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.
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.
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According 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.
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Older adults who are severely deficient in vitamin D may be more than twice as likely to develop dementia or Alzheimer’s disease than those who don’t have a deficiency, according to the largest study of its kind, published Wednesday in the journal Neurology.
“We expected to find an association between low Vitamin D levels and the risk of dementia and Alzheimer’s disease, but the results were surprising — we actually found that the association was twice as strong as we anticipated,” noted lead researcher David Llewellyn of the University of Exeter Medical School in a news release.
Llewellyn looked at several years worth of data on 1,658 Americans ages 65 and older who had taken part in the National Heart, Blood and Lung Institute’s Cardiovascular Health Study. He and his team found that adults who were just moderately deficient in vitamin D had a 53 percent increased risk of developing dementia — the general term for any severe decline in mental ability — while the risk jumped to 125 percent for those who had a severe deficiency. Similarly, for Alzheimer’s disease — the most common type of dementia — the moderately deficient adults were 69 percent more likely to develop it, while the severely deficient had a 122 percent increased risk.
“Clinical trials are now needed to establish whether eating foods such as oily fish or taking vitamin D supplements can delay or even prevent the onset of Alzheimer’s disease and dementia,” Llewellyn said. “We need to be cautious at this early stage, and our latest results do not demonstrate that low vitamin D levels cause dementia. That said, our findings are very encouraging, and even if a small number of people could benefit, this would have enormous public health implications given the devastating and costly nature of dementia.”
Currently, more than five million Americans are living with Alzheimer’s disease, which is the sixth leading cause of death in the USA, according to the Chicago-based Alzheimer’s Association. One in three seniors dies with Alzheimer’s or another form of dementia. “We think this study is important,” Keith Fargo, director of scientific programs and outreach with the Alzheimer’s Association (a major funder of Llewellyn’s research), told Yahoo Health in response to the findings. “It’s a relatively large study, and it looks like it does show a pretty substantial link.… It just doesn’t show us why there is a link.” One hypothesis, Fargo noted, is that the brain — including the hippocampus, which is one of the first areas to break down with Alzheimer’s — is full of vitamin D receptors.
There has been a growing body of research on the disease’s connection with vitamin D — the main sources of which are sunshine and supplements, with minor sources including egg yolks and oily fish like salmon and sardines. Earlier this year, a study out of Denmark, for example, also showed a link between Alzheimer’s disease prevalence and low levels of vitamin D, while earlier studies conducted in Australia and France found tenuous connections between taking doses of vitamin D and having an improved memory. The vitamin has also been linked, in various studies, to preventing asthma, diabetes, and cancer.
“People tend to not believe vitamin D news, because it seems too good to be true,” John Cannell, MD, executive director of the California-based nonprofit Vitamin D Council, told Yahoo Health. “But vitamin D has a profound mechanism of action, as it’s really a steroid hormone that turns genes on and off, and no other vitamin works that way. There are at least 1,000 different genes directly influenced by vitamin D.” The council recommends a combination of cautious sun exposure combined with supplements in winter months.
Cannell called the new study’s findings “pretty exciting,” mainly because of its size and structure. “It’s important because it’s the first cohort study of a large population — meaning that it’s forward-looking, having followed people over several years,” he said. “The next step is a randomised controlled trial, but this is as close as you can get without that.”
(Yahoo Health)
Of course, Aussies and others who enjoy frolicking in the sunshine need to be careful of the other effect of drinking up Vitamin D through their skin – which is skin cancer, of course. As we all make sure we get some sunshine, let’s also remember the advice that adequate Vitamin D levels can be achieved with just 20 minutes exposure to sunshine a day.
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Authorities 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.
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My beloved mother, (seen here just after I was born, with my brother and father), who had been an independent, forceful and capable personality all her life, from early childhood to her late 80s, finally developed Alzheimers, and once it set in it progressed rapidly.
Although we were unsure of the extent of the “loss” or “deficit” in her mental capacity, we knew something was seriously wrong with Mum in her last holiday with us, not least when she flew home to the UK and pestered the cabin staff to arrange a cab at the airport for her. Needless to say, a cab had already been organised, and, yes, she had a big note telling her the same. But she didn’t find the note, and couldn’t remember the arrangement. Still, kudos to the old girl. Getting the pilot of a 747 to radio ahead and ensure her private lift home was waiting was no mean achievement at 88. Mind you, if you knew her when she had her dander up, you wouldn’t have argued either.
Amusing though it might have been, this was the beginning of our realisation that she could no longer cope alone, a view that was reinforced over the next few weeks, until we went and got her and brought her to live with us in Australia to await the inevitable. We cared for Mum at home for a good long while, and there were some good times, to be sure, until we finally had to confront the fact that she was getting beyond our ability to look after, and arranged (with some difficulty) permanent in-patient care for her, where she lingered for some time before quietly passing away.
It is an experience that many, many people in middle age now face with their elderly parents, and unless we find a cure for Alzheimer’s – and rather horrifyingly – it is an experience many of us will face in due course, as our physical health outstrips our mental infirmity.
I know for one I shall be leaving very clear instructions for my daughter ensuring she does not feel guilty when it comes time for her to find me some residential care. Except in the case of mild Alzheimer’s, which is moving slowly, the burden on a family is simply too great to be borne for very long. Dementia patients need skilled care. I may even find my own accommodation and eventual nursing facility well ahead of time, while I can still think straight. But that isn’t the core of today’s musings.
I love this photo of Mum and Caitlin, taken in her garden when Mum was 80: to me it captures the joy of the span of a family
The thing which I found most difficult about Mum’s condition, and which I residually still feel guilt over, that can keep me awake at night years later, was not knowing the best way to “handle” her.
Simply not knowing how to talk to her, or how to try and gain her understanding and agreement. I had yet to come to terms with the fact that the latter might be impossible.
Her memory loss, conjoined to an innate deeply stubborn personality, not to mention uncharacteristic outbursts of anger and frustration, led to tension within the household.
There were occasions – too many, and I regret it bitterly – when I lost my cool, out of sadness and fear and confusion more than any real anger.
At one point, for example, after an awful fall that left her with a very nasty bump on the head and copious amounts of blood everywhere, we tried to use an old kiddie-gate at the top of the stairs to restrict her to the upper storey of our home on the very rare occasions that no one could be at home to care for her. (Usually a maximum of half an hour, and as infrequently as practical.)
Needless to say, during these periods, she was supplied with an easy to use “thermos” of tea, a pile of her favourite biscuits, (she could have happily lived on tea and biscuits), pre-tuned radio, TV, comfy chair etc. etc. Yes, she knew where the loo was. Yes, she knew someone would be back in a few minutes. Yes, she was quite happy, thank you.
All the preparation in the world made no difference. As if possessed of a vital and urgent purpose, as we left the house she would go to the staircase and fiddle with the kiddie-gate until she worked it out (no mean achievement in itself, I could never get it open other than by wrenching it physically off the wall) and we would come home to find her pottering in the kitchen, making tea and looking for biscuits.
“Hello, dears!” she cheerfully smiled, and became utterly confused when we duly grumbled (in our anxiety) that she wasn’t even supposed to be downstairs let alone using the kettle. Needless to say, she didn’t remember fernagling her way through the gate, let alone having previously swallow-dived head first from the top of the staircase to the slate floor below.
When we showed her the gate, and asked her why she had opened it, she first of all didn’t remember opening it, and then not unreasonably asked why a grown adult would have to be kept upstairs, no matter for how short a period of time. At that moment, she felt in control and no different from the way she’d felt for decades.
Lacking any guidance, we wailed: “Mum, you’re 90, with Alzheimer’s, you’ve already fallen and nearly killed yourself once, we’ve been over this.” Seemingly incapable of sharing our concern, Mum simply ignored our protestations and look at us with a twinkle in her eye. “90, am I? Gee, I did well, didn’t I?”
We were also completely uncertain as to how to deal with her inevitable depression and sadness as the loss of her faculties became clear to her.
A little hug goes a long way
I well remember one day coming into her room to say cheerio before I headed off to work, to find her staring miserably at her breakfast tray, which the living saint otherwise known as Mrs Wellthisiswhatithink had put together for her, with her favourite toast and orange marmalade (an addiction she has passed to me), a cup of tea going cold, and her tablets.
A little note was on the tray, as it was every day. “Good morning Mum! You are living in Australia with Jenie and Stephen and Caitlin – everything is OK! Here’s your breakfast, enjoy it, and don’t forget to take your pills! I am just downstairs. Love, your friend, Jenie.”
She stared with rheumy blue eyes at the note, then at the tray, and then back at the note, then at me, then back at the note. She pushed things around on the tray, uncertainly. I sat on the bed next to her, uncertain whether I should jolly her along, or just be quietly “there”. She was obviously experiencing real difficulty understanding where she was, and what she was meant to do next.
After a few more moments, she turned to me, and suddenly she had a flash of absolute clarity – a flash of accurate perception – that side of her personality which had stoically survived the Depression, a World War, the premature loss of a husband and two much loved sons – and much more – had kicked in.
She looked me in the eyes, and quietly murmured, “This is a rum do, isn’t it, Son?”
People with dementia lose many things: but they never lose the need for simple affection
Her use of the ridiculously antiquated English phrase simply served to emphasise the heart-breaking emotion of the moment.
I really had no idea what to say.
Here was the person I had looked up to all my life, confronting the obvious fact that her mind, for so long a steel trap, was deserting her, and she was turning to me, affectionately, suddenly vulnerable, and asking for me to explain. But no words to explain her situation to her came to me naturally, and anyway, she and I, although very close in many ways, had always communicated with little half-suggestions, little implications of topics, little hints. She was from an era long before the whole world wore its heart on its sleeve, with us all busily expressing ourselves for all we are worth. We were simply not the type of Mother and Son that would converse deeply on this and that, although we could, in extremis, if we had to. Dwelling on problems was simply not her way.
I just put my arm round her, and hugged her close, and said “Well, yes it is a bit, Mum, really, but Jenie and I and Caitlin will look after you, so try not to worry too much. All you’ve got to do right now is enjoy your breakfast. Here, let me help you with your pills.”
She looked at me for a few more seconds. Then she suddenly smiled.
“Jenie”, she said, “she’s my friend.” She said it proudly, as if having a friend was a fine achievement. “Yes, Mum”, I replied, “she surely is.”
“She’s my friend,” she repeated to herself. And then she said it for a third time. The thought seemed to comfort her, and she compliantly swallowed her pills with her glass of juice, and started on her cup of tea. “Oooh. Lovely cup of tea,” she murmured appreciatively, which I had heard her say every time she had started on a cup of tea for fifty years, no matter whether it was as strong as Thames mud or as weak as dishwater, scaldingly hot or tepid. “Lovely cup of tea.”
She smiled at me encouragingly, as if noticing me for the first time. “You look nice, dear. Off to work?”
I left the room choked with emotion, and was unsure then, as now, whether I had handled the moment as well as I might. And there were hundreds of such moments, if not thousands, as Mum’s mind simply flew away, bit by bit, and left her as essentially helpless as a newborn child.
Which is why I am here reproducing two articles. The first is from Kay Bransford, a follower of this blog, who writes about Alzheimers movingly and practically at her blog MemoryBanc, at dealingwithdementia.wordpress.com, and her advice is heart-warming and commonsensical. The second, to save people clicking her link, is the article to which she refers, “10 Top Tips for visiting a friend with Alzheimers.”
This is my point: when our family was coping with this problem, no one told us this stuff. But you have to – HAVE TO – know it, if you are facing this situation. And you also have to know you are not alone – to be encouraged to reach out for help, and keeping shouting and asking for help until you get it. Demand the help you need.
Meanwhile, let’s all send another ten bucks to the Alzheimer’s research charity near us, and hope like hell they crack dementia before it’s our turn.
Incidentally, if you have a minute and a half instead of ten minutes to keep reading, this little video on Kay’s site is also simple and instructive.
Dementia changes people in different ways, but there are a few things I found that will make a visit with an old friend easier to manage. My Dad was quieter, but my Mom is feistier.
Research has confirmed that dementia doesn’t magnify traits, but in general can create wholesale personality changes. Don’t be surprised to find the person you are visiting is different than you remember. I hope you will continue to visit, dementia is isolating to those suffering from this disease.
DOs
Begin with introductions. With a warm smile and relaxed posture, share a personal connection you share. Some suggestions that are helpful: “Hi FRIEND, It’s good to see you. You were one of the first people to welcome me into this community and it’s been a while since I’ve seen you” or “Hi FRIEND. It’s a pleasure to see you today. I was thinking about all the fun we had when we lived in Germany together — that was over 40 years ago! Our children played together so well.”
Bring pictures. It will help your friend understand your connection better if you can share pictures of you together.
Speak slowly, simply and pause to allow them to talk. Some individuals will feed off of your energy so focus on being relaxed and calm. Eye contact and direct interest is important.
DON’Ts
Ask what they are up to or any short-term memory questions. Short-term memory is the first to go and can set off emotions from frustration to anger and sadness if they are unable to answer the question.
Expect them to “remember”. Be prepared to carry on a one-sided conversation.
Correct jumbled memories. Allow your friend to share. Feel free to share how you remembered something, but don’t try to correct or debate facts.
Show up with an agenda of what you are going to accomplish. Most people are lonely and want to enjoy the company and some conversation. Trying to get agreement or push on a topic can often lead to stress in the person with dementia.
The last don’t has been a new item for me. With my father gone, the normal routine we had has also left and now my Mom prefers to spend our time together reviewing her calendar or burial plans. We will discuss the day of the week over and over for a half hour, move onto the burial date and then go right back into the day of the week. I arrive knowing there is no agenda, and can easily sit with her with a smile on my face and calmly answer the same questions over and over until she feels more comfortable. This too will pass. Relaxed.
Here is a post that made me consider this topic. I’m frustrated that more people don’t use the umbrella term of “dementia” but it includes some good information in a longer format that you may find useful.
TOP TEN TIPS, from Huffpost
Tom and his wife, Nancy, were going to visit George, one of Tom’s previous colleagues at the University of Cincinnati. This was their first visit to George at his long-term care facility and they were quite nervous.
They didn’t know precisely what condition George was in, and they had no idea how to interact with him. What they knew for sure, however, was that they couldn’t visit the way they always had when the three got together.
Family members or other very close loved ones who are accustomed to visiting may have a set routine and may have learned some or all of the tips below. But if you’re a friend visiting for the first time, or if you don’t visit the person very often, you may feel awkward and not know what to do.
An entire book could be written about this topic. I’m going to list some of the most important things to do (and not to do) when you visit a friend with dementia either in their home or in a facility of some sort.
I have compiled these tips based on four sources: an article of mine published here on the Huffington Post, an article published by Carole Larkin on the Alzheimer’s Reading Room, and personal communications from Teepa Snow (05.30.13) and Tom and Karen Brenner(10.03.13)
When I reviewed the sources I discovered that several tips were found in two or more of them. I discovered that the total of 25 items could be distilled down into 10:
1. Start off by looking friendly, making eye contact, offering a handshake and introducing yourself. (Snow, Larkin)
2. Be at their level physically — bend down if necessary — for example, if they are in a wheelchair. (Larkin)
3. Talk about the old times more than recent information. (Snow)
4. Don’t ask if they remember something. (Marley; Larkin)
5. Speak calmly, slowly and in short sentences. (Larkin, Snow)
6. Ask only one question at the time and pause between thoughts or ideas to give them a chance to answer. (Larkin, Snow)
7. Don’t correct them or argue with them. (Marley, Larkin, Snow)
8. Keep memories positive. Don’t bring up topics that could upset them. Turn negatives into positives. (Marley, Snow, Larkin)
9. Do something with the person rather than just talking to them. Bring pictures, CDs of music the person used to enjoy, or other “props” (such as items related to one of the person’s special interests), to bring up old memories. (Snow, Brenners)
10. Tell them what you are going to do before you do it – especially if you are going to touch them. (Larkin)
Following these tips should make you feel more at ease and make your visit more enjoyable.
Does anyone have any additional tips for visiting a friend with Alzheimer’s?
You may also care to read my other musings on dementia:
A post on a FB friend of a friend’s page encouraged us to try and discover “What is Fragile X Syndrome?”
This 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.
Though 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.
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.
Anyhow: 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.
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.
Keep the conversation going. Tell others! Feel free to print the article, too.
You could spend time doing more crosswords and eating vitamins, or just up your bubbly intake. I think I know what the Wellthisiswhatithink household will be doing …
That’s my excuse, and I am sticking to it.
A new study has shown that consuming three glasses of champagne per week could help to improve your memory. Scientists at Reading University have found that regular champagne consumption can help to fight brain disorders such as dementia and Alzheimer’s disease.
In the study, champagne was added to the food of a test group of rats every day for six weeks. The rats then spent their time running mazes, being tested to see if they could remember where the treats were placed. The rats without champagne in their diets had a 50 per cent success rate. The rats which had been consuming champagne in their food had a 70 per cent success rate overall.
Professor Jeremy Spencer, who led the research, hopes to undertake human trials next. He will be asking approximately 60 pensioners to consume champagne three times per week over a period of three years. He said of the study, “dementia probably starts in the 40s and goes on to the 80s. It’s a gradual decline and so the earlier people take these beneficial compounds in champagne, the better.” Professor Spencer went on to explain that it is phenolic acid, found in the black Pinot Noir and Pinot Meunier grapes used in champagne production, which can boost memory.
I dont care what you say. This looks like more fun than lumosity.com
A spokesperson from the UK’s Alzheimer’s Society has commented, “People should not start celebrating just yet. This is the first time a link between champagne and dementia has been found. A lot more research is needed.”
OK, misery guts. Excessive alcohol consumption has been linked to a number of other health problems, so this research alone is not reason enough to start upping your consumption.
If, however, you already enjoy a glass of bubbly from time to time, it seems you may have more to celebrate than you realised. Or Pinot Noir, I presume.
Anyone wishing to donate a bottle of Bollinger Special Cuvee to Wellthisiswhatithink’s fearless reporter so that I can remember to post regularly, please feel free.
Keep the conversation going. Tell others! Feel free to print the article, too.
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.
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.
Our older people deserve better from us. Happy birthday, Mum.
Those who have followed this blog for a while know that I have a personal interest in Alzheimer’s Disease. Yesterday would have been my mother’s 96th birthday, perhaps, had Alzheimer’s not claimed her three years ago.
I have also written about the week of my mother’s death in the short story that is at the back of my book, 71 Poems & One Story.
Get behind Ms Buttrose’s campaign, before it’s too late
So I was doubly interested today to turn on the TV and catch famous Australian journalist and editor Ita Buttrose speaking at the National Press Club in Canberra today. The indomitable Ms Buttrose is now President and Ambassador for Alzheimer’s Australia, the peak advocacy body for those working in the field in Australia, and for the dementia patients they care for.
Her organisation is pleading with the Government to increase funding for research into this hideous illness by $200 million in the next 18 months. An ambitious target, but one that knowing Ms Buttrose’s indefatigable energy (and contacts) could hopefully be seen as realistic.
And a boost in research is long overdue. This most persistent and widespread disease, which robs its victims of dignity, capacity, and eventually their life, receives far less in research funding than HIV, heart disease, cancer, and even mental illness – which itself is appallingly badly funded.
A worthwhile goal
Whilst it is easy to get swept up by the emotion of the topic, I was very struck by Ita’s point that if researchers could delay the onset of dementia by just five years then the number of people with the problem would be halved.
In Australia, that would mean savings to the healthcare and aged care sector of 67 billion dollars by 2040. If that, in itself, doesn’t make the argument for significantly increased spending incontrovertibly one that should be supported, then the world – not just the sufferers – has gone mad.
By 2030, if nothing changes, 500,000 Australians will have dementia. By 2050, that figure will reach one million. That’s the equivalent of a city three times the size of Canberra: a city full of people who were once proud, strong and independent, and who are now lost, frightened, sick, and – especially as the illness increases its grip – frequently despairing.
Ms Buttrose is, quite rightly, keen to emphasise the positives, to hold out hope for a cure or better treatment, and to advocate for the support and well-being of sufferers, who deserve dignity and optimism in their care.
But if we do not accede to her demands, our caring systems, (which are already, as I sadly know, stretched to breaking point), will simply collapse. Sometimes, the cheery insistence of those who must, per se, strike a positive note, needs to be balanced with a little stark truth as well.
Because if we do nothing?
If we fail in this task, then the effect on families and individuals of the lack of care will be too horrible to contemplate.
Aged care facilities will become increasingly like prisons, effectively incarcerating sufferers for their own protection through lack of staff and money to take care of them properly.
Aware of the issues surrounding residential care, families will increasingly keep their aged dementia sufferers with them – leading to increased neglect and even abuse as the healthy buckle under the strain of caring for their elderly relatives without necessary facilities, drugs, or training. The blunt truth is that this is already happening.
Single demented people without social support structures – already a common sight in our shops and on our streets – will wander the bye-ways of life, confused, angry and frightened – burdening passers-by and the police and ambulance services.
Elderly suicides will spike dramatically. So will murder-suicides.
What can you do?
If you support Ita Buttrose’s campaign, please take a moment to write about it yourself, or re-blog or tweet this article.
Please also write to Alzheimer’s Australia at nat.admin@alzheimers.org.au expressing your support, and also visit their website where you can discover a vast array of resources, and opportunities for you to help. And if you need immediate, direct advice, just call the National Dementia Helpline on 1800 100 500.
Please also write to your local MP, or email the Prime Minister, Julia Gillard, urging our politicians to agree to an immediate substantial increase in research funding.
And if you are reading this overseas, please contact your local organisation, and politicians, to urge an increased effort in your country, too. And in America, specifically, you might like to join the fight for a fundraising stamp to be produced for Alzheimers research by clicking here.
This means you. Yes, you.
If for no other reason, make some active move in support of this campaign out of enlightened self interest. I am now 55. I really don’t want to get to 65 or 75 without some substantial progress having been made.
Like many, I have seen what Alzheimer’s does at first hand. No thank you, very much. If you doubt me, visit your local acute aged care facility and offer to volunteer for an afternoon. Then imagine you’re the patient, not the volunteer.
You won’t need any other motivation to get involved, believe me.
I was deeply saddened to read news reports of a mercy killing/suicide of a man and his wife: a man who had recently written in The New York Times about his love for his Alzheimer’s-stricken wife, who has killed her and himself in what their family called an act of “deep devotion”.
Having nursed my mother through Alzheimers, with the endlessly patient and loving help of my family and professional carers, I feel I now have some insight into this awful illness. In the early days, the progressive loss of memory and resulting confusion is manageable, can even have its funny moments, and the sufferer is still able to enjoy some quality of life, to take pleasure in company and family, exercise and eating.
There is never a time when you stop loving your parent and grand-parent. But there is a time when the greatest love a family can give is to let them go peacefully. Betty Yolland, 1916-2008
In its late stages, though, there is truly nothing – nothing – about life with this illness which makes the prolonging of existence worthwhile. In my mother’s case, mercifully still corpus mentis into her nineties, (pretty much), this final complete decline into dementia lasted at least eighteen months. Although she had a number of near misses with falls and fits, in all but one case (when she was revived by a well-meaning doctor with no other instructions, and therefore subjected to another six months of misery) she remained stubbornly alive, her body fighting on long after her mind had left.
I have since spoken to many people who have experienced the same thing. Universally, they report having no idea how awful it could be until they experienced it, and again, almost to a person, they argue now in favour of being able to deliberately end someone’s life when it becomes a meaningless, painful and incredibly unhappy experience.
Many, but not all, medical practitioners and nurses will agree.
And the great unspoken truth, of course, is that pain medication in the form of morphine is often given to people who have no hope of survival and recovery, in increasing doses, with a “by-product” of the process being death. But whether for cancer, or Alzheimers, or any other degenerative disease, our medical professionals, and the families of those concerned, should not have to rely on such subterfuge in a civilised society.
In my opinion, this endless prolongation of life is hypocrisy, and it is wicked. Those who argue for the primacy of palliative aged care and a refusal to contemplate the deliberate ending of a life clearly have not spent long in the company of someone with advanced Alzheimers.
Until, and if, we manage to make caring for the brain as effective as we have now made caring for the body, prolonging physical life well beyond “three score years and ten” in many cases, we simply should not subject sufferers to the indignity and misery of final stage dementia, when these once worthwhile and intelligent people lie in bed, unable to feed themselves, incontinent, screaming, crying, frequently in pain, unaware of their surroundings, and unable to recognise family and friends, or even to know where they are.
Imagine – irreversibly – untreatably – being awake, aware of yourself as a person, but unaware of who you are, who anyone else is, or where you are.
Imagine the terror. Why do we sentence our beloved old people to that?
I hasten to add, I am talking about people with advanced, late stage dementia. There is much great work being done with people in the early stages of this illness. I am arguing for dignity in dying for those who have passed into the nether region of late stage dementia and who have no quality of life left, whatsoever. In my opinion, we need a three stage plan.
We need to continue the fight to find a cure and effective treatment/maintenance for people with Alzheimers, as we indeed are, but as our population grows and ages, it becomes an ever-increasing priority. Part of that fight should be to continue the effort to advise us all on the best ways to keep our brains as healthy as possible, for as long as possible.
Second, we need to pass dying with dignity laws so that people with living wills that have stated they do not want their life unreasonably prolonged when they have lost control of them are not forced to stay alive against their express wishes. And so that brave spouses or children do not have to break the law to render them mercy, or be forced to take their own lives, in part, perhaps, to escape prosecution for a final, incredibly courageous act of love.
And third, we need to respect those who raise legitimate concerns about protecting the interests of the elderly and infirm, but to reject – out of hand – the right of those of a particular religious persuasion to allow their personal beliefs – especially when expressed in alarmist or coercive manner – to overwhelm the democratic process of offering people stricken with this illness a quiet, gentle passing.
I am a Christian. In my opinion, those who demand that our elderly continue to suffer until their hearts or lungs give out on autopilot will likely spend eternity in Hell for their thoughtless dogmatism.
A Hell that will be just as awful as the one they blindly sentence millions of other people to, right here on earth, despite the best efforts of our wonderful aged care professionals.
A short story on the events surrounding my mother’s death is in my recently published book, 71 Poems & One Story. A share of any profits go to the Bali Children’s Foundation and Alzheimer’s Australia.
The story of Mr Snelling and his wife follows (from Yahoo):
Charles Snelling and his wife Adrienne in happier times
The bodies of Charles Snelling and his wife, Adrienne, both 81, were found Thursday in their home in Trexlertown, eastern Pennsylvania.
“Our father ended our mother’s life and then took his own life as well,” the family said in a statement.
“This is a total shock to everyone in the family, but we know he acted out of deep devotion and profound love.”
The coroner said Charles Snelling shot himself; autopsy results on his wife were pending.
Charles Snelling, prominent in local political circles, responded late last year to a call from Times columnist David Brooks for people older than 70 to evaluate accomplishments and lessons in their lives.
In an essay published online in December, Snelling looked back on the turn his prosperous and happy life had taken, mixing memories of the young woman he fell in love with at first sight with the challenge of caring for someone with dementia.
They had five children in a life he describes as “charmed,” partly because he was from a wealthy, well-connected family.
But six years ago, Alzheimer’s disease arrived.
“It never occurred to me for a moment that it would not be my duty and my pleasure to take care of my sweetie,” he wrote. “After all, she took care of me in every possible way she could for 55 years.”
He and Adrienne Snelling “were wonderful parents and grandparents”, the family said. “And the love they shared during their 61-year marriage was total and complete.”
Snelling was a pilot and served for four years as president of the city council of Allentown. He also chaired the authority that manages Reagan and Dulles airports in the Washington DC area.who had recently written in The New York Times about his love for his Alzheimer’s-stricken wife killed her and himself in what their family called an act of “deep devotion”.
The bodies of Charles Snelling and his wife, Adrienne, both 81, were found Thursday in their home in Trexlertown, eastern Pennsylvania.
“Our father ended our mother’s life and then took his own life as well,” the family said in a statement.
“This is a total shock to everyone in the family, but we know he acted out of deep devotion and profound love.”
The coroner said Charles Snelling shot himself; autopsy results on his wife were pending.
Charles Snelling, prominent in local political circles, responded late last year to a call from Times columnist David Brooks for people older than 70 to evaluate accomplishments and lessons in their lives.
In an essay published online in December, Snelling looked back on the turn his prosperous and happy life had taken, mixing memories of the young woman he fell in love with at first sight with the challenge of caring for someone with dementia.
They had five children in a life he describes as “charmed,” partly because he was from a wealthy, well-connected family.
But six years ago, Alzheimer’s disease arrived.
“It never occurred to me for a moment that it would not be my duty and my pleasure to take care of my sweetie,” he wrote. “After all, she took care of me in every possible way she could for 55 years.”
He and Adrienne Snelling “were wonderful parents and grandparents”, the family said. “And the love they shared during their 61-year marriage was total and complete.”
Snelling was a pilot and served for four years as president of the city council of Allentown. He also chaired the authority that manages Reagan and Dulles airports in the Washington DC area.
Australians seeking information and support on Alzheimers should start here: http://www.fightdementia.org.au/ Alzheimer’s Australia have not been approached to lend support for this article, and may not support it or the opinions I have expressed.
It's the thin line between reality and fantasy. It's the thin line between sanity and madness. It's the crazy things that make us think, laugh and scream in the dark.
Some years back, we lost our Mother to Alzheimer’s.
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.
According 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.
Authorities 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.
This 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.
Though FXS occurs in both genders, males are generally affected with greater severity.
Anyhow: we note one can donate over at fragiulex.org.au, so we shall probably flick them a tenner.
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”.
Well, This Is What I Think 