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Difficult Conversations about End of Life

Author of upcoming book ‘Dodging Dementia: Understanding MCI and other risk factors: Second edition of The Essential Guide to Avoiding Dementia’ Mary Jordan has written the following blog which provides insightful support on the difficult conversations surrounding end of life. Her newest book will be available on Hammersmith Health Books and other online vendors in September!

A diagnosis of dementia is an opportunity to come face to face with our own mortality – and that of those we love. It may not be an opportunity everyone wants to embrace but in some ways this diagnosis gives us all a chance to accept our mortality and, if desired, to plan for how we would like our own end of life to be. Carers have told me that although they found the subject difficult to face, they have often been strengthened by the experience of considering their own end and have achieved some measure of peace from doing so.

Understanding the end-of-life wishes of someone with dementia

Establishing end-of-life wishes can be a very important part of caring. Even if discussing these matters after diagnosis is difficult, carers can at least be sure that they are doing an important and loving thing. It can be very difficult for people with dementia to make their wishes known. An important factor in dementia is the loss of the ability to foresee or understand the consequences of one’s actions or even to think clearly about the future. People with dementia have a tendency to exist ‘in the now’ and may find it very difficult to engage in discussion about a theoretical future. This means that effort to establish feelings about the end of life may have to be inferred.

It is important not to transfer our own feelings onto the person we are caring for. Just because we may feel that we would ‘rather be dead than demented’, this may not be how a person with dementia feels. We should listen to the way someone talks rather than trying to use direct questions. People with dementia may use expressions such as: ‘It’s awful’ or ‘There is nothing left’ or ‘I’m angry’ when asked how they are and this can be indicative. Others will answer ‘I’m fine’ or ‘I feel Ok’ or ‘Very well’ to the same question.

Reality vs. our preferences – the value of making a plan

Unfortunately, the final days of life often come in an unexpected manner. We would all like to imagine a final peaceful ‘drawing to a close’ of life, perhaps surrounded by loved ones, well cared for and pain free. The actualities can be quite different. Perhaps a fall or an infection is followed by an emergency admission to hospital and a fast deterioration. Sometimes residential care homes are so worried about possible accusations of neglect or mismanagement that residents at the end of their life are admitted to hospital instead of being cared for in the surroundings they are used to. There may not be time to consider wishes and advanced plans in these circumstances but remember that where these have been discussed and recorded it is more likely that they will be adhered to. Hospitals are generally bad places to die (they are designed to care for and cure) and privacy and peace and calm are rarely obtained there. Nevertheless, my experience is that families who have discussed end of life and who have planned and considered ahead often feel more comfortable about events leading up to death even if things have not turned out the way they planned.

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Carers Week 2022

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contributions carers make to families and communities throughout the UK.
It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.
This Carers Week, Mary Jordan, author of ‘The Essential Carer’s Guide to Dementia’, details what being a carer to those with dementia means, and how people can lend them more support in their role.

Was there ever a more difficult time to be a carer? Especially a carer of someone with dementia.

Dementia is a very difficult condition to deal with. It is unpredictable. It is not an illness that has a set ‘pattern’, nor despite many texts to the contrary are there set ‘stages’ that the person with dementia goes through as their illness progresses.

The things that can help

A few things are known to be helpful: social stimulation, connections with close friends and relatives, access to good medical attention and support and advice, timely intervention when ‘crisis’ (such as falls, urinary tract infections, or accidents) occur.
All these have been denied to carers over the past two years.

How things changed.

A face to face meeting with the GP has become almost unknown. Appointments with a specialist are fraught with complications. Support services are discontinued. Outside visitors are not allowed during hospital stays. Friends cannot visit. Family members are denied access to residential care homes. Rehabilitation services are not functioning.

What carers are telling me

Rather surprisingly (to my mind) most carers are fairly accepting of the lack of face-to-face contact with GPs. After an initial period, most of them seem to have got to grips with technology enough to manage telephone, or remote contact via internet consultations. The biggest difficulty seems to be with access to ancillary services such as physiotherapy, rehabilitation, falls clinics, speech and language therapy and sight and hearing services. These cannot be delivered remotely and the ‘backlog’ after lockdown seems to have led to long waiting times for appointments and treatment.

Support Services in the community

Many carers rely on social support such as dementia cafes, memory clinics, ‘Singing for the mind’, seated exercise classes, Cognitive Stimulation Therapy, carers support groups. All these services were forced to close during the severe ‘lockdown’ period but it is noticeable that as soon as it was permitted and reasonably possible most of these services re-opened. Sometimes there were restrictions or extra guidelines, but the community and voluntary sector made efforts to provide these vitally needed services.

A wide variation in provision

Once government guidelines were relaxed it might have been expected that access to health services would be quickly brought back to pre-pandemic normality. But there seems to have been a wide variation in maintenance of restrictions and this has created problems for carers. One chain of ophthalmologists still insists on full PPE for staff, face coverings for customers and queuing outside the premises whilst another invites walk-in appointments. Some dentists still (strangely) insist on face coverings for patients whilst others follow government guidelines that these are no longer necessary.  Some physiotherapists and chiropractors do not allow anyone to wait on the premises, others have opened their waiting rooms.

Difficulties for people with dementia

Many people with dementia find difficulties in following social procedures such as standing in a queue, waiting in turn, facing a doctor or health practitioner alone (without the reassuring presence of a carer) wearing a face covering, or following a one-way system.  Whilst these procedures may have been necessary when the pandemic was at its height more thought needs to be given and action taken to end unnecessary restrictions now.
Often health and social care businesses are forced to continue to press unnatural restrictions on customers and clients due to the pressures exerted by those providing Professional Indemnity Insurance. This is wrong. If the Government has indicated that the situation has eased, then this should be definitive.
Life is hard enough for those caring for someone with dementia.  Does society need to make it even harder?

For more information about Mary Jordan’s book, ‘The Essential Carer’s Guide to Dementia’ or to read the first chapter free, click here.

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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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What Hammersmith Books authors recommend for National Reading Day

In honour of National Reading Day on 23rd January, we’re very pleased to share recommendations from Hammersmith Books authors about the books they loved best when growing up, or that got them reading.

 

Frances Ive, author of One Step Ahead of Osteoarthritis, says: ‘I am going to say: Alice in Wonderland, which I loved so much that it got my imagination going. I think Peter Pan and all Enid Blyton books (especially The Famous Five) did the same.’

 

Craig Robinson, author most recently of The Energy Equation with Sarah Myhill, says: ‘Red Shift by Alan Garner. Do read it – all in one sitting! And then leave it and read it again! I have now read it about 8 times (last year being the most recent)… and each time I feel something new……achingly new.’

 

Caroline Freedman, author of The Scoliosis Handbook, says ‘My favourite childhood book way ahead of any other is Chitty Chitty Bang Bang by Ian Flemming. I used to wait for my father every evening to come home from work and read to me. I must have been about 3 or 4 years old as I can remember sitting in our old family home in Wembley waiting for him. The most exciting part in the book for me and one I would make him repeat over and over again, in a funny and scary voice, is the line…”These guns belong to Joe the Monster”. We would then discuss the story and what we thought might happen just so I could stay up as long as possible.’

 

Raymond Perrin, author of The Perrin Technique, says: ‘My favourite 2 books as a child were All Creatures Great and Small by James Herriot and My Family and Other Animals by Gerald Durrell. I loved animals and wanted to be a vet or own a zo, so definitely recommend these two if any child has the same dreams.‘

 

Trevor Griffiths, co-author of forthcoming Emotional Logic (May 2021) says: ‘For National Reading Day, [co-author] Marian’s first choice is Black Beauty. Mine is Swallows and Amazons. This feels timely, because an 8-year-old granddaughter who is a fast reader is running out of ideas.’

 

Magnolia Cardona, author of forthcoming When the Time Comes: stories from the end of life (March 2021) says: I can’t really remember THE first book that gave me the love of reading but one of the early ones was The Little Prince by Antoine de Saint-Exupéry.

I couldn’t have enough of it and read it in three languages over the course of my primary school. However, to get today’s children reading passionately I would highly recommend Matilda by Roald Dahl.

This little book got my daughter reading 10 books per week (she was the public library’s best customer!), and she later moved to another one I highly recommend: George’s Secret Key to the Universe by Lucy and Stephen Hawking (and the rest of George’s series). That book collection led her to join the local astronomy club for years until end of high school.’

 

Sarah Russell, author of The Bowel Cancer Recovery Toolkit, says: ‘The first book that made an impact on me was the Sports Nutrition Guidebook by Nancy Clark. Even as a young girl I had an interest in health, exercise and nutrition. I used to read and re-read this book over and over again.’

 

Sandra Hood, author of the forthcoming Feeding Your Vegan Child (June 2021), says: ‘My recommendation for National Reading Day has to be The Lion, the Witch and the Wardrobe. I remember reading this at school and borrowing it from the book cupboard. I had to write my name in a book that was 

hung up on a string with a pencil attached. You felt like you could go into this wonderful world just through the wardrobe and meet lovely Mr Tumnus at the lamppost and being offered Turkish delight from the witch in a sleigh – magical!’

Antonina Mikocka-Walus, author of IBD and the Gut-Brain Connection, says ‘Too many books to choose the favourite, but The Six Bullerby Children by Astrid Lindgren (author of Pippi Longstocking) was probably one of the first I read myself rather than being read to me by my parents.’

 

Susan Koten, author of Irritable Bowel Syndrome and Giardia, says: ‘I loved reading Just William by Richmal Crompton.’

 

Martyn Hooper, author most recently of Five-a-Day Plus One: the Vitamin B12 Cookbook, says: ‘My love of books started with Enid Blyton, especially the Secret Series and particularly the Secret of Moon Castle. The books were readily available in my primary school library and we were actively encouraged to take a book home over the weekend. But, I soon tired of the plots that started to sound far too similar. And it was when I was around 10 years old that my grandfather gave me my first proper book; it was a thick hardback complete with a dustcover showing a one-legged pirate, propped up by a crutch looking dangerous, mean and foreboding. A golden hoop earring hung from his left ear. From page one I was not only captivated by the characters but also capitulated into the 18th Century world of Pirates. There was talk of Buried Treasure. Black Spots and Mutiny all centred around a parade of wonderful characters somehow related to Captain Flint and his old shipmate Long John Silver. There was Billy Bones, Black Dog, Blind Pew and Jim Hawkins. And the wonderfully eccentric, intelligent and cheese-loving (toasted mostly) Ben Gunn. It was Treasure Island that led to my first and last nightmare, but none of the above was responsible. It was the cruel, frightening, stealthy and sly Israel Hands who chased me, and Jim Hawkins, up one of the Hispaniola’s masts with a large knife held between his teeth.

 

Mary Jordan, author most recently of The ‘D’ Word: Rethinking Dementia, says: ‘When I was very young I read a lot of Enid Blyton. I have no idea why she is so frowned upon. She used good clear English and wrote stuff that kept you reading. However, probably the book I would nominate would be The Lion, The Witch and The Wardrobe, together with the other Narnia books.’

 

Julie Sullivan, author of The Gallstone-friendly Diet, says: ‘Two books are responsible for my early love of reading – Watership Down by Richard Adams, and The Lion, The Witch and the Wardrobe by CS Lewis.’

 

Jo Waters, co-author of What’s Up With Your Gut?, says: ‘I loved Noel Streatfield’s Ballet Shoes , which my mother had loved as a child too . It was about the Fossil family, Pauline, Petrova and Posy, who were all very talented and lived in London and had been adopted by an (absent) professor who was away fossil hunting and were cared for by a nanny. They were left to their own devices a lot and I liked the sound of that . After that I read all her books and joined the Puffin Book Club and ordered a book every month. It was really Ballet Shoes that kicked off a lifelong love of reading.’

 

Clarissa Foster, author of Understanding BRCA, says: ‘My first favourite book was The Famous Five novel series by Enid Blyton. I first read them when I was around 8 years old and couldn’t put them down!’

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It’s National Read-a-Book Day!

In honour of National Read-a-Book Day this Sunday 6th September, we asked our authors to recommend the best books they’d read during lockdown. This is what they told us:

 

Dr Sarah Myhill, independent GP and author most recently of Ecological Medicine, says: ‘The Shardlake series by CJ Samson – brilliant!  Also the Cicero trilogy by Robert Harris.’

 

Craig Robinson, mathematician and co-author with Dr Myhill, most recently of Ecological Medicine, says: ‘For me it would be The Diamond as Big as the Ritz by F Scott Fitzgerald.’

 

Sue Koten, herbalist and author of Irritable Bowel Syndrome and Giardia, says: ‘Company of Liars by Karen Maitland was very interesting as it was about a group of people travelling through the time of the plague.’

 

Julie Sullivan, author of The Gallstone-friendly Diet, says: ‘The best book I read in lockdown was Reasons to Stay Alive by Matt Haig.’

 

Frances Ive, health journalist and author of One Step Ahead of Osteoarthritis says: ‘I’d like to recommend two because they were so good: The acclaimed Normal People, by Sally Rooney, which I read in three days before watching the TV series which was equally good.

‘Where the Crawdads Sing by Delia Owens – brilliantly written with outstanding description of the wildlife and swamps in N. Carolina (and has sold 5 million copies).’

 

Barry Sears PhD, research scientist specialising in inflammation and author most recently of The Resolution Zone says: ‘I read a lot of history and philosophy during these times to put things in perspective. History doesn’t necessarily repeat itself, but it usually rhymes. Ancient Roman history especially provides a sense of balance. That’s why I am rereading Gibbon’s The Decline and Fall of the Roman Empire. I recommend co-reading a more recent book, Twilight of Democracy by Anne Applebaum, as a companion book.

‘Philosophy (especially Roman Stoic philosophy) lets you make better choices with the current fate you are dealing with. A book that I can recommend is Philosophy for Life and Other Dangerous Situations by Jules Evans.’

 

Erica Crompton, independent journalist and author of The Beginner’s Guide to Sanity says: ‘My mood has been low during lockdown which means concentration is poor. So I read Paragon art books as they’re succinct and easy to read. The last one in the third week of lockdown was called The Life and Works of Constable. It made me notice and appreciate the trees on walks after reading. Next up, Dear Life – short stories by Alice Munro, brought for me as a birthday gift.

 

Professor Stephen Lawrie, Erica’s co-author, says: ‘I would say Fiction: Girl, Woman, Other by Bernadine Evaristo.

 

Associate Professor Antonina Mikocka-Walus, health psychologist and author of IBD and the Gut-Brain Connection, says: ‘Boy Swallows Universe by Trent Dalton and The Ten Thousand Doors of January by Alix E Harrow are my latest favourites.’

 

Jo Waters, health writer and author of What’s Up with Your Gut? says: ‘I read all 880 pages of Hilary Mantel’s The Mirror and the Light  during lockdown – it seemed topical too as there was talk of plagues and tyrannical leaders and civil unrest. It was a great book to hunker down with in dark days, but it reminded me that dark days pass – although not alas for Thomas Cromwell. I read it in eight weeks and can’t wait to reread it.’

 

Nat Hawes, health researcher and author of the Nature Cures books and website says ‘The last intriguing book I read was Glittering Images by Susan Howatch.’

 

Dr Raymond Perrin, osteopath, specialist in neuro-lymphatics and author of The Perrin Technique, about to be published in a greatly enlarged second edition says: ‘I managed to dab onto a wonderful collection of short stories by Stephen King, Bazaar of Bad Dreams, which has the usual Stephen King twists from the master story teller.’

‘And a sort of health book I enjoyed during the past few months was The Reality Slap by Dr Russ Harris to understand how ACT Acceptance and Commitment Therapy helps people through life’s stresses and as a useful aid to helping some of my CFS/ME patients cope better with their illness.’

 

Hanna Purdy, nurse practitioner and author of Could it be Insulin Resistance? says: ‘I am hoping to read Dr Sarah Myhill’s Ecological Medicine next, about PK diet, sleep, exercise etc. It sounds similar to what I think about these things, so I am always very keen to learn more. I haven’t had time to read anything whilst finishing my own book, so I am only planning, but would like to name this book.’

 

Bridget Sheeran, independent midwife, homeopath, women’s health activist and author of colouring book Preparing for Birth, says: ‘I’ve been reading books that tell me how to do things and think A Taste of the Unexpected by Mark Diacono is brilliant – it tells one everything one would want in a holistic garden. And I’ve been revisiting Sally Fallon’s Nourishing Traditions to make fermented foods. Otherwise the only reading I’ve been doing is for a course but I’ve found Interpersonal Psychotherapy  by Scott Stuart and Michael Robertson fascinating and highly readable.’

 

Mary Jordan, author most recently of The ‘D’ Word, says: ‘I did enjoy The Infection Game by Sarah Myhill – everything she says is so sensible. I also really enjoyed Pale Rider  by Laura Spinney about the Spanish Flu of 1918. I read it to convince myself that this would all pass as it did 100 years ago and was amazed to learn that the effect of hysteria caused by the media is unchanged.’

‘For escapism you cannot beat Jane Austen and I reread her novels and then enjoyed reading Jane and Me by her great niece, Caroline Jane Knight, about the last days of Chawton House (JA’s brother’s house) as a private residence.’

 

Sara Challice, teacher, motivational speaker and author of Who Cares? says: ‘I read two great books this summer for my Mindfulness Teacher Training course, both on health and wellbeing. They are Ageless Body, Timeless Mind by Deepak Chopra, which shows we have more freedom and power than we realise, and Essential Spirituality by Roger Walsh, which will have something to offer you wherever you are on your spiritual journey.

‘I’ve also listened to Michael A. Singer’s The Surrender Experiment as an audiobook, about the author living a quiet life of meditation and solitude but agreeing to do what he was asked by others and how this helped him to evolve and grow… and turned into a huge business.’

 

Fleur Brown, author of Beat Chronic Disease, says: ‘The books I have most enjoyed reading during lockdown are: A Gentleman in Moscow by Amor Towles, Girl, Woman, Other by Bernadine Evaristo, Circe by Madeline Miller, Love is Blind by William Boyd and The Remains of the Day by Kazuo Ishiguro. If you want my favourite three, these are A Gentleman in Moscow, The Remains of the Day and Circe.

 

Caroline Freedman, specialist personal trainer and author of The Scoliosis Handbook of Safe and Effective Exercises Pre and Post Surgery, says: ‘I love reading and have always devoured books and any I have read during ‘Lockdown’ have had to really hold my attention. For a quick-dip-in-and-out book I’ve found Dr Sarah Myhill & Craig Robinson’s The Infection Game fascinating and has made me re-think about how I approach infections.

At The Pond is a bunch of essays by writers including Margaret Drabble and Deborah Moggach, describing their experiences of Hampstead Ladies’ Pond.  I walk on The Heath most weekends with my two dogs Tillie and Oscar and have never dreamt of swimming in the freezing cold outside. The trauma of having to emerge myself in my school outdoor unheated pool at the start of every Summer Term in April probably has something to do with this. Nevertheless after reading these memoirs I am really tempted to have a dip ‘At The Pond’… once ‘Lockdown’ is truly over.

The book I loved reading during ‘Lockdown’ and was really quite upset when I finished it was The Seven Husbands of Evelyn Hugo by Taylor Jenkins Reid.  Every page was a pleasure to read. The story unfolded beautifully and the Hollywood glamour painted so well, I could see the words in colour.  Each chapter was a surprise and I could not guess where the ending was going.  I can usually work out how a novel will finish… not this one.

 

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Trying to provide the best environment for someone with dementia in the present crisis: the three ‘Ss’

Dementia

It’s a difficult time for all of us – and particularly so for anyone with dementia. We are all being urged to stay at home and people in care homes are no longer allowed even to see visitors. How can those of us caring for people with dementia provide an environment that gives them the best experience in these circumstances?

First, it is important that the environment is supportive. Life does not always run smoothly and those of us who still have plentiful cognitive reserves learn to cope with that fact. We can acknowledge the need to limit our social contacts and our outings in the present circumstances. We can accept that we may feel anxious, bored and annoyed and we all hope to ‘come out the other side’ when life resumes its normal path.. Someone who has little cognitive reserve, for whom even following a routine is difficult, will find any change or complication doubly difficult. People with dementia need support. They need support from those around them and it is doubly important that those they rely on for support continue to give calm and consistent care.

As much as possible carers should keep to the habitual routine. There is no need to force the person with dementia to stay indoors, for example. If the rest of us are allowed outdoor exercise then so are they. ‘Social distancing’ can easily be maintained simply by walking in quieter areas or gently directing the person you care for in the right direction.

Secondly, the environment should feel safe. Note that I am not saying here that the environment should be safe but that it should feel safe to the person with dementia. Naturally, we should aim for a clean home environment – but becoming over-protective about touching surfaces or cleaning areas is not going to help someone with dementia to feel more safe and secure. It is more likely to cause extra stress as they cannot understand the need for such precautions. And bear in mind that most people with dementia confronted with a person wearing a mask and gloves are likely to feel terrified rather than safe.

Thirdly, the preferred environment for people with dementia should be stimulating to the senses and provide an opportunity for social interaction. Now that day centres and dementia cafes have been forced to close many carers are finding it quite challenging to provide activities for people with dementia and even more challenging to provide social interaction.

The fact is that without stimulation any of us may become bored and doze off. How often has this happened to you whilst watching a boring TV programme? People with dementia are frequently bored because many of the occupations with which they passed the time previously are now closed to them. Boredom can lead to difficult behaviour and restlessness, but often it just results in sleepiness. Simple tasks can be enjoyed – think sorting books by size, pairing socks, ‘tidying’ shelves, dusting and polishing. And remember that an impaired memory can be an advantage. If you ask someone to dust a piece of furniture more than once they are unlikely to remember that they have just completed the task. Outdoor jobs like watering plants, raking up leaves, and carrying trimmings to the compost heap combine fresh air and exercise as well as passing the time and ‘tidying the shed’ can occupy a good few hours even if the result doesn’t live up to the job description! Watching visitors to a bird table can be absorbing and this can be done through a window if the weather is not so good.

Providing social interaction is more challenging. Today we are being urged to use technology and social media to keep in touch with others but this is not an acceptable alternative for people with dementia who progressively lose the ability to work even simple devices such as a remote control. Many people with a cognitive difficulty will also be unable to associate screen pictures with the ‘real thing’ and may even find them frightening.

Telephone calls are often still acceptable as this is a method of communication that is still familiar so ask your relatives and friends to use the telephone to make contact.

You can also talk to neighbours ‘over the fence’ or whilst keeping an acceptable distance on a walk. Carers from care agencies are still allowed to visit to provide personal care or companionship if this is necessary so don’t cancel your regular care and remember to give them tips about chatting to the one you care for.

Blog post written by Mary Jordan, author of The Essential Carer’s Guide to Dementia. 

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The ‘D’ Word: Rethinking Dementia

When the brain is affected by dementia, logical thinking and reasoning ability are affected quite early on. However, the amygdala – the part of the brain that is the integrative centre for emotions, emotional behaviour, and motivation – is less affected. People with dementia (PwD) who have trouble processing logic and reasoning do not have a similar problem with their ability to feel emotion. Indeed, as far as research can show, people with dementia still feel happy, sad, afraid and so on, even after they can no longer speak or recognise people they know well, even when they need total support to live their lives. It seems, though, that most people – including many well-meaning carers – are unable to adjust their own behaviour and thinking to accommodate the continuance of emotional experience, along with the decrease in reasoning ability of the person they care for.

If someone has a broken leg we do not assume that they could walk on it ‘if they tried’. We do not suggest that they listen very carefully whilst we explain how to walk. We do not try to divert their attention so that they can walk without thinking. No. Instead we set the broken bone and maintain it in position with support (a leg-plaster). We allow them to rest the leg. We give them a crutch to aid movement and we accept that walking will be slow and difficult until the leg is healed. Similarly, if someone has part of their brain which is not functioning we should make allowances. We should try to keep the parts of the brain that do function in as good order as possible – by encouraging social interaction, physical exercise and general health. We should allow the brain to ‘rest’ when it needs to by not demanding actions which are no longer essential. We should supply a ‘crutch’ using memory aids, providing unobtrusive help and support. We accept that everything cannot be as it once was because this brain is not what it once was.

It is important, though, that society should recognise the relative importance of the emotions which come to predominate when logical thought and thought processing are deteriorating. Society in general does not much like domination by the emotions. ‘Civilised’ people should learn to control emotion and apply logic and reason to manage their everyday life, it is thought. But what if we can no longer use our logic and reasoning to help us come to terms with emotions? Suppose we are unable to understand and work out why we feel sad or happy? Imagine if we feel these emotions overwhelmingly, but we are unable to deal with them by a change of scene, by talking through our feelings, by taking actions to alleviate the misery or express the happiness. Imagine being no longer able to speak coherently enough to tell anyone how frightened you feel or how angry. What might you do? How might you try to express yourself? Perhaps you would try to hide somewhere, or to run away and escape. Or you might shout and get angry. Perhaps if no one made any effort to understand, you might try to use physical methods to show them how you feel.

This blog is taken from The ‘D’ Word: Rethinking Dementia by Mary Jordan and Dr Noel Collins

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Discussing dementia with Jeremy Hunt, Secretary of State for Health

Since I began working with a national dementia charity nine years ago there have been many improvements to the level of support that people living with dementia (by which I mean both those with a diagnosis and their families and carers) receive. It is now rare for me to meet someone who has struggled for months to get a diagnosis. More GPs are aware of the signs and symptoms and people are more likely to be referred for memory assessment. When I met Jeremy Hunt he explained that he had been campaigning for earlier diagnosis knowing that this can make it easier for people to get the help and support they need. We discussed what still needed to be done for those affected by dementia.

It seems to me that the most important thing now is to get society in general to accept those with dementia and to keep them integrated in the company they know and enjoy. Day centres, Dementia cafés and other specialist services like musical memory groups all serve a useful function and are popular -until recently I ran a very well attended and popular dementia café myself – but our real aim should be to make it possible for people with dementia to continue to go to the social groups, clubs and events which were part of their life before diagnosis.

Some things are already being done. In many places, in Britain there is a huge campaign to make businesses, shops, and public areas ‘dementia friendly’.  The ‘Dementia friends’ campaign by Alzheimer’s Society has also had a big impact in terms of making people generally aware of the difficulties experienced by those with dementia trying to function in everyday life. These are all good initiatives. But acceptance is the key. The above initiatives make people aware of dementia and they may make people more willing to help when they see someone having difficulties but do they make people with dementia more accepted?

Dementia is a problem for all of society but this is still little recognised. Most public places are now ‘accessible’ in terms of physical disability with level paths, ramps for wheeled access, better signage, bigger parking spaces and so on. We should now consider making changes to improve accessibility for those with the cognitive disability. Such changes might include material factors such as better street signs, clear demarcation of different areas and well defined entrances and exits but they should also include the vital human factor. People with dementia need support from other humans. Assistive technology can be helpful in a limited way but social interaction is what slows the slide into helplessness. Just as the public have been educated to recognise the rights and needs of those with a physical disability, so the rights and needs of those with a cognitive disability need now to be addressed in our neighbourhoods and our public places and by all of us in our local communities.

Mary Jordan is an expert in dementia care and works for a national dementia charity. Her books The Essential Carer’s Guide to Dementia and The Essential Guide to Avoiding Dementia offer invaluable insights into the condition and how to care for those with the condition.

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Caring for Loved Ones with Alzheimer’s and Dementia

When dementia takes hold you need outside support because, as people get worse, they cannot be left alone for any length of time and the carer needs to share the burden with others.

When it comes to dementia you cannot ‘go it alone’. It doesn’t matter whether you are independent and used to managing your own affairs, that you’re ‘not a sociable person’ or are used to ‘keeping yourselves to yourselves’. You as a couple (carer and person with dementia) may pride yourselves on one, any, or all of these virtues, but it is important once dementia strikes that you re-think your attitudes.

Why do you need a support team?

A person who has dementia can NOT live alone successfully, and in a perfect world we would never expect them to do so. ‘Care packages’ that involve carers calling in once, twice or even three times a day to help someone living alone are only a stop-gap measure. Very good carers who take pride in their work and genuinely care about their clients can make a difference, but they cannot replace the constant watchful presence that is required in all cases except the very early stages of dementia. Sometimes, however, this kind of care is the only and right option at the time and in this case it is important to get the very best care package that you can as long as it is possible to manage this way.

On the other hand, spouses and partners who live with someone who has dementia are put under constant stress as they try to look after them. Living with another person – even when they are in good health – requires constant compromise as we adjust our habits, actions and conversation in the interests of ‘rubbing along together’. Over many years these actions and adjustments become habitual, but they still remain. The most important thing to remember and take note of is that in any social situation all persons are involved in this constant compromise. Of course we can recognise that most partnerships are unequal and that one partner may take more adjustments than the other.

Usually the person who makes more adjustments to the will of another does this willingly. Nevertheless, living with someone involves a constant daily compromise between pleasing ourselves and pleasing another. But people who have dementia gradually lose their ability to see another person’s point of view – they lose their ability to empathise, to understand the everyday compromises that kept the partnership going. The partner who is the carer is left making all the compromises – possibly without even the satisfaction of a shared sense of humour or of togetherness – and certainly without the feelings of support they may have once had from their partner.

This is a burden no one, however loving and dedicated, should carry alone.

If you are a carer in this situation you can build a team to help you.

Who will be on your team?

Your support team can consist of anyone who is prepared to give time and help to you and the person you are caring for: family, friends, neighbours, professional carers, staff in a day centre and support workers from organizations such as the Alzheimer’s Society can all be included.

For more support and guidance on building your team read The Essential Carer’s Guide to Dementia by Mary Jordan, available as paperback and ebook.

This blog was published for World Alzheimer’s Month #RememberMe

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Caring for the carer

Being a carer is very stressful and very tiring. It can also be very fulfilling and many of us are glad to be ‘giving something back’, especially if it is to a parent who once cared for us. But there is no denying that it can sometimes feel as though we are labouring under an intolerable burden.

In an ideal world, as our relatives or close friends grow steadily more frail, plans would be made for the future, money saved for contingencies, moves made to more manageable accommodation, and help enlisted in advance. In the real world, people fall ill suddenly, accidents happen and the role of carer is suddenly ours without planning or forethought. If at all possible, time should be made after the initial ‘emergency’ to take a step back, draw breath and consider a ‘care plan’. It is very worthwhile at this stage to get the whole family together and agree co-operation with everyone involved.

Care together and cooperate

Lack of communication and co-operation may turn out to be the biggest underlying problem. Group meetings early on will help avoid resentment or guilt developing. Make use of personal strengths here. For example, someone who is not good at practical personal care may instead be able to manage the financial affairs. Someone who enjoys cooking may agree to keep the freezer stocked with ready meals whilst someone who is only free once a week might organise the shopping.

What if you are the only family member? You should not try to take on everything alone. There may well be neighbours or friends of your relative who will help in the same way that family do. Otherwise you will have to turn to professional help. There is no need to feel guilt over this.

Do not neglect to ask for help from the person you care for’s friends and neighbours if you need it. A neighbour will often promise to ‘keep an eye on things’ but it would be much more useful if you asked them to do something specific – say, ‘Can you call round each morning just to check all is well?’ Of course, people may sometimes be unable to help, but unless and until you ask you will never know. Also investigate local clubs and organisations to which the person you care for belongs. For example, their local church, The British Legion, ex-servicemen and women’s organisations, local branches of organisations set up to benefit ex-members of professions or trades. Local and national charities can also be sources of help.

Care for yourself and get the support you need as a carer

Caring for a member of the family is an unpaid ‘occupation’ but you or the person you care for may be able to claim certain grants and allowances and if you are entitled to them you should certainly claim them. You may not realise that, if you are a carer, you can ask the local authority for an assessment of your own needs. The kind of help and support you can get as a carer includes: respite care to give you a break if you are caring constantly for your relative; emotional support from other carers, usually through a local support group; help with caring; and help with household tasks and activities for the person you care for.

As a carer, it is very important that you look after your own physical and mental health. You should never neglect your own health issues because if you are ill the person you are caring for will suffer as well since you will be unable to give the level of care you would wish to. You should take care of yourself physically by eating properly and taking exercise, but you should also build in some sensible respite. For example, pay for a professional carer once or twice a week. A friend, neighbour or other family member could do this, or even some local charities may provide this service.

There are several organisations aimed at supporting carers. Some of these offer information, some offer practical support and some offer ‘moral support’ in the form of local support groups where carers can meet to talk about their problems or concerns with people who are in a similar situation to them. Many support organisations have carers’ support chatrooms and forums accessed via their website and you may find this kind of ‘virtual’ support most helpful.

Make use of all the resources you can to help you and the person you care for. Read books, check magazine articles, ask at the library, search the internet. Buy or arrange provision of any equipment that will make life easier. Above all, ask what is available. Especially ask your district nursing team. They have access to a lot of information and contacts.

It can be difficult, but try not to allow yourself to feel constantly guilty. Those who we care for do not always show their appreciation, and indeed in some cases, they may be unable to do so. Try always to assure yourself that you are doing the best you can.

At this point it occurs to many carers to think about their own future. It is a very good time to make plans whilst you are caring for another because the difficulties and limitations of frail old age will be clearly before you (as well, perhaps, as the compensations). So, this could be an ideal time to think about your pension and will. You can feel secure in that you have made all the plans you possibly can.

Share this blog for Carer’s Week next week (6-12 June) and help highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

Read more advice and guidance for carer’s from Mary Jordan’s book The Essential Carer’s Guide out now as ebook and paperback.