Communicating mindfully in dementia

Talking to a friend or relative with dementia can be frustrating:

are there any tips that help?

My comments on ideas from the 'a place for mom' website

1. Recognize what you’re up against. Dementia advances gradually, strategies may need to change with time
2. Avoid distractions. If talking is effortful, find a quiet time and place to communicate.
3. Speak clearly and naturally in a warm and calm voice. Avoid patronising tones as if you were talking to a child.
4. Refer to people by their names. Use their name and your own name, be prepared to recap.
5. Talk about one thing at a time. Keep the conversation simple.
6. Use nonverbal cues. Look at the person while you're talking and use gestures if needed.
7. Listen actively. Try not to agree with what they say if you haven't understood; though asking for clarification can be hard.
8. Don’t quibble. Let delusions and missatatments go; constantly challenging can shift the mood.
9. Have patience. Be calm, keep a warm tone when you repeat things.
10. Understand there will be good days and bad days. Tiredness, anxiety and discomfort can all disrupt concentration.

I have sometimes noticed people looking bored or embarrassed when visiting an elderly relative. For that reason, I would add four more rules:

1. Make statements whenever you can: 'You look well today' may be more useful than 'How are you today?' Give the person time to qualify a statement.
2. Leave pauses: the spontaneous words may be much more valuable than responses to questions or statements.
3. Try reading aloud: poems, stories or novels. Even people with incoherent speech may respond.
4. Keep a communication book which any visitors or staff can write in so information is shared.

O, to be in England... Robert Browning

Robert Browning, like Charles Dickens, was in Italy in the spring of 1845 when he wrote this poem

Home-thoughts, from Abroad

In 1845 Robert met the love of his life: Elizabeth Barrett Browning [EBB] 

But he had admired EBB from afar after reading her newly-published poems and had written his first letter to her on 10th January 1845 which began: 

'I love your verses with all my heart, dear Miss Barrett' 

So he must surely have been thinking of Elizabeth, immobilised as she was by an unexplained illness when he wrote these lines. But he didn't meet EBB until May 1845. You can see how he imagines a person being in England and seeing and hearing the spring developing and growing. His verse in May is loaded with sensual imagery:

O, to be in England
Now that April's there,
And whoever wakes in England
Sees, some morning, unaware,
That the lowest boughs and the brushwood sheaf
Round the Elm-tree bole are in tiny leaf,
While the chaffinch sings on the orchard bough
In England-now!

And after April, when May follows,
And the whitethroat builds, and all the swallows!
Hark, where my blossom'd pear-tree in the hedge
Leans to the field and scatters the clover
Blossoms and dewdrops - at the bent spray's edge-
That's the wise thrush; he sings his song twice over,
Lest you should think he never could recapture
The first fine careless rapture
And though the fields look rough with hoary dew,
All will be gay when noontide wakes anew
The buttercups, the little children's dower
-Far brighter than this gaudy melon-flower!

Granny's in a muddle: Living well with Dementia

"Granny's in a muddle: Granny needs a cuddle"
A six year old grandson's response to Joy losing the thread due to young onset Alzheimer's dementia. Alzheimer's is a common form of dementia associated with amyloid plaques and nerve fibre tangles. It begins with short term memory difficulties and is associated with wasting of the hippocampus which plays a part in immediate memory. The other common form of dementia is a mixed picture associated with multiple small strokes.
I heard Joy Watson speak recently and thoroughly recommend her approach to living well with dementia. Dementia-friendly design is important and would benefit us all, with fewer accidents and better demarcation of boundaries. 

Details here.
Glass tables and visual illusions on the wall disorientate people with difficulties estimating distance due to poor vision, people who've had a stroke and those of us who walk about with a mobile in our hand.
Wendy Mitchell talks here about her diagnosis with Alzheimer's despite living a healthy life 'nothing can protect you," she says. She's keen to encourage people to contribute to dementia research. You can follow Wendy's twitter feed here:
@WendyPMitchell

The greatest challenge is to create whole communities that are sympathetic to people with dementia. People who 'get in the way' by walking slowly along the pavement may be doing the best they can to stay active.
Regular physical exercise is reported to preserve the hippocampus, a region of the brain which thins in association with Alzheimer's dementia. The Cochrane review is guarded in its summary of the value of exercise in dementia: 

There is promising evidence that exercise programs may improve the ability to perform ADLs [activities of daily living] in people with dementia, although some caution is advised in interpreting these findings. The review revealed no evidence of benefit from exercise on cognition, [thinking] neuropsychiatric symptoms [delusions, hallucinations], or depression. There was little or no evidence regarding the remaining outcomes of interest (i.e., mortality, caregiver burden, caregiver quality of life, caregiver mortality, and use of healthcare services).

Social contact seems the most important factor in helping people with dementia to function at their best. Particularly as people with dementia commonly withdraw and become isolated.  Dementia Action Alliances are springing up all over the country. You can find out your nearest initiative here. 

Happy Endings in Children's Books

Happy Endings used to be vital in children's books. 

Not so with the recent trend for 'terminal teens' as seen in titles such as Jenny Downham's Before I die, John Green's The Fault in Our Stars and most recently in Sarah Benwell's The Last Leaves Falling. 

Perhaps these books reflect a post-modern rejection of moral tales and a willingness to tackle subjects specifically excluded in earlier guides for writers. They certainly tap into strong emotional events and enquiries about what lies beyond. Mainly, I think, the writers encourage us to live honest lives knowing that injury or disease can strike people of all ages without warning.

As a doctor, I'm glad that chronic disease in childhood, learning needs [Sarah Hammond's The Night Sky in my Head] are represented implying a more inclusive society. Since it's my blog, I can mention my own title: Speak to Me: Mute, witty and dangerous, which seeks to explore the teenage experience of advanced cerebral palsy.

All these titles challenge the overriding perception of a fit society in which 'fitness' is equated to both 'sexually attractive' and 'deserving'. The experience of people outside the presumed majority urgently needs to be explored in an age of hate crime of outsiders: those with disability, different gender, orientation or race. 

Despite advances in treatment, living with chronic illness is an experience of a minority of young people, their friends and their families. Arthritis, Down's Syndrome, autism, hemiplegia, cystic fibrosis, diabetes, heart disease all deserve to be represented here. 

What young people seek is not pity or charity but a recognition that their lives are as eventful and precious as any of the celebrities of whom we hear so much.

The secret of Wicked's success

The Musical 'Wicked' is a massive transatlantic success. 

What's the secret of Wicked's success?

1. Wicked champions the outsider, Elphaba is picked on for her colour and refusal to conform. We see many redeeming qualities in Elphaba: she sticks up for her teacher when he loses his voice and he falls into disrepute because he's not human. Opening scenes often feature arrival at school or college but Wicked pulls it off with humour, poking fun at the apparently sincere good witch, Glinda. But later on, the wicked witch Elphaba releases flying monkeys which cause havoc.

2. Wicked has style: strong female leads, an emerald and black colour scheme, brilliant lighting and stage effects  clocks to rival Harry Potter and Philip Pullman's Dark Materials and a cross between Victorian steampunk and 1930's American costumes. There are enjoyable touches of irony and parody. The Wizard sings a song in 1920's style reminiscent of King Herod's song in Jesus Christ Superstar 'Try it and See'.

3. It even begins with a disabled character, NessaRose whose relationship with her sister Elphaba promises an emotionally intelligent sub-plot

For all its style and popularity, the plot chunters off into nowhere land with arrests, escapes, re-arrests. The most glaring travesty of Elphaba's feisty nature comes in a stick fight with Glinda over Fiyero, the self-confessed shallow male lead.

Sadly Tessa Rose is portrayed as a mistake resulting from her parents' desire to avoid having a second daughter like Elphaba. "She's my fault," says Elphaba. The disabled sister and daughter is a millstone for all to carry. [as in Sleepovers by Jacqueline Wilson] Thus reinforcing widespread perceptions.

In one powerful scene, Tessa is cured by Elphaba's spell and stands for the first time. It must be hard for anyone in a wheelchair to witness this escapist denial of the meaning of chronic illness which harks back to sanitised fairy tales. 

Tessa Rose's fate is sealed off-stage when she is later crushed by a falling windmill and we are left to imagine that her recovery may have been temporary so she was unable to get out of the way in a sudden malevolently stirred-up storm.

The victory of style over contemporary resonance is complete.

You can print paperbacks for free

You can print paperbacks for free

there must be a drawback, or is there?

Amazon's Create Space site enables you to transfer an e-book into a tree book free of charge. You don't have to be a computer wizard. The only costs are for an ISBN which is not essential and a book cover which you can make yourself. 

ISBN

I chose to buy an ISBN from Nielsen because I wanted to link my e-book to the paperback on Amazon. I also intend to publish several novels as e-books and in paperback, so I bought ten ISBN's. As you can see on the Nielsen site, the cost is £13.20 for each ISBN. 

I wanted my book to appear on Nielsen's Pub Web site so it can be found by book buyers and librarians anywhere in the world.

Book cover

If you have experience of using Photoshop you easily mock up a paperback cover. Create Space offer some tools to make the task easier, including advice on font size, spine width and content of blurb at the back. 

Research

I visited libraries and bookshops and studied the covers of books that had similar themes to mine. I tried to read the meaning of each cover. I opted for a face-on half portrait because it said: 'personal story of a young girl' [Lauren] and left space for the title.

I prefer drawings to photographs; they seem more personal.

I chose to distort my title using perspective like a yellow painted sign on the road; Lauren's van parks in a disabled bay outside school. I didn't want a wheelchair on the  cover because I thought it would put readers off. Lauren is a feisty young woman who happens to be on wheels. 

I made a collage and photographed it. The cut out letters against the tarmac give a striking adolescent feel to the cover.

The result was quite raw so I smartened it up and added a subtitle and author name using Create Space's editor. It took a number of tries to get the picture right but it wasn't technically difficult. Here's the finished result as it appears on Amazon:

I chose quotes from the text for the back cover and used the same design in the background. You can see how basic my drawing was using only 'Paint'. I wanted the drawing to look like as if it had been done by a teenager.

The heart is important. My book is a romance and I noticed that romances invariably have pink hearts on them. I chose to give my heart a rough, distressed look, the road to love isn't smooth.

You can read an extract from my book here.

In later blogs I'll tell you my experience of pricing, promotion and marketing.

Special Needs for communication

A Guardian article by Rhiannon Lucy Cosslett why special needs matter got me thinking about inclusion. Rhiannon's brother is severely autistic.  

She remembers a speech therapist saying: 'no point in teaching him to speak because he'd only talk rubbish.' Ignorant attitudes like this harm our young children and prevent them reaching their full potential. and he was mocked in school. Jamie Oliver tells a similar story of being labelled as having special needs.

Rhiannon's family had to fight hard to get training for her brother; not everyone is able to take social workers to court as her family did.

Mainstream schools could do more to discover the potential of young people who don't fit the normal pattern. We need 'special schools' but can't we link them closely with neighbouring schools to allow joint lessons interchange and enable people with special needs to take GCSE's.

In researching my novel Speak to Me I visited special schools in Nottingham and Bath. In one case, I discovered that no special needs pupils were enrolled in GCSE's even though the students included children with hemiplegia, cerebral palsy and autism which are often associated with islands of ability or even high intellectual abilities.

The Prince's Trust quotes research that reveals the effect of low expectations: young people with poorer GCSE results were often depressed and felt rejected, many turned to alcohol or drugs.

To find out more about inclusion in schools, contact

All together now

Parents for inclusion

Allfie

or read my book: 

Speak to me: Mute, witty and dangerous 

now available on Kindle and in paperback.

How sad and other mistaken assumptions

My aim as an animator is to make models of disabled characters to challenge the assumptions people have about disabled people. 

 If I put a female character in a wheelchair people ask, 

"Will she be wearing a bandage?"

No, she's not ill.  

"A girl in a wheelchair, how sad."  

No, it's not sad, it's everyday life for a lot of people.

I'm searching for the right materials and a suitable setting, experimenting with 2D and 3D images.  I'm attempting realism, meaning contemporary, everyday settings.  People say: 

"Doesn't a wheelchair have giant back wheels?" 

No, look around you, they don't.

More to follow, with moving images.

Why I wrote Speak to Me: mute witty and dangerous

In Speak to Me: mute witty and dangerous Lauren aged 14 starts school, only, she can't speak, she needs help to point at letters on a board.  

Lauren's nerves are on edge after overhearing comments as she comes in to the classroom. She wants to learn enough to get to university and also she's like to get to know the boys. Classmate Anthony learns how to help Lauren speak and after a series of misunderstandings Anthony gets called into the head's office with a serious charge that could affect his schooling forever.

I wrote Speak to Me while studying for an MA at Bath Spa University. I found few novels for teenagers explored the drama of life in a wheelchair.  It's a page-turning story that makes you think.  It is possible to be inside the head of someone who can't speak without help and there's plenty of drama on all sides.

Speak to me is available as an ebook on KIndle here:  Speak to Me and it will soon be released in paperback.

Percentage Medicine, scourge of our times.

Random controlled trials [RCT's] are used to detect benefit from giving treatments to prevent stroke.  But randomised trials depend on weeding out atypical cases and expecting everyone in the study to take their treatment as prescribed.  It ignores the narrative of the patient's life and herds all patients with a condition together, assuming that they are identical.  Normally compliance with treatment is checked regularly and people who drop out are accounted for in the analysis.  

A common measure derived from the studies is 'number needed to treat' [NNT] in order to prevent death or recurrence. How many people need to take common treatments to prevent a further stroke?  What would your estimate be? 5, 10, 15?

Opinions and estimates vary but it is not unusual for doctors to prescribe treatments that have a NNT of over 100, that is 99 people may take the treatment and experience side effects for one person to survive who otherwise would have died. You could call this 'percentage medicine' which follows from the bias of RCT's away from lifestyle changes and towards drug treatments. 

Lifestyle changes such as increasing exercise and weight loss are more difficult to standardise and outcomes are less clear.  Multiple prescribing is the result: anti-platelet drugs [eg aspirin], ACE inhibitors [lisinopril] and statins to lower cholesterol levels.  These may all be continued into advanced age when changes in memory, sight, hearing and interaction between all the treatments prescribed are largely unknown.  Compliance with treatment is almost certainly lower in 'free range' people when compared to well motivated research subjects.

 These treatments work but only in a proportion of cases, sometimes a very small proportion of patients can be shown to benefit from this approach, like 1%.

What else could we do? Drugs will never be the answer, though big pharma would like us to think so. The biggest advances in health have come from public health interventions: immunisation, clean water, improving diets.  We could apply what we already know.  Educate, but you can't force people to exercise more and lose weight. We could be preventing stroke a lot better if we had individualised exercise regimens with incentives for reaching major goals.  Sounds like socialised medicine. The uncontrolled marketing of fatty and sugary foods and slimming remedies has kept the economy ticking over but growth in these areas is impacting on the nation's health. Increasingly sedentary jobs are putting more people at risk.

  Cycling needs to be made safer and why can't cars offer more exercise while you're driving?

Habits of Lowly Effective People:

The Power of Utterly Pointless Habits

Self help manuals are inclined to imply that some people are more effective than others; at what?  Making money of course.  Whether anyone should try to emulate such individuals is questionable.  They would probably all agree that some modicum of idealism is needed in addition to the desire to make money.

   If we understand Dale Carnegie's thesis [Author: How to Win Friends and Influence people] it is that successful people use their social skills to win people over; they talk to the lift operator.  This is a perfectly adequate rule of life, though Dale probably had a streak of vicious self promotion which made him such a successful author.  

   A wealth of sacred books have been devoted to the theme of 'how to improve yourself' with varied success.  The fact is that we can improve ourselves but often at the cost of self delusion and doing down our competitor.  

   What gives business people and their less successful acolytes the right to lecture us on 'Positive Thinking'?[which amounts to saluting success while the ship carries on sinking].  Dealing with setbacks is above all a spiritual adventure. 

 Humans have the ability to ignore and override all evidence to suggest that they are wrong.  This capacity is widely used by criminals, politicians, tricksters and holy people to achieve the most breathtaking morally sound or dubious feats.  We should not doubt the resilience of the human frame to recover from the most extreme losses but equally we can't expect to obtain the insight 'how is it done?' easily.  We live in a crisis of attribution in which 'the reason I'm successful is almost certainly not the reason I think'.  

  While 'strivers' are completing marathons on adrenaline the work of carers of adult disabled people create a daily miracle of survival which earns no fame and little praise. A habit of talking to people helps both.  

Equally an utterly pointless habit such as playing solitaire or listening to music can ease feelings of stress and worthlessness just as much as a self help manual. 

Grace Williams says it Loud

I'm searching for a Young Adult book that gives a central role to a character with severe cerebral palsy.  Emma Henderson's Grace Williams says it loud [Sceptre, March 2011] comes closer than any to a realist account of profound disability, read my review here:
http://www.amazon.com/review/R2U95R94JQ7Q6J
It has its moments of profound injustice which, I suppose matches the paternalistic times: 1950's and 60's institutions and it has a resourceful and enjoyable main character who holds the book together. Emma manages to avoid the well known dangers of disabled characters: undue pathos, early death, escape into fantasy, implausible cure, mind over matter or special powers. 
More to come: Sarah Hammond's The Night Sky in my Head which features a main character with learning needs is due for release next year by OUP.  And I'm told there are more titles in the offing in this challenging area.