Step out to support people living with dementia

‘Dementia is a huge, growing health crisis and it isn’t going to go away’ – Anna Devine, Alzheimer Scotland

AS the number of people living with dementia in Scotland continues to rise, Alzheimer Scotland is set to deliver its biggest-ever Memory Walk series in a bid to rally support for people living with dementia in communities across the country.

“There are over 90,000 people living with dementia in Scotland, and tens of thousands of unpaid carers, often partners and family members, supporting them,” said a spokesperson.

Alzheimer Scotland will hold over 25 Memory Walks in Scotland this autumn to raise vital funds to deliver support services and raise awareness of the discrimination, isolation and stigmatisation faced every day by people living with dementia.

There will be walks from Scalloway in Shetland to Hawick in the Borders –starting late August and finishing in early October.

Anna Devine, director of Fundraising, Marketing and Communications, said: “Dementia is a huge, growing health crisis and it isn’t going to go away.

“We must rally our caring and compassionate communities across Scotland to be part of our Memory Walks and embrace the message that dementia is everyone’s business.

“It costs Alzheimer Scotland millions every year to deliver vital services across Scotland. To sustain that support as the demand for our services increases, we need to raise more funds and more awareness.”

All funds raised will be used to help pay for vital Alzheimer Scotland dementia services across Scotland such as the 24-hour dementia helpline, dementia advisors, dementia nurses and dementia research.

Funds will also support important local activities, such as Dementia Cafés, support groups, singing and gardening groups.

Alzheimer Scotland’s Memory Walks are family friendly and accessible to all, and will be the charity’s primary outdoor fundraiser in 2015.

Memory Walks are also a significant part of Alzheimer Scotland’s campaign to ensure the voices of those living with and caring for people with dementia are heard.

Walks will include memories-themed and family activities and walkers will have the chance to honour loved ones by writing messages on a Memory Wall.

Registration is £10 for adults, £5 for 12-16 year-olds and free for under-12s. We’re asking participants to raise £100 in sponsorship.

Visit www.MemoryWalksScotland.org to find out more and to register.

http://www.memorywalksscotland.org

Britain leading the fight against dementia

Britain will expand its efforts to combat dementia over the next 5 years, the Prime Minister David Cameron said today as he set out a new, long-term strategy focused on boosting research, improving care and raising public awareness about the condition.

Britain has emerged as the world leader in fighting dementia since 2010 with investment in research doubled, hundreds of thousands of NHS staff given specialist training and 1 million ‘Dementia Friends’ taking part in awareness sessions across the country.

The Prime Minister wants to build on that momentum both in the UK and worldwide. The Prime Minister’s Challenge on Dementia 2020 is the next phase in the country’s effort to combat the condition and includes:

Over £300m invested in UK research

The UK government will invest over £300 million into UK research and medical innovation, backing the country’s world-leading science and medical sectors to lead the way in discovering the next big breakthrough. Annual investment in UK research is expected to double by 2025. Alongside this effort, an international dementia institute will be established in England within 5 years, helping to make the UK a world leader for research on dementia and medical trials. It is hoped the number of people taking part in dementia research will double in that time and a new online and telephone service to facilitate people taking part in dementia research studies will be launched next week.

New global fund on dementia

A separate multi-million pound fund will be launched within weeks to help establish a large-scale, international investment scheme to discover new drugs and treatment that could slow down the onset of dementia or even deliver a cure by 2025. The fund will see investors from the private, public and philanthropic sectors unite under a single scheme to finance a range of research projects identified by scientists as having the best potential for future success.

One million NHS staff trained

All NHS staff – some 1.3 million people – will now be required to undergo training in dementia so that people have the know-how and understanding to provide the best possible standards in care, from hospital porters to surgeons.

Three million more ‘Dementia Friends’

A world-leading call to action on dementia will see 3 million more trained to understand about dementia and how to best support people who may have the condition. Members of the public will be able to take part in free sessions in schools, church halls or their own work places. By 2020 the majority of people in England will be living in towns and cities that have been transformed into dementia-friendly communities , making shops, transport and other public places accessible to people with dementia. Business will play its part, with M&S, Asda, Argos, Homebase and Lloyd’s banking group training staff to become Dementia Friends.

Faster assessments, better care for all

Nationally, initial dementia assessments will take place in an average of 6 weeks, followed by better support post-diagnosis. GP diagnosis rates have increased from 42% to 59% in just 3 years but too many people are waiting up to 6 months for a full assessment, causing worry and uncertainty for people and their families. This will no longer be tolerated. There will also be a greater focus on the support given to people following their diagnosis such as giving people with dementia better information about the services available locally, as well as advice and support for carers.

Announcing the plan, the Prime Minister, David Cameron, said:

“Dementia is one of the greatest challenges of our lifetime, and I am proud that we are leading the world in fighting it.

“Because of the growing strength of our economy, we can invest in research and drug-development, as well as public understanding, so we defeat this terrible condition and offer more hope and dignity for those who suffer.

“That way, we can help make Britain a country that offers security in retirement for all.”

Dementia is a growing problem. In 10 years it is expected there will be one million people living with dementia in the UK.

The Prime Minister has made it a key priority to overhaul the UK’s approach to dementia, launching the Prime Minister’s Challenge on Dementia in 2012, and hosting the first-ever dedicated G8 event on dementia in 2013 to secure greater global cooperation between leading nations.

Significant progress has been made in improving health and care for people with dementia and carers, creating dementia friendly communities, and boosting dementia research.

This includes:

introducing the first-ever World Dementia Envoy, spearheading a global approach to the fight against dementia, driven through the G8 dementia summit in 2013
over 437,920 NHS staff have already received dementia training and more than 100,000 social care workers have received dementia awareness training, more than any other country worldwide
there are now 1 million dementia friends and 82 areas across England have signed up become dementia-friendly communities
diagnosis rates in the UK are the highest in the world, increased from 42% to 59% and on track to reach two thirds, ensuring more people than ever before get the care and support they need.
the UK has doubled research funding since 2009 to over £66m in 2015. This investment includes major research on issues that matter to people with dementia and their carers, such as the world’s largest – £20 million – social science research programme on dementia. It also includes Dementias Platform UK (DPUK), a 5-year £53 million public private partnership led by the Medical Research Council, the world’s largest dementia population study.
we have achieved a world-leading 52% fall in the level of prescribing of antipsychotic medication to people with dementia.

The number of people living with dementia worldwide today is estimated at 44 million people, set to almost double by 2030.

The cost to healthcare is huge, with dementia now one of the greatest pressures on healthcare systems around the world. It costs an incredible estimated £370 billion (US $604 billion) – about 1% of the world’s GDP. And, without urgent action this is set to rise.

However, global spending on dementia is at 5 times below research on cancer, with only 3 new drugs making it onto the market in the last 15 years.

The World Dementia Envoy, Dennis Gillings, said: “We have momentum. Awareness of dementia is increasing and action is being taken, and that will ensure the condition is managed far better in our society. More treatments are on the horizon but we must continue to invest in research and drug development. David Cameron’s outstanding leadership is having huge effect.”

Simon Lovestone, Professor of Translational Neuroscience, University of Oxford, said: “Dementia is the biggest single problem facing health services today. Worldwide, it poses an enormous challenge and demands an urgent and substantial response from governments and from the research community.

“In the UK we are rising to this challenge and with the Alzheimer’s Research UK Drug Discovery Alliance, launched this week, with the Dementias Platform UK launched at the beginning of the year and with the network of Biomedical Research Centres and Units for dementia funded by the NIHR, together with this commitment for substantial increased in funding for research and innovation, we are in a good position to lead, collaboratively across Europe, North America and beyond, a substantial fight against this terrible disease.

“The opportunity, which I think we have a realistic chance of delivering on, is novel therapies for dementia that will slow down, and perhaps even prevent Alzheimer’s and similar diseases.”

Hilary Evans, Charity Director, Alzheimer’s Research UK, said: “Over the past three years we’ve seen the Prime Minister’s Challenge play a pivotal role in creating a heightened focus on dementia and boosting the case for more research. Alzheimer’s Research UK is proud to have spearheaded the research challenge and successfully launched a number of pioneering global initiatives that will bring us ever closer to finding a cure.

“Since 2012, we’ve launched a £100 million fundraising campaign which, in addition to our existing research projects, will see a pioneering new Stem Cell Research Centre, a powerful network of world-class Drug Discovery Institutes to fast-track new treatments and a Global Clinical Trials Fund to allow new treatments to reach people sooner.

“Today represents an opportunity to reflect on the progress made so far, but we owe it to the 850,000 people in the UK with dementia to build on this work with even bolder commitments. It is vital that we continue to energise a movement across society to improve the lives of people with dementia and that research into the condition continues to be a priority.”

Jeremy Hughes, Chief Executive of Alzheimer’s Society, said: “Our researchers, staff and volunteers who are delivering support to people with dementia nationwide now sit as part of a national movement more than a million strong.

“Dementia Friends is truly changing attitudes and capturing the public’s attention. Together we are transforming lives today and reaching out for preventative treatments and a cure tomorrow. This government has rightly prioritised dementia. We would all acknowledge the work that remains to be done, but the PM deserves credit for the phenomenal achievement in getting dementia on the national and global agenda and this has resulted in significant progress.”

Sign up to help cure the stigma of dementia

‘We need the whole community to get on board and help us make Edinburgh a dementia friendly city’ – Cllr Ricky Henderson

A new awareness campaign has been launched today (Monday 16 February) to highlight the stigma associated with dementia, and the little things we can all do to help.

Devised in conjunction with Edinburgh residents who have dementia and their relatives, the campaign is part of ongoing work by the City of Edinburgh Council, NHS Lothian and Alzheimer Scotland to make Edinburgh a dementia friendly city.

Stigma and lack of understanding are major barriers for people with dementia according to 66% of people who responded to a recent Alzheimer’s Society survey. The research also revealed that 35% of people with dementia only go out once a week or less.

The new campaign includes a radio advert featuring people affected by dementia and a poster campaign for bus shelters, shops, pubs, clubs and pharmacies. It aims to tackle the stigma often associated with dementia and encourage people to be more aware of the condition. It also highlights how we can all play our part to make Edinburgh a dementia friendly city.

Six key ways to help a person with dementia and help them to feel included have been summarised as part of the initiative:

Learning more about the facts;
Show patience, for example if someone is having problems with their words;
Include them in conversations;
Being kind and show respect;
Helping them to join in;
Be a friend.

Health, Social Care and Housing Convener, Councillor Ricky Henderson, said: “With the numbers of people with dementia in Edinburgh continuing to rise, it’s important to address some of the myths about dementia which can lead to people feeling excluded from the community.

“There are little things that everyone can do to support and encourage people with dementia so that they feel confident enough to continue with day-to-day activities such as shopping and getting out and about. This may be a friend with dementia or someone that they meet in the course of their job or in their local neighbourhood. We need the whole community to get on board and help us make Edinburgh a dementia friendly city.”

Helen Hay, Regional Manager of Alzheimer Scotland, added: “Many people don’t understand dementia and think that a diagnosis means that a person is immediately incapable of working or carrying on with their daily routine.

“The campaign will help break down some of the barriers people face when they tell others they have dementia. Simple things like being included in the conversation and being asked to take part in social activities like going to the theatre can make a big difference to a person’s quality of life.”

A number of activities will take place in the city throughout the campaign, including dementia awareness sessions with retailers, councillors, Council and NHS staff. Members of the public are also being urged to become more dementia aware by signing up to Alzhiemer Scotland Dementia Friends programme, www.dementiafriendsscotland.org

A ‘dementia friendly’ performance of Plutôt La Vie theatre company’s production ‘Clean Sweep’, co-hosted with the Festival Theatre, is one of the events planned.

It will be attended by people with dementia, their friends and family and is specifically designed to provide an accepting environment and relaxed atmosphere for people with dementia.

Cerin Richardson, Learning and Participation Manager, Festival City Theatres Trust, said: “The Festival and Kings theatres have been developing work for children and young people with additional needs through their Relaxed Theatre programme and are delighted to be expanding their participation work to include people living with dementia and their families, so that they can take full advantage of the performances in our theatres.”

Find out more about the campaign at www.edinburgh.gov.uk/dementiastigma

Let’s talk about Dementia

STARTING this month, Alzheimer Scotland – Action on Dementia is launching a Let’s Talk about Dementia campaign. The campaign aims to open up more discussion on the subject of dementia and to raise awareness of the importance of early diagnosis.

Stigma, negative perceptions of people with dementia and perceptions that there is little or no help available are some of the reasons which prevent people from seeking help sooner rather than later. The negative perceptions also create fear and worry meaning that many families avoid talking about dementia.

The worry that you or someone close to you may have dementia is one of the most difficult conversations we may have. The Let’s Talk about Dementia campaign hopes to raise awareness and get families talking to each other and medical professionals so that more people living with dementia can get the help and support they need in place to ensure they have the best quality of life possible.

Alzheimer Scotland’s Let’s Talk about Dementia campaign will offer detailed information, support on the organisation’s website (www.alzscot.org/conversation) and via the Dementia Helpline (0808 808 3000) which is free to call and available 24 hours a day, 365 days a year.

Alzheimer Scotland will be promoting the campaign on radio, in print and through social media (Facebook and Twitter). Social media is particularly important, as these difficult conversations are often intergenerational; involving partners, adult children, grandchildren, other family members and beyond. We want people to share their own experiences of these often difficult conversations and if, in hindsight, they would have handled things differently. Alzheimer Scotland will also be sharing real life case studies, information and advice via its Facebook page and Twitter feed.

www.facebook.com/AlzheimerScotland

www.twitter.com/alzscot

“I wish I’d trusted my instincts about dad earlier. Got us to sit down as a family and discuss it. If I had the chance again, that’s what I’d do.” Ian

“I knew there was something wrong with me and I kept asking questions until I found out what it was. My family and friends have been wonderful – they support me in so many ways and I’m glad I can talk openly to them. Nobody should have to face dementia alone. Never be afraid to ask: ask people, ask questions and ask for help.” Anne

“Nobody’s happy to get a diagnosis of dementia, but it was so much better than the not-knowing. It gave mum, and me, a way of dealing with the changes that were happening in her life.” Donna

Sing out at St Serf’s

THE SINGING GROUP
FOR PEOPLE WITH DEMENTIA & THEIR CARER(S)
(Formerly known as Singing for the Brain)

Our group has been running since June 2010, meeting at 2.30pm on the first and third Thursday of each month. We currently meet at Inverleith St Serf’s Church Hall on Clark Road, Edinburgh

The group is for people with dementia, and their carers, who still live at home in the community. Research has indicated that people with dementia leave singing groups ‘on a high’ and this positive mood can last for some time after each session. This is also good for the well being of the carer.

The group come together to sing with emphasis on enjoyment and fun. Volunteers are on hand but those with dementia should be accompanied. There is no charge for attending the Singing Sessions, but a donation for refreshments is appreciated.

The group meet for coffee and conversation first, giving people a chance to socialise. Support is also available from volunteers and other families. When singing begins, we sit in a circle ensuring that everyone is equal and not identified by their illness. We then sing along together for around
45 minutes, led by ‘music volunteers’.

The group was started by a small number of individuals who were inspired by the “Singing for the Brain” groups running in England.

For further information, please contact: Sheila Hardie 551 1229, Kate Walker 554 4940, Diana Kerr 552 3857 or Pam Robertson 553 7239.

Ambulance service launches dementia initiative

3,800 copies of learning resource to be distributed across Scotland

Scottish Ambulance Service clinicians are set to benefit from a new learning resource on dementia designed and developed by NHS Education for Scotland and the Service itself.

It is essential that ambulance clinicians are able to recognise when a person may have dementia, and that they are are confident of their ability to provide appropriate support, care and treatment. The bespoke resource will help ambulance clinicians to give informed, high quality and person-centred support to people with dementia, their families and carers.

Ambulance clinicians will frequently come into contact with people with dementia, their families and carers as well as people with early signs of dementia who have not had a diagnosis. While recognising the often immediate and time limited nature of their contact, this will have an influence on the impact of the whole care experience for the person with dementia, their families and carers.

Pauline Howie, Chief Executive, Scottish Ambulance Service, said: “This new learning resource is an invaluable clinical support tool that will be issued to every one of our frontline emergency staff, as well as our Patient Transport Service teams.

“People with dementia often face many complex challenges and issues and this initiative, which is enhanced by a number of specially trained ‘Dementia Champions’ within the Service, will help our teams to provide the most appropriate care and treatment for people with dementia and their families and carers.”

Malcolm Wright, NHS Education for Scotland Chief Executive added: “We are delighted to have developed this important resource in partnership with the Scottish Ambulance service. NHS Education for Scotland is committed to providing educational resources and training opportunities for the entire health workforce to support rights-based, and person-centred approaches to the care, support and treatment of people with dementia and their families and carers. This new, targeted resource is a valuable addition to our suite of resources developed as a part of the ‘Promoting Excellence’ work force development programme”.

The learning resource focuses on understanding dementia, effective communication, and providing positive person-centred support. It can be used for individual learning, learning as a group or team, in a facilitated learning event, or in a mixture of all of these approaches.

As well as providing key learning, activities and scenarios are used throughout the learning resource to help encourage exploration and reflection about real practice issues.

Seagrove Centre Open Day

At North Edinburgh Dementia Care’s Seagrove Centre we provide fun and stimulating activities for our members and a wee break for their carers.

We aim to help people stay as well as they can for as long as they can which may help avoid the need for them to move into a care home.

We are having an open day to raise an awareness of the centre and to demonstrate the work we that we do with local people with dementia.

I would like to invite you along on Monday 8 September from 2 – 3pm to meet the staff and some of our members to have a chat and enjoy a tea/coffee and biscuits.

Janette McIntosh

Manager

NEDC Info

For further information visit www.nedc.org.uk

UK to host first G8 dementia summit

The UK will make the fight against dementia global by hosting the first G8 summit dedicated to seeking an ambitious level of international coordination and an effective response to tackling the condition.

Prime Minister David Cameron and Health Secretary Jeremy Hunt will use the UK’s 2013 presidency of the G8 to lead coordinated global action against what is fast becoming one of the greatest pressures on families, carers and health systems around the world.

In the UK alone, there are likely to be nearly a million people with the condition by the end of 2020. The government has already begun a national programme of action through the Prime Minister’s Challenge on Dementia, launched in 2011.

Now the UK is looking to spark a world-wide effort by inviting health ministers from G8 countries to a high-level summit in London on 11 December to discuss how they can coordinate efforts and shape an effective international solution to dementia. This includes looking for effective therapies and responses to slow dementia’s impact.

The summit will aim to identify and agree a new international approach to dementia research, to help break down barriers within and between companies, researchers and clinicians and secure a new level of cooperation needed to reach shared goals faster than nations acting alone.

They will draw on the expertise and experience of the OECD, World Health Organisation, industry, national research organisations, key opinion leaders, researchers and physicians.

Secretary of State for Health, Jeremy Hunt said:

“Globally there is a new case of dementia every four seconds, and by 2020 we will see nearly 70 million people living with the condition.

Dementia requires long-term health and social care support that can be hugely expensive. Currently 70 per cent of the global cost is incurred in medically advanced nations like Western Europe and North America. But nearly 60 per cent of people with the condition live in developing countries. As their populations grow and age, the pressure on their services and budgets will inevitably increase.

This is a global challenge and one which is set to intensify. While we continue to pursue tomorrow’s cures, it is critical now more than ever to pay serious attention to what we can do to reduce the average number of years living with the condition. The G8 today have a unique chance to come together to help people manage dementia better, lead healthier lives and deliver real improvements in care and substantial economic savings.”

The UK launched a wide-ranging dementia plan on research, care and awareness in 2012 under the Prime Minister’s Dementia Challenge. Most G8 countries also have similarly targeted plans. But the majority of this work and research investment has been led at a national level. Experts believe if countries, biopharmaceutical companies and businesses collaborate more effectively and share information, research and knowledge it could see significant advances and better support for people living with dementia today.

Scale of the problem

Current estimates indicate 35.6 million people worldwide are living with dementia but with the world’s populations ageing, the World Health Organisation estimates that number will nearly double every 20 years, to an estimated 65.7 million in 2030, and 115.4 million in 2050.

Much of the increase will be in developing countries. Already 58 per cent of people with dementia live in developing countries, but by 2050 this will rise to 71 per cent. The fastest growth in the elderly population is taking place in India, and their south Asian and western Pacific neighbours. In China, the burden of dementia seems to be increasing faster than is generally assumed by the international health community.

If dementia care were a country, it would be the world’s 18th largest economy, ranking between Turkey and Indonesia.

If it were a company, it would be the world’s largest by annual revenue exceeding Wal-Mart (US$414 billion) and Exxon Mobil (US$311 billion).

The total estimated worldwide costs of dementia were US$604 billion in 2010. About 70 per cent of the costs occur in Western Europe and North America.

Funding

The UK annual funding on dementia research will increase to around £66 million by 2015, while President Obama has committed the US to spending around £360million ($550 million) in dementia research each year. At the same time, the pharmaceutical industry is also investing heavily.

Dementia

Dementia is a syndrome and refers to the impairment of cognitive brain functions of memory, language, perception and thought. There are many diseases that cause dementia such as Alzheimer’s disease, dementia with Lewy bodies and Parkinson’s Disease-associated dementia. The majority are degenerative but not all, for example, vascular dementia. Dementia is not a single disease.

Dementia progresses from mild cognitive impairment, difficulties organising daily life, to the breakdown of personality, followed by loss self and identity, incontinence, unsteadiness, then confinement to bed and finally death. Knowing this is very distressing for people in the early stages of dementia, as well as for caregivers at the end of their loved ones life.