DSDC shares Alzheimer's INSIGHTS, a weekly publication produced for people with dementia, for caregivers and for the wider world of people with a personal or professional interest in the challenges of Alzheimer's.
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 Alzheimer Insight issue 56
 October 2015
As part of our preparations for next month's International Dementia Conference, we are publishing a series of interviews with our key speakers in an online newsletter called Alzheimer's INSIGHTS, a weekly publication produced for people with dementia, for caregivers and for the wider world of people with a personal or professional interest in the challenges of Alzheimer's.
INSIGHTS uses search algorithms and a team of specialist curators to scan the Internet for the stories that matter on issues such as Care, Lifestyle, Drugs & Clinical Trials, etc. The weekly digest appears every Tuesday and is available free of charge, providing a particularly useful service to readers who need to have access to the best information that is out there, but who struggle to find the time to find it and read it.
The publishers of INSIGHTS are strong believers in the work we are doing with our Dementia Services Development Centre, and we are encouraging all of our supporters to keep track of our planning for the International Dementia Conference in Birmingham by looking out for INSIGHTS every Tuesday. We are pleased to be emailing the newsletter to you on trial until the end of November (during which time you can Unsubscribe at any time). If you would like to continue receiving the publication after that date, please use the registration form provided by the publisher on the link above.
I hope you enjoy your copy of INSIGHTS and find it useful, and we look forward to seeing as many of our readers as possible in Birmingham.
Yours sincerely,
June Andrews

Much of the focus on managing Alzheimer’s is shifting to the experience of, and support for, caregivers. Our lead stories reflect on the financial and emotional costs being borne by growing numbers of people, and the term “caregiver burden” is introduced to INSIGHTS by this week’s interview subject. Ahead of next month’s International Dementia Conference, keynote speaker Dr Tara Cortes speaks from New York City about her work as a nurse and nurse trainer, and provides a brief preview of what can be expected from that country’s new National Strategy for Alzheimer’s.
Most read stories this week
Caring for loved one with Alzheimer’s may be most stressful for spouse
Robots to lead fitness lessons for the elderly
Alzheimer’s Caregivers Have Rights, Too
Cooperation advances Alzheimer's disease prevention research
Oklahoma City-area businesses can receive free Alzheimer's training
Morals, Not Memories, Define Who We Are
Medical Information
Identity is rooted in what we stand for
Many stories in our Curation feeds were more widely read over the past week, but one of the most intriguing was reported in the journal Psychological Science, and discussed research undertaken at two American universities into the perceptions of caregivers for people suffering from a variety of neurodegenerative diseases. The question they wanted answered? “How much do you sense that the patient is still the same person underneath?”
As reported and reflected upon in an engaging article in Scientific American, the emphasis of the research findings changed somewhat depending upon the conditions involved, but a common feature emerging was that answers had less to do with memories being retained, and more to do with natural qualities of courage, kindness and honesty – in other words, moral characteristics that endured beyond the loss of memory. We appear to be perceived by others less in terms of what is in our heads, and more in term of the extent and quality of our relationships. As the article concluded: “identity is not what we know, but what we stand for.”
Vascular damage more closely linked with Alzheimer’s
Once thought to be two very separate problems of neurodegeneration, vascular dementia and Alzheimer’s disease are showing more in common as new research suggests a role of brain vasculature in both. As outlined in a brief interview on the website MedPage Today, it appears that the accumulation of harmful proteins in the brain has implications for the blood vessels there, which may go some way in explaining emerging connections between Alzheimer’s and other significant medical challenges such as hypertension and diabetes.
Latest Alzheimer's Medical Info
Care Advice
Caregiver burden is becoming “a thing”
It’s interesting how some expressions really catch on: spot them once and soon they’re everywhere. This week’s interview subject, Dr Tara Cortes mentions “Caregiver Burden” (see below) and stories about the phenomenon are popping up offline and online – mostly in North America for now, but watch this space.

Over the last seven days, a story in The Washington Post reported on a survey of people searching for online assistance for elderly people in their care. Well over half of the survey respondents reported that the people in their care had Alzheimer’s or some other form of dementia. Also telling were the discoveries that caregivers were spending more than $50,000 annually on caregiving expenses and, not surprisingly, their caregiving activities were having adverse effects on their working lives.

A pair of items on the Huffington Post website address the challenges of caregiving from different perspectives. The first article summarises the experience that too many caregivers report learning about just by doing it: “The 5 Most Unexpected Challenges of Caregiving” include the physical and financial demands of the work; inadequate support from health system structures; things they must do for which they are inadequately trained; and a sense of their own invisibility as they labour in isolation.

Almost as an antidote to the jolts described above is the second article, praising and encouraging the compassion that drives people onwards in their caregiving, and listing five areas in which imagining their way into the minds of the people they are caring for can reconnect them with their sense of mission. The last of the five listed “compassion practices” is particularly interesting in that the recommendation to sit still for a couple of hours is less an encouragement to find a quiet moment than it is a reminder to how frustrating and depressing enforced and prolonged sitting can be for people with dementia, increasingly divorced from the busy lives they once had.
As if to remind us of the rights that caregivers must identify and guard jealously in their own lives, theAlzheimer’s Reading Room lists nine points for all caregivers to bear in mind. If there is a common thread to these points, it lies in distinguishing between what can and cannot be controlled, and insisting so far as is possible in securing respect for one’s best efforts in what can seem lonely and thankless work.
Home Instead boosts business-friendly support
One of North America’s biggest care home groups has launched a campaign to provide free training to businesses seeking to provide employees with better information about Alzheimer’s, and how to provide best possible service to customers who either have dementia or who are caring for someone who does. As reported here on BloombergBusiness, with reference to their efforts in Oklahoma City, the Home Instead support is available both in person and via an online version, and training recipients are awarded a window clinic Alzheimer’s Friendly Business designation that remains valid for two years.
Alzheimer's Care Advice
International Dementia Conference
Building a National Strategy for Alzheimer’s
In our second interview ahead of next month’s International Dementia Conference and Care & Dementia Show in Birmingham, Alzheimer’s INSIGHTS dropped in on one of the leading lights in the world of Alzheimer’s in the USA. Dr Tara Cortes is the Executive Director of the Hartford Institute for Geriatric Nursing in New York City, and is looking forward to speaking at the conference on her country’s emerging National Strategy for Alzheimer’s, for which the foundations will be education, training, and collaboration.
Dr. Tara Cortes
Tara, your distinguished career in geriatric nursing has seen you involved in a number of vitally important causes, many of them involving the shifting of perceptions away from problems seen as disabilities to being health challenges that can and must be faced.

That was the main achievement of Lighthouse International, where I was privileged to be CEO for four years. We refused to recognise problems of vision impairment and loss as being part of the aging process: our challenge was in identifying the collaborations and building the training networks that could shift public perception to what was, and is, a health issue.

That must have been useful early experience ahead of what you are doing now at the Hartford Institute, with Alzheimer’s, given another widespread identification that memory loss is just a natural part of the aging process.

Absolutely. The fact that a variety of conditions correlate to some extent with old age does not mean they’re inevitable, or can’t be prevented. But preventing these health challenges from overwhelming us requires a huge effort of education, and better, far more focused training. It will happen, and it is happening. But the solution is taking longer to emerge than it needed to. After all, we have been hearing for 30 to 40 years about the approaching tsunami of our aging population. Now it’s here. In the USA, the Baby Boomer generation is turning 65 at the rate of 10,000 every day.

How is that rather startling statistic being addressed in our training of nurses and doctors of the future?

Not adequately, yet. Nursing of older people in hospital settings takes up 60% of all care time; that figure is higher in home care. But the percentage of geriatric training in nursing and medical schools is in single figures. Only about one half of undergraduate nursing programmes offer a unique course in geriatrics. Most do integrate geriatrics as a concept throughout the curriculum but medical schools often only offer an elective course in geriatrics. Less than 1% of nursing graduates are certified in geriatrics.

And outside the schools, Tara? What training can be given to caregivers?

This is vitally important in reducing what we call the “caregiver burden”. Working with the Montefiore Center for the Aging Brain, the Hartford Institute is developing a three-hour programme for educating caregivers, and we aim to build this as a combined offline/online module for rolling out nationally.

Now plans for a National Strategy for Alzheimer’s are very much at the core of what you are going to be talking about in four weeks at the International Dementia Conference. Can you give us a foretaste of what this national strategy is going to look like?

There are, broadly, four main focusing areas. Research is vital, with the primary emphasis on clinical research as we pursue the ambition to find a cure or a disease modifying treatment within 10 years. There is a lot of good work being done here already, but more funding, greater collaboration, and better communications will help. And the second focus is research into the care element to enhance the quality and efficacy of dementia services – the sort of innovations that will be profiled at the Birmingham conference – this will be vital too, especially given how much of the burden in the near future is going to land on caregivers.

Does the American strategy involve a focus on caregivers too, then?

Very much so: preventing caregiver burden is our third area of concern! Training innovations such as the one I mentioned earlier are part, but just one part, of the solution in this area. While the world of medicine has been formulating a coherent response to the challenges of dementia, millions of caregivers around the world have just had to get on with it. We have mountains of data and anecdotes about best practices and inspired thinking on how to bring the challenges of caregiving into the community mainstream, and we understand better than ever the costs of getting it wrong in supporting caregivers, and the considerable benefits of getting it right.

In addition to the financial costs, caregivers are more prone to depression.

Not only that, but neglected caregivers are more prone to the whole range of chronic illnesses. And at a time when our healthcare systems – here in the States that means our Affordable Care Act – are all about keeping people out of hospital, the last thing we need is even more people succumbing to chronic illnesses that might have been prevented with proper diagnoses made earlier, with better education, with much more active preventative measures, and with healthier lifestyles.

You mentioned a fourth area of focus in the new national strategy?

Well, that’s education. Education for everyone involved: the professional spectrum of health and service providers; the people being diagnosed or living with the challenges of illness; the caregivers; and the wider community, which can offer such powerful support for patients and caregivers. And education not just about the disease, its progression, and strategies for managing it: but also what will be vitally important is a truly person-centred Plan of Care for people getting a diagnosis, and for the people looking after them. Engaging everyone in a formal action plan for turning the tide 

Thank you, Tara. INSIGHTS looks forward to hearing more in Birmingham.

I’m looking forward to seeing you there!
Medical Devices
Robocoaches to lead a fitness revolution
Combining research into Artificial Intelligence with advances in robotics is leading, perhaps inevitably, to fascinating innovations in the elderly care sector. The Straits Times has a story this week about a new robot called Robocoach that uses motion-sensor technology to ensure that students in fitness classes perform their fitness routines correctly. To be rolled out initially across five elderly care centres in Singapore, the robots will be complemented by a variety of tablet devices designed, like Robocoach itself, for elderly people who have suffered strokes or who live with disorders such as Parkinson’s or Alzheimer’s.
Medical Devices & Alzheimer's
Drugs & Clinical Trials
Cooperation is emerging as key to success
It has been another week of mixed news from the world of treatments and trials, as the world of clinical research into cures and disease modifiers for Alzheimer’s continues to push against decades of hard slog. Good news is led by a story carried on the FierceBiotech site, telling of the substantial investment of just over $30M in Swiss biotech company Asceneuron. Less happy is news of the American Food and Drug Administration’s putting a hold on a Phase 3 trial of an experimental drug being advanced by Forum Pharmaceuticals, as reported on Xconomy.

Amidst the to-ings and fro-ings, perhaps the most promising news of the week was contained on theMedicalXpress website, reporting on an article that appeared originally in a journal called Nature Reviews Neurology. In it, a group of one dozen eminent researchers from the Collaboration for Alzheimer’s Prevention (CAP) declared their commitment to the virtues of collaboration in clinical research into Alzheimer’s, particularly in the area of new research into disease prevention. They believe that more sharing of information, resources, and expertise should produce especially positive benefits in managing costs and improving outcomes from clinical trials.

Drugs & Clinical Trials
And Finally…
There’s no shortage of media coverage, especially online, of emerging trends in the world of music: what’s popular, what makes money, what are the top websites for distributing music, and so on. No less a business publication than Forbes carried a strong piece this week on music’s ability to “transcend and provide transcendence”, with particular reference to the provision of therapy in the worlds of ADHD and Alzheimer’s. Good story, great interview and some inspiring links, and readers can go here to find out more about how SingFit is “turning music into medicine”. 
More Alzheimer’s Disease Feeds on CurationHealth
Depression, Stress & Coping with Alzheimer’s
Alzheimer’s Care Advice
Alzheimer’s Lifestyle Issues
Latest Alzheimer’s Medical Info
Drugs & Clinical Trials
Medical Devices & Alzheimer’s
Tweets of the week twitter logo
healthcare services (@yourneedsorguk)
Inspiration #DementiaCare15 Creative expressions people with #dementia in groups @UniKent ow.ly/SwdmF
Festival of Ideas (@ideasfest2015)
Congratulations to all the Finalists for the Int'l #Dementia Awards#DementiaCare15 ow.ly/SNxF1 http://t.co/03jgx1Uik1
The Independent (@Independent)
The Alzheimer’s study Britain's top doctor didn't want you to see ind.pn/1WkpGUh
AlzheimersResearchUK (@ARUKnews)
Blog from Dr Simon Ridley on the @AlzheimersRes Alzheimer’s drug trial failure story, cross post with @BioMedCentral dementiablog.org/failure-rate-o…
ABC7 Eyewitness News (@ABC7)
Study at UC Irvine to see if exercise can slow down Alzheimer’s diseaseabc7.la/1VzHKrb http://t.co/3HAxVG4aX4
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About Alzheimer’s Insights
Alzheimer’s Insights is an online newsletter created for consumers -- primarily patients and carers -- who live with the challenge of Alzheimer’s disease. Based upon intelligent search algorithms that scour the Internet for the most read, relevant and useful stories from around the world, it is curated and published each Tuesday by a team of health and publishing experts.
Tam McDonald  
Tam McDonald Senior Curator
Tam is a communications professional with three decades of experience in health, hospitality, and financial services publishing. His interest in the human brain goes back to his studies in philosophy at university. His commitment to securing the best information about health matters goes back to his decade as a carer. In addition to his work with Alzheimer’s, Tam is engaged in online publishing projects relating to health innovation and investment, human and artificial intelligence, and diabetes.
Explain This!
Do people with dementia feel pain in the same way as everyone else and, in any case: how can they express it in ways that can be read reliably by caregivers and health professionals?
Click here to find out
Looking ahead…
Issue 57 13 October 2015
Our series of interviews of leading speakers scheduled for the International Dementia Conference in Birmingham next month will continue, and we warm up for a Special Edition of INSIGHTS with which to kick off the event on 3 November.
We hope you enjoyed this newsletter.

The DSDC team.
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