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.

Let’s talk about reducing your risk of dementia

 

29^th May – 4^th June is Dementia Awareness Week in Scotland. John Watson, Deputy Chief Executive at ASH Scotland talks about risk reduction and how you can help inform future campaigns in his guest blog.

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Let’s talk about dementia.

In particular let’s talk about dementia not as a dark cloud hanging over the future, but as an illness like any other, an illness that is not an inevitable part of ageing but an issue over which we can start to take some control.

There are around 90,000 people in Scotland living with dementia, and that number is predicted to double within the next 25 years.

Even a small reduction in these numbers, or a delay in the onset of dementia, would mean thousands of people, and their families, avoid a condition which can be challenging and distressing for all concerned.

That reduction could be achieved if more people were aware that dementia is a disease, not an inevitable part of ageing, and that by changing various lifestyle factors you can influence your chance of developing dementia.

You may already be taking action to reduce your risk of cancer, stroke and heart disease. It’s time to take the same approach with dementia. The science of dementia prevention is not so well established, but it may be that taking action now can reduce your dementia risk by a third.

This is why a number of voluntary organisations, including ASH Scotland and Age Scotland, are coming together under the Dementia DEFENCE banner. We aim to highlight that what you smoke, eat or drink, how physically and socially active you are, and generally the extent to which you live well and healthily can significantly impact your risk of developing dementia. Crucially how you live now affects your later health, so don’t put this off until later.

To help inform and develop our campaign we are looking for groups of adults to assist us in exploring how we can construct dementia prevention campaigns that will be effective in reaching communities, to raise awareness and encourage action in response.

We are looking to arrange discussions with a wide range of groups of adults, ideally around the 50s and 60s age range. We can tell you about the lifestyle changes that can reduce your dementia risk, but we also want to hear from you about your views on dementia, what would inspire you to take action to reduce your dementia risk and what we can do to help and encourage you.

As well as our information and our thanks we can provide some refreshments for the meeting. It will just take an hour of your time.

Interested? Contact Mike Andrews at ASH Scotland on 0131 225 4725 or at mandrews@ashscotland.org.uk

Grapevines and Kung-Fu kicks

Trust Housing Association invited us to run healthy active ageing showcase events at 18 of their premises across Scotland.  Thanks to funding from the Life Changes Trust we were pleased to be able to say yes.  Doug Anthoney reports.

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Number nine: Grapevine.  Number two: do Kung-Fu.

These are just a couple of the ‘calls’ that can come up when Trust Housing Association’s older tenants play our Strength and Balance bingo game.  It’s a fun way of getting everyone moving, and almost everyone can move: the activities we showcase are based on NHS exercises for older people, and there’s a seated option for most of them.

We focus on strength and balance because these are particularly important for long term health.  If we don’t look after these aspects of physical health, our muscles will deteriorate gradually from age 35, and we’ll have lost a third of the bone density in our hips by age 80.  The good news is that because bone and muscle are living tissue we can build them up, whatever age we are, by doing simple exercises on a regular basis.

Our showcase doesn’t just focus on the body.  We also look at what everyone can do, whatever their age, to keep the brain healthy.  A key message is that any concerns we have about changes in our thinking abilities are best shared with a doctor, sooner rather than later.  Surveys have found that people are far more likely to see a doctor about physical aches and pains than they are for problems affecting thinking, memory or communication abilities.   Yet many of the causes of such symptoms can be stabilised or even reversed.  And if something that can’t be cured is responsible, such as dementia, then getting a diagnosis is an important step towards getting the support and treatment that can enable someone to live well with the condition.

It’s not possible to guarantee that someone will never get dementia, but there are things that we can all do to reduce the risk of dementia.  Our showcase highlights these: from eating well to challenging ourselves to learn new things.

So far there’s been a lot of laughs in our showcase events with Trust residents: from Newton Stewart to Stornoway.  We’re serious about our message, but that doesn’t mean that we take ourselves too seriously, and when learning is fun it’s more likely to stick.

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Doug Anthoney is Training Programme Officer with Age Scotland’s Early Stage Dementia project.

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.

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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.

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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.

Putting dementia on the workplace agenda

Dementia can affect any workplace – but if and when it does, how likely are employers and employees to respond in the right way?  Since joining our Early Stage Dementia team in April Doug Anthoney has been working to ensure Scotland’s workplaces are dementia aware.   Here’s the story so far.

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“If one of your employees had dementia – would they tell you?” That’s the question we posed to the twenty employers taking part in a dementia awareness training taster day in May.  Only a handful were able to say “yes”.  This needs to change.

The case for putting dementia on the workplace agenda is clear.  Our population is ageing, state pension age is rising, and employers no longer have the power to force retirement at age 65.  Which means that more of us will experience the first symptoms of dementia at work, and more of us will be juggling work with caring for someone who has dementia.  In dementia unaware workplaces employees affected by the condition are more likely to be shown the door than compassion, and employers run increased risks: of quality and safety problems; legal non-compliance; and needlessly lost staff skills and experience.

Raising awareness in workplaces wasn’t in our original Early Stage Dementia project plan.  But calls to Silver Line Scotland and comments by employers to our Now & Next pre-retirement training team highlighted a need and a demand.  We were delighted when project funder Life Changes Trust accepted our case for an additional focus on workplaces.

My first task was to research the links between dementia and employment matters.  Two things helped immensely:  new findings on Dementia and the Workplace from the University of the West of Scotland and Heriot Watt University, and training materials already designed for raising the dementia awareness of Age Scotland member groups. Given this head start I was able to offer two half-day training workshops from late May: a general dementia awareness session for everyone in the workplace; and a specialist session for human resources staff and managers.  So far I’ve delivered workshops to employers including Stirling Council, HM Courts and Tribunals Service, SSE, Horsecross, Cohesion Medical and Glasgow Caledonian University, with really positive feedback.

I’ve also prepared five dementia aware tips for employers and a workplace dementia awareness display kit comprising display boards and flyers.  This is free for employers that book our workplace training, and we’ll be handing out kits to trade union reps at a conference we’re planning jointly with STUC and Alzheimer Scotland at the end of September.  Also in the pipeline is an Age Scotland guide to dementia in the workplace, which will be free to training participants.  We’d also like to develop video resources in which people living with dementia explain to employers what support would have helped them.

Could your workplace benefit from what we’re offering?  You can find out more at www.yourbrainyourjob.scot and get in touch at ESDteam@agescotland.org.uk.

 

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.

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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.

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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.

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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.