This month, Dr Rahman has written a really interesting research blog on identity, and we are extremely grateful to him for his expertise, his continued willingness to make time to do this for us at no charge.
This support of Dementia Alliance International and all people with dementia in general is greatly appreciated. Thank you Shibley.
What happens to identity when somebody is diagnosed or ‘undiagnosed’ with dementia?
A curious problem has arisen in English dementia service provision.
As a result of the perfect storm of the pressure on primary care to diagnose dementia, and the lack of sufficient resources to primary care, as well as the burgeoning pressures on the memory clinic service, there has been a significant number of people being ‘undiagnosed’ with dementia too.
But having any diagnosis of dementia forces you to make sense of your life as it is, against the background of how it was.
Recent research in dementia has thrown much light on self and identity, and, whilst interesting in itself, provides further clues about how best person-centred integrated care pathways might be best designed in future.
This article in my ‘research roundup’ series looks at recent advances in the research on self and identity in dementia, a hugely important area of research.
- Inaccurate diagnoses of dementia in recent English dementia policy
Last year (20150, it was reported that researchers at the University of Sheffield had found that the number of ‘inaccurate’ referrals by GPs to memory clinics – centres to diagnose dementia – has doubled since the Government’s financial incentivising scheme had been introduced.
A study of 150 patients found that just over half – 52 per cent – who had been sent to memory clinics for scans since October were later found not to have dementia. This compared to rates of between 25 and 30 per cent before the scheme was introduced. Many had temporary memory problems brought on by depression or old age rather than dementia. Inevitably, every misdiagnosis of dementia has a back story too, although the opposite, of people languishing without a diagnosis, is frightful too.
On 26 February 2016, this policy issue had gathered momentum: in an article “Revealed: the dementia diagnosis drive that went too far” in Pulse magazine, Caroline Price (2016) wrote:
“Figures obtained from 11 NHS trusts showed 152% increase in the number of patients wrongly labelled as potentially having dementia under the diagnosis drive, causing them unnecessary anxiety and affecting the GP-patient relationship.
These data, obtained under a Freedom of Information request, reveal there were 10,019 GP referrals across 11 trusts in 2011/12, when the Prime Minister launched his ‘challenge’ on dementia, and that this more than doubled to 22,109 in 2014/15.”
- The impact of a diagnosis of dementia: the notion of ‘patienthood’
Being given a diagnosis of dementia has a huge impact on your sense of personal identity.
The diagnosis is bound to invest a lot of emotional energy – particularly if you then go onto advocate in a public arena on behalf of people living with dementia as someone living with dementia yourself.
But if your diagnosis changes – this could well be not because a physician ‘has made a mistake’, but because more information has come to light – e.g. a change in thinking, or a change in the appearance of a brain scan.
The disclosure of the diagnosis heralds, arguably, the beginning of an additional identity of ‘patienthood’, which undoubtedly requires particular sensitivity. Sabat and colleagues are particularly helpful here.
“Another ‘fixed’ category would be the ‘patienthood’ of the person that is then combined with a particular diagnosis. Thus, a person’s diagnosis and status as a patient become the key features of identification in a narrative about the person, and the diagnostic label becomes an adjective that then describes the person and thereby restricts his or her social identity. As a result of such a limited identity that is, itself, based on a pathological attribute or set of pathological attributes, the person so labelled can easily become marginalized and essentially imprisoned in a web of negative stereotypes.” (Sabat et al., 2011)
The diagnosis itself can lead to a change of perceived identity with others around you, as Sabat, Napolitano and Fath (2004) note.
“When healthy persons refrain from engaging in malignant positioning of the person with AD in the early stages of the disease, the degree to which the person with AD experiences a loss of control, humiliation, embarrassment, and other losses can be ameliorated. As a result, the person’s remaining intact cognitive abilities may be sustained for a longer period of time than might otherwise be the case.”
It is often emphasised how empowering a diagnosis of dementia could be, in that it provides an account of symptoms, and allows you and your closest to plan for the future.
But a complete account, in honesty, needs to embrace how the identity of patienthood can be potentially disempowering too. In a recent study, some participants struggled with their newly acquired label of behavioural variant of frontotemporal dementia, whilst for others “the threat came from their reduced abilities or from lifestyle restrictions imposed upon them due to their illness” (Griffin, Oyebode and Allen, 2015).
- The general importance of self and identity
The notion of what makes up “the self” is therefore relevant. From a research perspective, the self is very difficult to define, and researchers have based their studies on a wide variety of models and concepts (Caddell and Clare, 2010). However, empirical evidence regarding the impact of dementia on the self remains limited. (Clare et al., 2013)
Personal identity is defined as the state and feeling of being the same as a person described or claimed, and having unique identifying characteristics that remain stable over time.
Recently, there has been much debate in the literature regarding the extent to which identity remains intact in people with dementia (Caddell and Clare, 2011) - although this seems at odds, potentially, with rapidly disappearing fragments in “the orange” as depicted in the recent Alzheimer’s Research UK campaign for raising dementia awareness entitled “Share the orange”.
This chimes with the prevailing image of dementia as a loss of self and a change of identity leads to the situation that persons with dementia represent difference and otherness. Policies for an ageing society with a large number of persons living with dementia are influenced by this ‘shock doctrine’ of the fear of losing one’s identity and self (Naue and Kroll, 2008): though this may be altogether rather unfair.
Martin Conway (2005) in a challenging, and hugely interesting, article a decade ago threw back to the classical work of William James, emphasising that memory is an important feature of yourself. It would appear intuitively correct that your idea about yourself is based on your recollections of memories about yourself. But this can go wrong – and it is not impossible that this will go wrong in dementia.
Conway describes previous work on ‘coherence’, how the fact pattern about events say in the past are refashioned to emphasise information relevant to your current life. This link with your autobiographical past remains one of the most enduring enigmas of dementia ‘self’ research. Latterly, however, a distinction has been drawn between the continuous, coherent sense of identity that characterises normal human experience, the ‘ontological self’, and the types of self-knowledge that underpin and support it (reviewed in Clare et al., 2013).
But Conway also cites other work where this coherence can strikingly break down; for example a patient living with chronic schizophrenia who convinces himself he is a ‘grandmaster’ of chess despite a complete inability to play chess.
How you perceive changes in self and identity in diagnosis might relate to underlying cognitive processes, according to most recent research.
For example, from a cognitive point of view, patients in the early stages of semantic dementia with a complicated picture of loss of semantic knowledge, knowledge for types of things. This generally involves knowledge of objects, concepts, famous people, and public events, and engenders some particular language deficit.
According to Duval and colleagues (2011), a novel finding of theirs was that persons with semantic dementias had problems in recalling semantic personal events (though not episodic ones to do with events) related to their past selves, and also they seemed to have considerable difficulty imagining what they might become in the future.
This has implications for how people with dementias deal with their concepts of the future, and this field of ‘prospection’ is very interesting indeed.
- Looking for the ‘ME’ in dementia
Or an “ecological self” represents awareness of the self as perceived with respect to the physical environment, through the processing of visual, auditory, and somatosensory stimuli. The continuous flow of visual information means that the entity is constantly aware of its position, posture and movement with respect to the environment (Caddell and Clare, 2013).
But such a theory clearly is ill equipped to predict distortions of self and identity which could be hypothesised to take place in the context of people living with higher order visual processing disturbances, say in posterior cortical atrophy?
The trick will be – as it is for most other areas of dementia research and service provision – not to consider dementia as one homogenous mass, and fall back on the individuality of all people living with dementia. This is looking for the ‘ME’ in ‘dementia’.
This is of course the heart of personhood.
References
Borland, S. (2015) Patients wrongly told they may have dementia by GPs on a controversial £55 bonus scheme, researchers warn, 24 February 2015, http://www.dailymail.co.uk/health/article-2966163/Patients-wrongly-told-dementia-GPs-controversial-55-bonus-scheme-researchers-warn.html#ixzz43fTkhAbm (accessed 22 March 2016).
Caddell LS, Clare L. (2010) The impact of dementia on self and identity: a systematic review. Clin Psychol Rev. 2010 Feb;30(1):113-26.
Caddell LS, Clare L. (2013) Studying the self in people with dementia: how might we proceed? Dementia (London). Mar;12(2):192-209.
Caddell, LS, Clare, L. (2011) I’m still the same person: The impact of early-stage dementia on identity, Dementia, 10(3) 379–398.
Clare L, Whitaker CJ, Nelis SM, Martyr A, Markova IS, Roth I, Woods RT, Morris RG. (2013) Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life. Int J Geriatr Psychiatry. 2013 May;28(5):494-503.
Conway, M.A. (2005) Memory and the self. Journal of Memory and Language 53, 594–628.
Duval C, Desgranges B, de La Sayette V, Belliard S, Eustache F, Piolino P. (2012) What happens to personal identity when semantic knowledge degrades? A study of the self and autobiographical memory in semantic dementia. Neuropsychologia, Jan;50(2):254 65.
Griffin J, Oyebode JR, Allen J. (2015) Living with a diagnosis of behavioural-variant frontotemporal dementia: The person's experience. Dementia (London). Feb 2.
Hulko, W. (2009) From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia. Journal of Aging Studies 23, 131–144.
Naue U, Kroll T. (2009) 'The demented other': identity and difference in dementia. Nurs Philos. Jan;10(1):26-33.
Price, C. (2016) Revealed: the dementia diagnosis drive that went too far, http://www.pulsetoday.co.uk/clinical/more-clinical-areas/neurology/revealed-the-dementia-diagnosis-drive-that-went-too-far/20031247.fullarticle (accessed 22 March 2016).
Sabat SR, Johnson A, Swarbrick C, Keady J. (2011) The 'demented other' or simply 'a person'? Extending the philosophical discourse of Naue and Kroll through the situated self. Nurs Philos. Oct;12(4):282-92; discussion 293-6.
Sabat SR, Napolitano L, Fath H. (2004) Barriers to the construction of a valued social identity: a case study of Alzheimer's disease. Am J Alzheimers Dis Other Demen. May Jun;19(3):177-85.
Author: Dr Shibley Rahman 2016