Written by Dotty Winters

Voices

Pictures worth sharing

A scrapbook created out of a mixture of love and desperation served as an unexpected foundation for Pictures to Share – an organisation which helps those suffering from dementia. Dotty Winters meets its founder, Helen Bates.

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Pictures to Share products can help keep the lines of communication open for people suffering from dementia

In the early 1990s when Helen Bates’ mother was dying of dementia, she never received a diagnosis.

But even if she had, there were such limited options available to medical professionals that diagnosis didn’t offer a route to any form of treatment.

An architect and a mother of three, Helen supported her father as he cared for her mother. As the disease progressed Helen’s mum was unable to read newspapers or magazines, or watch television programmes.

Without access to support or resources for carers, Helen created a simple scrapbook for her mum. The book provided an activity that she could still enjoy – something familiar which she could share with her daughter and granddaughter.

Little did Helen know that her very personal creation would end up providing the foundations for a project which has been helping those suffering from dementia and their families for the best part of a decade.

In 2005, Helen founded Pictures to Share, a social enterprise which is one of the UK’s most established producers of visual media for people with mid-to-late stage dementia, offering an alternative to the complex, confusing and fast paced style of modern media.

From books like Proverbs and Sayings in Pictures and The Countryside in Pictures to DVDs about childhood, work and leisure, the Pictures to Share product range has been, and continues to be developed through research and feedback from those who use them.

Helen and her small, dedicated team have discovered and shown how the right pictures and moving images can help family and carers continue to communicate with those with advanced dementia in an enjoyable and meaningful way.

Pictures to Share books only feature pictures that are more likely to be understood and enjoyed by people with dementia. They are simple, clear and often colourful, with no confusing backgrounds or content that is difficult to interpret.

They are chosen because they provide an opportunity for telling stories or for linking in to themes that the person with dementia will recognise. Most of all they are powerful and beautiful pictures.

These days there is a range of resources and activities for dementia suffers. But looking through what is on offer, it’s hard not to notice how childish some seem.

My quick search turned up some books which look suspiciously similar to the ones I have for my two-year-old, including some colouring books. By contrast Pictures to Share’s books wouldn’t look out of place in any selection of coffee-table tomes.

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Helen Bates founded Pictures to Share in 2005

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Pictures to Share books are designed specifically for people suffering from late stage dementia

Helen says: “It’s important that materials for people with dementia are something that they and their carers can enjoy together; something that anyone can enjoy. Dementia doesn’t change what people are interested in per se, but it can change how people are able to access that.

“Our books are designed for everyone to enjoy. It’s important that we don’t patronise people who have dementia.”

It would be easy to assume the establishing of Pictures to Share was the result of a plan based on her experience of caring for her mother, but Helen insists this wasn’t the case.

Her father died a few years after her mother. With her children grown up and a small amount of money from her father’s will, Helen decided to fulfil a long-held ambition and headed back to school to retrain as an illustrator.

But despite her talent (she won the Macmillian prize for illustration, and still undertakes commissions), the memory of the impact of that scrapbook stayed with her.

“I researched what was out there for people with dementia, and there was nothing,” she says. “It seemed so obvious that there was a need, and it was frustrating that no-one was responding to it, so I realised I was just going to have to do it myself.”

Helen quickly discovered the huge difference in the needs of people with dementia – the single biggest killer for women in the UK – as the disease progresses from early-stage, through to the mid and late stages.

Much of what we hear and see about dementia is based on the early stage. People are much less willing to talk about later stages when loved ones can become unable to communicate or understand their situation; anxious, withdrawn, depressed and de-motivated or even aggressive; when they may forget who their family are and when physical deterioration leads to increasing difficulties with personal care.

It’s important that materials for people for dementia are something that they are their carers can enjoy together; something that anyone can enjoy. Dementia doesn’t change what people are interested in per se, but it can change how people are able to access that.

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Pictures to Share remains unusual in the market, making products which are specifically designed for these later stages.

“Our products are the icing on the cake – we know that,” says Helen.

“If people are not receiving an acceptable standard of basic care and medical support then our products aren’t going to be a priority. But, where basic needs are met, it is important that the other needs of people with later stage dementia aren’t forgotten and ignored; it is important that they can continue to engage with those around them.”

As a social enterprise, Pictures to Share makes a profit which it reinvests in its social aims, by designing new products and undertaking research into what works best. A number of people have been interested in the organisation because of the quality of the products, the customer loyalty and the esteem they are held in by carers, medical professionals and dementia experts.

However, Helen has steered away from investors and partnerships that she doesn’t feel share her commitment to improving quality of life without also having a need to generate a profit for investors.

She says: “Organisations working within health and social care who are there to try and ensure people with the most severe needs are looked after, shouldn’t also be trying to create profit for investors.

“The two are incompatible. When basic care needs are not being met on a national scale, and the care staff who look after our most frail and dependent elderly are massively underpaid, there is no room for creaming off financial profits.

“All organisations need to make some money to survive, but this shouldn’t be the primary focus for a social enterprise; first and foremost we need to be sure we are making the difference we set out to create.”

As well as continuing to expand the Pictures to Share product range, Helen is also preparing for her next challenge. She is working on a massive project to try and launch a dementia friendly TV channel. There is no doubt it’s a big ask, but dementia awareness is at an all-time high, and the fast-paced, high colour, fast cut nature of much programming make most TV inaccessible to people in the later stages of dementia.

Having spent some time with Helen, and seen what she’s achieved so far, it’s a knocking bet we’ll be seeing an addition to our TV channels in the not too distant.

For more information on Pictures to Share, visit www.picturestoshare.co.uk

Dementia is a collection of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. Dementia is caused by damage to the brain, either as a result of a disease (like Alzheimer’s) or through trauma or strokes.

Dementia is the single biggest killer for women in the UK, and the third largest killer for men (Office of National Statistics 2014). This terminal, progressive illness can leave suffers unable to communicate, distressed, confused and agitated.

Statistics from The Alzheimer’s Society tell us that:

* By 2015 there will be 850,000 people with dementia in the UK.

* There are 40,000 younger people with dementia in the UK.

* There will be one million people with dementia in the UK by 2025.

* Two thirds of people with dementia are women.

* The proportion of people with dementia doubles for every five-year age group.

* One in six people aged 80 and over have dementia.

* 60,000 deaths a year are directly attributable to dementia.

* Delaying the onset of dementia by five years would reduce deaths directly attributable to dementia by 30,000 a year.

* The financial cost of dementia to the UK is £26 billion every year

* There are 670,000 carers of people with dementia in the UK.

* Family carers of people with dementia save the UK £11 billion a year.

* 80% of people living in care homes have a form of dementia or severe memory problems.

* Two thirds of people with dementia live in the community while one third live in a care home.

* Only 44% of people with dementia in England, Wales and Northern Ireland receive a diagnosis

Help, support and information for people suffering from dementia and their families is available from a number of charities and support organisations, including:

The Alzheimer’s Society

Alzheimer’s Research UK

Dementia UK

Dementia Friends

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Written by Dotty Winters

Nascent stand-up, fan of fancy words, purveyor of occasional wrongness, haphazard but enthusiastic parent, science-fan, apprentice-feminist.