Category Archives: Diagnosis

World Alzheimer’s Report

Media release from Alzheimer’s Disease International:

GLOBAL COST OF DEMENTIA SET TO REACH US $1 TRILLION BY 2018

World Alzheimer Report 2015 estimates that someone in the world develops dementia every 3 seconds.

London, 25 August 2015: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends‚Äô, released today, has found that there are currently around 46.8 million people living with dementia around the world, with numbers projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050.

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

The report shows that the current annual societal and economic cost of dementia is US $818 billion, and it is expected to become a trillion dollar disease in just three years’ time. The findings show that the cost of dementia has increased by 35% since the 2010 World Alzheimer Report estimate of US $604 billion. This means that if global dementia care were a country, it would be the 18th largest economy in the world, and would exceed the market values of companies such as Apple (US $742 billion) and Google (US $368 billion)*.

The report updates Alzheimer’s Disease International’s (ADI) data on dementia’s global prevalence, incidence and cost, highlighting dementia’s increasing impact on low and middle income countries (LMICs). It is estimated that 58% of all people living with dementia today reside in LMICs, a proportion that is anticipated to rise to 68% by 2050, driven mainly by population growth and an ageing global population. It is also expected that by 2050, nearly half of all people with dementia globally will live in Asia.

The updated estimates are based on new research led by Professor Martin Prince from King’s College London’s Global Observatory for Ageing and Dementia Care**. These new findings take into account both the growing numbers of older people (population ageing), and new and better evidence on the number of people living with dementia, and costs incurred.

Professor Martin Prince notes: ‚ÄúWe now believe that we underestimated the current and future scale of the epidemic by 12-13% in the 2009 World Alzheimer Report, with costs growing more rapidly than the numbers of people affected.‚ÄĚ

In light of the findings, the report calls for a specific global work stream from all stakeholders focused on assisting LMICs to develop programmes to raise awareness and improve access to early diagnosis and care. ADI is urging policy makers around the world to approach the issue with a broader agenda and a wider representation of countries and regions, particularly those in the G20 group of nations. A key recommendation of the report calls for a significant upscaling of research investment into care, treatment, prevention and cure.

Marc Wortmann, Executive Director of ADI, commented: ‚ÄúThe rising global cost of dementia will pose serious challenges to health and social care systems all around the world. These findings demonstrate the urgent need for governments to implement policies and legislation to provide a better quality of life for people living with dementia, both now and in the future.‚ÄĚ

Glenn Rees, Chair of ADI, outlines ADI‚Äôs urgent priorities: ‚ÄúWe must use the findings of this report to advocate for action in international forums to fight back against the stigma of dementia and encourage the growth of dementia-friendly communities and countries. This action should include timely diagnosis and post-diagnostic support and improved access to support and care, especially in low and middle income countries.‚ÄĚ

Professor Graham Stokes, Global Director of Dementia Care at Bupa, supporters of the report, added: ‚ÄúThe findings also highlight that the workplace is a unique place to tackle dementia. With almost half of the world‚Äôs population in employment*** and people staying in work for longer than ever before, employers have a responsibility to act as they have the potential to make a huge difference. They can support people living with dementia and their carers, and also encourage healthy lifestyle changes which may reduce the risk of dementia.‚ÄĚ

You can download the SUMMARY and the FULL REPORT here:

World Alzheimer Report 2015 Summary 2015

World Alzheimer Report 2015

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept¬†their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through¬†collaboration¬†with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating¬†with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country¬†advocacy¬†organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer‚Äôs, but with emphasis that I may “have it” but it certainly doesn‚Äôt have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word‚Ķ “dementia” but most don‚Äôt understand what it means!¬†

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my¬†wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means.¬†

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Dementia Research Wrap Up #4

Slide4Our latest Dementia Alliance International Dementia Research Wrap Up #4  for April 2015, generously provided and written by Dr Ian McDonald.

Thank you Ian.

Over the past few weeks there have been a few advances in relation to treating the pathological signs of dementia (in the brain). This means trying to get rid of those toxic proteins which cause brain cells to die and memory loss and other dementia related symptoms to occur. While this news is always exciting to hear, most of this research being reported on is in its earliest stages and some of the trials are yet to move from animal testing. So while small steps are being made, a long road is still ahead. I’ll give you a brief overview of three of these new trials recently reported on.

Research out of Australia has shown that an ultrasound scanning technique can reduce and remove amyloid beta plaques from the brains of MICE with Alzheimer’s disease. The results, published in the Journal Science Translational Medicine, showed that applying the ultrasound technique on mice with Alzheimer’s disease removed amyloid beta plaques from the brain, and in some cases, cleared the plaques completely. Treated mice were also found to perform better on a variety of memory tests, indicating that it may also reverse the symptoms of Alzheimer’s disease.

Another lot of Australian research has provided evidence towards an infrared light therapy being able to treat Alzheimer’s disease. In this mouse study, published in the journal Alzheimer’s research and therapy, daily infrared light therapy was able remove and reduce the levels of toxic proteins and plaques associated with Alzheimer’s disease.

So while both of these approaches have been able to break up the plaques which are considered responsible for Alzheimer‚Äôs disease onset ‚Äď so far the results have only been seen in mice. The skulls of mice are much thinner than those of humans and thus the approach would need considerable modifications before clinical trials can be undertaken in humans. We‚Äôll certainly keep posted to see how this research progresses.

Moving along a bit further, results were also recently released by a pharmaceutical company called Biogen showing that a drug called Aducanumab has had promising results as an Alzheimer’s disease treatment during a Phase 1b clinical trial.

So what is a Phase 1b study? They are intended to demonstrate ‚Äėproof of concept‚Äô and confirm a hypothesis, while also evaluating the safety, tolerability, and efficacy of the experimental treatment. If the results are promising, the researchers will then move into larger trials and longer term trials, known as Phase 2 and 3.

In this their analysis of the results, the researchers found that this drug was able to reduce amyloid plaque levels, and in turn slow down cognitive decline in a small number of people with early stages of Alzheimer’s disease. So with these results, the researchers will now move into larger and longer term phase 2 and 3 trials and assess further if any side effects might occur as a result of taking this treatment.

So while it can always be exciting to hear about an Alzheimer’s disease breakthrough it is important to delve further into the results and see exactly what they say. I would also recommend anyone wanting to participate in a research clinical trial to have a read of some information on our website around what’s involved when participating in a research trial Рhttp://dementiaresearchfoundation.org.au/whats-involved-participating

To read about these studies in full have a look through our blog here – http://dementiaresearchfoundation.org.au/blog

Video of Master Class 1: I’ve Been Diagnosed with Dementia. What’s Next?

On September 3, 2014, over 20 people gathered online in a “Zoom room” via video conferencing to learn how to plan and take control of their lives after a diagnosis of dementia. Our teachers were two DAI board members, both with dementia: Sid Yudowitch (USA) and Sue Stephen (Canada).

If you missed the class or would like to experience it again, here is the video.