Eye on fiction: A disquieting look at dementia

As public awareness and concern about dementia has grown over the last 20 years, publishers have hurried to provide suitable reading material. This has come in a variety of forms. Early autobiographical accounts include My Journey into Alzheimer's Disease (1989) by Rev. Robert Davis; Diana McGowin's feisty Living in the Labyrinth (1993); Dancing with Dementia (2005) and Who Will I Be When I Die? (1997) by Christine Boden, one of the founders of Dementia Advocacy and Support Network International; Through the Wilderness of Alzheimer's (1999) by Robert Simpson and his wife, Anne; and Alzheimer's from the Inside Out (2007) by Richard Taylor, a psychologist diagnosed with Alzheimer's at 58. There has also been a steady stream of accounts by relatives, including Iris (Murdoch) by John Bayley (1998); John Suchet's My Bonnie (his wife) (2010); and Before I Forget: A Daughter's Story (2010) by Fiona Phillips.

Dementia has also interested novelists. An early dramatic account of caring for a person becoming increasingly forgetful was Margaret Forster's Have the Men Had Enough? (1989), while Michael Ignatieff's powerful Scar Tissue (1993) is an account by a son of his mother's loss of memory and artistic skills.

Lisa Genova's Still Alice, first published in 2007, has gained a deserved reputation as a brave fictional attempt at a first-person account of the descent into dementia. Genova has a PhD in neuroscience from Harvard and is an online columnist for the National Alzheimer's Association. From her lengthy acknowledgements, it is clear that she aims to give an accurate picture of living with increasing cognitive difficulties, and an educative exposition of the best treatment on offer for the condition in America today.

The main location is Boston, Massachusetts, and the events take place between September 2003 and September 2005. (As others have commented, the deterioration is melodramatically and untypically rapid.) Alice Howland is an internationally renowned leader in the field of linguistic development and a tenured professor in psychology at Harvard. Both Alice and her husband, John, a research cellular biologist also at Harvard, value themselves primarily as successful scientists. Work must take priority over caring for each other. As early as p.3 (page numbers refer to a 2010 edition), Alice, flying out to Stanford, asks John to be home when she gets back.
'We haven't seen each other for a while. Please try to be home?' she asked. 'I know. I'll try.'

The question mark after Alice's request tells us, correctly, of the likely outcome.
'He was in the middle of an experiment and couldn't leave it to come home. She'd certainly been in his shoes innumerable times. That was what they did. This was who they were. The voice called her a stupid fool.' (p.19)

Not surprisingly, they have passed these values down to their three children. Anna is a successful corporate lawyer, working 80–90 hours a week, and wondering if children can be fitted around career advancement. Their son, Tom, is studying to become a cardiothoracic surgeon. Only their youngest, Lydia, has not followed this road. She has spent time in Europe, and is now attempting to become a stage actress on the West Coast, and refusing, much to her mother's fury ('Alice nearly lost her mind,' p.11), to go to university. Alice's ability to understand Lydia's life path is hampered by the fact that her busy schedule ('swamped by too many urgent things at the time') has meant that she has never been present to see Lydia act in a play (pp.16–17). However, Lydia's non-conventional career path does not mean that she does not value career advancement. At a family meeting, she is quietly rehearsing her lines (p.103).

Alice is 50 years old when, on a trip to give a prestigious lecture at Stanford, she experiences word-finding difficulties and misplaces her Blackberry. Her initial self-diagnosis is that these slips are due to her going through the menopause. However, her physician quickly disabuses her of this hypothesis when he refers her to a neuropsychologist, who carries out or authorises a series of cognitive and medical procedures, including a lumbar puncture, to which no risk is apparently attached. He then briskly tells her that she has (early onset) Alzheimer's.

A major theme is how illness is to be understood and treated. The body, including the brain, is a machine that must function in order to maintain the career identity; and if it is not functioning optimally, it is the responsibility of the medical profession to fix it and return it to work. Psychological factors are nearly irrelevant to this process. What matters is what drugs are available or in development.

What is noteworthy is the tripartite system: drug companies, doctor and patient. There is not the linear progression of doctor keeping au fait with medical developments and explaining these to the patient. Rather, the patient has accessed the claims made by drug companies and then expects the doctor to prescribe accordingly. This unity is nicely expressed in the rooms of Alice's physician, 'decorated with framed Ansel Adams [a 1930's iconic art photographer of the American West] and pharmaceutical advertisements' (p.37). There is no suggestion that scientific advancement might be hindered by the needs of pharmaceutical companies.

Only conditions that drugs can treat are 'real', so that emotional states must be mutated into them. Alice has the tragedy of both her mother and sister being killed, while being driven by her drunken father. Her traumatic grief is consistently referred to as 'depression' (p.46, p.154) and treated with Prozac.

Alice goes by herself to her physician and then to two neurological examination sessions. The neurologist tells her that 'in the future you're going to have to bring a family member or somebody who sees you regularly… you may not be the most reliable source of what's going on' (p.55). The idea that she might need emotional support at this time does not seem to occur to the neurologist for, at the end of the screening, he tells her bluntly that 'you fit the criteria of having probable Alzheimer's disease' (p.70). He is telling her she has early onset dementia, with a rapid decline and death within a few years – in short a death sentence and a terrible dying – without any discussion or support. She is sent away and told to come back in six months (p.72).

There is no evidence that the author considers this poor practice, nor is it taken as such by Alice. It is noticeable that the doctors invariably ask closed questions, rather than seeking to explore Alice's views and feelings through open-ended questions. It is not clear that Alice is offered any emotional support whatsoever, although she is told of a social worker in the unit who 'can help you with resources and support'. Yet while the neurology practice has little to offer the sufferer, for her husband, they have a carer's group run by two professional staff (p.136, p.210).

Her university colleagues provide little support. In a rather unconvincing scene, Alice feels among friends at the departmental Christmas party ('They were family', p.51). However, when her teaching performance suffers, she is effectively sacked by the head of department. Students have started complaining and, as he points out, their parents are paying $40,000 a year (p.182) (despite the fact that 'the emphasis in the department tipped heavily toward research performance, and so a lot of less-than-optimal teaching was tolerated by both the students and the administration' (p.45). Alice is not offered any occupational health support. She informs her colleagues of her condition, and they briefly call in to commiserate, but none offer support. While she has become irrelevant to her colleagues because of her non-productivity, it is hard to believe that they would cold shoulder her in the same way if her diagnosis was cancer. Later, she attends a departmental presentation, but no staff will sit next to her, some preferring to stand (p.185). As Alice asks herself 'What was she if she wasn't a Harvard professor?' (p. 96); and the answer from her colleagues, is a non-person.

In order to get some support, Alice herself, even when seriously disabled, sets up a group for her fellow early dementia sufferers (p.213ff.). Yet, Alice's need to demonstrate competence continues, as she decides to drop out of the group because her condition has worsened – just when one might have thought she needed their support more than ever. (In the long-running Memory Bank group in Wadebridge, Cornwall [Bender & Constance, 2005; Bender et al., 2007], where the decision to discharge could only be made by members themselves, we found that members offered continued support to each other, across quite sharply varying degrees of cognitive difficulties; and that the members only stopped attending a few months before their deaths.)

It is interesting to see how these themes play out at the end of the book, when Alice has emotional responses, but little ability to recognise family members or verbalise. John, her husband, is offered an important post in New York, which he is determined to take, arguing that Alice is now so disorientated that it doesn't matter which city she is in (p.224). However, neither Alice nor her daughters are willing for her to move, and the book ends with Lydia, coming East to study, and Anna, now with newborn twins, helping their mother. John, as expected, can only give limited support, given the demands of his new post. Tom plays little part in helping his mother, being involved in his medical studies. Men cannot be expected to stop giving their careers priority, even when Alice has manifestly only a few months left to live.

Still Alice is a disquieting book. Despite the family's affluence, its value systems and those of her colleagues, along with the behaviour of the medical professionals, make Alice's predicament far more lonely and desperate than it needs to be.

The American setting does not diminish the relevance the book has for UK services. Neo-liberal capitalist assumptions, actively encouraged by UK as much as by US governments – that you are only as valuable, and your job only as permanent, as your last research grant/ sales/assessment; and that this performance is the function of the individual, not the context in which they are operating – means that career status is the only important identity marker, in terms of economic, social status and psychological well-being. The need therefore for the consumption of a drug to allow a rapid return to work makes sense in this framework.

Emotional neglect, caused in large part by career aspirations and work as the major identity, would also be valid for British professional workers; while, for those in more precarious and badly paid jobs, the lack of flexibility, both of time usage and economic resources, may well result in unwilling neglect (Bender, 2013).

Government policy, enthusiastically supported by research groups and dementia charities, is that the only way forward is through the development of drugs, although there is no clear understanding of the disease processes on which to base such developments (Lock, 2013). Concurrent with this policy is a lack of funding for the development of ameliorative psychological approaches. The neglect of support services also applies in the UK, where these services, never lavish, have been slashed during the last few years (Bender, 2014).

The loneliness and despair of the Alices of this world cross national boundaries and demand the creation of value and work systems that permit a more caring response from families. 
We also need a greater willingness among psychologists, and other professionals, to visibly and vocally object to the cruelty and lack of compassion in the present provision of services for people with cognitive and skills difficulties.

Mike Bender is a retired consultant clinical psychologist for older adults and author of a number of books on dementia, most recently You're Worried You Might Have Alzheimer's
[email protected]

References

Bender, M.P. (2013). You're worried you might have Alzheimer's: What YOU can do about it. www.beeswing.biz 
Bender, M.P. (2014, January). The ethics of complicity? Clinical Psychology Forum, Issue 253, pp.52–56.
Bender, M.P. & Constance, G. (2005). Wadebridge Memory Bank: A psychoeducation group. Journal of Dementia Care, 13(1), 28–30.
Bender, M.P., Constance, G. & Williams, J. (2007). Wadebridge Memory Bank Group – Three years on. Journal of Dementia Care, 15(3), 16–17.
Genova, L. (2010). Still Alice. London: Simon & Schuster Pocket Books.
Lock, M. (2013). The Alzheimer conundrum: Entanglements of dementia and aging. Princeton, NJ: Princeton University Press.