Posts Tagged ‘Alzheimers’

Let’s talk about Alzheimer’s. Really talk.

Posted: September 20, 2019 in Life, Political musings
Tags: , , , , , ,
11

Some years back, we lost our Mother to Alzheimer’s.

She was a gregarious and loveable person, and we kept her at home for as long as we could, until her confusion and behaviours made it simply impossible.

In the end, in distraction, we found her a good old folk’s home, and with great difficulty, too, as the aged care sector in Australia is a nightmare to navigate successfully. And there she duly whiled away her final months – in safety, but often in tears.

The tears weren’t just “Sundowners” – a well-known mood-shift that occurs in Alzheimer’s patients, especially around late afternoon. Fading light seems to be the trigger. The symptoms can get worse as the night goes on and usually get better by morning.

It was distressing for her, for the care-worn staff, and for us, so we often used to try and time our visits for this time of day to give her a lift.

You can read more about it here: not to mention my own musings about ageing.

But her general distress was more than that.

Like a recent report in Australia revealed, she was one of 40% of old age home residents suffering habitually from depression.

The depression was caused by psychological dislocation – a loss of friends and family, a loss of whatever she could recall as “normal”, a loss of privacy, an inability to relate to the new world around her, or to make friends.

To get away from the psychobabble for a moment, in simple terms her biggest problem was that she was lonely. And in simple terms, there was very little anyone around her could do about it.

In the UK and now in Australia, TV series have revealed how teachers visiting elderly patients with a bunch of four year old pre-schoolers in tow is good for both groups. The elderly people experience physical and cognitive improvement, and improved mood, too. The kids just seem to love it. Care workers have known this for years – taking children, especially young children, into care environments is invigorating for the residents. Ditto animals, especially if they had companion pets before. They are both a dash of welcome reality, for people for whom reality has too often become dark and bleak.

As we move into a period where our aged care services worldwide are going to come under increasing pressure as the Baby Boomers start to age and die off, we wonder if we cannot find a better model for looking after our frail friends, family members and neighbours.

In less urbanised (and often poorer) environments, the aged stay in the community much longer – perhaps throughout their final days – cared for on an ad hoc basis by those in the village around them. They can wander safely, and access their neighbours, children, and animals.

They often still engage in food preparation, or piecemeal work.

For thousands of years, such elderly people have been loved and nourished in the environment they have lived in all their lives.

As a by-product of that situation, their lives are not endlessly prolonged by medical intervention which is freely available in care environments, but not necessarily to the long-term benefit of the patient. In a village in Africa, the Steppes, or Asia, an elderly person struck with an infection, or complications from a fall, may just fade away.

But in a Western care environment they are resuscitated, whisked off to hospital and then back to their care home, and regularly pumped full of prophylactic drugs.

So the question we need to face is: just because we CAN save an elderly patient, does that mean we should, if the point of saving them is simply to return them to a place that through no-one’s fault, they are uncomfortable and unhappy in?

There is another assumption that needs to be challenged, too, which is someone with a diagnosis of Alzheimers is someone who is gaga. This is simply not true. Increasingly, people live with Alzheimer’s for a very long time, buoyed up by better medication, exercise, deliberate mental engagement, engagement with other people and more. We are going to need to educate the public about the positive possibilities for people with dementia, and organise society so they are better integrated with the world around them. It is vital to their progress. And happiness. One thing that seems sure to us is that plonking them in “traditional” aged care will do little to prolong their useful life – and this is not to criticise the dedicated and skilful people that work in the sector. They do their best.

Ultimately, we need to ask “What is the most important thing for an elderly person with Alzheimer’s?” In our view, it is surely that they live out their final days with dignity and as much contentment as possible. Our current systems may provide the former – although they often do not – but very few people would argue that they do the latter.

A little contentment in our declining years shouldn’t be too hard to devise, but in our view we need to start rethinking aged care fundamentally, and now. Because right now, we are failing our older brothers and sisters, and it’s only going to get worse.

We need to think harder, and do better.

 

 

Robin Williams committed suicide – but it might not be depression that killed him.

Posted: November 5, 2015 in Popular Culture et al, Science
Tags: , , , , , , , , ,
1

mork

 

When Robin Williams killed himself in August 2014, depression was considered the culprit.

But the beloved film star and comedian was in fact struggling with a demon even more sinister: Lewy body dementia, a little-known and often misdiagnosed disease that manifests as a combination of the worst symptoms of Alzheimer’s disease, Parkinson’s disease, and schizophrenia. Robin Williams’ widow, Susan Williams, shared this diagnosis, which was revealed in an autopsy, Tuesday in an interview with People magazine and ABC.

A few days after Williams’ death, his media representative, Mara Buxbaum, said in a statement: “He has been battling severe depression of late.”

rubberNow we know that wasn’t the full story: “Depression was one of let’s call it 50 symptoms, and it was a small one,” Susan Williams said Tuesday, in her first public interview since her husband’s death.

Lewy body dementia, she said, “was what was going on inside his brain, the chemical warfare that no one knew about.”

And even if the 63-year-old had not ended his own life, the disease would have killed him within a few years, she said.

Lewy body dementia usually strikes at age 50 or later. Like Parkinson’s, it begins with abnormal protein deposits called Lewy bodies, which disrupt brain cells’ normal functioning and later cause them to die. The disease’s plethora of terrifying symptoms start slowly but worsen over time, and include: Alzheimer’s-like memory loss and dementia; Parkinson’s-like tremors and loss of balance; and terrifying, schizophrenia-like hallucinations. The symptoms “present themselves like a pinball machine,” Susan Williams said. “You don’t know exactly what you’re looking at.” Perhaps worst of all, at least at first, the patient can be fully aware of his or her own decline.

After it is diagnosed, Lewy body dementia usually kills a person within five to seven years. There is no cure or effective treatment.

Despite the fact that it is little known, Lewy body dementia is not rare; in fact, it is one of the most common forms of dementia, affecting more than 1 million Americans, according to the National Institute on Ageing. But because it bears many similarities to other degenerative diseases like Parkinson’s and Alzheimer’s, it is frequently misdiagnosed. It can take more than a year and visits with multiple specialists to get a correct diagnosis. According to Susan Williams, a coroner’s report revealed signs of Lewy body dementia, as well as early-stage Parkinson’s.

Although Williams didn’t know he was suffering from Lewy body dementia, he seemed to know he was losing his mind.

“He was aware of it,” Susan Williams said. In her opinion, she told People and ABC, his suicide was his way of taking control of an impossible situation. “He was just saying no,” she said. “And I don’t blame him one bit.”

The news may reignite the ongoing debate about “dying with dignity”. For a man of the intellectual and emotional depth of Robin Williams, the perception – even if not yet formally diagnosed – that he was losing his cognitive function would have been unbearable. Especially as we know he had concerns that his career was faltering and he faced certain financial pressures.

It may be that depression contributed to his death, or it may be that it was a carefully-considered and rational response to an awful situation that he felt would only get worse. As his wife says: “taking control”.

We will never know, but it is something to ponder … It is also worth considering that a different cultural response to chronic illness and dying might have encouraged him to hang around a little longer, and to end his life more gently, in the bosom of his family, with the people around him given an opportunity to say goodbye.

Again, we will never know.

(Slate and others)

Chronic use of common sedative linked to Alzheimer’s risk

Posted: September 10, 2014 in Science
Tags: , , , , , , , , , , , , ,
1

A woman suffering from Alzheimer's disease holds the hand of a relativeAccording to a report emanating from Paris (carried by AFP) long-term use of drugs commonly prescribed for anxiety and sleeplessness is linked to a greater risk of Alzheimer’s, a study said on Wednesday. Whether chronic use of benzodiazepines actually causes the brain disease is unknown, but the link is so glaring that the question should be probed, its authors said.

Dementia affects about 36 million people worldwide, a tally that is expected to double every 20 years as life expectancy lengthens and the “baby boom” demographic bulge reaches late age.

Researchers in France and Canada, using a health insurance database in Quebec, identified 1,796 people with Alzheimer’s whose health had been monitored for at least six years before the disease was diagnosed.

They compared each individual against three times as many healthy counterparts, matched for age and gender, to see if anything unusual emerged.

They found that patients who had extensively used benzodiazepines for at least three months in the past, were up to 51 percent more likely to be diagnosed with Alzheimer’s. The risk rose the longer the patient had used the drug.

But the investigators admitted the picture was foggy.

Benzodiazepines are used to treat sleeplessness and anxiety – symptoms that are also common among people just before an Alzheimer’s diagnosis. In other words, rather than causing Alzheimer’s, the drugs were being used to ease its early symptoms, which could explain the statistical association, they said.

“Our findings are of major importance for public health,” and warranted further investigation, said the team.

“(…) A risk increase by 43-51 percent in users would generate a huge number of excess cases, even in countries where the prevalence of use of these drugs is not high.”
The paper, published by the British Medical Journal (BMJ), is led by Sophie Billioti de Gage at the University of Bordeaux, southwestern France.

In a comment, Eric Karran, head of research at Alzheimer’s Research UK, said the study gathered data over a five-year period only, whereas Alzheimer’s symptoms often appear a decade or more before diagnosis.

“It is difficult to tease out cause and effect in studies such as this,” he said. “We need more long-term research to understand this proposed link and what the underlying reasons behind it may be.”

If you are concerned

Your first step, of course, is to ask your GP or health professional. Benzodiazepines are a class of drug commonly known as tranquillisers and sleeping pills. Benzodiazepines are available on prescription only in Australia, and are mainly used for problems relating to anxiety and sleep.

Approximately 10 million scripts are written annually in Australia. Apart from a fall in prescribing in the early 1990s, prescribing rates have remained fairly constant, with a slight increase in the last few years.

It is estimated that one in 50 Australians are currently taking a benzodiazepine and have been taking the drug for longer than 6 months.

Women are prescribed benzodiazepines at twice the rate as for men, and older people (over 65) receive most of the benzodiazepine scripts for sleeping problems.

The most common benzodiazepines prescribed in Australia are Temazepam, Diazepam, Alprazolam and Oxazepam.

The following is a list of oral benzodiazepines available in Australia. Benzodiazepines are often produced by different drug companies and there may be different trade names for the same drug.

Long Acting
Generic Name Trade Name
Diazepam Valium
Ducene
Antenex
Diazepam Elixir
Diazepam –DP
GENRX Diazepam
Valpam
Clonazepam Rivotril
Flunitrazepam Hypnodorm
Rohypnol
Nitrazepam Mogadon
Alodorm
Clobazam Frisium
Short Acting
Generic Name Trade Name
Alprazolam Xanax
Kalma
Alprax
Alprazolam
Alprazolam –DP
GENRX
Zamhexal
Temazepam Normison
Temaze
Temtabs
Oxazepam Serepax
Murelax
Alepam
Lorazepam Ativan
Bromazepam Lexotan
Triazolam Halcion

More information about benzodiazepines, their uses, and their brand names can be found here.

We stress we do not intend this article to cause alarm, or to encourage anyone to stop taking drugs they have been prescribed. Articles of that kind abound on the internet, and to the contrary we are of the belief that one of the reasons these drugs are prescribed so often is because they are inexpensive and effective. If you have any concerns, speak to your health professional.

However we do agree with the report’s writers that any possible causal link between them and Alzheimer’s needs to be investigated if only for it to be dismissed.

Dealing with sleeplessness

Chronic use of any drug is likely to have uncertain effects. Where benzodiazepines are prescribed for assistance with sleeplessness, we would opine that other ways to address the problem should be tried as well.

These include ensuring you have adequate physical exertion during the day (as people age they tend to become more sedentary), avoiding TV and other stimulants like smartphones and computers for at least 30 minutes before sleep, seeking to calm anxiety about whether you will go to sleep with positive awareness of your overall wellness, employing relaxation exercises, (simple deep breathing can make a huge difference), meditation, and keeping the bedroom at a mild temperature, neither too hot nor too cool. It is unwise to eat a large meal to close to bed-time. Better to eat a snack that is large enough to satisfy your hunger and then enjoy a more substantial breakfast. Reading a book is a classic and successful way to calm down before sleep, but be aware that reading a book on a Kindle or iPad can have the opposite effect – the bright light confuses your brain into thinking you want to still be awake. Similarly, lighting for reading books should be bright enough to let you see, but not too bright.

A positive decision not to worry about life issues overnight is a wise move to combat sleeplessness as well. Write down a list of everything you feel is unresolved in your life, and make a determination to tackle it the next day. Nothing can be done while you lie in bed anxiously awake anyway. This simple act of intention can result in better sleep.

It is a sad fact that sleeplessness creates a vicious circle in our lives – tiredness creates anxiety and sense of worry about our achievement and problem solving ability – the anxiety thus created keeps us awake – we get more tired and more anxious – and so it goes on … For some people it can be a devastating cycle, resulting in deep depressive episodes during which their life can be at risk, and in our observation benzodiazepines are often employed by health professionals to break the cycle. But the natural state of the human body is to sleep, and it appears that we need to find natural ways to encourage it to do so instead of simply popping a pill.

Don’t get Alzheimer’s in America. They shoot you for it.

Posted: November 29, 2013 in Political musings
Tags: , , , , , , , , , ,
5

Alzheimer'sAuthorities in northwest Georgia say a man shot and killed a 72-year-old who he thought might be an intruder but who turned out to be a wandering Alzheimer’s patient.

Walker County police told the Chattanooga Times Free Press that Ronald Westbrook had walked about 3 miles in the sub-freezing temperatures before knocking on Joe Hendrix’s door just before 4 a.m. Wednesday.

Westbrook,who had one or two dogs with him, apparently wandered three miles away from a home he shared with his wife, who did not know he was gone until contacted by police. Her suffering can only be imagined. Westbrook was wearing only a light jacket and straw hat in sub-freezing temperatures.

When he knocked the door, Hendrix’s fiancee didn’t answer, instead calling police.

Sheriff Steve Wilson, who used to attend church with the ex Air Force pilot patient, said before deputies arrived, Hendrix went into the backyard with his handgun, where he saw Westbrook in silhouette.

Wilson says the 34-year-old Hendrix recalled giving Westbrook several verbal commands, but the advanced Alzheimer’s patient didn’t respond. Reports say Alzheimer’s had left the old man virtually mute.

Hendrix then fired four shots. One hit Westbrook, in the chest, killing him.

Wilson says charges could be filed but says Hendrix didn’t violate any laws by walking out into his own yard. But according to local newspaper The Chatanoogan, he is currently unlikely to be charged.

With anything.

Georgia believes in the “no requirement to retreat” principle. Even from tired, old, cold, straw-hatted men, who can’t speak to defend themselves. I just hope their legislators are proud of themselves.

We learn something new: Fragile X Syndrome

Posted: October 10, 2013 in Humour, Popular Culture et al
Tags: , , , , , , , , , , ,
0

A post on a FB friend of a friend’s page encouraged us to try and discover “What is Fragile X Syndrome?”

assnThis information is from Fragilex.org.au, which has a bunch of resources talking about this genetic problem, and how to find out more about the illness and get support.

Fragile X Syndrome (FXS) is a genetic condition causing intellectual disability, behavioural and learning challenges and various physical characteristics.

It is also the most common single gene cause of autism worldwide.

It appears in people of all ethnic, racial and socio-economic backgrounds.

autism awarenessThough FXS occurs in both genders, males are generally affected with greater severity.

Every week in Australia, for example, one child is born who is fully affected and 20 children are born who are carriers.

It is estimated that 5 per cent of people with a diagnosis of an Autism Spectrum disorder also have Fragile X.

Although there is currently no cure, early intervention by health and educational professionals can assist people living with Fragile X to reach their full potential.

Fragile X Association of Australia is a non-profit organisation that provides support for families living with Fragile X and works to increase the awareness of the condition.

FXTAS

Male carriers over the age of 50 have a 20-40% chance of developing Fragile X Tremor Ataxia Syndrome (FXTAS). This  is a neurological condition similar to Parkinsons Disease, and may involve unsteadiness (ataxia), intention tremor (shaking) and memory problems.

Female carriers may also suffer from FXTAS, but is it less common.

Initial signs of the disorder may include difficulty writing, using utensils, pouring and walking. The symptoms progress over years or decades until many daily tasks become very difficult.

There may be a short term memory loss, anxiety, decreased sensation to touch in the lower extremities and rigidity in movement.

It is common to find these carriers mis-diagnosed as having Parkinsons disease, senile dementia or Alzheimers disease. More information on FXTAS on the NFXFsite.

FXPOI

Female carriers may suffer from Fragile X Associated Primary Ovarian Insufficiency (FXPOI), a problem which can lead to infertility and early menopause in some female premutation carriers.

Primary Ovarian Insufficiency (POI) is a condition in which the ovaries stop functioning normally in a woman younger than age 40. Common symptoms of POI include absent or irregular periods and infertility.

POI is not menopause, even though women with POI may develop symptoms similar to those of menopause, such as hot flushes and vaginal dryness. POI differs from menopause in some important ways:

  • Women with POI can still get pregnant in some cases because their ovaries may function irregularly to release viable eggs where as women who have completed menopause can not fall pregnant because their ovaries no longer release eggs.
  • Women with POI can experience a return of/or irregular periods, however, women who have completed menopause will not have menstrual periods again.

Studies show that women who have POI of unknown cause have a 1/50 chance of being a carrier of Fragile X therefore the testing of women experiencing either POI or early menopause like symptoms is recommended.

Studies show that approximately 1 in 4 women carriers experience FXPOI and another 1 in 4 experience early menopause. It is thought that all women with premutation status have some decrease in ovarian function. However many women with the Fragile X premutation are able to conceive and family planning options are recommended. More information on FXPOI at the NFXF site.

dnaAnyhow: we note one can donate over at fragiulex.org.au, so we shall probably flick them a tenner.

As we roamed the interweb for information, one thing that stands out very strongly is the need for everyone to understand a whole bunch of autism spectrum disorders not as illnesses, but as a different kind of reality, with their own strengths and weaknesses. That strikes us as a very positive thought.

If we could stop seeing one style of life as “normal” and others as “abnormal”, and instead just see all of us as human beings, but with different normalities and realities, how much better the world would become.

For the same reason, we hate the term “disabled”. It inevitably implies a loss of ability, a “less-ness” when viewed against more common states of being. We much prefer “differently abled”, a term we heard from a warm-hearted man some years ago and immediately adopted.

When one sees what “differently abled” people can achieve – Stephen Hawking, anyone? – the point becomes clear.

don quixote Meanwhile, whilst we are on health matters, our continuing quixotic battle to overcome the effects of perfectly normal ageing continues unabated. Yesterday we found to our deep consternation that we could not remember the word “egalitarianism”.

It wasn’t just on the tip of our tongue, it was enveloping the whole of the front of our mouth, but we could not vomit it out for love nor money. No amount of forehead-knotted willpower would bring the bloody word to mind.

So alarmed did we become at the obvious gradual collapse of our mental faculties, that we rang the talkback guest who was on the wireless talking about Alzheimers.

She was very reassuring. Apparently middle aged people do simply find it harder to bring words to mind: it doesn’t mean we’re all headed to terminal mental decline the day after tomorrow. The brain just gradually gets slower: just like the rest of the body. Boo, we say. Boo, and bugger it. We may have to rediscover the joys of a dictionary and a Thesaurus, Dear Reader, instead of, as for the last thirty years, wandering around pretending to be one.

And we are taking up crosswords again, although we suspect it will be an unhappy experience, at least initially. Then again, we did remember “quixotic” a moment ago, so all is perhaps not yet quite lost.

Touching story and a song about Alzheimers

Posted: October 23, 2012 in Political musings, Popular Culture et al
Tags: , , , , , , , , , , , , , , ,
0

Imagining « itsintuition.

As everyone knows, I am seriously interested in this topic. And this is a very helpful contribution. The story encapsulates perfectly the pain and pressure felt by the “survivors”  of Alzheimers: The families that are “left behind” as an Alzheimer’s patient retreats inwardly. So does the raw, terrifically honest song.

I recommend you to click on the link above and to read and watch. Even more, I recommend you work to ensure Alzheimer’s research keeps up with all the “sexier” research funding choices around.

Ronald Regan died of Alzheimers

I wonder what the Gipper would have said?

See, Alzheimers isn’t sexy. We keep its effects hidden, behind neat suburban doors, and in nursing homes.

As a disease, it stinks. It sucks. There is no upside, no recovery. The outlook is simply awful. And it frequently strikes down leaders, intelligent people, creative people – the best we have.

Imagine the productive capacity that would be unleashed into our world if we could delay its onset by a year – five years – or forever?

But we need to beat it now, or the future for our families, our social services, and our elderly, is bleak indeed.

And I haven’t even heard it mentioned in the US Presidential election yet.

Pity, huh?

Related articles that may interest you