The many meanings of ‘dementia’

'Dementia' has a vice-like grip on the consciousness of older people in this country and almost certainly in others, such as the United States. This narrative certainly arises from activities within mental health systems, but its cultural centrality also relates to fears concerning death and dying in British society. I will discuss each in turn, in the context of various meanings of 'dementia' and how they create helplessness and a powerful fear among older adults. 

This article derives from my research while preparing A New Understanding of Dementia, which I believe is the first self-help guide specifically addressed to older people worried they may be developing dementia.

The contemporary narrative

The creation of such a fearful narrative is perhaps unique to 'dementia'; but the process by which it developed is, I argue, common to all the major diagnoses. It stems from the conceptual revolution generated by the third edition of the Diagnostic and Statistical Manual III, published by the American Psychiatric Association (the APA) in 1980.

Two events were of importance in leading up to DSM-III. Firstly, until the 1960s, the dominant psychiatric understanding and treatment was psychoanalytic, with Adolf Meyer as its leading proponent. However, the staff at the Psychiatric Faculty at the Washington University, St. Louis, Missouri, were antagonistic to the psychoanalytic model. Psychoanalytic theory had little use for diagnostic categories, since each patient's neurosis arose from their early childhood experiences, and hence were unique to that individual. In contrast, the St. Louis department favoured diagnostic criteria for the major categories of mental illness (Mayer & Horowitz, 2005). The key publication was 'Diagnostic Criteria for Use in Psychiatric Research' by members of the department (John P. Feigner et al., 1972), which established criteria for 15 major diagnosis; and this approach was taken further by other department members, namely Robert Woodruff, Donald Goodwin and Samuel Guze, with their Psychiatric Diagnosis, published in 1974. It is worth noting that what they were hoping to achieve was not uniformity in treatment, but uniformity in diagnostic criteria, allowing different research groups to study the same phenomena.

Secondly, this approach was congruent with that of the man tasked with re-writing DSM-II, a publication of a mere 134 pages (DSM-III required 494). Robert Spitzer (1932-2015) was a psychiatrist working at Columbia University, Manhattan. 'Although Spitzer had received psychoanalytic training … he had a deep loathing for it and was keen on abolishing its influence in American psychiatry' (Edward Shorter, in Spitzer's obituary).

Spitzer was no novice to APA politics. He had been a consultant to DSM-II, which had been published in 1968. He is widely acknowledged as a major player in removing 'homosexuality' as a mental disorder from the seventh printing of DSM-II in 1973. ('Sexual Orientation Disturbance' was substituted.) The APA may have thought they were asking him 'to adjust the semi-colons', but Spitzer was clear that psychoanalysis had to be removed as an organising structure (most notably by the rejection of the concept of 'neurosis' and related explanations.) Of the 19 members of the APA task force, Spitzer appointed five who had trained or taught at Washington.

DSM-III, published in 1980, gave criteria for each named illness or disease. This list was generated by specialists in a given field coming together to list their ideas as to the relevant indications of the disease, and Spitzer then generating a commonly agreed list. There were a variety of serious flaws in this approach. It assumed that the presentation of the various conditions was a constant across time and cultures. But this is false. Think of the Victorian emphasis on 'hysteria', now rarely used as a clinical diagnosis; the amazing 'waxy catatonia', where the person maintained remarkable body positions; the many 'Napoleons' and 'Jesus Christ' delusions. Secondly, what was missing was any evidence that there was any known basis for the relevant disease or illness, be it 'depression' or 'dementia', and evidence for the validity of the symptoms. Finally, since there was no interest in the aetiology or cause of the condition, false positives, such as confusing grieving with depression, were inevitable, as was also the case with 'dementia', which I outline below.

The creation of the 'dementia' narrative

There was little interest in dementia and 'Alzheimer's' until after the Second World War. As with the rest of psychiatry, the explanations were psychodynamic, the leading exponent in the field being David Rothschild, who spent his entire career in the Massachusetts state hospital system. Autopsy results already demonstrated that people showing no signs of dementia had the same pathological brain structures as those so diagnosed (a finding replicated many times since, most notably in David Snowdon's Aging with Grace, a study of nuns, where he showed that the brains of high functioning sisters, on autopsy, were found to have large numbers of plaques and fibrils.) Rothschild argued that, therefore, the presentation had to be an interaction between the person's coping strategies, life crises and brain damage (Ballinger, Self, Senility and Alzheimer's Disease in America, 47-49). 

Interest in organic explanations in the years before DSM-III was published was rekindled due to a number of factors. 

Examination of brain tissue – histology – made a huge leap forward with the development of the electron microscope, which operated at far higher magnification than the light microscope. It opened up developments in the field of dementia – most notably by the American neuropathologist, Robert Terry – as the plaques and fibrils could now be studied in far more detail.

Another key figure was Robert Katzman, a gerontologist, who had worked with Terry, and in 1976 wrote an influential editorial in the journal, the Archives of Neurology. He argued that the much rarer pre-senile dementia or 'Alzheimer's disease' – Frau D. was only 51 when Dr Alzheimer examined her – and the much more common senile dementia were the same disease and they should be lumped together and called 'Alzheimer's'.

This change of name was factually incorrect. 'Young onset' dementia is a much more virulent illness than the cognitive decline of old age, and certainly in more recent times, it is usually thought to be the result of different processes, such as prions; and has been shown to have a much greater genetic loading than dementia in old age.

However, what this did do did was to hugely expand the number of cases of 'Alzheimer's'. This disease was given added respectability of having been 'discovered', like Huntington's Chorea, Parkinson's and Pick's Disease, by a medical pioneer.

The aim was to increase the funding available for research into dementia; and this campaign was very successful. Congress created the National Institute on Aging, and in 1975, Robert Butler became the founding director, where he remained until 1982. When conceptualising old age, Robert Butler was a major figure, introducing the concept of the Life Review (1963) and Ageism (1969), but he saw 'dementia' purely as an organic disease.

At the National Institute on Aging, he established Alzheimer's Disease as a national research priority^, He argued that just as polio had been eradicated by Salk's vaccine, so increased funding would achieve the same result for Alzheimer's.

This approach, which greatly increased the funding for research into dementia, especially Alzheimer's, implied that, firstly, Alzheimer's was a single disease, not an overarching term for a number of different conditions causing cognitive difficulties, and that it was an organic brain condition. This meant it was in line for the thinking of DSM-III.

The checklists in DSM-III quickly came to define the various types of mental illness and to become essential for diagnostic purposes. In the case of Alzheimer's, it listed five domains and, if there was significant damage or deficit in any one area, the diagnosis was 'probable Alzheimer's Disease' and the person was able to claim medical insurance.

Diagnostic inflation – diagnosing many false positives – was inevitable with such loose criteria. It meant that many people were and are diagnosed with 'dementia' when their difficulties are better explained by alternative causations. In the case of Alzheimer's, there could be multiple reasons for a poorer showing in a single cognitive domain.

The expanded number was also due to demographic changes. In the UK, in 1930, the average life expectancy was 59 for men and 63 for women. By 1960, the equivalent figures were 68 and 74. Clearly, there was a large and expanding market for drugs that could be targeted at the elderly and their fears.

This potentially huge market led, from about 1980, to a race between drug companies to develop medications that might not cure, but at least control the course of dementia. Such a medicine would be a 'blockbuster' – drugs that gross at least a billion dollars a year. 

Drug companies spend a huge amount of money on advertising ahead of the launch of a potential drug, so that there is already a demand for it as soon as it is released. Their task was to make Americans aware of this new scourge of old age; and when the magic pill was developed, as was bound to happen, millions of Americans would be pressuring their family doctors for access to it. Advertising for a drug has to create a story around which the taking of the pill becomes logical. What was the narrative that was created around this time about 'dementia'?

Firstly, most, old people had, or would get, this serious condition. There was no escape. The longer you lived, the greater your chances, and as things stand, you would end up being so incompetent you would require nursing care, probably in a home. But the cavalry was arriving. With so many major pharmaceutical companies working on such a drug, its arrival was inevitable and imminent. 

A feature of any narrative is that it foregrounds certain aspects – in this case, the high frequency and seriousness of 'dementia' and backgrounds other aspects that conflict with the favoured narratives. So, given the apparently inevitable deterioration, it tied the medical profession to (the hope of) a drug cure; and it downgraded the utility of psychosocial interventions, except in nursing homes to give them some evidence of activity and purpose. Overall, psychological methods were to be seen as inevitably ineffective and a waste of time and money.

These, then, are the major features of contemporary narrative, to be found as assumed or explained in most media reporting about dementia.

Expensive failures

Having created the hype, there was only one fly in the ointment. No drug has been developed that successfully reverses dementia. Nor could it, because 'Alzheimer's' was being defined as a single condition, with a single process causing it. Both assumptions were faulty. 

The amyloid cascade hypothesis, proposed by John Hardy, has not been shown to be valid. (The role of serotonin, much trumpeted as the cause of depression, has suffered the same lack of research support).

The anticholinergic drug, Donezepil (Aricept), launched in 1997, has been shown to give some sufferers two years of cognitive stability at best. The NHS advice is even more cautious, stating that the benefits last a year.

By 2023, of 244 Alzheimer's drugs tested in 413 clinical trials, only one was approved, and that was minimally effective; which gives a failure rate of 99.6 per cent and a spend of over two billion dollars. Joseph Jebelli. In Pursuit of Memory, 209, quotes one pharmaceutical chemist who concluded that Alzheimer's drugs are 'almost perfectly set up for expensive failures'. 

Sadly, charities – whose stated aim is the welfare of people with dementia – contribute to the negative narrative with advertising that focusses on disease and loss. They believed and believe that the best way to raise money was to run adverts demonising 'dementia' and showing people on the underground in pyjamas or disappearing. 

The British government, in the decade beginning around 2000, also believed that an effective drug was close and would offer a near-cure for Alzheimer's. It became worried about the hordes of old people who would want to be prescribed these magic cures. So it set up Memory Clinics all over the country. The idea was that if, and only if, you were diagnosed as having 'Alzheimer's', could you gain access to these wonder drugs. But although the drug companies have been at work on such drugs since the 1980s, we are still waiting, and a drug cure is still being promoted. Yet in 2018, the pharmaceutical giant Pfizer folded its research and development operation for Alzheimer's and Parkinson's. 'The clinical pipelines of the other nine largest pharmaceutical companies are also drying up' (George and Whitehouse, American Dementia, 71).

Horizontal expansion

What is remarkable is that, across some 30-odd years, this narrative continues to be hugely influential despite the lack of any effective drug. It is like a dog with a wagging tail but no body.

There is also an ever-widening horizontal expansion of the meaning of 'dementia'. Almost any disability of older people now is referred to as evidence of dementia. So, for example, the idea that older people can suffer from major mental illnesses, 'psychoses', is rarely heard. Such conditions are subsumed as evidence of 'dementia'.

A dramatic example is provided by Dasha Kipur, in her sensitive account of helping relatives who are caring for people with dementia, Travellers to Unimaginable Lands. She tells of a lady in her eighties, very well read, who starts talking to her books. Henry, her husband, tells Kipur, 'She'll talk to them with the tenderness that's missing when she talks to me.' Kipur comments 'One morning Henry awoke to find Ida chattering to Thomas Mann. How was he supposed to compete with the author of Buddenbrooks?' One night, she invited Stefan Zweig to dinner. 'She had addressed all her remarks to the cover of The World of Yesterday except when she asked Henry to pass a roll to their guest.'

Now we can do a simple thought experiment. We can make Ida 40-years-old. At that point, the diagnosis may well be that Ida is suffering from psychotic delusions. But because Ida was 80 – 'dementia'.

'Dementia' in fiction

I find it disheartening to see novelists who only know the stereotypes of the contemporary narrative, and use these assumed features of 'dementia' to describe 'demented' characters. In such accounts, descent is rapid. Violent outbursts are common. Almost all depictions – fictional and non-fictional – deal with end-state conditions. Gibbs puts it well: '… the conversation about Alzheimer's has long been stuck in fast forward to the late stage, end-stage loss'.

Misplacing your car keys or forgetting someone's name do not make for dramatic reading. What is needed is a good, clear, strong story of tragic decline; and such stories, of course, incrementally increase the fear of 'dementia' and its terrible effects. 

The most obvious example is Still Alice by Lisa Genovese. I have written about the assumptions accepted in this novel in The Psychologist, February 2015. It depicts the deterioration from Harvard professor to difficulty in simple tasks within two years; it suggests that men must prioritise their careers, even if it means near total neglect of their female relatives; and it assumes that there is nothing anyone can do to help Alice. At no point is she offered counselling or even frequent supportive sessions by her physicians. 

These hopeless endings contrast with stories about other mental health conditions, where there is often a knight-in-shining armour, the kindly, encouraging therapist; at the end of the film the main character, now recovered, moves out to a new and exciting life. Just one example is I Never Promised You a Rose Garden by Hannah Green (Susan Greenberg), published in 1964, and made into a film in 1974. It is semi-autobiographical account of her schizophrenic breakdown and her successful treatment by Freida Fromm-Reichmann. 

No such luck for a person with dementia. For example, in the best-selling The Last 'Devil' to Die, Richard Osman's account of Stephen's cognitive deterioration is sympathetic; but again, Stephen gets no professional help – one might argue that this is realistic given the state of the NHS – and the reader is therefore not surprised when, with his wife's support, he kills himself.

The most remarkable piece of evidence for the power of the contemporary narrative is Daniel Gibbs. A Tattoo on My Brain. Gibbs was a neurologist working in Portland, Oregon. He became convinced that because of his genetic inheritance, he was developing Alzheimer's. An assessment by a neurologist concluded he was suffering from 'subjective dementia', i.e. mistaken self-diagnosis. Undeterred, he enrolled himself in a clinical trial of Aducanumab. He had what he describes himself as 'a very serious response to it', and he needed intensive hospitalised care. He still advocated the use of the drug, for early-stages at least. What to anyone else would read like a cautionary tale is narrated as medical advance. The drug, incidentally, was pulled by the manufacturer earlier this year.

It is worth noting that fictional accounts should not be dismissed as 'light reading'. They strengthen the dominant narrative, to use Daniel Kahnemann's phrase, 'the illusion of validity'.

Unspoken meanings hiding our fears

Our understanding of 'dementia' does not occur in a vacuum, but makes sense only when we can see its place in our contemporary culture. Susan Sontag, in Illness as Metaphor, describes how an incurable disease absorbs the fears from death, and dying, as well as fears about the disease itself. In her introduction she writes, 'Illness is the night side of life. We all hold dual citizenship, in the kingdom of the well and in the kingdom of the sick.'

In the middle ages, leprosy probably fitted the bill as 'intractable and capricious … an evil, invincible predator … coming to stand for our deepest fears'. Think of the squint windows in old churches, so that lepers could view the service. Sontag shows how tuberculosis fulfilled that role for decades from Victorian times onwards (when it was called 'consumption', taking Keats, his brother, and Paul Dombey in Dickens' Dombey and Sonsetc.) until antibiotics, most notably Streptomycin, discovered in 1943, delivered a cure. It could then no longer be used as the disease name for our passport of fear. 

Instead, cancer – which through to the 1980's had very low rates of cure – was the lightning conductor for our fears. Then as Sontag noted in a later book, it was replaced by AIDS. In time, a cure was found for AIDS, and by that time, cancer treatment had improved its success rate and was less usable. So, aided by dire prophecies of an 'epidemic', 'dementia' became the central cultural metaphor for an incurable, terrifying disease.

In earlier times, religious faith offered an explanation and a continuing journey beyond life. Today, death has become in Susan Sontag's words, 'an offensively meaningless event', 'an obscene mystery', which, with the advances in medical science, should not still be happening. As Andrea Gillies puts it in Keeper, 'we live in an age-defying, mortality-denying culture'. But you can't push the knowledge that you will die away. Irvin Yalom, in Staring at the Sun, puts it well: 'Death however does itch. It itches all the time'; and the contemporary narrative continually equates 'dementia' and 'death' in such phrases as 'a social death', 'the death of the self' or 'of identity' etc.

Given society's unwillingness to consider death as normal and natural, many people prefer to talk about the fear of 'dementia', as a code for dying, because we expect modern medicine to come up with a cure for this disease. But there is no cure for death. The displacement of fears onto 'dementia' allows people to deny, to some extent at least, the reality and inevitability of death; but they thereby deny themselves the solace of considering themselves and their life as part of a life cycle.

Dying badly and slowly 

The fear and anxiety aroused by a self-diagnosis or professional diagnosis of 'dementia' will be made worse if it prompts, as it invariably does, the possibility of a long period of low-quality living before then. Anxiety will feed into this downward spiral.

If we want to be proactive, we need to consider how best we can compress morbidity – the period of poor health and a poor quality of life. The main route is to maximise cardiovascular health, yet this is not a major part of the contemporary narrative.

Instead, we get other metaphors in the contemporary narrative, such as the search for a cure as part of 'the war against dementia'. In a war, we, the foot soldiers, must leave it to the generals, who will work out the best strategy. In the contemporary narrative, 'the generals' are the drug companies and the research institutes whose continuation is often dependent on their continuing funding by drug companies. We, the public, are the infantry, not entitled to comment on the stories we are being told.  We must struggle on while we wait for a cure. There seems little prospect of this, and in the meantime we must stay in the trenches. 

People with physical handicaps formed a very powerful lobby, getting legislation that recognised their needs and their right to be active members of society not once but in a number of important pieces of legislation, such as the 1995 Disability Discrimination Act and the 2010 Equality Act. People with cognitive difficulties have had no such support. They have no legally enshrined rights that indicate an existence valued by and in society. They are supposed to be grateful when they see 'Dementia Friendly' in a shop window.

I wrote earlier of foregrounded and backgrounded aspects of the contemporary narrative. Research is absolutely clear as to the strong negative correlation between poverty and inequality and the frequency of dementia. (In A New Understanding of Dementia, I refer to this as 'the Poverty and Inequality cascade'). If we want to prevent people getting dementia, they need intellectual stimulation and education, to be part of groups that support their identity, to be able to afford nourishing food, and freedom from pollution. All these known risk factors could be tackled today… if the political will was there. 

The paradigm created by the proponents of DSM-III is broken. It has run out of cultural credibility, even if, for political and economic reasons, it is still maintained. The time for re-thinking and relating with more empathy, more engagement and the development of an armoury of psychological techniques has surely arrived.

• Dr Michael Bender, an honorary fellow at the University of Exeter, started his career as a clinical psychologist in the East End of London with all types of adult client groups. He was a pioneer of community psychology in the UK, for which he was elected a Fellow of the British Psychological Society.

  Appointed as a Consultant Clinical Psychologist, in the Southwest of England, he set up a psychology service for older adults, which gained a national reputation for its work with people who had cognitive difficulties. He and his assistants undertook innovative research into many aspects of 'dementia', described in many articles and in his book, Explorations in Dementia. He is also the author, with Rik Cheston, of Understanding Dementia: The Man with the Worried Eyes.

  Since retiring, he has maintained an active interest in the field. His A New Understanding of Dementia: A Guide is directly written for older people worried that they might be developing dementia. It is being published in May by AgeWise Press. 

References

Ballinger, Jesse (2006). Self, Senility and Alzheimer's Disease in America. Baltimore: John Hopkins UP

Bender, Michael (2024). A New Understanding of Dementia: A Guide. Kingsbridge, Devon: AgeWise

Butler, R.N. (1963) 'The Life Review: An Interpretation of Reminiscence in the Aged.' Psychiatry, 26, 65-73 

--- (1969). 'Age-ism. Another Form of Bigotry.' The Gerontologist, 9(4), 243-246

Clarke, Rachel (2020). Dear Life: A Doctor's Story of Love and Loss. London: Little Brown

Feigner. John P. et al. (1972). 'Diagnostic Criteria for Use in Psychiatric Research'. Archives of General Psychiatry, 26(1), 57-63

George, Daniel R. and Peter J. Whitehouse (2021).  American Dementia: Brain Health in an Unhealthy Society. Bltimore: John Hopkins UP

Gibbs, Daniel (2021). A Tattoo on My Brain. Cambridge, Cambridge UP

Jebelli, Joseph (2017). In Pursuit of Memory. London: John Murray

Kipur, Dasha (2023) Travellers to Unimaginable Lands. London: Profile   

Mayes, Rick and Allan V. Horwitz (2005). 'DSM-III and the Revolution in Classification of Mental Illness.' Journal of the History of Behavioral Sciences, 41(3), 249-267

Rokeach, Milton. The Three Christs of Ypsalanti. New York: Knopf, 1964

Shorter. Edward. 'Robert Spitzer Obituary'. The Guardian 3/1/2016

Snowdon, David(2001). Aging with Grace: What the Nun Study Teaches Us about Leading Longer, Healthier and More Meaningful Lives. New York: Bantam, 2001

Sontag, Susan (1983) Illness as Metaphor. London: Penguin

Woodruff, Robert, Donald Goodwin and Samuel Guze. Psychiatric Diagnosis. Oxford: Oxford UP, 1974