Author Archives: Swindon Dementia
Author Archives: Swindon Dementia
Dementia affects hundreds of thousands of people every year, causing their brain to slowly decline. Staying active and healthy can help to slow down the spread of dementia and improve the quality of life for those with the condition. In this article, Nicky Roeber, Online Horticultural Expert at Wyevale Garden Centres, explains how you can create a dementia-friendly garden to help your loved one enjoy the outdoors safely.
Dementia is one of the biggest causes of disability in later life, with 1 in 6 people over the age of 80 suffering from the condition, and one person developing it every three minutes (Alzheimer’s Society). While there’s currently no cure, activities such as gardening can help to improve the well-being of someone with dementia.
The therapeutic and health benefits of nature are well understood, and by creating a safe outdoor space for your loved one, you can help to stimulate their senses and keep their brain active. Below you will find my advice on how you can do just that.
The first step to designing a dementia-friendly garden is to come up with a plan, and this needs to consider the user at each step. A good way to ensure the garden meets your loved one’s needs is to get them involved in the design process and incorporate elements that they will enjoy, whether that is certain plants, features, or animals.
As the designer, it’s important to consider the issues your loved one might face and try to minimise or eliminate them ahead of time. This means using surfaces that are non-slip, installing hand railings, using gentle ramps instead of steps, avoiding poisonous or sharp plants, and removing potential trip hazards.
When designing a garden for someone with dementia, it’s important to take into consideration their mental state, and how this may change. For this reason, it’s wise to ensure that the garden is fully enclosed to stop them wandering off and ensure their safety. All boundaries and gates should be secured with locks, but they can be covered with garden elements such as shrubs and bushes to make them look more natural and less intimidating.
The layout should be simple and easy to understand, with paths that loop back on themselves to prevent getting lost. The paths also need to accommodate your loved one, so if they have trouble walking or require a wheelchair, consider creating wider paths and include plenty of areas to sit down and rest. It can also be a great idea to incorporate signs pointing to different elements of the garden so they can easily find their way around.
Gardens are already enjoyable on their own, but you can also fill them with plenty of stimulating activities and features to keep your loved one engaged. This can be based around their personal likes and dislikes. For example, if they’re a bit of a green thumb, planting a vegetable patch will allow your loved one to grow and care for their own produce. Equally, if they enjoy watching birds and other animals, think about how you can attract them to the garden.
Another thing to think about is stimulating the five senses. Water features and wind chimes can help bring the garden to life, while incorporating great scented plants such as thyme or lavender provide stimulation for their sense of smell. Make sure to add in lots of beautiful bright colours in the form of flowers and plants and you’ve got your own sensory garden.
Watching animals can bring many benefits to people with all sorts of different conditions (Care UK), so bringing the garden to life by making it the perfect place for animals to gather is a great thing to do. Listening to birds can be incredibly relaxing, and making use of bird baths and feeders to attract them to the garden is a lovely way to draw them in.
Feeders can also be used to attract squirrels, while a mix of flowers such as lilacs and wisteria will bring the buzz of bees and butterflies. You could even leave an area of the garden as ‘wild’, making it a more natural habitat for all animals, giving you the chance to bring in hedgehogs.
Gardens are immensely enjoyable and can improve the quality of life for the elderly and those with dementia. Follow the tips in this guide and you’ll be able to create a space that your loved ones want to be in.
Fear can often prevent people worried about possible dementia symptoms from seeking the help and reassurance they so desperately need. But in a bid to remove the stigma surrounding dementia, Swindon Dementia Action Alliance are determined to help make Swindon a truly dementia-friendly place to live.
With the aim of improving understanding and awareness of the needs of people living with dementia, the alliance has teamed up with the Alzheimer's Society to provide free, hour long information sessions to help the whole community take shared responsibility for improving the lives of those affected by the disease.
Seeking help early is one of the alliance's primary messages.
"Fear of dementia can make people put their head in the sand and not go and see their GP about symptoms they may be having", explains a spokesman for the Alliance.
"However an early diagnosis can make a positive difference. There is no denying it will be an emotional time but diagnosis can lead to identifying services that can help, some welfare benefits you may be entitled to, and there are some drugs that can help keep people living with some types of dementia in the earlier stages for longer.
Of course, the doctor may also discover you don’t have dementia but a different condition that shows similar symptoms but can be treated in a different way, such as infection, thyroid problems and depression for example."
If diagnosis is made early it becomes possible to make plans and introduce changes that can have a significant impact on a person's ability to live well with the disease.
It's important to remember that diagnosis may provide a label, but life doesn't end there.
"After a diagnosis, someone won’t magically change overnight, the label will stay there, but who that person was before that label was applied is still there too. It’s important to remember the person and what makes them happy in life and continue with this where possible."
A few simple changes to the home environment can also make a big difference in making everyday tasks easier to cope with.
"When the environment is not quite right for someone living with dementia, it can make symptoms worse. A common symptom in people living with dementia are sight and perception problems. There may be nothing wrong with their eyes but how these signals are interpreted in the brain can go awry."
"A change in colour or contrast in a doorway threshold might look like a step, or a black mat on the floor might look like a hole, a door the same colour as the skirting and wall might become invisible. You can see how confusion and agitation may happen more often, especially if you need the loo but can’t find the way out of a room."
Staying active and maintaining social contacts is similarly important.
"Some of the difficulties faced by people living with dementia are not due to the damage to their brain but caused by difficulties in understanding and relating to their environment. In the same way, someone who has nothing to do may become withdrawn, this is not a symptom of the dementia but a result of what is happening around them and a lack of stimulation and purpose. Factors like the ones mentioned can be changed and this is really important to understand as it can help people with dementia to live well."
The information sessions run by the Alzhieimer's Society are an hour long, are free to attend, and everyone is welcome. Visit www.dementiafriends.org.uk to find a session running locally or watch their online video.
Source: www.thisiswiltshire.co.uk 10/05/17
Getting out and about, continuing with hobbies and socialising with friends are all important factors in helping people stave off the isolation that can so easily follow a diagnosis of dementia. So its great to hear that Rockin' Robin, Swindon Town's much loved mascot has taken the lead in helping the local football club do its bit to become a dementia-friendly place to visit.
Junior Development Officer from the club, James Sims, 21, said:
“I really enjoyed it and picked up some useful tips on how to help put people who are living with dementia more at ease and make adjustments so they can keep enjoying football, both as a player and supporter. I didn’t realise that dementia isn’t just about losing your memory, so this was a real eye opener.”
Becoming a Dementia Friend, a national initiative by the Alzheimer’s Society, gives people a little bit of information to help those living with dementia feel valued and included in their community.
There are already around 3,500 Dementia Friends in the Swindon area, including more than 150 council staff and councillors, and it is hoped this number will continue to grow, as more people want to get clued up.
Dementia is a disease of the brain, which affects the way people think, speak and do things. It affects people’s moods and motivations, particularly if the disease affects the part of the brain that controls emotions. Although there is no cure, there is medication and also lots of things people can do to reduce the impact and speed of its severity.
Swindon residents can find out more about dementia and ways of coping with the condition at their local library, via The Reading Well Books on Prescription scheme. The 25 titles have been recommended by health experts and people with experience of dementia.
Councillor Brian Ford,Cabinet Member for Adults’ Health and Social Care, said:
“I’m delighted that Swindon Town Football in the Community Trust coaches and Rockin’ Robin have joined the scores of people in Swindon who are Dementia Friends. The more we’re all aware of and understand dementia, as individuals, businesses and part of the community, the greater support and empathy we can bring to those affected as well as their family and friends.”
Terry Pratchett was simply not prepared to just give up when he was diagnosed with Alzheimer's Disease in 2007. For the 7 years until his death aged just 66 in 2015, he worked relentlessly to raise awareness and understanding about dementia in all its forms, campaign and raise funds for the Alzheimer's Society and, inspiringly, write a further 7 novels, as well as start to record his own life story.
But behind this determination to keep going was a deep seated anger towards his illness which is revealed in a docudrama to be aired on BBC2 on 11th February.
Terry Pratchett : Back in Black, uses the notes from his unfinished autobiography to reveal his descent into what he described as "the haze of Alzheimer’s” and explore the childhood traumas that spurred him on to become one of Britain's most prolific and well loved authors.
The programme includes footage of Pratchett shortly before his death, and features an appearance from Rob Wilkins, the author's long-term assistant and collaborator on his autobiography.
In a report for The Times, David Sanderson writes...
In the programme, Rob Wilkins, who was collaborating on the unfinished autobiography, recalled the day in autumn 2007 when they both realised that ...“something strange had happened”.
He said that Pratchett had come into his office saying, “The S on my keyboard has gone . . . Come on, what have you done with it?”
Wilkins reveals that towards the end of his life Pratchett became increasingly angered by his disease. “He could see how it was affecting him, how it was tripping him up and I knew we were up against it for time. We had to get the words down and with that white heat, with that white anger driving him to write seven whole novels through the haze of Alzheimer’s.”
It was late in 2014 that Pratchett realised that his writing days were over.
“We had had a good day working on the biography and he said to me, ‘Rob, Terry Pratchett is dead.’
Completely out of the blue.
I said, “Terry look at the words you have written today. It is fantastic." And he said, ‘No, no, Terry Pratchett is dead.’”
The author, whose series of Discworld novels sold more than 70 million copies and made him one of Britain’s most successful authors, died in March 2015, aged 66.
In the BBC2 programme, Terry Pratchett: Back in Black, which stars Paul Kaye in the title role, Pratchett also sheds light on his “humble childhood” and why he became a writer.
The son of a mechanic and a secretary he was inspired by The Wind in the Willows and got a job in his local library which he said was when he “was probably at my happiest”.
He was bullied at school and had a “mouthful of speech impediments that left me with a voice that sounds like David Bellamy with his hand caught inside an electric fire. But it was not the kids that really got to me, it was the crushing of my boyhood dreams by someone 3ft taller”.
Pratchett says that Bill Tame, the headmaster of Holtspur School in Beaconsfield, Buckinghamshire, took a “rather vicious dislike to me” and thought that “he could tell how successful you were going to be in later life by how well you could read or write at the age of six”.
Pratchett was more interested in “climbing the desks than working at them”.
His novels, set in a world held up by four elephants balanced on the back of a turtle, were dismissed by critics despite their popularity with readers. In the programme Pratchett says that the “feeling of somehow being inferior” created from his school experiences and literary criticisms was “hard to shake off”.
This anger however, had carried him “quite a long way”. he explained. Of his knighthood in the 2009 new year honours, he added:
“Not bad for a boy who was told that he would never amount to anything.”
On his Alzheimer’s, Pratchett wrote:
“On the first day of my journalistic career I saw my first corpse – some unfortunate chap fell down a hole in a farm and drowned in pig shit. All I can say is that, compared with his horrific demise, Alzheimer’s is a walk in the park. Except with Alzheimer’s my park keeps changing. The trees get up and walk over there, the benches go missing and the paths seem to be unwinding into particularly vindictive serpents."
“Imagine you are in a very, very, slow-motion car crash, nothing much seems to be happening at all, there might be the odd banging noise possibly, a little crunching sound here and there, a screw might pop out and spin across the dashboard as if it was in Apollo 13. But the radio is blasting rock’n’roll, the heaters are on and it doesn’t seem all that bad, except for the certain knowledge that at some point your head is going to go smashing through that windscreen.”
“I always dreamt that when I died I would be sat in a deckchair with a glass of brandy listening to Thomas Tallis on the iPod. But I had Alzheimer’s, so I forgot all about that.”
Source: The Times 3/2/17
The Dementia Friends initiative from the Alzheimer's Society aims to raise public awareness of the difficulties people living with dementia face, and how everyone in the community can help support them to make life a little easier.
Peter Oliver, commercial director at Thamesdown, said: “All of our drivers are encouraged to sign up to be a Dementia Friend. Having Dementia can make people feel isolated and apprehensive about going out and so our drivers can spot the signs and make getting the bus easier, whether that’s giving them the time they need to board or use their ticket, or identifying when someone might be confused due to their dementia and helping them get where they need to be.”
Thanks to the efforts of the company's driver instructors, Paul Banham and Phil Bailey, who have trained as Dementia Champions, each bus driver will complete the dementia module as part of their customer training.
The training covers the common difficulties people with dementia experience, including memory loss, problems communicating and confusion about time and place, and what drivers should do in order to make travelling easier and a much less stressful experience.
It is brilliant to see Thamesdown Transport committing to raise awareness of dementia to their drivers and customer facing staff.
Bus drivers understanding a bit more about dementia will ease the difficulties people with dementia face, supporting them to travel and live independently for longer. This initiative is a major contribution to other work that is being developed in Swindon to ensure people with dementia are valued and included in their community.
So far 52 of the company's bus drivers have completed the training to become officially recognised as a Dementia Friend. They can be spotted by the blue flower badge they wear so why not watch out for them and say hello!
The study set out to test the effects of a Mediterranean diet high in fish, lean meat, legumes, nuts, whole grains, fruits, vegetables and healthy fats on 672 participants aged between 70 and 89 when they entered the study in 2004 at the Mayo Clinic Study of Aging.
Reporting on the study for Reuters, Carolyn Crist explains...
Participants described their diets in a survey and underwent tests for memory, executive function, language, visual-spatial skills and cognitive impairment. Researchers also used magnetic resonance imaging (MRI) to measure the cortical thickness of several regions of the brain.
“It suggests that a healthy dietary pattern and specific dietary components have impact on biomarkers of brain pathology,” senior researcher Rosebud Roberts of the Mayo Clinic’s Alzheimer’s Disease Research Center in Rochester, Minnesota, told Reuters Health by email.
Roberts and colleagues found that elderly patients with higher Mediterranean diet scores had higher cortical thickness in all lobes in the brain. Higher legume and fish intake, in particular, was associated with greater thickness.
The research team reported their findings on July 25 in the journal Alzheimer’s and Dementia.
The study didn’t track patients long enough to see whether they actually developed any cognitive problems later on, however.
Yian Gu, an epidemiologist at Columbia University Medical Center in New York City, pointed out to Reuters Health that the study can’t show whether diet actually causes less brain atrophy.
Gu wasn’t involved with the new study, but she and her team have found ties between the Mediterranean diet, brain volume and total brain matter in their own research.
But “these are observational studies, not clinical trials, so a causal relationship can’t be established,” Gu said.
"It’s possible, for example, that changes in brain structure result in poorer dietary habits", Gu said.
“As many people know, we don’t have a cure for Alzheimer’s disease, and there is a long period of time before onset. It’s important to find lifestyle factors that could prevent or delay the disease,” said Gu.
Although a doctor can’t prescribe a Mediterranean diet to elderly patients, it doesn’t hurt to follow it, Gu said.
“Specifically," noted Roberts, "a high intake of fish, vegetables and legumes are beneficial, whereas a high intake of simple sugars and carbohydrates may have adverse effects on the brain."
As the centre prepares to celebrate an incredible 20 years of service, Marion Sauvebois paid the 5 strong team a visit to find out more. Below is her article for the Swindon Advertiser...
A single-minded band of carers drove the length and breadth of Swindon, lugging their own equipment around, setting up in halls and boxy meeting rooms, before packing up and zipping off again, wherever their dementia services were needed.
Encouraging patients to reclaim their lives through occupational therapy, recapture memories and, crucially, ward off the march of the condition was a unique and rather bold proposition when Forget-Me-Not was first pioneered in the town in 1996.
Now a formal centre in Park South, it marks its 20th anniversary this year.
“It has had many guises,” concedes centre manager and occupational therapist Darren Davies with a smile. “And even now after 20 years it’s still unique and revolutionary. There is nothing else like it in Wiltshire and there are very few services like it in the whole country.”
“We used to go from building to building,” recalls dementia support worker Sam Cullen, who joined the service 15 years ago. “It’s changed a lot over the years but I probably remember every single client. It’s the people who make this place.”
“It’s a shame that after 20 years, services like this are still so unusual,” adds her colleague Jan O’Donnell, Forget-Me-Not’s longest-serving support worker with 19 years under her belt.
Occupational therapy provides support for people whose health prevents them from doing the daily tasks.
Forget-Me-Not’s occupational therapist Esther Jones’s role is to identify strengths and difficulties users encounter in everyday life, whether it be memory related, going shopping alone, taking the bus, cooking, or dealing with money. This is done through a range of activities including physical exercise, domestic workshops or craft projects. The goal is to support people with early onset dementia to maintain, regain, or improve their independence by using different techniques, changing their environment, using more adapted equipment or prompt cards.
“We don’t think in terms of diagnosis, but in terms of individuals and how we can help them do the things they want and used to do,” says Esther, the only full-time member of staff among the centre’s five-strong team.
“One of the typical presentations of dementia is that people stop doing things because they lose motivation and confidence or because their families are scared or worried they might hurt themselves. So we help give them strategies and build things into their routine so they can carry on with their daily life.”
The centre, which is run by the region’s mental health services AWP, made Park South its permanent home nine years ago and currently welcomes 30 users.
Open three to four days a week, it offers users the chance to join in art workshops, take part in sports like badminton, hiking or sailing or enjoy pub lunches. Patients are also encouraged to prepare meals together. Everyone is assigned a specific task; for example shopping – especially if they struggle with disorientation – peeling vegetables or cooking.
An estimated 2,280 people are living with dementia in Swindon and nearly 7,000 in Wiltshire. 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.
Most people think of the condition 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.
“It’s really about bringing back some normality to their lives,” says Darren. “Encouraging people to do things, and carry on with as normal a life as possible.”
Over the years, Forget-Me-Not has proved a haven for scores of dementia sufferers.
“If you get something wrong here, you’re not judged,” says Sandy Read, 69, from North Swindon, who was diagnosed with dementia 12 years ago. “But it’s so different on the street. I need extra time to think now to be able to answer questions and if I’m in a shop I soon forget where I am. I’ve been standing in front of a shop, not knowing where I was and someone saw me and called me a stupid cow.”
At the mention of the offhand insult fellow users shake their heads in unison. “I’m not surprised,” one of them chimes in.
“The companionship we get here is very important,” continues Sandy. “We support each other emotionally. Friendship here goes beyond anything we would get on the outside.”
Forget-Me-Not has also been instrumental in helping 67-year-old Roy James to rebuild his sapped confidence and pull him out of isolation following the devastating diagnosis.
“This is my family now,” says Roy, from Park South, who was diagnosed at the age of 51 and joined Forget-Me-Not six years ago. “When you get this diagnosis you feel you’re going to forget everything you know the next day. As far as you’re concerned you’re the only one who suffers with this; it’s not until you come here that you realise you’re not alone. A lot of people get very isolated after they’re diagnosed. They don’t do anything and don’t go anywhere and you lose a lot more skills quickly on your own.”
“The sooner people realise that, if we had more centres like this there would not be such a need for care homes because people would live independently longer, the better,” says Sandy.
Esther nods: “We help the health services by helping people to live independently and stay in their homes longer. It’s more cost-effective. We want to help show that activities work and help people have a better quality of life. What’s important to remember is that we’re all the same inside and we all deserve a good quality of life.”
While sufferers and their families face undeniable challenges, Roy is determined to dispel the myths surrounding dementia and prove it is possible to lead a fulfilling life for many years, despite the relentless progression of the disease.
“We’re still people,” says the former bookshop manager, pausing briefly before adding firmly: “Intelligent people. Word-finding can be a problem occasionally and you gradually go downhill.
“I’ve blown up three cookers because I forgot they were on. I’ve lost some of my skills but with determination you pick them up again. There is a life after dementia. I woke up this morning and I had a pulse. It’s good enough to get up.”
“Because you can’t do something today doesn’t mean you won’t be able to tomorrow,” reasons Sandy. "That skill isn't always gone forever."
“You just have to keep using your brain and challenging it. You try hard and you go on living well. I have.”
Article by Marion Sauvebois, first published in The Swindon Advertiser 21/09/16
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.
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