Today’s post is my humble salute to the incomparable Professor Tom Kitwood, whose research interests included the details of dementia care practice and the long-term outcomes, when care is high quality. Several of his projects led to innovations now widely accepted in Britain and elsewhere.

A fan of the philosopher Martin Buber, one of his project ideas was to provide students with an opportunity to explore and develop the feeling, emotional and intuitive parts of themselves, so as to enrich their personal resources in their work and everyday life. Innovations of this kind have played a major part in improving the care of people with dementia, both in the community and in formal settings.

In 1992 he founded Bradford Dementia Group, initially a sideline. Its philosophy is based on a "person-centred" approach, quite simply to "treat others in a way you yourself would like to be treated".

In honour of Professor Kitwood, here's a wonderful poem by Stephen Spender . In it, heasserts that greatness can never be diminished; that as long as people remember those who were truly great, their greatness will never perish, because greatness never dies. Those who were truly great, inspire those of the next generation and this passion and spirit cannot be crushed by the din of our lives, as long as we don't forget the sacrifices that they may have made for us. 

I think continually of those who were truly great.

Who, from the womb, remembered the soul's history

Through corridors of light where the hours are suns

Endless and singing. Whose lovely ambition

Was that their lips, still touched with fire,

Should tell of the Spirit clothed from head to foot in song.

And who hoarded from the Spring branches

The desires falling across their bodies like blossoms. 

What is precious is never to forget

The essential delight of the blood drawn from ageless springs

Breaking through rocks in worlds before our earth.

Never to deny its pleasure in the morning simple light

Nor its grave evening demand for love.

Never to allow gradually the traffic to smother

With noise and fog the flowering of the spirit.

Near the snow, near the sun, in the highest fields

See how these names are fêted by the waving grass

And by the streamers of white cloud

And whispers of wind in the listening sky.

The names of those who in their lives fought for life

Who wore at their hearts the fire's centre.

Born of the sun they travelled a short while towards the sun,

And left the vivid air signed with their honour.

In my daily life as a dementia communications specialist, I try always to honour those who have passed and all those still here who are on their journey.

Sometimes this requires being serious, practical and work-like but often it requires playfulness: levity and fun as well.

Either way, encounters with people with dementia require us to be natural, centred, aware and thoughtful with extra dimensions that aren't so easy to define, such as being aware of ourselves as a third person might see us while we are connecting with someone; and "simply being" with them, drawing from our own deep wells of spirituality.

We have to change public perceptions of dementia. The whole nation is just beginning to learn about it; we need to develop more effective tools and resources to help people cope with it in their families; and we need to develop many more ways to engage with and support people living with it more meaningfully.

www.manyhappyreturns.org

Her company, Nutshell Communications has at its heart a novel and original tool which whe developed. It helps people work together better in order to improve the lives of those in receipt of health and social care. The electronic version of the tool will be launched formally at the beginning of May.

She also runs a terrific and generous-spirited blog "Whose Shoes" on which this letter by Karen was posted last Autumn. Karen tweets as @dazeinourlives reflecting on her her life looking after both parents with dementia. Her father died last year. "Dad went gently into that good night; Mum is raging against the dying of the light." Highly recommended. 

Here's Karen's Twitter thread from yesterday when she and her mother attended a friend's funeral...

"

It's obvious when Mum's anxious & distracted. The phone goes down with an abrupt bang a microsecond after her last word, which was not 'bye'

.

"I'd get to her sooner if I didn't have to stop every 5 minutes to answer her worried phone calls, which started at dawn.

"Some funerals are very proper, formulaic and bland. And some are just awash with love.

"Jolted to realise that this was a family scarred from the agony of the ravages of their Mum's dementia. I had no idea.

"Good to hear the word dementia and its tragic effects spoken about openly at a funeral. Mum didn't flinch, but I sensed her attention jolt.

"Crying at one's own loss at an unrelated other's funeral is no doubt very common. It's understandable, but it all feels rather wrong.

Thank you for sharing your insights Karen.

Thanks very much to Catherine Rees for sending me off to find it. I have facilitated some fascinating reminiscence workshops for the Stroke Association – more about them here

As they say in the blurb, "The brain is a much more flexible organ that previously thought and can be consciously retrained to be more emotionally flexible, understanding and sensitive. The emotional functions of the brain are interwoven at many levels. These maps provide an overview of the major areas of the brain involved in processing emotions."

It might be a useful reference for anyone interested in how our brains affect how we inter-relate with others – and oursleves.  

Melanie is a lovely, brilliant woman and Times columnist. She wrote about her love of horseriding on this humble blog here just days before her dreadful horse-riding accident in 2010 which broke her neck and back. As if this were not enough, she has since suffered another accident, breaking a leg in multiple places.

Since the original accident, she has charted her experiences in a series of candid and moving pieces in The Times magazine, called Spinal Column. 

Here's the article:

I choose, fiercely, to live - but only for now

"When asked about assisted suicide, I tend to pause and take a deep breath. You really want to know what I think? From the vantage point of a severely crippled body?

Honestly? You want the voice from the coalface? You don’t just want an opinion from some able-bodied moralist who presumes to know what’s best for me?

I find it ridiculous that an educated society, facing an unaffordable explosion in dementia and age-related illness, is prevaricating over this issue. It is, for me, almost inconceivable that the law lags so many decades behind modern realities; and is so out of step with the feelings of the vast majority of the population.

Where is the democracy surrounding death? The fact is simply this. Because of a religious minority, a few antediluvian pressure groups and the might of modern medicine, we are condemning growing numbers of elderly, terminally ill or disabled people to a terrible lingering twilight rather than a good death in the circumstances of their choosing.

And we are condemning the people who want to assist them to the threat of criminal prosecution. This is a scandal.

Today, apparently for the first time in nearly 40 years, MPs are to vote on assisted suicide (in 2006 a change in the law on assisted dying was defeated in the House of Lords by 148 votes to 100). Says it all, doesn’t it? The Conservative MP Richard Ottaway has secured a debate about the guidelines by the Director of Public Prosecutions on the issue, which have been in place since February 2010. The guidelines make it clear that prosecution is unlikely in cases of compassionate amateur assistance to die.

We must hope our MPs are bold enough to represent the nation’s views and support this stance. A recent poll found that 82 per cent of people believe that the DPP’s approach to prosecution is “sensible and humane”. Every single person I know is of the same general opinion: that there is no point keeping humans alive just for the sake of it, when they don’t want to be, in circumstances which we and they regard as intolerable. And if they need help to achieve a good death, in the comfort and peace of their own home, we should be able to give it to them.

Image: Thanks to FOTE Howbury Lodge Day Centre