Swindon fundraisers ride 300 miles to support Alzheimer’s charity

A Swindon couple have returned from an epic 300 mile bike ride to raise funds for an Alzheimer’s charity in the name of a close relative suffering with the disease.

Scott Thompson, 24, and girlfriend Levi Caviell, 21, set off from Swindon on August 27 and arrived in Land’s End, aching and tired, a week later.

The pair, who live near the town centre, rode for the Alzheimer’s Society after Levi wanted to do something for her grandma, Cheryl Rowlands, 68, who suffers from the disease.

Swindon fundraisers ride 300 miles for the Alzheimer's Society

Levi Caviell and Scott Thompson with their bikes

Levi, who works at the newly opened designer store Flannels, said: “Nan fell ill with Alzheimer’s at quite a young age and I wanted to help her because I don’t get to see her that often.

“It means the world to me to say I achieved something like this and it has taught me that we don’t appreciate what we have until it is gone.”

Scott, who works as a plasterer, described the challenge as “the toughest thing either of us has ever done”.

He said: “Some days we would ride five miles and it seemed like the hardest thing ever, and on other days we would do more yet it would seem easier.

“It was the first big bike ride we have ever done. We did a few test runs beforehand, but soon realised that we hadn’t trained enough.”

They are not sure exactly how much they have managed to raise for the Alzheimer’s Society, but Scott reckons it will be somewhere in the region of £2,000 when all donations are in.

“The whole family has been really supportive and it has made me think about doing more for charity in the future,” said Levi.

The trip took 316 miles in total. At one point the pair got lost and ended up cycling over Dartmoor Moor, something they both found particularly challenging.

They pitched a tent when the weather was nice and stayed in B&Bs on the nights it was bad.

They reached Land’s End at around 8pm on Monday night and caught the train back to Swindon the next day, arriving home on Tuesday evening.

Scott’s mum Kim Thompson, 50, said: “It is a fantastic achievement. They had no previous experience and just wanted to do as much as they could to help Levi’s nan.

“I feel really proud and I’m chuffed to bits for them, I think they have done amazing. It is a big thing to take on when you are not used to cycling.

“I’m just glad they're both back home safe.”

Article by Thomas Haworth, courtesy of www.thisiswiltshire.co.uk

Could diabetes drugs point the way forward for treatments for Alzheimer’s?

ALZHEIMER’S disease and diabetes are so closely related that drugs used to control blood sugar levels could also slow the progression of dementia, according to new research.

Many Alzheimer’s patients also have Type-2 diabetes and until now scientists believed mental decline could only come after the development of the metabolic disorder.

However, experts at Aberdeen University have now proven that the degenerative brain disease can also lead to diabetes in the first study of its kind.

Lead researcher Professor Mirela Delibegovic

The team, led by professors Bettina Platt and Mirela Delibegovic found the conditions are so closely related that medicines currently used to regulate glucose levels in people with diabetes may also alleviate the symptoms and progression of Alzheimer’s.

Exploring the links between Diabetes and Alzheimer's

The groundbreaking work at Aberdeen began four years ago when the experts discussed aspects of their specialities, with Platt leading an Alzheimer’s research team and Delibegovic heading work on diabetes.

“You cannot look at a disease in complete isolation. If you have a disorder of the brain, that can have quite a powerful impact on other parts of the body. That is not a one way street.

It really is a vicious circle but at the same time it gives us new ideas about interventions and therapeutics.”​

Professor Bettina Platt
Lead Researcher, Aberdeen University

The group developed a new model of Alzheimer’s disease and found that increased levels of a gene involved in the production of toxic proteins in the brain not only led to dementia-like symptoms, but also to the development of diabetic complications.

Platt said: “Around 80 per cent of people with Alzheimer’s disease also have some form of diabetes or disturbed glucose metabolism. This is hugely relevant as Alzheimer’s is in the vast majority of cases not inherited, and lifestyle factors and co-morbidities must therefore be to blame.

“Until now, we always assumed that obese people get Type-2 diabetes and then are more likely to get dementia. We now show that actually it also works the other way around. Additionally, it was previously believed that diabetes starts in the periphery – the pancreas and liver – often due to consumption of an unhealthy diet, but here we show that dysregulation in the brain can equally lead to development of very severe diabetes, so again showing that diabetes doesn’t necessarily have to start with your body getting fat, it can start with changes in the brain.”

She went on: “This study provides a new therapeutic angle into Alzheimer’s disease and we now think that some of the compounds that are used for obesity and diabetic deregulation might potentially be beneficial for Alzheimer’s patients as well.

“The good news is that there are a number of new drugs available right now which we are testing to see if they would reverse both Alzheimer’s and diabetes symptoms.

“We will also be able to study whether new treatments developed for Alzheimer’s can improve both, the diabetic and cognitive symptoms.”

The research is published in the journal Diabetologia and the team is now working with brain tissue banks and a pharmaceutical firm to take its findings forward.

However, Platt cautioned that they are unlikely to find a universal treatment for patients.

She said: “It’s unlikely to be effective for everybody. It’s quite a diverse group of patients, it’s a complex problem. We need to look at this much more holistically. Researchers need to come together. Our understanding of what the causes are is still very fragmented. We must understand much better why one person can have healthy ageing and the other one not.”

Article by Kirsteen Paterson for The National , first published 22/06/16

How could telecare help you?

What is telecare?

The term 'telecare' is used to describe a system or device that monitors a specific situation in the home and then enables help and support to be summoned if needed.

What form does telecare take?

Telecare comes in many forms but some of the most commonly used systems include sensors, alarms, movement detectors and video conferencing. These can be particularly helpful for anyone living with dementia. Telecare services can support personal safety and promote independence. ​Uses could include:

  • reminder services - for example, medication reminder phone calls
  • warning of potentially dangerous situations - for example, smoke, gas or flood detectors
  • summoning help in an emergency - for example, a personal alarm service
  • monitoring long term health conditions - for example, glucose levels for diabetics

How do telecare systems work?

telecare base unit and sensors

Devices in the home are connected via a telephone line or over the internet to a support centre which can summon help when needed.

Most telecare devices will have a base unit which connects to the user's phone line and which receives signals from sensors placed around the home and/or a pendant button or wristband button worn by the user. The base unit will contain a speaker and microphone which allows the user to have a conversation with the support centre. The microphone is quite sensitive so users can be some way from the base unit and still hear and be heard by the operator at the support centre. 

Telecare services have traditionally been provided by a community alarm or monitoring service provided by the local authority. However it is now sometimes possible to set a system up privately.

Types of telecare systems available

Telecare wristband
Community Alarm

The recipient of the alarm system wears a pendant or wrist-strap that can be pressed to summon help if they become anxious, confused or need help in an emergency.

Medication reminders
Telecare pill dispenser

To receive reminders, an automatic pill dispenser is linked to a call centre. If medication is not taken on time, a phone call from the support centre can be used as a  prompt, or an alert can be raised so a relative of friend can be informed.

Sensors

Flood detectors - sensors can be fitted to the skirting boards or floor in the bathroom and kitchen. If taps are left running and cause a flood, the system will turn off the water and raise the alarm.

telecare heat sensor

Temperature detectors - Extreme changes in temperature, either high or low, will be picked up and a warning issued. This can be particularly useful to warn of pans burning dry or room temperatures dropping to the point which is detrimental to health.

Smoke alarms and gas detectors- these can be used to ensure safety particularly in the kitchen to detect if gas appliances have been left on unlit, or items have been forgotten and are burning on the cooker or in the oven.

Movement Sensors

Sensors placed by the bed can alert someone else in the house that the person might need help going to the toilet in the night, or movement sensors could be used to trigger lights coming on automatically in the hallway or bathroom.

Similarly a system can be set up that will trigger a response if the front door is opened or if the person does not return within a specified time.

Telehealth Units
telehealth monitor

Telehealth covers the electronic exchange of personal health data from a patient at home to medical staff at hospital or GPs to assist in diagnosis and monitoring. With the appropriate equipment, a telehealth system can monitor blood pressure, blood glucose or oxygen saturation, which could assist with monitoring conditions such as diabetes, lung problems or heart conditions.

For further information, The Disability Living Foundation offers a wealth of advice about all forms of telecare and assistive equipment on its websites 'Living made Easy' and 'AskSara'. Click on the links here to view:

www.livingmadeeasy.org.uk

www.asksara.dlf.org.uk

For local telecare services available in your area contact Social Services.​

Old computers help Wiltshire charity ‘Alzheimer’s Support’

Wiltshire  firm Priority IT is raising valuable funds for a local Alzheimer’s charity by bringing old computers back to life.

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.”

For more information about the scheme visit www.priority-it.co.uk or telephone 01225 636000

To find out more about Wiltshire charity Alzheimer's Support and the services they offer, visit www.alzheimerswiltshire.org.uk/

Article courtesy of Swindon Business News online 4/2/16

Lend your support to the campaign to ‘Fix Dementia Care’

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.”

Jeremy Hughes

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

To add your voice sign up to the campaign at
www.alzheimers.org.uk/fixhospitalcare

Article first published at Local Dementia Guide

YOLO comes to Swindon

YOLO (You Only Live Once), the first patient/carer led group in Swindon, has been launched to improve the lives of those living with dementia, and attempt to break the stigma too often attached to memory loss.

The dozen or so members have formed the 'think-thank' to bring some much-needed positivity to discussions about dementia.

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.”

Swindon dementia group YOLO

Rachel Cockbill, Esther Jones, and Lynda Hughes, Founders of YOLO

This sentiment is shared by the rest of the group, whose aims are straightforward, if daunting...
to promote understanding of dementia,
to come up with solutions to improve the lives of those affected by the condition and
to inject much needed positivity into the overwhelming sombre view of dementia.

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.

“Our motto is, ‘Don’t make decisions about us without us’,” says Lynda. “People with dementia need to be involved in decisions about them and the services they use.

“We wanted to get people with dementia and memory problems together to discuss how we could use their experience to grow understanding and help to make a difference in Swindon, make it an even better place to live for people with dementia or memory problems.

​“It’s the only group in Swindon of people with dementia actively campaigning for better services.”

Lynda Hughes 
Dementia Programme Manager, SEQOL

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.”

The ambitious group plans to meet every fortnight at the offices of mental health organisation SUNS, on Victoria Road, which the charity is allowing it to use free of charge.

While not technically a support group, YOLO is keen for people with dementia, their carers and anyone concerned they may have memory problems to get in touch.

To send your questions about dementia or memory loss to YOLO, or share your concerns about symptoms you or a friend or relative are experiencing, email swindonyolo@gmail.com or you can send a letter to YOLO at SEQOL, North Swindon District Centre, Thamesdown Drive, Swindon, SN25 4AN.​

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.

"I like to pick a new challenge every single day,” smiles Sandy,  “I think we can make a difference in Swindon.”

Article first published by The Swindon Advertiser 22/02/16

Let’s give Alzheimer’s What 4…local fundraising music night

Fundraising for Alzheimer's Research UK

A night of music and fun is being organised by Dyson employee and Swindon resident, Rachel Brown, to raise money for Alzheimer's Research UK.

Enlisting the support of well loved local band, the What 4s, the event to be held on April 2nd  at John Bentley School, Calne, has been given the catchy title of "Let's give Alzheimer's the What 4" and will include a fundraising raffle and auction with a range of prizes donated by local companies, including a cordless vacuum signed by Sir James Dyson himself.

Rachel is determined to raise as much money for the dementia charity as she can after a close family member was diagnosed with Alzheimer's a year ago.

As well as the music night, Rachel, who works as a customer services advisor for Dyson at their Malmesbury plant, is also undertaking the London Marathon on behalf of the Dyson company, who have chosen Alzheimer's Research as their selected charity.

Hopefully my fundraising will make a difference.

I’ve run the London Marathon once before, back in 2009, and had wanted to run again ever since. When Dyson chose Alzheimer’s Research UK as its charity and the opportunity came up to run for them, I knew I had to put myself forward – it means so much to me.

The charity night is a chance to drive up the total. The What 4’s are a fantastic band, and a lot of them have also been affected by dementia so they jumped at the chance to get involved.

People have been really generous in sponsoring me so far, and I hope lots of people will come along to enjoy the night and support this important cause.” 

Rachel Brown
Fundraiser

The Let’s Give Alzheimer’s What 4 takes place from 7.30pm to midnight on April 2 at John Bentley School in Calne.

Tickets cost £7.15 each and are available at http://bit.ly/20WGZLq.
To sponsor Rachel visit http://uk.virginmoneygiving.com/RachelBrown17

Check out the What 4s  Facebook​ page

Flood your home with light recommends leading dementia expert

Simply increasing the amount of light in your home, both natural and artificial, can make a huge difference to someone coping with dementia suggests Professor June Andrews, Director of the Dementia Services Development Centre (DSDC) at the University of Stirling.

Physiological changes in the body mean that everybody’s eyesight deteriorates slowly but surely over their lifetime. People over 75 require twice as much light to see comfortably than normal lighting standards require, and nearly 4 times as much as an average 20 year old.

Add to this the challenges that dementia throws at you, such as difficulties with spatial awareness, problems adjusting to contrasts of light, and fear of falling, and the need for clear bright light becomes obvious.

Professor June Andrews   

People with dementia are usually older, and the older we are the more likely it is that we will start to have impairments of eyesight.

The lens, the clear part of the front of the eye, yellows over time, so it is as if the older person sees the world through a pair of yellow goggles that get thicker every year. Every older person needs to have more light to counteract this, but it is even more important if the person has dementia.

In dementia the person finds it harder to remember where anything has been put, so having lots of light means they don’t have to remember so much because they can see.

Simply increasing the level of light can therefore make a very real difference to a person’s comfort and ease of life.

Here are our suggestions for 5 easy ways to flood your home with light...

Check your light bulbs!

Make sure you use bulbs of the maximum wattage that each of your light fittings will safely take. Now is not the time for dim, mood lighting, and remember that older energy saving lightbulbs that you may have had for several years lose their luminosity over time, (as well as often being very slow to brighten up) so it may well be useful to change them even if they are, technically, still working fine.

Modern LED bulbs give out a good clear light, and because they work on a very low wattage, can prove an effective way to increase the amount of light your lamp, wall light or chandelier can generate.

Consider replacing some of your light fittings.

Replacing a single pendant fitting with a 3 arm chandelier, or a 3 arm arm chandelier with a 5 arm one needn’t be expensive but could make a significant difference to the amount of light given out.

Add a lamp or angle-poise light.

This could brighten a dark corner and help prevent potential trips or falls, or provide specific task lighting where it is needed to aid focus and concentration.

Investigate the use of light sensors.

An increasing range of sensors are now available. Some provide the reassurance of allowing you to leave the electric lights on all the time, ensuring there will always be an adequate supply of light, with the sensor simply switching the lights off if the natural light reaches a required level.

Other sensors are motion operated which could be useful to light specific pathways such as a dark hallway and up the stairs, or the way from the bedroom to the bathroom.

Maximize natural daylight.

Daylight helps you produce the hormone melatonin which is responsible for setting your internal body clock, making it easier to sleep at night. In older age, and particularly in those with dementia, production of melatonin is reduced, which is why people with dementia often turn night into day. Increasing exposure to daylight is therefore a good thing. Clean the glass in you windows, remove obstacles and vegetation that may be blocking light entering the window from outside, and remove heavy blinds and/or curtains that obscure the window inside.

If direct sunlight produces annoying glare, simple lightweight net curtains can solve the problem without reducing the light. They also have the added advantage of preventing the glass in the windows becoming like a mirror at night, which can be disorientating for someone with dementia, reducing the chance of them misinterpreting their own reflection and becoming upset.

Professor June Andrews has an international reputation for her work in dementia research and development of methods to improve care for those living with the condition. Our suggestions here about ways to improve lighting levels in the home are taken from her most recent publication "Dementia : The One Stop Guide" .
Click here for a full book review.

Article courtesy of Local Dementia Guide

State of the art dementia care home prepares to open in Swindon

Building work is on course to prepare for the opening of Abbey House, a state of the art dementia care home in the Abbeymeads area of Swindon.

Due to open in June 2106, the development will be the result of a £8million investment by Milestones Trust, a charity set up to support people with dementia, mental health needs and learning disabilities living in Bristol and the surrounding areas.

CEO of Milestones Trust, John Hoskinson said:
“As a care provider with almost 30 years of expertise behind us, we have built a reputation on providing the best possible care and support services where they are needed, so are delighted to be bringing this expertise to Swindon, providing residential care to support those living with dementia in the local area.”

Dementia specialist care and nursing

Abbey House will provide care for 73 residents over 3 floors. Each floor is composed of small modular units of 6-7 en-suite bedrooms, each with their own open plan living and dining rooms and seating areas, to create a homely feel to the care home.

The design has been produced with a focus on creating a comfortable environment which will allow residents to stay in a familiar environment as their care needs change by providing a mix of both residential and nursing services. It meets Stirling Gold Dementia Care standards, a framework of standards that ensure the needs of those living in the home with dementia are met.

 State of art dementia-friendly  design

Examples of the specialist design include the use of transparent panelled wardrobes so people can easily see what is inside, enhanced mood-appropriate lighting, and the positioning of beds so that residents have an immediate view of the bathroom.

Residents will be able to enjoy landscaped gardens with wander paths so they can exercise in a safe and familiar environment, whilst enjoying dementia sensory gardens, with safe plants appealing to touch, taste and smell. 

The Marketing Suite for the Development was recently opened by North Swindon MP Justin Tomlinson and people are now being welcomed to come and have a look.

For more information about Abbey House, click the link here to visit Milestones Trust's website

You can find Abbey House at 40 Richardson Road, Swindon SN25 4DS

Open Days are being held on Sunday 24th April 10:30 - 2:30pm and Monday 2nd May 1- 4pm

But f you can't make the open days, call 01793 987 730 to make an appointment to visit during general opening hours from Wednesday 13 April at the following times:

  • Wednesdays 10am - 4pm
  • Thursdays 3 - 7pm
  • Fridays 10am - 4pm