care Manager in a residential care home which had a dementia community. The work was really tiring, both physically and mentally, but I found that I really enjoyed it and achieved enormous satisfaction from it. The residents were so trusting, so generally helpless and grateful for the workers’ efforts. I loved to hear the residents’ stories; they were an endearing and interesting combination, of both accuracy and confusion. It was impossible not to feel attached to these lovely vulnerable people and to care for them, with compassion and commitment, like you would your own family member.

After 12 months experience of working full time as a carer, I applied to various local universities for a place as a student nurse. I applied for the mental health branch, without a degree of hesitation, as I knew that I wanted to help not only people with dementia, but all those individuals with debilitating depression, bi-polar, schizophrenia and so forth. I feel strongly that sufferers of these conditions have been stigmatised and discriminated against for far too long. More mental health professionals are desperately needed to bring about the necessary changes, and I want to be one of them.

I found the university I was looking for in May 2012. Upon arriving, I received the slightly disappointing news that all the places for September 2012 had already gone, but today we would be competing for March 2013 places. This news was initially unwelcome, but when I thought about it rationally, it didn’t really matter if I got my place on the course; I would just have to be more patient!

The other students that I met that day were really friendly, and I was impressed with the facilities that were provided on campus. I had already passed one hurdle by being selected for an interview, but before that took place I was presented with two tests to tackle in numeracy and literacy. The literacy one was fine, as that is my favourite subject, but I was really nervous about the numeracy test, as mathematics has never been a natural strength of mine. Looking back, it did not go particularly well, as I never had enough time to complete all of the questions. I had revised beforehand, but I know that I was very slow in completing my calculations.

The face-to-face interview however, I feel, went well, as I found the interviewer easy to talk to. We comfortably chatted about our common interest in mental health issues, and so I felt really positive when I left to go home. I eagerly awaited to find out if I had been successful, and after about two weeks the good news appeared on my on-line UCAS account. I was going to be a Student Mental Health Nurse. I was going to make a difference. I was absolutely ecstatic and didn’t know how I would wait until March!

It is now April 2014 and I have completed my first year of training, and I am officially one third of the way to becoming a registered Mental Health nurse. The tutors say that the second year of our training tends to be the hardest, as it is still quite a way until the end of the course, the academic work steps up a level, and our mentor’s expectations on placements will be slightly higher because we are second year students. I am ready for the challenge however. I never expected it to be easy, and I am raring to go. Welcome to Year Two!