Swindon Dementia

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Actress Phyllida Law highlights the strain on families caring for a loved one with dementia

Phyllida Law, mother of actresses Emma and Sophie Thompson, has described the burden of caring for a parent stricken by dementia.

The 83-year-old, whose extensive roll-call includes appearances in the 1993 film version of Much Ado about Nothing and more recently as a guest star in Foyle's War, looked after her mother, Meg, for several years as the degenerative disease took hold.

In a case study for a new report from Alzheimer's Research UK, which focuses on the impact of dementia on the people who care for those with the disease, Phyllida describes the strain that caring for her Mother Meg put on her as her mother's health deteriorated.

The Alzheimer's Research UK report, "Dementia in the Family: The impact on carers", comes as new polling reveals that nearly a third (31%) of non-retired people aged 55 and over are worried that their family members will have to care for them in later life.

The report reveals how those looking after family members with dementia can become socially isolated and can find it difficult to cope.

Through interviews with four families who are living with the condition, the report explores the stress and cost faced by carers, revealing how those looking after family members with dementia can become socially isolated.

Hilary Evans, chief executive of Alzheimer's Research UK, said: "For many people the festive season is a time to think about family, but for countless families across the UK dementia is taking a heavy toll, leaving people socially isolated and struggling financially.

"The experiences highlighted in this report will be recognised by people up and down the country who are dealing with the challenges of caring for a loved one with dementia."

If we could delay the onset of dementia by five years, by 2050 we could reduce the number of carers by a third. 

“A diagnosis of dementia ripples far beyond the person affected, it touches whole families, and we owe it to them to do all we can to tackle it.”

Read the full report by clicking on the link here to Alzheimer's Research UK website:

Dementia in the family : The impact on carers​

Article courtesy of Local Dementia Guide

Tips for managing Christmas with someone in the later stages of dementia

Christmas is traditionally a time for getting together with family and friends. But if one of your guests, or someone you live with, is in the advanced stages of dementia, the change of routine that comes with getting together with other people can be fraught with difficulties, leaving you tense and anxious.

Dementia alters people's perceptions which is likely to make it difficult to do things and celebrate in the way you have in the past. This does not mean you have to scrap your plans for Christmas altogether though.

Maizie Mears-Owen, Head of Dementia Services at Care UK, suggests some simple ideas that can make a big difference and help the whole family enjoy the Christmas festivities.

Forward Planning

"Begin to prepare them in advance by talking about who will be there, and who those people are to them - niece, grandson, friend. Photographs are very useful for this as it will help them to recognise faces."

Photographs can also be useful because people with dementia may be living in a different decade. It is common for people to believe they are at a younger point in their lives. If this is the case, use older photos to explain who people are - and don't get upset if your relative gets names wrong.

Muddling might happen

"If your mother calls you 'mum', do not get embarrassed and do not correct her - she is just at the point in her mind where you are her mother's age, or she sees something in you that reminds her of her mum," says Mears-Owen.

"Embrace it. Be 'Mum'. Help her with her food and with opening her presents - she will find it reassuring and calming. Contradicting her will make her feel agitated and confused."

Young children seem to take it all in their stride. However, teenagers can find it upsetting. "Not being recognised or seeing out-of-character behaviour can sometimes be confusing, embarrassing and hurtful," adds Mears-Owen.

She suggests talking the issue over together as a family before Christmas, and also recommends Matthew Snyman's book The Dementia Diaries (available from Amazon), which follows four young people dealing with their grandparents' dementias.

Christmases Past

Christmas Eve is the time to start tapping into family traditions. Mears-Owen says: "If you prepare your vegetables on Christmas Eve night, encourage your loved one to take part. They will feel useful and it can start conversations about Christmases past. Reminiscence is vital to increasing wellbeing and something we do across our 114 care homes. Get them talking about their childhood Christmases as well as yours."

Dementia can take a toll on verbal communication skills. "Music is a great way to connect with someone, as well as being fun," says Mears-Owen. "Even if they cannot sing, they can enjoy tapping out a rhythm and joining in, so why not try a carol service or sing along with a CD?"

Make room for calm

Christmas mornings can be frenetic, especially if there are young children in the house. Set aside a quiet and comfortable place for your relative. "The hurly-burly of present opening, noisy toys and over-excited youngsters can prove too much for someone whose senses have changed," Mears-Owen explains.

"To avoid confusion and anxiety, offer your relative a cup of tea away from the chaos and, if they want it, sit with them and chat."

The festive feast

The centrepiece of Christmas is the family lunch. Ann Saunders, a Care UK operational director with a personal interest in nutrition in older people, says: "Dementia can take away depth perception and narrow the field of vision, so keep things fairly clear.

Hand out crackers when you are going to pull them, limit the amount of crockery and cutlery on the table and use a tablecloth that contrasts with the plates. White-on-white blends in and the person will not know where the plate ends and the cloth begins.

"I find a blue or bright yellow plate works best: the meal stands out as there is very little food in those colours. Do not use plates with patterns as these can cause optical illusions and confusion.

"Try not crowding the plate," she adds. "Appetites are small and lots of food adds to confusion. Keep the meat in one section of the plate, the carbs in another and the vegetables separate. It is attractive and clear.

"Taste buds age and older people often develop a sweet, sour or savoury tooth to compensate. Try adding lemon or lime for that extra zing, use plenty of fresh herbs and try adding a teaspoon of honey to the water you cook the carrots in. The most important thing is that everyone indulges in their favourite foodie treats throughout the day."

Remember, just because someone is living with dementia doesn't mean they can't join in the fun and indulgence with the rest of the family. A few simple changes can make a big difference and help everyone have a fulfilling Christmas celebration.

With thanks to Care UK. Article by Abi Jackson, first published on home.bt.com

Swindon resident becomes champion of Alzheimer’s Research UK

A CHAMPION has been crowned in Swindon for her dedication to a national charity and fundraising exploits.

Amanda Franks, 41, was made a champion of Alzheimer’s Research UK last month following years of stoic support for the charity’s cause as a fundraiser and spokeswoman.

Her mum, Cathy Davidson, has been living with early-onset Alzheimer’s for seven years and was only 58 when she received the diagnosis.

As a champion, Amanda joins a small but growing group of 35 people nationwide who have made outstanding efforts to help Alzheimer’s Research UK in its mission to defeat dementia.

“It’s a case I’m absolutely passionate about and do an awful lot of awareness and fundraising for,” she said.

“It’s nice to get the recognition you’re doing something good.”

Amanda Franks 

The director of Frankly Recruitment in Kembrey Park said it was never something she had considered in just supporting the charity, but the penny dropped when she went away on a charity-organised course for spokesperson training.

She found, on a course with more than a dozen others, she was the only attendee not classed as a champion of the charity.

Over the past 18 months, Amanda has raised over £15,000 for the charity.

To achieve this she has enlisted the help of family and friends to organise numerous fundraising activities, including a live concert in 2014, The Gig to Remember, held at the Oasis in Swindon.

The concert featured world renowned Beatles tribute band the Bootleg Beetles and was attended by over 1,300 people.

Amanda has also shared her story with the media to help increase public understanding of Alzheimer’s disease and the impact it can have on individuals and their families.

“When you have somebody in your family with Alzheimer’s it’s so out of your control, there is nothing you can do to make it better,” she said.

“This was my way of making a difference. The future is in your own hands with your own life, but it is difficult with this disease.”

Jodie Vaughan, community fundraising manager at Alzheimer’s Research UK, said: “We greatly appreciate Amanda’s hard work, dedication and enduring support for the charity and we are delighted to make her a champion of Alzheimer’s Research UK.

“Her motivation for raising money and awareness of our work is unwavering.

“Her efforts to help in this way are bringing our scientists ever closer to finding better forms of diagnosis, preventions, new treatments and an eventual cure for Alzheimer’s disease and other forms of dementia.

“There are 850,000 people in the UK living with dementia today, including nearly 7,000 people in Wiltshire.

“Research has the power to defeat dementia and Alzheimer’s Research UK is leading the charge.

“We rely on public donations to fund our crucial research and it’s thanks to the commitment of people like Amanda that we are able to increase the profile of dementia research and continue our vital

Article by Beren Cross. Republished from http://www.thisiswiltshire.co.uk/ 13/11/15

Warning not to withdraw Donepezil too soon

Researchers from University College London (UCL) have brought into question the current practice of withdrawing use of the commonly prescribed drug Donepezil in the later stages of Alzheimer's disease.

In a recent trial following the progress of 295 people with moderate to severe Alzheimer's, it was found that discontinuing use of the drug in the advanced stages of the disease actually doubled the risk of the patient being placed in a nursing home within a year.

Donepezil is licensed for the symptomatic treatment of mild-to-moderate Alzheimer’s disease, and is usually withdrawn when a patient’s symptoms worsen due to a lack of perceived benefit in severe Alzheimer’s, and to save on NHS costs.

The research might now call this practice into question. 

Donepezil, which is available generically, can cost as little as £21.59 per year, whereas the average cost of residential care for people with dementia is in excess of £30,000 per year.

Professor Robert Howard, who led the study, has been careful not to overplay the research findings.

“We are not talking about a neuroscience breakthrough. We are not saying that the treatment is actually slowing down Alzheimer’s disease. The treatment is continuing to improve symptoms in a way that helps patients to maintain independence and it is doing it for longer and later into the illness.”

He added: “It’s a modest effect but it’s an important effect if it is your mother, wife or someone close to you.”

Click here to view a summary of the research published by The Lancet 26/10/15

Why exercise in older age is more important than ever…

Only 1 in 10 adults over the age of 65 get enough physical activity. Yet, more and more research seems to be suggesting that to maximise your chances of staying healthy and living well with dementia, you need to engage in activities that are going to stimulate you both mentally AND physically.

Now recent research in Finland has added weight to the growing body of evidence that suggests that exercising into your 70s and beyond can drastically reduce the risk of falls that result in broken bones and other serious injuries.

For women the risk of injury is made worse by osteoporosis,or thinning bones, which becomes common when production of the hormone oestrogen declines after menopause.

To study the effect that exercise could have for women in reducing their risk from falls, researchers at the UKK Institute for Health Promotion Research in Finland took a group of 149 women aged 70 to 78 years at the start of the programme and divided them into groups to undertake a programme of supervised workouts 3 times a week for one year. Some did balance training, some strength training to build up muscle tone, some a combination of the two, and some no exercise at all.

After five years of follow up, 61 women had a total of 81 fall-related injuries.

Compared to the women who hadn't exercised, the participants who had followed the programme of combined balance and strength training had a 51 percent less fall-related injuries and 74 percent less fractures, the study found.

Doing only balance workouts, or just strength training, didn’t appear to reduce the risk of injuries or fractures. It was the combination of both types of exercise that proved most beneficial.

The findings bolster previous research that has already proved that improving balance and muscle strength is an important factor in protecting against fall-related injuries. But interestingly, this study goes on to suggest that the benefits lasted even when the intensive physical activity stopped.

Saija Karinkanta, Lead author of the study, draws the conclusion:

“It is useful to train a little bit harder and intensively so that your physical functioning really improves. After that, you can maintain the benefits with lighter, less intensive exercise.”

As the saying goes, Its never too late to start.....and if intensive training may seem a step too far, even low impact work-outs such as walking, swimming or Tai Chi can all help.

Article courtesy of www.compassionatecareforall.org

How you could help dementia research

As the number of families affected by dementia grows ever greater, public awareness of the need to prioritise dementia research is at last coming to the fore. And Government pledges, championed by David Cameron​, to identify a cure or disease modifying treatment by 2025, is now helping to increase the impetus for new research. 

Recruiting willing research volunteers

Although dementia charities report more people willing to take part in research than ever before, researchers still find recruiting volunteers time consuming and expensive. Professor Rowan Harwood, Dementia researcher at the University of Nottingham explains, 

"A big issue is that data protection laws do not allow researchers to approach people with dementia directly - we need your permission to be told what diagnoses you might have, and in many respects that is very wise. But it does prevent research."

Join Dementia Research

To make the process much easier, the NHS has launched Join Dementia Research - a website designed to encourage people to take part in research studies and make it much easier to match volunteers with potential research projects.

The short NHS video clip below explains more...

Researchers are always in need of volunteers. Whether you have a diagnosis of dementia or are fit and healthy, you may be able to help.

For further information, click here to visit the Join Dementia Research website.

Supermarket plastic bag levy to benefit dementia research

If, like me, you found yourself cursing at the supermarket checkout this week when you realised you'd forgotten your carefully prepared pile of re-usable shopping bags, you can at least be cheered by the knowledge that each of those 5 pences you had to fork out, will be destined for a worthy cause.

​From 5th October, compulsory charges for single use carrier bags were introduced to encourage recycling and reduce pollution. Supermarkets have to pay out 0.83p of the 5p charge in VAT, but are expected to donate the rest to charity.

Asda, Waitrose, Iceland and Morrisons have joined forces to announce they will donate the profits from bags to support the construction of a world-class dementia research centre at UCL in London.

By coming together and pooling the money raised, the 4 supermarkets hope to raise as much as £20 million in the first year alone.

The research centre at UCL is estimated to cost £350 million to build and currently has a spending shortfall of £100 million which it is hoped the money from the supermarkets will go some way to reducing.

The Dementia Research Institute will bring together researchers from across UCL and UCLH to lead national and international efforts to find effective treatments and improve the lives of those with dementia.

UCL have guaranteed that no overheads will be taken from the money raised, so all funds will go directly to support dementia research.

Dementia already devastates the lives of far too many families across Britain – we urgently need to find more effective ways to prevent, delay or treat the diseases that cause it. There are real prospects for progress if we bring together the most able scientists and clinicians and support them in their research. This remarkable initiative by some of the UK’s leading supermarkets could make a real difference to accelerating that research.
Professor Nick Fox
UCL Institute of Neurology

Despite government commitments to find a cure for dementia by 2025 and ever -increasing public awareness, the amount of funding for dementia research remains a fraction of the amount spent by cancer charities each year, so this boost from the 4 big supermarkets is very welcome.

It’s enormously encouraging to see major retailers with huge influence over the public putting themselves forward to help solve the dementia challenge.

With a global aim to produce a disease-modifying treatment that can bring relief to people with dementia by 2025, dementia research has big ambitions and will need big initiatives to realise them.

Hilary Evans  
Chief Exec, Alzheimer's Research UK

Article courtesy of Local Dementia Guide first published 11/10/15

“Use it or Lose it” says leading dementia expert Professor June Andrews

In determining the way dementia develops in an individual, lifestyle is often more important than genetics, warns Professor June Andrews, Director of the Dementia Services Development Centre at the University of Stirling.

Speaking at the Edinburgh International Book Festival, she told the audience that the "use it or lose it" approach is therefore the key to keeping the brain active, engaged and healthy into older age.

"Get out there and start doing puzzles, or bingo...

Professor June Andrews

“It’s a combination of genetics and life. Absolutely use it or lose it. Get out there and start doing puzzles, or bingo, or anything just do something for your brain. We do know that if you have more brain development then you have more resistance to dementia."

Professor Andrews described meeting a woman in America whose five siblings all had dementia, yet the ones who had been to university had developed the condition a decade later than the ones who had not.

“The idea in Scotland, where we have got almost half of the young people going to university now, you might say what’s the good of a degree in social networking but the person has been made to sit exams at a certain level so we might find 60 or 70 years from now that that might help with a reduction in dementia.”

She warned that the condition is often misunderstood and contradictory research had misled people into believing there could be a single cure. Prof Andrews said: “Dementia is a cluster of symptoms, so dementia includes that memory loss that everyone talks about, but it also includes difficulty in working things out, difficulty in learning new things".

“These are all the symptoms but the diseases that cause all of these things are varied.”

The main risk factor for dementia is simply growing old, she warned, so dementia rates seem to have risen in line with ageing population.

However she welcomed research published last week by Cambridge University which found the dementia levels might be stabilising. She said:

“Either we started from the wrong number, and we were overestimating all the time, or, and I find this much more interesting and exciting, it’s possible that the kind of advice in this book is being followed by people, and so there is an easing off of the number of people affected.”

Some inherited dementia is not affected by lifestyle choices but improving vascular health through exercise and diet was “really looking like it was starting to make a difference” among many elderly patients, she added.

Article originally published in The Scotsman 26/08/15

Professor Andrews has recently published a highly recommended book on how to make it possible to live well with dementia :

Dementia: The One-Stop Guide
Practical advice for families, professionals, and people living with dementia and Alzheimer's disease

Click here to read a book review​

10 helpful ways to ward off depression

​

The links between depression and dementia are deep-rooted. Many of the symptoms are shared between the two, and too often, people just assume that the problems they are experiencing are an inevitable part of their dementia and something they must just put up with.

But help is at hand

In fact however, treatment for depression is not only available, but often proves very effective for those in the early and mid stages of dementia.

Estimates suggest that as many as 40% of all those diagnosed with one of the many forms of dementia will experience a period of depression at some point. Apathy, loss of interest in hobbies and activities, social isolation, trouble concentrating and sleeping, and general withdrawal are all signs of depression. Often though, the cognitive impairment caused by the dementia hampers the person’s ability to articulate their feelings adequately, making it difficult for them to seek the help they need.

The first port of call should  be the GP, who will be in the best position to explore the best possible options for drug medications, counselling and complimentary therapies.

The most effective treatment is likely to be a combination of medicine, counselling and activities that bring about reconnection with the people and activities that bring happiness and contentment.

Nobody can beat depression alone, but with the support of family and friends, try these proven successful ways to boost mood and combat isolation:

  • Plan a predictable daily routine.
    This can provide reassurance and help schedule activities the person finds challenging at the time of day they are best able to cope. 

    • Celebrate small successes and occasions.

  • Seek out local support groups 
    These can be a huge source of help both for the person with dementia and their carer. It can be a huge source of comfort to know that you are not alone in dealing with this and there are others in a similar position. They provide a valuable source of information and access to other services and support available locally. Groups can provide fun and meaningful activities geared specifically to those with memory and cognitive problems, and are a great way of maintaining social contacts.

  • Plan in regular exercise, particularly in the mornings, as this can be a fantastic mood enhancer.

  • Make a list of activities, people and places the person enjoys.
    Try to visit/incorporate these more frequently into your diary.

  • Acknowledge the person’s feelings and frustrations while continuing to express positive messages about how you hope they will feel better soon.

  • Provide lots of reassurance the person will not be abandonded.

  • The right music can really lift spirits so make a playlist of the person’s favourite songs to listen and sing along to.

  • Find ways the person can contribute to family life and remember to recognise his/her contribution.

  • Talk to one of the national charities offering support and advice.
    Admiral Nursing Direct provides dedicated dementia support- their telephone Helpline is open Mon to Fri 9:15am −4:45pm and on Wed and Thurs evenings 6-9pm on 0845 2579406.
    Or Alzheimer’s Society Talking Point provides a means of asking questions and seeking support from others in a similar position - visit their online forum on their website.

​

Swindon research team provide global breakthrough in tackling dementia

The news this week has been full of the potential breakthroughs in the treatment of dementia announced at the Alzheimer's Association International Conference in Washington. After a decade of research dead-ends, the announcement brings new hope, and as Beren Cross reports for This is Wiltshire.co.uk Swindon is at the very heart of developments....

DOCTORS and nurses in Swindon are at the centre of a medical breakthrough which has discovered not one, but two drugs which may delay dementia.

A team at the Kingshill Research Centre, which is one of the nation’s leading academic centres in dementia research, has been testing the two drugs for the past five years and had a breakthrough.

The team from Victoria Centre. Photo courtesy of Thisis Wiltshire.co.uk

At the Alzheimer’s Association International Conference in Washington DC last week, it was revealed solanezumab and Starbeam were two medications proven to slow down the debilitating effects of the disease.

Whilst solanezumab caught much of the international media attention, Dr Simon Manchip, clinical director for psychiatry in Swindon, believes the data presented for that drug was over-optimistic.

He said there was a 50 per cent drop out in patients on the solanezumab trial, which distorts the data presented, whereas Starbeam was much more promising.

Aricept is one of four licensed medications used around the world for dementia, but fades over time. Research suggests Starbeam boosts Aricept and allows people to live better lives, for longer.

The breakthroughs were the talk of the international conference and have given the team, based at Great Western Hospital’s Victoria Centre, a shot in the arm as they continue with their cutting edge research.

“It keeps you going because day in, day out, you are looking after people with dementia and at times it can be trying,” said Dr Manchip.

“We are simultaneously trying to move forward and find new treatments for such a destructive condition.

“It gives you momentum to carry on.”

The doctor has high hopes Starbeam will be brought to market in three years time, if test results continue to follow the current trend.

The team in Swindon collates its own testing group of patients from across the region and has led the way in dementia trials throughout the past 20 years, playing a role in the licensing of four different drugs down the line.

Emma Murray, clinical trial administrator, said: “When the study started in 2010 we recruited ten patients who participated in a monthly infusion.

“We are now about to enter the next phase of the study and look forward to being able to give more service users the opportunity to be involved in dementia research studies.”

The centre supports National Institute for Health research’s Join Dementia Research campaign, where readers can register their interest in participating in dementia research.

For more information, visit: joindementiaresearch.nihr.ac.uk.

Article originally published on www.thisiswiltshire.co.uk 30/7/15

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