Down’s Syndrome and Alzheimer’s Dementia

screen clip of research paperIt’s a dreadful double whammy – people with Down’s are much more at risk of developing Alzheimer’s due to the extra strand of chromosome that causes Down’s in the first place.  Better healthcare and support means many more people are living into older age (in the early 1900s, most didn’t survive beyond 12 years), enjoying more life opportunities than ever before – including acting, gigging, (check out Heavy Load – I knew several of them!) and hitting the clubs and festivals  supported by friends, family, and the likes of Gig Buddies and the Stay Up Late campaign.

But the tragedy of dementia lurks and threatens to peel away the thin layer of icing on their newly risen cake.  What a prospect: a newly realised good quality life expectancy with the almost 100% risk of it all ending in such a dreadful mire of memory and personality loss.

So where is the upside? It’s here: with a population so at risk and a clearly identifiable strand of genetic material to look at, there’s the possibility of finely tuned research into the disease and this will benefit all of us.

ALL. OF. US.

Say thank you – to the researchers, to the participants, to the families and support workers.

ALL. OF. US.

Spare some cash for their funds.

ALL. OF. US.

And next time you hear some ignoramus insulting a person with Down’s, call them out. Sometimes being better than that ourselves and feeling uncomfortable about it isn’t quite enough to challenge those insults (you know the ones well enough), but maybe this will give us all a shove in the right direction.

Because did I say ALL. OF. US?

‘The Recovery Letters’ edited by James Withey

This collection of letters written by people with experience of depression to people still in the thick of it is available now for pre-order. The reviews here strongly suggest without actually saying so, that this isn’t a sit-down-and-read-all-in-one-go sort of book. It isn’t a novel; it’s real and it’s painful at times because the people who wrote the letters and pulled back the curtains on very personal experiences of their own are real. But its message is hope – everyone who wrote has been there and eventually found a safer place from which to speak. The depressions are different and the recoveries are different because the people are different. There’s probably something there for anyone in that black hole and feeling lost although it may not be the first letter, or any of the first several, or the middle one or the last, but it’s likely to be somewhere there just a page-turn away. And it may not be the same one the next time you look because you will have changed.

To my mind, it’s the complementary twin of Matt Haig’s Reasons to Stay Alive, a profoundly moving autobiographical account of his own depression and recovery which can be read like a novel. Have both. Give both. Keep both. On the shelf, by the bed, in the gap between the cushion and the arm of the sofa, Wherever is close to hand.

Elder Care

This list of links comes via Kayla Harris of ElderImpact:

With more and more people joining the ranks of seniors these days, there really can’t be enough information to share. And while the internet has gobs of resources, it can be like finding a needle in a haystack.

At Elderimpact.org, we’re dedicated to helping seniors stay healthy, connected, and up on today’s news and developments. That’s why I’m sharing with you a collection of great resources we put together.

I hope you find them useful and that you will consider sharing them with your readers.

 

The Boomer’s Ultimate Guide to Adding Value to Your Home

9 of the Best Travel Destinations for Seniors and Retirees

Downsizing in Your Senior Years? Decluttering Tips for Seniors

Disaster Safety for People with Disabilities

Healthy Aging Into Your 80s and Beyond

Substance Abuse And Addiction In The Elderly

Caring for Elderly Parents: Managing Role-Reversal


Senior-Friendly Remodeling

Aging Parents And Children Should Talk About Finances

Signs It’s Time for Assisted Living: Identify Potential Warning Signs that It’s Time for a Move

Caretakers’ Guide to Moving Seniors Into a Facility

Checklist: Pre-Planning Your Funeral or Memorial Service

Reasons for Cremation or Burial: Practical and Personal Considerations

Kayla Harris

Elderimpact.org

340 S Lemon Ave #5780

Walnut, CA 91789

A comprehensive list that’s likely to be invaluable to people for whom the care of an elderly person is a central concern, or to elderly people themselves. Be informed, know what you want and what’s out there. Even if the locations of these resources are outside your country, they may prompt you to see if there is anything similar locally – and if not, why not.

Sleep Apnoea and why you should know about it

This is not fiction but it is a horror story many people don’t know they’re living in.

This video was recorded by a friend, worried by his wife’s interrupted breathing at night. It’s here with their permission because he used it to convince his GP she had Obstructive Sleep Apnoea (OSA) which is a killer.

There are different kinds of OSA, some central – to do with the brain – and some more peripheral involving blocked sinuses or collapsing nasal canals. They all stop the sleeper from breathing, sometimes hundreds of times a night, without them noticing. They wake up tired, often fall asleep during the day, including while driving, Some drivers have killed other road users due to this disorder.

But it’s often the sleeper themselves most at risk of dying because it deprives the brain of oxygen, and while the brain will keep pushing the body to breathe as carbon dioxide levels rise, it can’t overcome the physical obstruction itself. The result can be cardiac arrest or stroke.

If it’s you, your partner may have noticed your snoring and put up with it for a long time. Snoring isn’t glamorous, is it? But don’t ignore it, have the discussion my friend and his wife had and get an assessment via your GP. It will involve an overnight test and it could save your life.

So what can be done about it? Depending on your lifestyle, you might be advised to lose weight (too much of it can make your neck muscles floppy), reduce your alcohol intake (does much the same thing). Treatment includes the CPAP (Continuous Positive Airway Pressure) which pushes air into your airways via a mask so you don’t have to drag it in by your own effort. There are also devices that keep your bottom jaw in place if the apnoea is caused by your jaw and tongue falling back into your throat while you’re asleep. And the most minimal of interventions, the strips that keep your nasal passages open if these are inclined to collapse.

Watch the video, hear those agonisingly long pauses in my friend’s wife’s breathing, and take action if it could be you, Be informed; don’t die of ignorance.

The British Snoring and Sleep Apnoea Association (BSSAA) has information, also the British Lung Foundation.

Dupuytren’s Contracture – impact on work & leisure

Thand with Dupuytren's contracturehese are my hands. They haven’t always been like this but my mother’s were, in her later years, and at the time I really didn’t understand the implications. Somehow, I managed to believe that not uncurling her fingers was almost wilful and that she could if she really wanted to. Now I know she couldn’t. See the tiny nodules and pads on my right hand, white against pink? They’re quite new, the disease is active. See my left hand? If I fell off a cliff I could dangle from that pinky for hours because it doesn’t move and nor would it hurt. Left to my fate, I would eventually be a skeleton held defiantly and comedically in place by just that one finger.

The cause is over-enthusiastic connective tissue which first forms nodules, usually in the hands but sometimes in the feet where it’s called Ledderhose. These nodules gradually expand to form cords, and the cords tighten over time like a pulled thread in your best sweater, dragging the finger down into the palm. What causes the nodules and the cords though is anyone’s guess. There are indications of an autoimmune component with a genetic predisposition linked to north European heritage.

Treatment includes using a needle to disrupt the cords (needle fasciotomy), collagenase injection (an enzyme that dissolves the affected tissue), open surgery, and in some instances, radiotherapy.  For many people – maybe most, the results are temporary. This disease won’t be messed with. Upset it and it’s back with a vengeance ready to make you stick your finger in your eye when you wash your face, turn putting on gloves into a wrestling match, and leave you with a two-finger salute you never intended. Right-handers struggle with handshakes – do they avoid them and risk seeming stand-offish, or carry on regardless and hope the weird finger-in-the-other-person’s-palm thing doesn’t freak them out? Mugs are hard to hold, anything you aim a grab at can be knocked away by the curled-in digits before the remaining ones have got a grip, your typing skills go AWOL, and just try applying sunscreen, shampoo, or moisturiser.

There is no cure.

On the positive side, it isn’t life threatening, it doesn’t seem to affect any other body part (but cf feet), and give or take the inconveniences of grip and grasp, it’s hardly on the map when it comes to disabling conditions. Or is it?

Professionally, for me it wasn’t a problem beyond the fact that I couldn’t use a mouse so had a graphics pad installed on my computer. This was fine until hot-desking became a thing and, reminiscent of my own failure to appreciate my mother’s problems, managers serially failed to grasp that I couldn’t, well, grasp and needed a dedicated PC.

But what about other professions where hands are critical? I’ve heard of musicians having to give up playing, a physiotherapist unable any more to apply therapeutic manoeuvers, a vet who found himself without the rounded full-palmed touch he needed both for diagnosis and making an animal feel safely held. There is research but it isn’t very high profile and more participants are needed.

So here’s the question: if you have Dupuytren’s and you’ve had to give up your work or something else important to you, would you warn your children about it, suggest they choose a different profession or interest, one that wouldn’t be affected if it turned out they had the condition? Or would you let them follow their dreams and then wish you hadn’t if they had to give it all up because of some rogue tissue not enough people were interested to help figure out how to stop? If even a smidgen of that is a ‘yes’, then please consider contacting your professional body if you have one, and asking how many of its members are affected and how many have had to give up or reduce their professional activity as a result. Let me know what you discover and I’ll see what can be done with those data by way of raising the profile of the condition and making it a meaningful thing to people it doesn’t (yet) concern.

Please also consider becoming involved with research towards understanding more about this ridiculous disease and eventually putting it back in its box.

This is the UK register.

This is the British Dupuytren’s Society.

This is the International Dupuytren Society

This is the Dupuytren’s Disease Support Group on Facebook

 

[edited 24th April to add International Dupuytren Society link]

 

‘BBC Dad’ – a viral video and a flak storm

There can’t be many people who haven’t seen the unfortunate chap trying to give a serious interview on live TV while his children invade his home office and a woman in the background does one of the best unscripted comedy extractions ever seen. The interviewee was political scientist Prof Robert Kelly, an expert on North Korea, and Mission Impossible Woman was his wife. At almost the same time as the ‘comedy gold’ took off, the internet laid into Kelly with judgments ranging from accusations of abuse (he’s a controlling, authoritarian man of whom his children and his wife are clearly terrified) to assumptions that the woman was the nanny based on her Asian appearance. The latter was quickly denounced when the actual evidence emerged and a new storm on the matter of racism began.

The abusive control freak, though? Watch the video – yes he pushes his daughter away while staying focused on the interviewer, and yes he tries to keep a straight face. But this was live TV remember? His daughter sits down nearby, not at all cowed by being held away from the screen; and the straight face only barely holds. Kelly’s parents said it was hilarious and that the kids probably thought it was one of their grandparent Skype sessions.

Another perspective, understood by parents working from home whose credibility is frequently threatened by unplanned domestic intrusions, felt his pain: ‘Oh Robert Kelly. We’ve all been there. All of us, and many of us more than once’. It’s 2017 and that’s how it works.

But beyond making judgments for which we have no evidence, I think there’s a really important thing we can learn from this and that’s to change our image of credibility. If Kelly had felt able to draw his daughter in instead of pushing her away and was accustomed to doing so in such situations as this, and if the rest of us could bring ourselves to understand him as an expert with a small child snuggled under his arm, this flak-storm could never have arisen. Surely credibility comes from knowledge and communication, not from pretending that experts don’t have a domestic life, a position that’s surely a leftover from times when men ‘went to work’ and women looked after all the noisy, messy stuff at home, out of the way.

For me it’s animals – cats marching across the keyboard or chin-rubbing the camera, dogs barking at doorbells, or neighbours, having not received an answer at the front, coming through the garage to hammer on the utility room door just in case I’d rather open that one where I can’t see who’s there. I’ve never done live TV but I promise I’ve discreetly shoved and quietly hissed my way through conference calls and the occasional professional presentation. Kelly has my admiration, as does this weather man who was more dignified than either of us.

Clip credit YouTube

Clip credit YouTube

 

Update 19th March 2017: This video appeared recently, spoofing the original by showing how a multi-tasking woman would have managed. A cheap shot at men? Well yes. Funny? Very. Also though inadvertently but exactly illustrating the revised image of expertise I suggested above. I might have requested a hair-and-makeup break when the bomb came in though …

 

 

 

 

 

 

‘What does psychology have to offer at end of life?’ – an EAPC re-blog

In her well-articulated article, Dr Jenny Strachan, Clinical Psychologist, Marie Curie Hospice, Edinburgh, United Kingdom, talks about what it is that psychology has to offer when there is no mental health problem to treat:

The ‘science of mind and behaviour’ has many branches. Developmental psychology explores how our minds and behaviours are shaped by our early years’ experiences. Cognitive neuropsychology investigates how they are determined by the structure and functions of the brain. Social psychology considers the influence of the groups, large and small, in which we belong.

If psychologists in palliative care stick to a narrow, ‘clinical’ interpretation of the role, that is, direct treatment of disorder, we miss an opportunity to promote and preserve the wellbeing of all our patients. Not to mention the wellbeing of fellow staff.

Psychology is not a complementary therapy. It should not be thought of as an ‘extra’ that we add in for the patients who are struggling. It is the theory-driven, evidence-based study of being human, and it has something to offer us all.

Exactly. Psychology comes from an academic study of ordinary people of all ages behaving the way people do in the range of conditions they encounter. It deals with extremes, of course it does, but it is rooted in normality and as such has always been more able to distinguish the extraordinary within that context from the extraordinary that marks illness than disciplines defined by the illness model of behaviour. When bad things happen to people – abuse, terror, war, poverty and deprivation – it should be no surprise that personal survival depends on making the best, consciously and unconsciously, of one’s own psychological defences. This is adaptive and normal even though its expression may seem far from being either.

Strachan is talking here about terminal care but as a clinical psychologist for adults with intellectual disabilities, that was our approach before the emphasis on therapy took hold. There was triumph in finding a way for someone to use a cash point independently, in devising a one-off experiment to establish reliability of eye-pointing for a complex decision or assessing whether or not a man accused of masterminding a criminal act was faking his disability so as to appear incapable, and enabling a woman about whom many of us had concerns regarding her apparent passivity, to show us she knew exactly what getting married meant and that she wanted to get on with it.

To me, therapy is a last resort for most people because it means we’ve failed as applied psychologists to promote well-being as a key activity, whether with vulnerable groups specifically or in society at large. Our discipline establishes and extends bodies of knowledge in every area affecting humans, from building design to neurobiology, group processes and social influence, the impact of the prenatal environment, causes and management of criminality, and the social dynamics of ageing and dying. Which begs the question – why are we so focused on delivering cognitive therapy to people who may not have needed that at all had we put the same effort and priority into prevention and resilience?

I see Strachan’s article as a call for psychology to re-establish itself as the multi-dimensional science it is; one that, instead of spending all its time pulling people out of the river, is able to look upstream to see what is pushing them in*.

 

 

*This is a paraphrasing of a quote by a senior nurse in (probably) the Nursing Times at least thirty years ago and for which I can no longer find the source. The idea has been around that long and still it seems new.