“LIFE goes on – dementia is not a death sentence, it’s a life sentence,” says Sandy Read firmly. "Sometimes I get angry and frustrated but I don’t dwell on it. I’m just grateful for every day.”

YOLO is the brainchild of Lynda Hughes, dementia programme manager at SEQOL, Rachel Cockbill, dementia support worker at Alzheimer’s Society and Esther Jones, an occupational therapist with AWP, the region’s mental health service.

Together they were looking for ways to put patients and carers at the forefront of dementia care in Swindon, and allow them to set the agenda for local services and charities.

Dementia is an umbrella term for a set of symptoms including memory loss, difficulties with thinking, problem-solving or language and impaired judgement. It occurs when the brain is damaged, by diseases such as Alzheimer’s or a series of strokes.

Making Swindon a dementia-friendly town

Top of the agenda for YOLO is making Swindon a dementia-friendly place. This means encouraging shops, businesses and the local authority to rollout adequate signage and consider the difficulties sufferers face every day.

Most people think of dementia as affecting memory only, but it also impacts the way people perceive the world around them, including their sense of orientation, sight or spatial awareness.

“I have to have someone to go around Swindon with me because I get lost, but better signage would help,” explains Sandy, 69, who was diagnosed with dementia six years ago.

“My problem is public toilets – they tell you the way in but not the way out. I’ve got stuck many times, it’s stressful.

“What’s also dangerous is escalators. You don’t know if they’re going up or down. Better signage would not just help people with dementia but people with disabilities of any kind.”

An estimated 2,280 people are living with dementia in Swindon and nearly 7,000 in Wiltshire. As the population ages, the figure is only expected to grow over the next decade.

Changing attitudes to dementia

Encouraging a more upbeat approach to dementia – while not underrating the devastating impact of the condition – is another of YOLO’s goals.

While patients and their families face undeniable challenges, YOLO members are determined to show, through their own experience, that it is possible to lead a fulfilling life despite the relentless progression of the disease.

“I want to reassure people that although it’s not a pleasant diagnosis you still carry on,” says Harry Davis, 60, from Haydon Wick who was diagnosed five years ago.

“I believe that TV doesn’t portray the full experience. A lot of the adverts show someone who is very old sat in a chair. It doesn’t show the other side, when you’ve got early onset and you’re trying to lead as normal a life as possible.”

Lynda agrees: “It’s about changing perspective, it’s not all about loss. It’s a time like any other in your life to enjoy friendship, to experience new things. It’s a time for joy and happiness.

“We want to promote a less fearful view of dementia, and that’s where service users come into it.”

Community Involvement

To that effect, the group will be looking to visit schools and businesses and hold talks and training sessions.

It is all part of the open dialogue YOLO is hoping to create around memory loss in Swindon.

“People don’t want to talk about it much,” says YOLO member Ana Maria Wright, whose husband Thomas, 74, was diagnosed with dementia 10 years ago.

“They think they are going to catch it, so to speak. It’s like it used to be with mental health back in the day.

“They think when you’re diagnosed your life is finished.

“It’s not easy but life goes on, when you’re diagnosed you just have to adapt to it and your family does the same.”

YOLO co-founder Esther Jones, who works at the Forget Me Not Centre in Park South, says: “A lot of the services are quite reactive, by the time people come to Forget Me Not, for example, they have quite developed symptoms.

“It’s about being proactive and almost preventative in a way by raising awareness of how to live well with dementia before it’s progressed.

“It’s about making people’s lives easier. Your life doesn’t stop when you are diagnosed.”

The extent of the task ahead is enormous but YOLO members are far from daunted.

The Alzheimer's Society launched its 'Fix Dementia Care'campaign at a parliamentary event last week to gather the support of MPs from across the political spectrum.

​The campaign is aimed at improving the standard of dementia care in hospitals, after a recent investigation by the charity uncovered shocking variations between hospitals in England, along with too many examples of dangerous and inadequate care.

The investigation, which involved FOI (Freedom of Information) requests to NHS Trusts in England and a survey of over 570 people affected by dementia to gather first-hand testimony of dementia care in hospital, found too many people with dementia are falling while in hospital, being discharged at night or being marooned in hospital despite their medical treatment having finished.

The survey revealed that in 2014-15:

• 28% of people over the age of 65 who fell in hospital had dementia - but this was as high as 71% in the worst performing hospital trust.
• In 68 trusts that responded to the FOI (41%), 4,926 people with dementia were discharged between the hours of 11pm and 6am.
• In the worst performing hospitals, people with dementia were found to be staying five to seven times longer than other patients over the age of 65.

With approximately a quarter of hospital beds occupied by people with dementia, the Alzheimer's Society estimates that millions of pounds of public money is currently being wasted on poor dementia care and is therefore calling on hospitals to be more transparent and accountable to their patients.

As part of the campaign, Alzheimer's Society is making the following recommendations to fix dementia care:

• All hospitals to publish an annual statement of dementia care, which includes feedback from patients with dementia, helping to raise standards of care across the country
• The regulators, Monitor and the Care Quality Commission to include standards of dementia care in their assessments

Jeremy HughesChief Executive Alzheimer's       Society                 

Good dementia care should never be a throw of the dice – yet people are forced to gamble with their health every time they are admitted to hospital.

Poor care can have devastating, life-changing consequences. Starving because you can’t communicate to hospital staff that you are hungry, or falling and breaking a hip because you’re confused and no-one’s around to help, can affect whether you stand any chance of returning to your own home or not.

“We must urgently put a stop to the culture where it’s easier to find out about your local hospital finances than the quality of care you’ll receive if you have dementia. We are encouraging everyone to get behind our campaign to improve transparency and raise the bar on quality.”

The event at Parliament was well attended by 170 MPs and policy makers, and attracted some high profile support. Shadow Foreign Secretary Hilary Benn, Mental Health Minister Alistair Burt, Shadow Home Secretary Andy Burnham and Labour’s former deputy leader Harriet Harman were all among the attendees.

To read more of the statistics from the report visit the Alzheimer's Society website

Trowbridge-based firm Priority IT is refurbishing second-hand computers and offering them to the public in return for a donation to Alzheimer’s Support.

The charity runs day clubs, home support and a wide range of community activities for people living with dementia in Wiltshire.

Priority IT managing director Kieran Thomas said: “We used to get all old customer equipment collected and recycled by a local provider. But our apprentice Adam Townsend came to me with the idea of doing something good with the computers, rather than just giving them away for recycling.

“So after some thought we came up with the idea of refurbishing the best computers and then offering them for a donation to Alzheimer’s Support, which does such valuable work locally.”

Alzheimer’s Support chief executive officer Babs Harris added: “We are delighted that Priority IT is launching this project in aid of our charity. The funds raised will be used to support people with dementia and their family carers here in Wiltshire. This is a fantastic initiative that will benefit everyone involved.”