Can you live well with dementia and suffer at the same time?

First, read Kate Swaffer’s poem. “Who’s suffering?

When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.

Many readers suffer at this lack of clarity.

It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?

And are people really suffering as purported?

Are there any randomised placebo-controlled drug trials where the relief of “suffering” in #dementia is a reported outcome?

Kate Swaffer (@KateSwaffer)’s poem conversely is a very helpful contribution, based on a personal experience of living well with a dementia.

“Rhetoric referring to Alzheimer’s disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease.”

So comment Beard and colleagues.

“The fact that the words Alzheimer’s disease conjure up images of a hideous, debilitating condition demonstrates that an Alzheimer’s diagnosis can be both “a stigmatizing label and a sentence”. When depicted as a ‘living death’, Alzheimer’s can have countless social-psychological consequences for those diagnosed. Within a medical model, the relatives of persons with dementia are ascribed the role of ‘caregiver’ with a focus on the associated stressors or ‘burden’. Subsequently, health promotion efforts have historiiccally positioned family members as the ‘second’ or ‘hidden’ victims.”

Of course, this discussion is not confined to Alzheimer’s disease.

It is not uncommon for people who love people living with advanced dementia to have a miserable time, and suffer from that.

Alzheimer’s disease is the most common type of ‘dementia’, a disease of the brain. It’s not just about memory, although memory problems can be a common feature of Alzheimer’s disease early on in particular.

There is more to the person than the dementia. It’s possible to live well with a dementia. And dementia is not necessarily associated with ageing.

But some critics of ‘living well with dementia’ have attacked the concept saying it is trying to airbrush or sanitise suffering. I hope that this is not a widespread belief, as it is not true.

Across a number of jurisdictions, the word ‘sufferer’, like ‘victim’, is avoided in common parlance and academic papers when referring to people getting on with their own lives.

The term ‘live well with dementia’ is not indeed to enforce a degree of pleasantry on the lives of people. Contentment is not compulsory. But the term conveys a notion which is a pure and simple reaction to people being written off on the receipt of a diagnosis of dementia.

We owe much of the current drive in policy to ‘person centred care’ from the seminal work of the late great Prof Tom Kitwood on personhood. Persons living with dementia have been classified as “empty shells”, a label that may contribute to the development of paternalistic attitudes and behaviors toward care.

Kitwood suggested that people with dementia are often depersonalized and actively disempowered.

Research into the “self” in dementia is important for a number of reasons. It is important to understand how people with dementia experience their sense of self because this has implications for how people cope with the illness, how they relate to others, including friends, family, and health professionals, and what any types of intervention might be appropriate for them.

One person, interviewed by Wendy Hulko, described the experience as “hellish”.

But it turned out that this word was chosen partly out of word finding difficulties.

“Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions…”

Several of the participants dismissed the significance of having dementia, some focusing on the lack of impact it had on their lives. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it.

Despite extremely powerful national advocacy organisations founded over a quarter century ago in the United States and the United Kingdom, the voice of people with all forms of dementia has been surprisingly slow to emerge.

A recent exception to this has been the Dementia Alliance International.

The medical model has unintentionally forced a narrative in the media which does present people living with dementia in the positive light. Such ‘ringfencing’ of the person with dementia positions them as withdrawing from social life rather than considering how their social roles may have been withdrawn from them, which demotes them to ‘patient’ or ‘dementia sufferer’.

Such biomedical reductionism, arguably, can, therefore, create additional obstacles for diagnosed individuals and their families.

People with dementia, like all of us, undoubtedly have “rough spots” along an individualistic path of dementia, but the person is more important than the diagnosis as reflected in strategies for circumventing the rough spots.

There are typically personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations.

A number of devices can be used cognitive aids, made various modifications, garnered assistance from others’ engagement, akin to how people like me live with physical disability.

And often the language itself is intensely stigmatising.

Take for example this example by Dupuis and colleagues.

Such current language and discussion around “challenging behaviours” have the effect of blaming persons with dementia for behaviors and labeled persons as violent, aggressive, disruptive, challenging and so forth. This was hurtful and stigmatising and did not reflect the meanings of the actions of persons with dementia.

stigmatising language

Conversely, it is quite often – and incredibly politically incorrect to say so – a failure by the care or support network to understand communication by a person with dementia amidst intense frustration.

Sarah Lamb notes at the beginning of this year that the current North American “successful ageing” movement offers a particular normative model of how to age well, one tied to specific notions of individualist personhood emphasising independence, productivity, self-maintenance, and the individual self as project.

However, Lamb concludes that the “successful ageing” narrative “might do well to come to better terms with conditions of human transience and decline, so that not all situations of dependence, debility and even mortality in late life will be viewed and experienced as “failures” in living well.”

This thought is bound to raise eyebrows.


An emerging political approach suggest that individuals with dementia are viewed as having transgressed “core cultural values—productivity, autonomy, self-control, cleanliness—and these failures damage the ‘victim’s’ status as an adult, and indeed, full humanity” (Herskovits, 1995: 153).

In articulating a “political” model of dementia, Susan M. Behuniak suggests that one is inviting very different meanings:

“everything from absolute control over the individual to a total lack of public policy, from an emphasis on individual rights to that of social responsibility, and from laws that draw absolute lines to those that accommodate shades of grey.”

Although dementia is not traditionally viewed as a power question but as a medical condition, power in its most traditional of formulations can be seen when debates arise over who  should decide matters involving the individual with dementia.

This is, I feel, also an issue when we talk about a ‘carer’ or ‘support’ for a person with dementia. Whilst not as unsubtle as the word ‘sufferer’, there is an implicit power relationship there for me.

Chris Roberts [@mason4233], one of the @DementiaFriends, himself a card-carrying member of the ‘living well with dementia’ club has often remarked as follows:


So it is possible to suffer and live well with dementia.

But once you’ve met one person with dementia, you’ve met only one person with dementia.

But hold on.

Carly Findlay, like Chris and Kate, also puts it beautifully, this time writing from Melbourne about “ichthyosis“.

In her piece, “I get told I suffer… I don’t suffer.”

Ask others for their opinion if possible, or those closest to them.

It’s very important that no views are simply shouted down, particularly since it will be an important strand of the English dementia strategy  (probably from next year.)



Further reading

Herskovits, E. (1995). Struggling over subjectivity: Debates about the ‘self

Beware of ‘suffering’ for persons with dementia

David Cameron referred to the need for Britain to change its attitude to the “rising tide of people suffering with dementia” on May 26, 2012.

“Beware of Pity” is a 1939 novel by the Austrian writer Stefan Zweig. It was Zweig’s longest fiction book.

The young lieutenant Anton Hofmiller is invited to the castle of the Hungarian magnates of Lajos Kekesfalva. He meets his paralysed daughter Edith and develops subtle affection and deep compassion for her. Edith falls in love with him. They get engaged for fear of ridicule and contempt, he denies the engagement to the public.

A typical newspaper article on dementia these days tends to have a tripartite structure. Firstly, there’s the story itself. Secondly, there’s a brief description about the dementia, invariably Alzheimer’s disease. And finally there’s a mention of ‘If you’re worried, go and see your GP or your local Alzheimer’s Society.’

There are in fact about a hundred different types of dementia, not all of which present predominantly with significant memory problems. Some can present in a ‘hidden’ way, much like any disability. Some persons with dementia have marked changes in behaviour and personality (with normal cognition). Some may present with quite focal problems, with impairments of memory of concepts, known as “semantics”.

Quite often, the title of the newspaper piece will have the word “sufferer” in it. And yet this word has been more divisive than unifying. The word “sufferer” encourages one, perhaps, to “do something about it”, perhaps with a financial donation, in the hope of alleviating somebody’s suffering. ‘Healing’ of suffering might then take place.

A person with dementia, poorly hydrated in severe pain, most would agree, ‘suffers’, and it would be inhumane to deny this phenomenon. A problem clearly arises with a person living with dementia, who does not perceive himself or herself as suffering.

Wikipedia’s definition of ‘suffering’ is reasonably noncommittal:

“Suffering may be qualified as physical or mental. It may come in all degrees of intensity, from mild to intolerable. Factors of duration and frequency of occurrence usually compound that of intensity. Attitudes toward suffering may vary widely, in the sufferer or other people, according to how much it is regarded as avoidable or unavoidable, useful or useless, deserved or undeserved.”

The word ‘suffering’ also plays into the hands of an uneven power relationship between the carer and the recipient of care. It rests also easily with the medical model of dementia, where you diagnose an illness and implement some form of intervention.

On the hand, some people believe that avoiding the term ‘suffering’ is being needlessly politically correct.

But it depends where this advice is being given. The UK “Office for Disability Issues” suggests,

“Avoid phrases like ‘suffers from’ which evoke discomfort or pity and suggest constant pain and a sense of hopelessness.”

It’s been conceived that some form of suffering in old age has been largely perceived as “inevitable and natural, a fact of existence that was to be ameliorated but not eliminated” (George, Whitehouse and Ballenger, 2001).

The term “living well with dementia” was in fact the name of the English dementia policy, about to be renewed later this year by the current Government. Putting emphasis on wellbeing also encourages people to interact with charities, carers or doctors, in the hope that things might get better once a ‘timely diagnosis’ is achieved.

To shed some light on this, I decided to ask a person living with dementia whether he considered himself to be a ‘sufferer’.

“I’m not a ‘sufferer’, but I do suffer from dementia. I don’t know of anyone with a medical condition who doesn’t suffer?”

“Well I have a medical condition – alcoholism. If I don’t drink, I don’t suffer.” I thought my reply was clever.

“If you drink, you suffer.” Not clever enough obviously.

Changing the goalposts I asked, “Do you suffer though?”

“No, I suffer when I can’t remember things, or I feel I’m losing my independence. But I’m very positive, always have been. I’m a very practical person. But I think people who know me well suffer from watching me.”

This last sentence is actually quite a subtle point.

It is suggested that many patients with dementia may be unaware of some of their symptoms, a phenomenon known to cognitive neurologists as ‘anosognosia’.

So symptoms may be more evident to friends and family, rather than the person himself or herself. And, regardless of this, the perception of symptoms may be worse for onlookers than for persons living with dementia themselves.

“I don’t like the word ‘sufferer’ as it implies I should be the recipient of pity.”

“Does a person with cancer suffer if he has no pain or weight loss?” he asked. It was at this point I knew I was losing, fair and square.


A philosopher, Jeff Malpas, argues that if suffering threatens a breakdown in the intactness of the person, then the refusal to recognise the suffering of others potentially represents a double threat.

Malpas argues that it is a refusal to acknowledge the persons who bear that suffering, but in addition, it is a refusal to recognise our own connectedness to those persons, and so is a refusal of our own personhood, our own being human.

Another interesting philosophical position is also reached by Paul Ricoeur.

“It is the confidence that the self has in its ability to act and to suffer, to do and undergo things that it can impute to itself as its own doings and sufferings.” (his entry in the ‘Stanford Encyclopaedia of Philosophy)

In the legal sphere, the words “pain and suffering” are used somewhat interchangeably physical and emotional damage, as well as discomfort caused by medical treatment of the injuries (surgery, radiotherapy, etc.), limitations on daily activities, depression, scarring and disfigurement. Such judgments need to be accurately assessed, for the purposes of compensation. But judging the degree of ‘suffering’ of a person with dementia very rarely occurs in the context of an industrial compensation case.

In a completely different world, suffering and pleasure are respectively the negative and positive affects, or hedonic tones, or valences that psychologists often identify as basic in our emotional lives.

The evolutionary role of physical and mental suffering, through natural selection, is considered to be quite primitive in nature: it warns of threats, motivates coping (fight or flight, escapism), and reinforces negatively certain behaviours (punishment).

The brain areas involved in someone’s perception of suffering using this reductionist approach might be identifiable. But who’s to say what you measure in a brain scanner is the same as a person’s perception of suffering?

And if the disease process alters the parts of the brain involved in the perception of suffering, have such individuals lost an ability to perceive suffering?

Consistent with ‘personhood’, individual opinions will differ, and nobody has a ‘correct opinion’ as such. For as many who feel that ‘suffering’ is a very genuine phenomenon over which it is dangerous to be in denial, they are others who do not feel that persons with dementia should be specifically targetted for special treatment.

So, beware of saying ‘dementia sufferers’. You may be opening a can of worms, even in the title of a well-meaning article on dementia.