Blame Alice: how language wilfully produces power imbalances in dementia

People who’ve received a diagnosis become entwined in power games, often from clinicians, often conferring blame on them.

As public health and discussion of non-communicable diseases produces more detailed effective messaging of risk factors for Alzheimer’s disease and other dementias, we have to be careful. That is, people find themselves ‘to blame’ for developing dementias, for not having eaten the right foods, drunk too much wine, and so on.

The language actually used to describe people living with dementia is not uncommonly completely unacceptable from some (NOT ALL) clinicians and researchers: e.g. “wetter”, “poor feeder”, “screamer”, “vocaliser”, “obstructive”. Alzheimer’s Australia have produced useful language guidelines specifically on this subject.

I know of one situation in a jurisdiction which went as follows.

“The continent” “vocaliser” “screamer” was in a room in residential care. The nurse did not attend to the buzzer. The resident was waiting for the toilet. By the time the nurse came to the “screamer”, the “vocaliser” had become “the incontinent”. As a result of repeated incidents like this, the nursing home received more State subsidy on account of the higher number of “the incontinents”.

Al Power, in his talk for the Alzheimer’s Disease International, remarked that anytime ‘behaviours’ were referred to by clinicians they tended to be used in a negative context.

And there are a number of words specially invented by the medical profession to describe certain behaviours. For example, Witzelsucht (from the German is a set of rare neurological symptoms characterised by a tendency to make puns, or tell inappropriate jokes or pointless stories in socially inappropriate situations.

And such people can be prescribed mood stabilisers, or other non-person-centred therapy.

Excessive crying can happen in some people with dementia, it is said particularly in vascular dementias.

But who is anyone to judge when these behaviours are particularly excessive? It could be that jokes or crying are perceived by that individual living with dementia at that particular place and time to be entirely appropriate.

There are people with vested interests at stake, seeking substantial amounts of money for “challenging behaviours”.  Many people believe that the term “challenging behaviours” is not right, like “problematic behaviours”.

Normally framed as reducing the quality of life of caregivers, challenging behaviour has been linked to behavioural and psychological symptoms of dementia (BPSD). There’s been a lot of money in treating BPSD pharmacologically, but often are actually an understandable consequence of the environment, for example the breakdown of communication of a person living with dementia and surrounding care staff.

If you provoke me, I might get ‘agitated’ or ‘aggressive’, and exhibit ‘challenging behaviours’, but does this mean you should ‘blame me’, and dose me up to the eyeballs with antipsychotic medication?

Rather, such a behaviour may be seen as an active attempt by the person living with dementia to express an unmet need, which could be physiological or psychological. It might be a manifestation of actual distress, or a reaction to the carer, which may lead to a vicious cycle of increasing distress.

However, as Kitwood articulated, ‘personhood’ is the standing or status that is bestowed on one human being by another. It implies recognition, respect and trust. Each person is acknowledged and valued as an individual regardless.

Similarly, if a person with dementia decides to go for a walk, which may well have a clear purpose in his or her mind, it is pejorative to jump to labelling him or her as a ‘wanderer’. I found, when I was reviewing evidence for this for my second book, it was impossible unless I based my literature searches on the words “wanderer” and “wandering” – and so the system validates itself, and the meme “wandering” continues, and no academic or clinician challenges it.

‘Wandering’ is one of those classic words where blame is transferred onto the individual person with dementia – like “getting lost”. The person with dementia there is ‘to blame’, the term is used in a derogatory way, does not concede the person with dementia might have a valid reason to want to leave his or her environment, and defines a person simply by a symptom.

So – the culture of ‘blaming Alice’ continues.

Personhood-focused relationships: a moral drive to get away from the transactional nature of care

In a way, the approach thus far has been very straightforward.

Even after abolishing ‘asylums’ for mental illness, Tom Kitwood pointed out the remains of the asylum days. That is, with all the best will in the world from all parties involved, a tendency towards ‘warehousing’ of people with later stages of dementia. In such places, often framed as microcosms apart from the rest of society, ‘care’ is meant to take place, but historically with an overdependence on drug rounds rather than a resident’s need to have a haircut, for example. Whilst many professionals do not wish to see care as transactional, there is recurrent use of this language by think tanks and policy makers. This managerial approach fragments life into processes which can be easily identified and, if need be, costed.

One of my biggest surprises is re-reading Tom Kitwood’s “Dementia reconsidered” was his prophecy about the impact that the hybrid market of the NHS and Community Care Act (1990) might place. Care should be care regardless of setting, and care does not necessarily have to be institutionalised. But there are simple ways in which care institutions do not have to be cut off from the rest of the society – why not have WiFi in these places?

But of course, this goes way beyond WiFi.

The drive towards ‘relationships centred care’ was a reconfiguration of person-centred care, but which did not ignore personhood. Reminding myself of Kitwood’s flower, known a decade before the travesty at Mid Staffs, it is clear to see how fundamental aspects of personhood could have mitigated against bad care.

The 'Kitwood flower'

Whilst there is a lot of extremely good care, there are some ‘spoiled apples’ such as Mid Staffs – which subsequently has tried a ‘clean break’ and Winterbourne. But it would be a danger to regard them simply as ‘spoiled apples’ or freak occurrences, as indeed Morecambe Bay pointed out. Markets involve transactions. What Tom Kitwood warned about, albeit subtlely, is very important in my view. What has gone wrong in recent years is care environments being run for a ‘surplus’ or ‘profit’, with budgetary pressures such as PFI loan repayments. Staff themselves have been viewed as a commodity, and the tendency to run a healthy budget sheet has to be run a minimum of staff with minimum time to care – which can render initiatives such as 6Cs ineffective.

A “health transaction” which is under-resourced and rushed is likely to be unsafe. But that is not to say money solves everything. And while we’re on the money there seems to be plenty of money elsewhere, for example in finding a ‘cure for dementia’, the ultimate nirvana which Kitwood indeed warned about.


Neither the person living with dementia nor caregiver wish to be involved in a ‘woe is me’ ‘victimhood’ race to the bottom, but the pressures for not being appreciated properly are huge for both parties. Despite think tanks and policy makers wanting to ‘measure it’, the quality of person-centred care has been hard to define. That’s because, I believe, personhood is fundamentally about relationships too, as well as the uniqueness of the person at that particular place and time.

Kitwood’s own definition on page 8 of ‘Dementia reconsidered’ pulls no punches.

“Thus we arrive at a definition of personhood, as I shall use the term in this book. It is a standing or status that is bestowed upon one human being, by others, in the relationship and social being. It implies recognition, respect and trust. Both the accoeding of personhood, and the failure to do so, have consequences that are empirically testable.”

A quality of care for dementia is not necessarily the same as the quality of medication. Take for example the lack of effects of the vast majority of ‘dementia drugs’ on quality of life. But quality of care, one would pretty readily concede, is linked to the quality of relationships. The idea that relationships involve emotion and affect, and reciprocal, is clearly defined in the construct of ‘relationships centred care‘.

But as a financial transaction, this is hard to measure; and Kitwood conceded there is not real competition for the market to be effective (p.44). And striking is Kitwood’s claim that ‘In particular, people do not know what they need and can be easily deceived by ‘experts’ who act for economic motives’. Another view of this would be to all embracing and for it to be reframed yet again as ‘patient and family-centred care’. But note the reference to ‘care transactions’ on this page, and the construct appears more like a service to sell rather a frame of mind arguably.  And not everyone has a family.

In my final book on residential care (including care homes and nursing homes), I will reset the direction of the compass of ‘person-centred care’, a term used by Kitwood himself, to orient it more to what I think Tom Kitwood himself meant: “personhood focused relationships”, which can indeed be applied to residential care settings.

Person-centred care’s focus shouldn’t be profit generation. But it does deserve attention in dementia.


Often ‘person centred care’ can be synonymous with profit generation in the private sector, hence a focus more on purses than persons as once quipped by Kate Swaffer, but it is a methodology whose roots warrant scrutiny. It gets away from the idea of patients as fodder for biochemical and neuroimaging investigations, with not much to be added by professionals. The meme that ‘there is no treatment for treatment’ plays very nicely into the medical model of dementia. However, taking a more social or psychological approach, you get a totally different perspective.

The complexity of dementia demands comprehensive individualised care that addresses physical, psychological, social, and legal issues of the persons with dementia as well as their caregivers Recently, person-centred care (PCC) has become valued in the field of dementia care. Nonetheless, PCC has been considered to be rather abstract or vague, partly as many publications are based on personal opinion, anecdotal evidence and/or theoretical constructs only.

Person-centred care is increasingly considered essential, whereas purpose-built facilities and environmental design are reported to enhance safety and to have a positive effect on behaviour. Within the UK National Health Service (NHS), the provision of person-centred services for individuals with acquired neurological conditions has been widely promoted. Services provided for people with dementia have been criticised in reports such as the UK Audit Commission’s ‘Forget-Me-Not’ which found them inflexible rather than person-centred, with poor integration of health and social services (Audit Commission, 2000).

To inform and direct service development for this clinical population, the National Service Framework for Long Term Neurological Conditions (Department of Health, 2005) originally set out quality requirements for improving PCC. PCC in rehabilitation has been defined as an approach that facilitates participation in decision making and goal-setting, client-centred education, client evaluation of outcomes, family involvement, emotional support, physical comfort, co-ordination and continuity.

Progressive deterioration in cognition, function, and behaviour make people with dementia increasingly dependent on others for normal activities of daily living. A person-centred approach is uniquely enmeshed with the pivotal importance of dignity. Dignity of identity represents a person’s subjective experiences of dignity and is related to integrity, autonomy, self-respect and social relations. This kind of dignity may be taken away or threatened by external events or by the acts of other people, for example, if an individual is humiliated or treated as an object.

Ideas about person-centred caregiving have been discussed by several authors within the gerontology literature. In the United Kingdom and elsewhere, Kitwood’s work with residents with dementia has been influential (Kitwood, 1997). This approach reconceptualises the dementias as involving processes not focused on pathology but on the social psychology of the person affected. An individual’s characteristics, including such things as the past, roles, personality, values, self-worth, spirituality, and so on, combined and defined through years of living, are often used to identify personhood at a higher level. Kitwood’s research places an emphasis on the belief that older adults should be treated as social beings worthy of relationship. Within each human being, regardless of cognitive impairments, is the desire to be respected and connected with others.

Dementia-care mapping (DCM) is a person-centred, multi-component intervention developed by the Dementia Research Group at Bradford University in the UK and is based on Kitwood’s social-psychological theory of personhood in dementia. DCM is a systematic approach for the assessment of PCC that can help to identify factors influencing behavior and to create individual person-centred care plans. DCM can also be used as an assessment for residents’ well-being.

As recent research investigations in nursing homes have emphasised, the personal relationships direct care workers forge with individual residents appear central to quality of care or quality of life outcomes on the part of residents. Evidence for improved outcomes for people with dementia through provision of person-centred care and dementia-care mapping thus far has been largely observational. However, taking a more robust scientific approach (it is mooted), person-centred care and dementia-care mapping both seem to reduce agitation in people with dementia in residential care.

Nursing staff’s person-centredness does play a modest role in relation to job characteristics and job-related well-being. Flexibility, possibly, is an essential ingredient of personcentered care. This person-centred care philosophy attempts to adapt care to the needs, preserved abilities, personality, habits, preferences, and cognitive, sensory, and physical limitations of the person with dementia. In order to do so, caregivers often have to adapt schedules, decision-making processes, and environments to the needs of the person with dementia, thus requiring a great degree of flexibility. It is currently felt that DCM is a “cost-neutral” intervention. It effectively reduces outpatient hospital appointments compared to usual care. Other considerations than costs, such as nursing homes’ preferences, may determine whether they adopt the DCM method.

The concept of person-centred care has recently been expanded to include “family-centred care” which acknowledges the important role of the family or other loved ones in the patient’s final days. Whereas experiences of having a relative with dementia in long-term care have been explored, the experience of spouses specifically is relatively sparse. As a contrast, staff on standard care wards often do not routinely complete personal profile documentation with family carers.

There has been – on the whole – a welcome recognition of the importance of a well-trained workforce to support people with dementia living in care homes. However, there is an emerging between the interventions that are routinely available and being commissioned, and the evidence base indicating benefit, arguably. In a way, person-centred care and family centred-care are not especially different what excellent caregivers, including professionals, should have been doing. Whilst nobody ‘owns’ the agenda, it would be a real shame if the marketing and corporatism o this ideology overplayed their hands at the expense of their clinical underpinnings.

Audit Commission. Forget Me Not: Mental Health Services for Older People. London: Audit Commission, 2000.

Department of Health (2012b). Compassion in practice: Nursing, midwifery and care staff. Our vision and strategy. London: Department of Health.

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

“There’s more to a person than the dementia”. Why personhood matters for future dementia policy.

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.



There’s more to a person than the dementia.

In 1992, the late Prof Tom Kitwood founded Bradford Dementia Group, initially a side-line. Its philosophy is based on a “person-centred” approach, quite simply to “treat others in a way you yourself would like to be treated”.

A giant in dementia care and academia, I feel he will never bettered.

His obituary in the Independent newspaper is here.

Personhood is the status of being a person. Its importance transcends medicine, nursing, policy, philosophy, ethics and law even.

Kitwood (1997) claimed that personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect.

A really helpful exploration of this is found here on the @AlzheimerEurope website.

Personhood in dementia is of course at risk of ‘paralyis by analysis’, but the acknowledgement that personhood depends on the interaction of a person with his or her environment is a fundamental one.

Placing that person in the context of his past and present (e.g. education, social circumstances) is fundamental. Without that context, you cannot understand that person’s future.

And how that person interacts with services in the community, e.g. housing associations, is crucial to our understanding of that lived experience of that person.

All this has fundamental implications for health policy in England.

Andy Burnham MP at the NHS Confederation 2014 said that he was concerned that the ‘Better Care Fund’ gives integration of health services a ‘bad name’.

It is of course possible to become focused on the minutiae of service delivery, for example shared electronic patient records and personal health budgets, if one is more concerned about the providers of care.

Ironically, the chief proponents of the catchphrase, “I don’t care who is providing my care” are actually intensely deeply worried about the fact it might NOT be a private health care provider.

Person-centered care is an approach which has been embraced by multi-national corporates too, so it is perhaps not altogether a surprise that Simon Stevens, the current CEO of NHS England, might be sympathetic to the approach.

Whole-person care has seen all sorts of descriptions, including IPPR, the Fabians, and an analysis from Sir John Oldham’s Commission,  and “Strategy&“, for example.

The focus of the National Health Service though, in meeting their ‘efficiency savings’, has somewhat drifted into a ‘Now serving number 43′ approach.

When I went to have a blood test in the NHS earlier this week, I thought I had wandered into a delicatessen by accident.


But ‘whole person care’ would represent a fundamental change in direction from a future Government.

Under this construct, social care would become subsumed under the NHS such that health and care could be unified at last. Possibly it paves the way for a National Care Service at some later date too.

But treating a person not a diagnosis is of course extremely important, lying somewhat uneasily with a public approach of treating numbers: for example, a need to increase dementia diagnosis rates, despite the NHS patient’s own consent for such a diagnosis.

I have seen this with my own eyes, as indeed anyone who has been an inpatient in the NHS has. Stripped of identity through the ritualistic wearing of NHS pyjamas, you become known to staff by your bed number rather than your name, or known by your diagnosis. This is clearly not right, despite years of professional training for current NHS staff. This is why the campaigning by Kate Granger (“#hellomynameis”) is so important.

It is still the case that many people’s experiences of when a family relative becomes an inpatient in the National Health Service is a miserable one. I have been – albeit a long time ago – as a medical student on ward rounds in Cambridge where a neurosurgeon will say openly, “He has dementia”, and move onto the next patient.

So the message of @DementiaFriends is a crucial one.

Together with the other four messages, that dementia is caused by a diseases of the brain, it’s possible to live well with dementia, dementia is not just about losing your memory, dementia is not part of normal ageing, the notion that there’s more to a person than the dementia is especially important.

And apart from anything else, many people living with dementia also have other medical conditions.

And apart from anything else, many people living with dementia also have amazing other skills, such as cooking (Kate Swaffer), fishing (Norman McNamara), and encouraging others (see for example Chris Roberts’ great contributions to the community.)


Kitwood, T. (1997).Dementia reconsidered: the person comes first. Open University Press.