People living with dementia and their unpaid carers at the heart of new National Policy and Practice Forum

For many people in Scotland living with dementia and their unpaid carers, a one-size-fits-all approach to their care does not always take into account the vital aspects of their everyday life and well-being.

This needs to change.

Thanks to a ground-breaking investment of £2.5 million from the Life Changes Trust, Age Scotland, the University of Edinburgh and Queen Margaret University to deliver two bold new initiatives; a National Forum for Dementia Policy and Practice and a School of Leadership in Dementia.  Both projects will support people with dementia and carers to become experts, leaders and influencers in Scotland.

Our joint mission is a Scotland where having dementia doesn’t matter to who someone is or how they live their life.

People affected by dementia and their unpaid carers will be at the heart of this work. They are the real experts and are on every street in Scotland. Together we will identify and demonstrate what works in terms of human rights, peer support, early intervention, prevention and a relationship-centred approach to care.

We will listen to them and respect their experience so they know they are valued.

Scotland has already led the way with its three National Dementia Strategies. The creation of the National Forum will bring together people with experience and expertise in dementia, locally and nationally, with the aim of evidencing what will create better lives for people with dementia and unpaid carers. The Forum will provide space to scrutinise policy and practice in many areas, including housing and dementia, sport and dementia, the arts and dementia, and human rights and dementia.

We are incredibly proud that so many wonderful organisations are partnering with us to deliver this ground-breaking Policy and Practice Forum.

We will promote evidence of what works well so that national and local policy and practice can be reviewed and, where necessary, adjusted. This is so that Scotland can become an exemplar of how, in all aspects of life, people with dementia can find meaning, be fully supported and involved.

The Forum will work hard to ensure that policy makers, service providers and the public know what matters to people affected by dementia and use the evidence we produce to show how to make Scotland a better place to live.

We’re hugely proud and excited about what can be achieved for people affected by dementia and their unpaid carers.

---

The founding partners of the National Forum for Dementia Policy and Practice are: Go Upstream, Luminate, Deaf Scotland, Ash Scotland, Paths for All, Heriot Watt University, Tide, Reach Community Health Project, Solicitors for Older People Scotland, Kirrie Connections, Faith in Older People Scotland, Eric Liddell Centre, Care and Repair Scotland, Age Scotland Orkney and the Mental Health Foundation.

Being Dementia Aware: how you can help

In Scotland, around 93,000 people are living with the condition with that number set to double by 2050.   

Age Scotland’s Early Stage Dementia project is funded by the Life Changes Trust to raise awareness of dementia.  We have done this through making the charity more dementia aware and delivering our workshops to our member groups and other organisations across the country.  We have also published a suite of publications which you can access via our website here.

This Dementia Awareness Week, we want to highlight what we do day in and day out to help spread the awareness message.

This week will mark the start of our new project focussing on making communities age and dementia friendly.  As part of this we are launching an online survey to hear directly from you on your own thoughts which you can find here.

Last week, our Training Officer, Julie Turner, travelled to Orkney to launch our ‘Train the Trainer’ initiative before travelling back to Edinburgh to start our new TASTER workshops with our partners in the Age Scotland Veteran’s Project.  For more information on our TASTER sessions click here.

To celebrate Dementia Awareness Week, we also want to hear from you.

We want to know what Being Dementia Aware means to you.  Whether you are someone living with dementia, a carer, family or friend, what is being dementia aware meant for you?

To take part, you can download our campaign card from our website here, take a photo holding the card and send it to us at esdteam@agescotland.org.uk or tweet your photo or message to us using the #BeingDementiaAware hashtag.

We will also be running a ‘Being Dementia Aware’ quiz on our social media channels so make sure you are following us on Twitter and Facebook!

This year Dementia Awareness Week in Scotland runs from the 4^th -10^th June 2018.

The Age Scotland Early Stage Dementia Project has been running since 2016 with funding from the Life Changes Trust.  For more information on the project visit (enter website address) or email the team at esdteam@agescotand.org.uk.

 

Don’t fear the D word

Dementia is a word that strikes terror in many.  And no wonder: newspapers regularly feature headlines that sensationalize the ‘misery’ of dementia ‘sufferers’.   Yet there is a growing number of people with dementia who are active as campaigners, and they reject such language as stigmatizing.  Instead, they call themselves people who are living with dementia.  In one survey more than two thirds said they were living well with dementia.

Does the way we talk about dementia matter?  Yes.  A recent survey of the general public by the Alzheimer’s Society asked: “if you had a physical symptom, would you see a doctor right away?”  60 per cent of the sample said they would.  However, asked whether they would see a doctor right away for a non-physical symptom, such as a memory problem, only 2 per cent said yes.  For many people, fear of discovering that they have dementia will keep them from talking to their GP.

It’s beneficial for people who are worried about their thinking to get it checked out as soon as possible.  They may learn that their symptoms aren’t caused by dementia.  Did you know that memory loss, the symptom most associated with dementia, can also be caused by other things such as stress, depression, infections, nutritional deficiencies and even lack of sleep?  Moreover, with around 100 types of dementia that can affect the brain in different ways, memory loss is not necessary the first sign.  The range of early dementia symptoms includes reading problems, difficulty judging distance, less fluency when speaking, and even becoming less kind and caring.  Because of this a diagnosis can take time to reach: other possible causes need to be ruled out.

Getting a diagnosis is worthwhile, as without it you won’t be able to get support to live well with dementia.  In Scotland everyone who receives a diagnosis is entitled to personalized support which, if their dementia is in its early stages, will be from a Dementia Link Worker.  Link Workers can help someone understand and adjust to their diagnosis, to plan for the future, and to get the support they need to live well with dementia.

That support can come from a range of sources, including other people with dementia, and opportunities to enjoy supported activities, from singing to sport.  Did you know that many of the things that help people to live well with dementia are the same as those that make it less likely someone will get dementia in the first place?  Physical exercise, eating well, staying within safe alcohol guidelines, stopping smoking, socialising and challenging the brain can all play a part.

Age Scotland’s Early Stage Dementia project offers free guide booklets on a wide range of dementia related topics.  You can request these from the Age Scotland Helpline: 0800 12 44 222.

Learning from Japan about supporting workers who live with dementia

On 30 September trade unionists from across Scotland gathered in Glasgow to learn how to support workers affected by dementia; directly or as carers. 

A highlight of the conference, which was organized by Age Scotland in partnership with Scottish TUC and Alzheimer Scotland, was a video of an interview with Tomo; a visitor from Japan who is living and working with dementia, undertaken by Agnes Houston; a campaigner who herself has the condition.

At the conference Age Scotland launched a new free guide on Dementia and the Workplace.  While employers in Scotland are the main audience for this guide, it also proposes actions that everyone in a workplace can take to become more dementia aware, from occupational health professionals to customer facing staff.

You can download the guide at www.yourbrainyourjob.scot.

Dementia: “I wasn’t offered help – I was castigated.

James McKillop’s long career in the civil service came to an abrupt and unpleasant end after he developed the symptoms of early stage dementia. Here he tells his story, and calls for employers to show workers with dementia compassion and fairness, not the door.

---

I joined the Civil Service in 1959. I went where I was sent, and after a few years in England, found myself in Glasgow in 1971. Where I worked, females outnumbered the males, by at least ten to one. It was a great place for a single man to meet a possible wife, and so I did; marrying in 1973. Four children followed. Life went on, and then it changed. I was taking longer and longer to do my work. It wasn’t rocket science or brain surgery, just clerical work. The work was routine and you did the same work on the first of January, as you did a year later on the 31 December. And the same again the next year.

I ran a small team and I checked their work. It had to be correct when it left me otherwise the customer would suffer another day’s delay. I was doing my work correctly but frequently had to consult my work’s manual to get it right. This meant staying behind unpaid, to keep up with my workload. I did not mind this, as being correct was so important to me.

My supervisor noticed I was not coping but instead of being asked if all was well and being helped, I was castigated. If I had had a drug or alcohol problem, all sorts of help and counselling were available, but there was nothing for an employee, who had given his all since leaving school. And now at age 55, was now experiencing some sort of problem. There was no mention of being referred to anyone, who could look into the situation. Note, I did not have a diagnosis of dementia at that time. But I was struggling.

The pressure mounted on me and took toll on my health with absences for high blood pressure. I ended up off for some months. The day I went back I had such a harrowing interview with my supervisor I had to go to the work’s nurse. My blood pressure was so high she said I would die if it stayed at that level. She sent me home in a taxi, and I never worked another day there. I took a retirement package, before I was pushed out or died from the high blood pressure. What a way to end your lifelong career! Normally at retirement there is a ‘do’, presents and speeches. No one in my group knew I had retired, until a month later and that was by accident. If I had been offered a job at the level below me, my work would have been checked, with no disadvantage to the customer.

At work I was in charge of people and one time I noticed a very good worker, a widow, was not coping. I spoke to her gently, pointing out she was not up to her usual standard, and was there anything I could help with. She had problems with a lodger that were affecting her sleep and her finances. She refused to show him the door, as she could not do that to somebody’s son. She took my advice to buy him a one way ticket back to the islands. Her work rate immediately improved and she looked and sounded better. I looked after my staff – but I wasn’t looked after by my employer when it was me who needed help.

Some years later I was at Alzheimer’s Scotland, making a video for them with ten others, who had been diagnosed with some form of dementia. During a break in filming we got chatting, and found every single one of us, had left work under a cloud, as our performance had slipped. We were got rid of. Employers need to be aware that dementia is a disability, and people should be treated under any Disability or Human Rights acts around. Sadly, there are people reading this article that will go on to develop dementia. Make sure your rights are in place before that happens.

---

This article is taken from James’ presentation today to a Dementia and the Workplace conference for trade union reps, organised by Age Scotland, STUC and Alzheimer Scotland.

Living well with Dementia: diagnosis is key

Today kicks off Dementia Awareness Week in Scotland. Richard Baker, Team Leader of our Early Stage Dementia Project, talks tackling the stigma and how early diagnosis is key to living well with dementia.

---

This week Age Scotland will be joining Alzheimer Scotland and other organisations working for better support for people with dementia to promote the need for better support and early diagnosis.

This is a key concern for Age Scotland through the work of our Early Stage Dementia Project, supported by the Life Changes Trust. Early diagnosis for someone with dementia can make a huge difference to their ability to live well with the condition. The Scottish Government has made dementia a national priority, and as part of this has introduced a commitment to provide one year’s support for everybody who has been diagnosed with dementia for a year after their diagnosis. This support is provided by link workers who help people with dementia understand the illness, manage symptoms, maintain their connections with their local community and help them make plans for their future.

However, while there is a huge amount of work going on to raise dementia awareness and tackle stigma around the illness, there is still a huge amount to do. Depending on the measure used, either a third or a half of people who have dementia in Scotland have not yet received a diagnosis. A UK survey by the Alzheimer Society found that more than half of people seeking a diagnosis for dementia have delayed going to their GP by at least a year and nearly two-thirds of people fear a diagnosis would mean that their life is over.

But people can and do live well with dementia, and support in the early stages is crucial to ensuring this can happen. That is why it is so important to tackle myths and stigma around dementia and make more people aware of the benefits of early diagnosis. At Age Scotland we meet people with dementia who are still contributing to their communities and are the leading voices campaigning for improved dementia services. Their example shows that if people take early action if they are worried about their memory or struggling with other activities, they can still have a rewarding life even if they do receive a dementia diagnosis. Dementia Awareness Week is a great opportunity to highlight this message, and it is vital the work to make all our communities dementia friendly and dementia aware continues all year round.

Age Scotland’s Early Stage Dementia Team

To find out more about Age Scotland’s work around Early Stage Dementia visit our website or contact Richard Baker at Richard.Baker@agescotland.org.uk

 

Early Stage Dementia Training kicks off!

Age Scotland’s Early Stage Dementia Project is funded by the Life Changes Trust to support the charity in developing dementia awareness training for our staff, member groups, volunteers and partners.  In her guest blog, Training Officer Gwen James gives us an overview of what our member groups told us they want to know about early stage dementia and the training that has been developed as a result.

---

 

Age Scotland’s Early Stage Dementia Project is well under way!

The first part of the project was to travel around Scotland to find out how much people know about early stage dementia. We visited many of our member groups, spoke to colleagues from other organisations, and gained some valuable and varied feedback.

Common themes from our consultations were that many people would like to know how they can reduce their risks of developing dementia, and that people would like to find out more about the support available both for those with a diagnosis, and for their friends and relatives.

Gwen James (centre) visits Age Concern Orkney to deliver training.

As a result of this feedback we have started working on information resources. These will be available as publications and online. They will cover a variety of areas relating to dementia, from the signs and symptoms to how to live well with a diagnosis.

We’ve also developed training about early stage dementia. All of Age Scotland’s staff and volunteers have been trained, and we are now offering the training to our member groups and partners across Scotland. Initial feedback has been extremely positive and has already contributed towards making Age Scotland better at supporting those with early stage dementia.

Our training covers the following areas:

• What is dementia?
• Signs and symptoms
• Reducing the risk
• Communication hints and tips
• Diagnosis and living well with dementia
• Staying independent with dementia

We have arranged a number of training sessions across Scotland, which are free of charge for our members and partners to attend:

• 19^th April – Dundee
• 4^th May – Aberdeen
• 10^th May – Falkirk
• 18^th May – Dumfries
• 25^th May – Inverness
• 8^th June – Perth
• 16^th June – Stirling

We are also happy to travel to our member groups and partner organisations to deliver free training.

If you have any suggestions or contributions for the project team, or if you are interested in receiving training with your group, please contact us by emailing ESDteam@agescotland.org.uk or calling us on 0333 32 32 400.

 

Scotland’s National Dementia Strategy – what the proposed priorities could mean

This week the Scottish Government published its proposals for key priorities for the new National Dementia Strategy, which will be published at the end of the year.  Richard Baker, Team Leader of Age Scotland’s Early Stage Dementia Project, reflects on what is being proposed and what it could mean for those living with Dementia.

---

 

The new strategy will be important for the future delivery of services for people with dementia. Age Scotland has taken a keen interest in its development through the work of its Early Stage Dementia Project, funded by the Life Changes Trust.

The report on the engagement process around the new strategy highlights support for continuing work on providing improved post diagnostic support for people with dementia, and Age Scotland agrees that this is vital. The Scottish Government has made a commitment to provide all those who are diagnosed with dementia with one year of post diagnostic support.  This has the potential to be of huge importance to thousands of people with dementia. Future planning in the early stages of the condition can have a huge bearing on how well people are able to live with dementia in the longer term.  However the challenge is ensuring that people with dementia across Scotland can benefit from this support without having to wait too long to access it. This will require further work, and this is reflected in the commitment in the key priorities to do more to improve the consistency of post-diagnostic services.

One area which is not currently reflected in the key priorities is what can be done to promote healthy active ageing to reduce people’s risk of developing dementia, or delaying its progression for those with a diagnosis. Healthy active ageing has long been a key aspect of Age Scotland’s campaigns, but through the work of the Early Stage Dementia Project we want to raise awareness of its importance with regard to dementia. There is growing evidence that diet, smoking and exercise can have an impact on someone’s risk of developing dementia. We believe raising awareness of this and early stage dementia more widely is important, particularly given that we know  that, on one measure, as many as half of those people with dementia have not yet been diagnosed.  The third dementia strategy will be able to reflect on real progress made in supporting people with dementia in Scotland, but will also reflect there is a great deal more still to do.

For more information about the Age Scotland Early Stage Dementia Project, please email us on ESDTeam@agescotland.org.uk.