I WORK IN a memory clinic. To be precise: a Cognitive, Dementia and Memory Service (CDAMS) in a large public hospital – but no one ever calls it that. People come in to see me, and I can hear them at the reception area just outside my office, their voices wavering and anxious: ‘I have an appointment with the memory doctor.’
The memory doctor. It’s a misnomer, because whatever I might be able to do, I can’t fix memory. No one can. Bones regrow, cuts heal, but memory – once lost – is usually gone for good. It’s one of God’s cruellest tricks, if, indeed, you believe in God – an inexplicable evolutionary flaw. We are essentially born with all the neurons we will ever possess. Unlike other cells in the body, those in the brain do not replicate or reproduce. Drown them in drink; sever them in concussions or car accidents; use them up one by one in the everyday bumps and blows that flesh is heir to… Bad luck! They’re not coming back.
The main cause of memory loss – the spectre that hangs over every single one of my appointments – is, of course, dementia. Some clients ask me outright: ‘Do you think I’ve got it? That Alzheimer thing?’ Others mention a mother, uncle or grandparent with the condition, then trail off, leaving me to join the dots. A smaller proportion protest and bluster: ‘I’m seventy-eight years old! Of course I’m forgetful. Let’s see how you’re going by my age!’ But they’re worried too. I can see it in their eyes, in the way they watch me as I make notes in their file. Everybody who comes to our service is there because someone else is concerned about their memory: a spouse, a child, maybe their GP. Sometimes it’s the person themselves who seeks the appointment, though that’s rarer. No one over a certain age wants to draw attention to the fact that they may be deteriorating in any way. Losing their grip. As a neuropsychologist, my job is to put my patients through a series of tests to assess their cognition: their memory, certainly (both acquisition and recall), but also their language, visuospatial function, attention and so on. If I uncover any deficits, my next task is to work out what’s causing them. Memory loss, particularly in the elderly, can arise from a number of conditions: little bleeds within the brain, stress or anxiety, too much alcohol, too little B12. Some medications can cause forgetfulness and confusion; so can fatigue, depression, hypothyroidism or even minor head injuries. Dementia is the big one though, the bogeyman lurking under the bed. Dementia is why I’m booked up for months in advance.
‘DEMENTIA’ IS AN umbrella term for any condition that causes progressive – usually irreversible – cognitive decline. There are more than one hundred categories of the illness, the most common of which is Alzheimer’s disease, accounting for 60 to 70 per cent of cases. Other relatively frequently occurring dementias include vascular dementia, arising from numerous mini-strokes or small bleeds in the brain; frontotemporal dementia, where neuron death in the anterior portions of the brain results in marked personality and behavioural change, though memory is often left intact; and Lewy body dementia, where individuals experience vivid hallucinations, plus changes in their gait and sleep. Roughly a third of people with dementia have more than one type, which can complicate diagnosis and becomes more common with advanced age. Alzheimer’s disease, along with many other forms of dementia, is known to arise from a build-up of toxic proteins in the brain. These accumulations gradually hinder, and then stop, neurons from communicating with one another, leading them to wither and die, and the brain to shrink. This process of toxic accretion is thought to commence years, if not decades, before the afflicted individual shows any signs of cognitive deterioration. However, it is still not known what sparks it.
I BECAME A neuropsychologist entirely by accident. My original aim was to become a doctor, though looking back that was more my parents’ dream than my own. I’d always wanted to be a writer, a journalist; they considered that a waste of the good Year 12 score I was likely to get, particularly when I could be doing something far more lucrative. I duly attained the requisite marks and enrolled in medical school, but realised on day one that I was out of my depth. It only took me another three days to quit, hot-footing it across campus to throw myself on the mercy of the arts faculty instead, where the bemused dean told me that – of course – I could swap, and suggested that I choose psychology as one of my subjects. It would be useful knowledge for a writer, he said, and it also accrued study credits should I ever change my mind and return to medicine. That seemed like sound advice to me, and I signed up on the spot. Within six months I had fallen in love with the subject, particularly neuropsychology – the study of the changes and deficits arising after neurological damage. No doubt, it helped that my first prescribed text in this field was the late Oliver Sacks’ masterpiece, The Man Who Mistook His Wife For a Hat (Summit Books, 1985). While I never, during my training, witnessed a patient who attempted to lift his wife’s head onto his own in the manner of Sacks’ titular agnosic, I did see plenty of other interesting stuff: a woman with Capgras syndrome, who was perfectly well other than the fixed delusion that her husband had been replaced by an actor; an elderly man who had developed alien hand syndrome after a stroke, and so constantly tried to shake it off his forearm; plus numerous patients with hemispatial neglect, where one whole side of space is ignored – is invisible! – though vision itself remains intact. I abandoned the idea of journalism and became a neuropsychologist instead. Here, too, there was a new story every day.
That was almost thirty years ago. For most of those years I have specialised in the diagnosis of dementia, working in both metropolitan and rural health services in my home state of Victoria. I also helped establish the first ever memory clinic in Scotland. Dementia, in all its many manifestations, is, to me, an enduring fascination. In the past twelve months alone I have seen a used-car salesman with posterior cortical atrophy, a rare dementia affecting visuospatial function, whose first symptom was a sudden inability to park cars side by side after forty years of doing just that at his showroom; a ninety-five-year-old woman with newly recognised LATE dementia, where the ability to form new memories is obliterated, but all other cognition remains intact; and a man with Lewy body dementia, which can be associated with extremely vivid dreams, who would arise from his bed in the middle of the night to practise his golf swing. Even regular Alzheimer’s is intriguing: the patients who seem so well-preserved in general conversation, telling me all about their grandchildren or bowls club, but then repeat themselves word for word five minutes later with absolutely no awareness that they are doing so. It’s a tough field though, and a heart-rending one. These clinical vignettes, though fascinating, represent real people and real lives. It’s often my role to give the diagnosis of a dementia to patients and their families – and doing so can still make me tear up. That doesn’t seem particularly professional or comforting, however, so now I clasp a drawing pin in my hand while breaking the news. If tears threaten, I squeeze my fist. The pain is a circuit-breaker; it somehow redirects me to focus on my job rather than the sadness of it all. After all, I only have to live with that diagnosis for the duration of the appointment. For those I deliver it to, it’s a life sentence.
THE WORLD HEALTH Organization estimates that there are currently around fifty million people living with dementia. In Australia, just under 460,000 have a formal diagnosis of the condition, though this figure is expected to top one million in around thirty years. Women (56 per cent of cases) slightly outnumber men, while Indigenous Australians are up to five times as likely to develop dementia than non-Indigenous people. The greatest risk factor for developing dementia, however, is simply growing older. At sixty-five years of age, only around one in ten people have dementia, whereas by eighty-five a third of the population do. Lifestyle changes may offer some protection. Studies reliably indicate that a number of reversible or modifiable factors contribute to the likelihood of an individual developing dementia, including poor cardiovascular health, overuse of alcohol and nicotine, physical inactivity, social isolation and even hearing impairment. Management of these may therefore lower the risk of developing a dementia but, as respected journal Annals of Internal Medicine recently conceded, there is no magic bullet. Exercise, medication, dietary supplements – even cognitive training – may each delay the onset of the illness, but none has been shown to prevent it altogether.
‘DEMENTIA,’ SAYS MAREE McCabe, chief executive officer of Dementia Australia, ‘is the chronic condition of the twenty-first century.’ And the rate of diagnosis is on the rise. Every day, around 250 Australians are told they have the illness. This is predicted to increase to 318 people per day by 2025, and over 650 thirty years after that. Nearly ten million new cases are diagnosed globally each year. I first heard this phenomenon described as ‘the grey tsunami’ while a student, when we were warned of how the ageing Baby Boomers would swamp an unprepared and underfunded healthcare system. Those Boomers are now largely in their early sixties to mid-seventies, prime dementia-diagnosis territory, but they can’t be held solely responsible for the uptick in dementia cases. Medical advances are also to blame. With heart disease and, to some extent, cancers now better understood and controlled, more people are living long enough to develop dementia. Then, too, the condition is far more recognised than it was in the past, when ageing was often conflated with senility. The diagnoses of Ronald Reagan, Rita Hayworth and Charles Bronson with Alzheimer’s in the 1980s and 1990s first increased public awareness of the disease, while closer to home, Hazel Hawke’s appearance in 2003 on the ABC television show Australian Story to reveal that she too had the condition had a similar impact. I was working in a metropolitan memory clinic at the time. Overnight, our enquiries and referrals jumped from one or two a day to twenty. Things never quite returned to what they once were. As the percentage of the population concerned about dementia has grown, so too have the services available – and the waiting lists to access them. When I first began my training in 1990 there were only two or three CDAMS in Victoria. Now there are twenty-two, each attached to a public hospital and funded by the state government to provide diagnosis, treatment and assistance to those in the early stages of dementia, or with other forms of memory loss. Of course, we’re not the only option, and individuals worried about their cognition can also be assessed privately by a neurologist or geriatrician. But many can’t afford this, which makes us a popular alternative. Almost too popular, in fact: I am booked up for six months in advance at the rural CDAMS where I currently work. When you are worried about losing your mind, six months is an awfully long time to wait. Country people are patient, though – patient and stoic. Sometimes I envisage them queueing to see me outside the hospital, stretching across canola fields, along the meandering banks of the river, gently shuffling forward as the line slowly moves up through the orchards and the paddocks of our region. I love working with this population, but the need and the numbers frighten me. When I first qualified there was a trickle of them. Now there is a flood, a torrent. A tsunami.
THERE IS CURRENTLY no cure for any form of dementia.
I’ll say that again: There is currently no cure for any form of dementia. Ten million new cases a year, and no cure. Fifty million people living with a disease that will stop them working, stop them functioning, that will require at least another fifty million people – but probably double that – to care for them. It was 1996 and I was in the final year of my PhD, an investigation into the early detection of Alzheimer’s disease, when the first medication approved for treating the condition came onto the market. Donepezil, sold under the trade name Aricept, among others, increases levels of acetylcholine in the brain, a neurotransmitter believed to be important in short-term memory and learning. Expectations for the drug were modest. Studies had found that it was effective in just over half the population diagnosed with Alzheimer’s disease, and then offered only small benefits in mental and/or daily functioning. The symptoms of patients who responded to donepezil were in no way cured or reversed, but progression was either slowed or plateaued for a time, often no more than a year. Nonetheless, this was seen as a breakthrough. Any deceleration of the illness bought time for the patient and their family, maybe extra months spent at home rather than in residential care, more opportunities for doing the things they loved before the sand ran through the hourglass. Besides, I recall my supervisor telling me: this was just the beginning. All new pharmacotherapies had to start somewhere, would inevitably be built on, refined, improved. Within years, he was sure, a variety of superior, more sophisticated anti-dementia drugs would be available. I remember thinking how perfectly it all dovetailed: the new cognitive tests I was investigating would identify Alzheimer’s disease almost as soon as it had started, and there would be a shiny new medication ready to go with which to start treatment immediately.
Ah, the fantasies of youth. We now know that the neuropathological changes associated with Alzheimer’s disease begin years, probably decades, before symptoms become apparent. Therefore, to have any hope of working, anti-Alzheimer treatments need to be administered then, when the individual is still in their fifties or sixties, but at this time there is no widely available means of detecting who these people even are. More to the point, there are no new drugs. Since Aricept was released almost a quarter of a century ago, only one new medication, memantine, has been approved for use in treating Alzheimer’s disease, and is thought to be even less effective than donepezil. This is not for lack of trying. Spending on dementia research has skyrocketed in the same period, and any number of new compounds have been developed. Many have appeared promising, even miraculous, in their ability to treat dementia in animals, but have fallen over in human trials, often at the final, or phase III, stages. Associate Professor Michael Woodward, until recently Chair of the Australasian Consortium of Centres for Clinical Cognitive Research, has been involved in around 200 dementia drug trials in twenty-five years. Some of these have cost up to half a billion dollars, and only one has had a positive result. There are a number of reasons for this, he says: maybe the drugs are not being given early enough, or in an optimum way. Maybe the trials are not looking at the best endpoints, or are being contaminated by misdiagnoses in the sample population. Perhaps most importantly, the brain, he says, ‘is a hard nut to crack’. Science does not yet fully understand how it works, or why the changes in its biochemistry that eventually lead to Alzheimer’s are even triggered in the first place. Breakthroughs, therefore, will necessarily take time.
SINCE 2016, DEMENTIA has been the leading cause of death for Australian women, overtaking heart disease, which was the major killer for more than a century. It is the second leading cause of death for all Australians, male and female. Dementia is also the single greatest cause of disability in older Australians, those aged sixty-five years and above. Generally, it is only slowly progressive, which may be both a blessing and a curse. The rate of deterioration varies from person to person depending on their age and physical health, but on average life expectancy after a diagnosis of Alzheimer’s disease is around ten years. Some forms of dementia move more quickly (average life expectancy after a diagnosis of Lewy body or frontotemporal dementia is four to eight years), but it is also possible for individuals to live more than twenty years with the condition. On top of this, diagnosis itself is thought to take around three years after the earliest symptoms appear. Dementia is an insidious and stealthy illness, and there is no one clinical measure – no blood test, no brain scan – that definitively unmasks it.
My mother-in-law, Mavis, was eighty-one when she was diagnosed with Alzheimer’s disease. For all my years of experience, it was my husband who picked it up. ‘Mum’s losing it,’ he said to me one evening as we were driving home after dinner with his parents. ‘She told me the same story twice in an hour. She forgot [our son] Declan’s name.’ I’d been busy with our other child and hadn’t noticed. ‘She’s probably just getting old,’ I replied. Mavis led an active life and had lots of friends – it was no surprise that she couldn’t remember who she’d told what. Besides, in the twenty or so years I’d known her we’d always laughed about how she called my husband Peter-Gregory-Craig, working through her two older sons until she got to him. She was just repeating the pattern with her first grandchild.
‘No, it’s more than that,’ Craig said, shaking his head. ‘Something’s not right.’
Over the next year I realised he was correct. Mavis asked the same questions over and over whenever I saw her, but forgot the answers almost immediately. Always a superb cook, her famous sponge cakes stopped rising; her roasts smouldered in the oven. Her car acquired dents she couldn’t explain; she had won walls of rosettes and certificates at the Royal Melbourne Show, but ceased attending her beloved craft group because she could no longer remember how to knit. The crunch came when her best friend, Valda, took me aside at a birthday tea. Mavis was a modest and demure woman, someone who had blushed so violently the first time I breastfed in front of her that I had felt obliged to move to another room. Valda had taken her out for lunch, she told me, but within minutes of arriving Mavis had wet herself, then lifted her dress to show what she had done, took off her undies and gaily tossed them onto the table.
Next came the wandering, mostly in the evenings, when Mavis would fail to recognise her surroundings and start looking for her ‘home’ – the house she grew up in and had moved out of aged twenty-two. Neuroanatomically, the regions of our brain that deal with memory are the paleocortex, literally the old layer. These are deep and ancient structures, present in our ancestors for millennia before being buried under the more recently evolved neocortex, the grey matter that gives our brain the shape we recognise today. I always find it ironic that patients in the early stages of dementia invariably retain their oldest memories; that the events of sixty years ago – first jobs, first dances, first days at school – become increasingly more real to them than the dinner they attended yesterday. Before it is erased, the story is abridged, condensed. Chapter after chapter is lost along what we call a temporal gradient, as if someone is systematically ripping out pages starting from the back of the book. Mavis had lived with her husband in their current house for almost fifty years, but it was now unfamiliar to her. ‘Take me home to Bennett Street,’ she pleaded with her husband, Stan, giving her childhood address when he found her searching for it barefoot and in her nightie in the street one winter’s evening. Sadly, it was time to look for a new sort of home.
Mavis had always declared she would rather die than go into a nursing home, but with Stan unable to manage her care and increasingly erratic behaviour there was no other option. On the day of the move she smiled with delight when we buckled her into the car – she still loved outings – and remarked on how ‘lovely’ everything was when we entered the property, a converted stately mansion in a nearby suburb. After an hour though she turned to me and pronounced ‘I’m ready to go home now.’ My husband and father-in-law began crying as I explained that this was now her home. ‘Oh,’ she said, a comprehension we had thought gone for good slowly dawning, ‘Oh, I don’t like that at all.’ She lay down on her bed and closed her eyes, refusing to look at us. ‘You go,’ a kindly nurse told us. ‘We’ve got it from here.’
I called the nurse later that evening to see how Mavis was getting on. ‘Not bad,’ she said. ‘She’s frightened and keeps asking for Stan, but that’s normal. It usually settles.’ My ten-year-old daughter overheard the conversation. ‘Poor Nanna,’ she said. ‘I hope she forgets Poppa soon. That would be better.’ I hoped so too. I hoped it all night, as I made dinner and supervised homework and as I climbed into bed beside Craig. At the nursing home, Mavis was sleeping alone for the first time in almost sixty years.
MEMORY IS NOT the only thing lost when dementia begins. In the early years of the condition, most people living with dementia can continue many of their usual activities –socialising, playing sport, cooking and shopping, even driving, subject to a driving assessment following diagnosis. As cognition deteriorates and the illness progresses, however, personal agency and independence are gradually whittled away. Patients with mid-stage dementia begin requiring assistance with everyday activities such as dressing, toileting and feeding themselves. They are often unable to engage in meaningful conversation or to articulately express their needs and wants, and may be restricted to a care facility. Along with these functional changes comes perhaps the greatest loss, that of identity. In his biography of his late wife, the ferociously intelligent British novelist Dame Iris Murdoch, who died of Alzheimer’s disease, John Bayley recounts that in her later years she could no longer read, never mind write, and spent her days avidly watching the children’s show Teletubbies instead. First we lose our car keys; eventually we lose ourselves.
Then there is the stigma. Dementia is far more widely recognised and understood by the general public than in the past, but it is still (perhaps unsurprisingly) something to be feared and shunned. To describe yourself as ‘demented’ is an expression of despair; to use it of someone else is vilification or ridicule. People with cancer are described as battlers, warriors, fighting the disease, clad in the armour of pink ribbons and yellow daffodils; people with dementia, by contrast, are largely invisible, are termed sufferers or victims. They are more likely than the general elderly population to become unwell, suffer injury or be hospitalised. Once there they experience double the rate of complications such as falls or infections. Perhaps more concerningly, those with dementia are at significantly higher risk of abuse in all its forms: physical, emotional, sexual, financial, even pharmacological (for example, being dosed with sedatives to manage behavioural changes). Though some would perhaps wish it, euthanasia is not an option for those with dementia, as legally this decision can only be made by someone who is mentally competent.
MAVIS DID EVENTUALLY adjust to the nursing home. I can’t say that she was ever actually happy there, but after the first month she stopped asking to go home, she no longer resisted being dressed or washed, and her initial agitation gave way to something that was either resignation or near total amnesia. I honestly don’t know how much she understood of what had happened, was happening, to her. Her colour faded, the light in her previously sparkling blue eyes dimmed, went out. When Mavis first moved to the home she would join in with group activities, games and singalongs mainly, but after a year she spent her time mainly sitting staring into space, cradling a plastic doll – which the nurses referred to as her baby – in her arms. Around this point she forgot who I was, then soon after that my husband, her youngest child and real-life baby. Interestingly, though, she seemed to remember our daughter for much longer. Mavis had had three sons and had often divulged to me how she’d yearned for a girl. She had four grandsons too, and loved them all to pieces, but the morning I told her over the phone, fresh from the delivery suite, that she finally had a granddaughter, this usually most reserved woman broke into sobs so violent she couldn’t speak.
Mavis lingered this way for almost another year, barely speaking, barely functioning, confused and disoriented on her good days, visibly frightened and upset on the bad. She drooled and shat herself, she spilled food down her front and could barely walk, only shuffle. She would have hated it. She would have asked for death if she could. Stan stopped visiting. We all did, to be honest. It was too upsetting and there was simply no point. Five years into her dementia, she had no idea who we were, couldn’t engage with us, couldn’t even focus on our faces. In her last week she fell silent altogether, stopped swallowing, could no longer manage food. The home called and told us she was dying. Craig and I went in to see her. She was lying in bed, eyes closed, had been unresponsive, we were informed, for almost twenty-four hours. My husband took her hand and thanked her, through tears, for being such a great mother. She opened her eyes, looked straight at him, said ‘Craig’ and smiled. It was the first time she had recognised him – and I have no doubt that she did – in almost two years. It was practically the first time she had called him solely by his name, not prefaced it with that of his two brothers. It was the last time she spoke. For a moment she was back with us, Mavis again, and then she was gone.
IN 2020, DEMENTIA is estimated to cost Australia around sixteen billion dollars. This figure is a combination of both direct costs, such as medical consultations and aged-care placement, and indirect costs, including lost income and productivity. A further hidden cost is the time and labour provided by the hundreds of thousands of carers needed to assist people living with dementia, almost half of whom act in an unpaid capacity, usually as spouses, children or friends. A 2015 US study found that the average cost of dementia care over a five-year period (US$287,038) is more than one-and-a-half times that of other leading causes of death, such as heart disease and cancer (around US$175,00 each). Over the next forty years, Dementia Australia projects that the condition will have cost the nation a staggering $1.03 trillion dollars.
Many of the facts and statistics presented above are demoralising, depressing, overwhelming. I find it hard to even grasp the enormity of a trillion, never mind imagine where that money comes from, or the innumerable other ways it might be utilised if dementia could be better controlled. The rising tide of dementia is of concern, not just in Australia but globally. As the Alzheimer Society of Canada recently urged: ‘Maintaining the status quo is not an option. We must take action today.’ Maree McCabe, CEO of Dementia Australia, agrees. She believes that dementia is an invisible disability to much of society, and one of Dementia Australia’s main goals is thus to raise awareness and understanding of the condition. Another major strategic priority is quality care for people living with dementia. ‘Around 50 per cent of people in residential care have a dementia diagnosis,’ McCabe says. ‘More still are either undiagnosed or will develop the condition during their time in care, but most aged-care staff don’t have specific dementia-care training to support them in caring for people living with dementia.’ The ongoing Royal Commission into Aged Care Quality and Safety has already heard a great deal of evidence regarding the substandard, at times dangerous, conditions found in some nursing homes and care facilities. To mitigate this, Dementia Australia would like to see mandatory training of aged-care staff in dementia-friendly practice, a reduction in the inappropriate physical and chemical restraint of residents with dementia, and the implementation and regulation of quality dementia-care standards. Accelerated investment in all facets of dementia research is also vital. A report conducted by the National Centre for Social and Economic Modelling found that prevention programs that reduce the number of Australians developing dementia each year through interventions such as improved diet, physical activity and medical care could save the economy over $120 billion by 2056. Research is also necessary for understanding the causes and pathology of the various dementias in order to identify the best treatment strategies. The holy grail, of course, remains a medication to either halt or even reverse the condition. Although this has proved elusive to date, Associate Professor Michael Woodward remains convinced that it will be found. ‘I’m very optimistic of having a dementia-modifying drug within the next five–ten years,’ he says. ‘It can take decades for research to start producing useful drugs. Cancer treatments that we rely on today took ages to develop. We’re about forty years into finding effective pharmacological therapies for dementia, so there’s still a way to go. But it will happen.’
I hope he’s right. That line outside my office is getting longer and longer.
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