On Reclaiming Authority: The Enabling Discourse of Alzheimer’s Disease

Abstract

This chapter illustrates how more recent Alzheimer’s disease patient narratives take patient activism further in both form and contents. Disease-imposed constraints become the narrative’s core in terms of both aesthetic presentation and political pursuit. This development parallels the changes observed in caregiver life-writing, as patients and their needs reach the centre of narrative presentation and performance. This chapter argues that patients can thrive, building on earlier advocacy of their fellow sufferers, on more fragmented illness presentation. They can choose narrative forms that match their attention span as well as their political intentions, and show them as living within their remaining capabilities. In this way, patients authoritatively claim their continued independence within their narrative abilities, making themselves partners in the ensuing sociopolitical, cultural and economic debates.

I was just tired of people labeling me as crazy and not trying to understand the disease or support me.¹

Alzheimer ist zwar eine harte Sache – aber weil es eben auch so hart ist, habe ich das Gefühl, vor nichts mehr Angst haben zu müssen. Und das eröffnet Möglichkeiten und Chancen.

[Alzheimer’s is a tough thing – but since it is so tough, I feel I don’t have to be afraid of anything anymore. And this opens up opportunities and chances.]²

Patrick McDonagh has offered a detailed analysis of the representation of idiocy and folly as genealogical precursors of intellectual or cognitive disability. In drawing on popular, scientific, sociopolitical and literary discourses, his work suggests that not only cultural traditions, as identified by Woodward, but especially also economic considerations and demographic structures impact on how society views mental disability. McDonagh projects his insights into conceptual developments in nineteenth-century Britain onto the present-day representation of ‘people identified as having intellectual or learning disabilities’.³ He places significant emphasis on institutional criticism and socio-economic considerations, thus, inviting a deliberation on the growing prevalence of older age cognitive impairment in modern times.

In the preceding chapter, I highlighted how the perceived societal pressure to perform as an able social being impacts on the author-narrators’ choice of presentation, likely at the expense of an account that would be fully credible in narrative terms. At the same time, we have become aware of a slow shift towards accounts that increasingly embrace the disease’s impact on narrative capabilities. Two moves have taken place: first, the step from traditionalist linear storylines to accounts that accept disease-imposed narrative fragmentation as a given; and, thereafter, the step towards the patient’s deliberate choice of fragmented narration. This second move suggests that a new ‘norm’ has entered patient life-writing and articulation – a fact I almost see in ironic contradistinction to Ramanathan’s remark that patients elaborate their telling in negotiation with their audience ‘like those of us who are normal’.⁴

Ramanathan made this observation in 1997, two years after Lennard J. Davis had asserted that ‘our construction of the normal world is based on a radical repression of disability’. Davis specifically concentrates on the physical body, but his brief excursion on madness as a condition that similarly ‘shows up as a disruption in the visual field’ makes his work directly applicable to cognitive decline:

[T]he fear is that the mind is fragmenting, breaking up, falling apart, losing itself – all terms we associate with becoming mad. With the considerable information we have about the biological roots of mental illness, we begin to see the disease again as a breaking up of ‘normal’ body chemistry: amino acid production gone awry, depleted levels of certain polypeptide chains or hormones.⁵

Henderson’s as well as DeBaggio’s outspoken and deliberate choice to tell the disease in an unconventional, a not ‘normal’ form reflects a shift in power structures. This shift increasingly enables patients to tell their story within a new framework of narrative norms; norms that do not demand temporal coherence or romantic endings for an individual self and continued personhood to be acknowledged by a reader who, in refusing such acknowledgement, as Davis would put it, remains an ‘outsider’.

In this final chapter, I look at patient narratives that have emerged against the background of, and in mutual exchange with, such shifting power structures. I particularly analyse the reflections of recently rising patient activism in first-person testimonies. With McDonagh’s observations in mind, I hope to identify how patients assert themselves in the context of increasing socio-economic and healthcare pressures, and show how the growing societal awareness of the condition influenced patient writing. My comparison of Jeanne L. Lee’s and Richard Taylor’s accounts deliberates once more on how gender influences the formal means these author-narrators choose to assert their continued identity within such a shifting discourse.

In the second part of this chapter, I read Claude Couturier’s diary and Christine Bryden’s collage with the question in mind as to how their presentations bring together a drive to counter-narrate societal perceptions of passivity and dependence, on the one hand, and an awareness of the necessity to offer a readable account that nevertheless accepts disease-imposed limitations, on the other hand. I argue that the essay or diary entry as narrative forms that match the patient’s short attention span, while pre-empting the need for closure, unite poetic possibilities and political necessities for patients to dictate changes in a shifting dementia discourse.

I close this chapter asking how the ‘genre’ of dementia patient narratives has evolved, and in what ways this development parallels that observed for dementia caregiver narratives. To this end, I reflect on a narrative, whose publication has been championed by a patient support network. This link echoes the political nature of Sylvia Zacharias’s publication with and for Hirnliga ten years earlier. Helga Rohra acknowledges her narrative limits, but, as the acknowledged speaker of an organised patient movement, sets the bar high for political and socio-economic change.

Times Are Changing II: Patient Activism

Founding member of DASNI, Jeanne L. Lee freely admits the struggles of bringing her story to paper:

I looked back on my notes and realized that even I couldn’t figure out what was what, so how could I expect anyone else to be able to decipher all those mumbo jumbo notes? […] I began to do more on my tape recorder […]. I just had to do it, because I was afraid that if I didn’t get the thought down right then, I would forget […].⁶

As the discrepancy between the eloquent presentation and her professed cognitive difficulties suggests, Lee had to engage the professional writer Cliff Reid to bring her story to print. Reid openly confesses that the notes ‘were quite honestly scary. The tapes were […] somewhat disorganized and repetitive’ (77), echoing the impressions we gain from Henderson’s repetitive journal entries. All the same, going to this enormous trouble supports the notion that such writing is to be taken seriously in its exceptionality, especially since the few voices that come to articulate their concerns are the ones advocating for the community of their fellow sufferers, who remain silent.⁷ As I emphasised previously, I believe that patient accounts deserve particular attention, given the tension between current health and social care policies, on the one hand, and the core issues that these patients are crucially concerned with, on the other hand: the medication of their cognitive decline, a working doctor–patient relationship or, as in Graboys’s case, end-of-life questions.⁸

On an aesthetic level, however, collaborative composition makes it difficult to rely on stylistic choices for getting to grips with Lee’s perception of her condition. Therefore, I prefer to focus on the contents of her narrative, also because she claims to:

have personally reviewed every word that appears on these pages […] to ensure that this book represents a credible journey through the emotional world of someone actually afflicted with the disease. (xviii)

What is more, to add further credibility to her telling, Lee supplements, similar to Graboys, her narrative with letters from family and friends. While their selection remains Lee’s prerogative, family loyalty should be assumed as a given.

Lee’s journey formulation relies on her learning to come to terms with her diagnosis. She openly admits her memory lapses, failed marriages, alcohol and drug abuse, and ‘one long succession of suicide attempts’ (20). Eventually, she considers the ‘Alzheimer’s diagnosis to be the best news I’d heard in my life’ (23), since she now ‘could quit trying so hard to cover up my forgetfulness’ (23). I see Lee’s embracing her diagnosis as the final rescue from a life that lacked focus. In this spirit, over two thirds of her text are dedicated to bringing out her activist nature and her acceptance of the condition. Both are strongly reflected in her desire ‘to help improve the understanding between people with Alzheimer’s and those who interact with them’ (xviii), and are lived out in her dedicating entire chapters to ‘doing what I can’ (37), or ‘doctors and health’ (53).

While such emphasis on significance may be rooted in Reid’s efforts to structure Lee’s notes, it further underlines Lee’s agency. This agency counter-narrates Jean Grothé’s passive presentation of his mother which is governed by the concept of decline. Lee follows the insight that: ‘The past is just our experience, and hopefully what we have learned from our experience will lead us to live this moment, right now, in a better way’ (71). This appreciation echoes Christian Zimmermann’s above-quoted view of his condition or Arno Geiger’s perception of his father’s continued, experience-shaped personality. It comes from the understanding ‘that the future, near the end of life, will ultimately take care of itself and is not worth worrying about’.⁹ Lee’s journey leads her, as Ryan and colleagues would say, to ‘a new kind of spiritual awareness’.¹⁰

According to Robert Hill, this present-focused adapting supports coping with cognitive decline much more effectively than concentrating on the past as such – as seen in the accounts of female adult-child caregivers. Such observations further enhance our understanding, gained from an analysis of Phillip Toledano’s and Arno Geiger’s presentations, that the positive conceptualisation of Alzheimer’s disease is intricately linked to that of aging itself. I shall return to this question further below, exploring as to how patients may assert themselves against preconceptions of Alzheimer’s disease as a condition of old age.

In comparison to Robert Davis, Diana Friel McGowin or Larry Rose, Jeanne L. Lee admits to her condition very openly, embraces her diagnosis with optimism and readily surrenders to the need for help in writing her narrative. This attitude may at least partly rely on the fact that dementia has become much more present in the public domain and that caregiving approaches increasingly focus on the wellbeing and continued identity of the patient. Still, I keep wondering, mindful of Graboy’s or DeBaggio’s presentations, whether Lee’s choice of presentation is also related to her writing as a female patient. Turning to a male activist-patient’s account will hopefully give some answers.

In stark contrast to several of the narratives discussed so far, Richard Taylor’s text is not a print-on-demand, let alone self-funded publication, but marketed by a medical publisher.¹¹ Taylor is promoted as an authority, who addresses, as the cover promises, ‘the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate’, ‘[w]ith poignant clarity, candor, and humor’. In short, Taylor speaks ‘from the inside’ in a large-size volume that rather aspires to a degree-course textbook than an engaging paperback.

In purposeful unison with the objective of this presentation, the systematic classification of Taylor’s essays precludes the depiction of his gradual decline, while their brevity meets the limitation of short attention span. Likewise, a collection of essays skilfully circumvents the lack of happy closure; it does not follow the traditional narrative convention to ‘restructure past memories and future expectations in a way that would cohere with the present, bridging the gap by creating a new kind of continuity’.¹²

Also in using a highly accomplished tone that hardly gives cognitive challenge away (but likely suggests editorial support), Taylor claims the intellectual agility that Tilman Jens denies his father. In addition, he frequently describes his condition in terms of a jokey personification, illustrating ‘Dr. Alzheimer and his gang of sticky-footed ne’er-do-wells [as] tromp[ing] around my brain’ (xvi) or on an ‘extended visit between my ears’ (xviii). Such self-deprecating, sarcastic irony suggests that he experiences his condition beyond feelings of anger and resentment. He plays down the actually occurring loss of nerve cells by using euphemisms that conjecture local and, hence, emotional distance from the intellect-threatening centre of the illness process.

That said, Taylor’s book provides a powerful platform for his engagement in a patient-centred discourse. Of course, he only can enter the debate in this authoritative form against the background of twenty-five years of lived, gradually intensified and socially accepted Alzheimer’s patient activism. Until his death in July 2015, Taylor was an active member of DASNI and ADI.¹³ Their establishing is rooted in the writing of patients like McGowin and Rose who called for patient representation and support, and the active contributions of patients like Lee. At the same time, Taylor writes in the awareness and confidence of increasingly promoted patient-centred care. This observation is in line with Basting’s deliberations on Richard Taylor, whom she considers a representative of the ‘new generation of dementia activists’ who build on the foundations of earlier patients. It is of particular note then that Basting, who had personal e-mail exchange with Taylor, considered his book, compared to his e-mails, ‘rather tame’.¹⁴

Amongst others, the psychologist carves out the linguistic subtleties pertaining to a politically correct Alzheimer’s discourse, and aims to re-establish his subjectivity in the face of infantilising and reifying treatment. For example, he stresses that ‘[t]he fact that I have a disease affecting my memory and cognitive processes does not make me any less an adult or any more like a child’ (189), coming to literally shout at the reader: ‘I am not a child. Even if sometimes I act like one, check me out – I AM NOT A CHILD!’ (190; emphasis original). But still, Taylor indirectly links, reminiscent of Reeve Lindbergh’s illustrations, his own behaviour to that of a child, when, for example, juxtaposing his granddaughter’s ‘early childhood reality’ to his own being ‘confused by fantasy […] and reality’ (154).

In partially surrendering to such disabling discourse, Taylor signals his speechlessness in the confrontation with an elusive disease process. Equally, the very tension between private experience and public expression plainly epitomises the fear of losing his standing as a mind-defined psychologist, and echoes the formal and contextual conflicts perceived in Thomas Graboys’s memoir. It also dismantles Taylor’s self-affirming strategy as only partly suitable in view of the condition’s progressive nature. In line with this observation and based on the insight that especially male illness stories must offer the narrator ‘some compensatory power and freedom’, I believe the positive, less intellect-focused presentation in the earlier male narratives to be rooted in the fact that their narrators interpret themselves as justifiably guided or impaired for a higher purpose.¹⁵ In making this claim, I am very much aware that the sample is, though unavoidably, small; but Robert Davis’s, Charles Schneider’s and Larry Rose’s positive outlook is faith-related, as is Mike Donohue’s view professed in his pathography.¹⁶

As Taylor struggles to reconcile his narrative choices fully with the chronic degenerative nature of his condition, we continue to wonder how patients may assert themselves in a discourse that strongly relies on conceptualisations of Alzheimer’s disease as a condition of old age. This question becomes particularly pressing in the light of Robert Hill’s above-discussed insights that lead me to think that the positive conceptualisation of Alzheimer’s disease is tied to that of aging itself.

Two further texts carry such an enabling notion of Alzheimer’s patient discourse a long way: they are written by activist-patients, who strongly identify themselves in their condition, both in terms of the attitudes they profess and the narrative forms they choose. These texts challenge the societal perception of females as being passive and dependent – especially in the confrontation with a condition that is perceived as compromising the male-associated mind more than the female-associated body.

Identity within Dementia: The Patient as Postmodern Prophet?

The title of Christine Bryden’s book, Dancing with Dementia, anticipates that her narrative does not fit the concept of quest or chaos narrative.¹⁷ Indeed, the story begins with Bryden (formerly Boden) taking up studies and getting remarried in the light of her Alzheimer’s disease diagnosis having been amended to that of less aggressively advancing frontotemporal dementia.¹⁸ Therefore, one is tempted to read her narrative as the story of her rebirth. In the first place, this rebirth is not related to her strengthened faith: as a practising Christian, Bryden refrains, in agreement with Hawkins’s findings, from using religious metaphors or myths. Rather, Bryden’s sense of renewal is closely linked to the perception of having survived the life-threatening diagnosis of Alzheimer’s disease, whose confrontation she had described in her first book that largely follows the traditional journey myth.¹⁹

These first impressions of Bryden’s narrative are in tune with Jessica Kingsley’s assertion that ‘she only ever prints an autobiographical narrative that has something different to say, something that cannot be found elsewhere’.²⁰ In fact, Bryden’s metaphorical conceptualisation of ‘rising like a phoenix out of the ashes of that terrible time’ (164) adds a further, unexpected perspective to our reading of the narratives explored so far. It highlights the threat that patients like Robert Davis or Thomas DeBaggio feel. This very different notion is particularly tangible, because Bryden’s initial view of the diagnosis as tantamount to a ‘[d]eath by small steps’ changes to that of an ‘identity crisis’ (156) – a move that alters her quality of life notably.²¹

Against this background, Bryden’s metaphorical language belongs to a journey from which she could actually return; and her shifted outlook gives new meaning to what we have come to understand as disabling images. She requests her fellow sufferers as well as caregivers to:

find the pearl hidden within us. Like the pearl that is formed through the irritation of a grain of sand within an oyster, our pearl has formed through the challenge of living with dementia. (168)

This invitation gives the shell the entirely different notion of value and growth. Patients like Thomas DeBaggio, or caregivers like Frank Wall, by comparison, see this shell as empty and, thus, use it as an image of the patient’s lost potential. Undoubtedly, Robert Davis and others describe a learning process, but their accounts lack Bryden’s metaphorical emphasis on surprise, which further accentuates their desperation. The same is true for Bryden’s affirmation that ‘[e]ach person with dementia is as worthy and precious as a beautiful newborn baby, a gift for us all to cherish’ (170). This view counters Spohr’s objectifying or Ernaux’s helpless use of the child metaphor; and it brings out how differently Bryden perceives of her situation as compared to Taylor. But it also illustrates how strongly metaphorical language relies on the context in which it develops.²²

Bryden’s inferred emphasis on the patient as being the opportunity of growth and development reaches far beyond the perception of McGowin’s, Lee’s or, indeed, Taylor’s ‘still being able’ as counteracting the disabling notions of the child metaphor. Her conceptualisation of growth is necessarily linked to her retrospectively working through the illness experience, with the second chance giving her the opportunity to live out her gratitude. Such a reading adds to a positive reception of her narrative, as gratitude is considered an optimistic coping strategy in the confrontation with age-related decline.²³

But Bryden’s linguistically suggested presence is only partially reflected in the dynamics of her narrative that sets out to chronicle her frequent journeys to support DASNI and ADI, but then mutates into a collection of revised talks she had given during these trips. These essays relate ‘[w]hat it feels like to live with dementia’ (97) or the ‘many ways to help’ (122), and, thus, excellently lend themselves to teaching good pharmaceutical care. Together with further information-containing appendices, these essays encompass over half of the book. Alluding to Taylor’s formal choices, this arrangement confirms Bryden’s ongoing cognitive challenges, to which she, however, owns up very openly:

It has been a tremendous struggle to collect together all my thoughts, talks, speeches, correspondence, notes and so on, for the last six years. Inspiration, rather than memory, has been the thread that enabled me to weave these disjointed fragments into this book. (173)

As such, the book’s composition demonstrates, yet again, that ‘“self” is more than memory’.²⁴ This is especially true since we identify what Anthony Elliot would describe as Bryden’s ‘floating in a realm of fleeting moments, transitory encounters, eternal presents’ as a harmonious adapting to her memory loss.²⁵ Indeed, Bryden’s narrative articulates, in both form and contents, what Elliot defines, and Ballenger deliberates on, as ‘postmodern self’. The very combination of reflective essay with agency inspiring travel reports embodies the continuing surprises in Alzheimer’s patients, without slipping into a romanticising survivor mentality. Bryden concludes:

It is time to move away from the bright lights to a corner of the floor where the rhythm is slower and the music quieter, but still sweet. All I can do now is sit quietly and listen, and hope for a cure. (174)

In the context of Bryden’s dance metaphor I think it noteworthy that Kingsley Publishers cover Bryden’s text with abstract, dance inspiring motifs in bright colours that match the shirt Bryden wears on the inset photo. While other book jackets display faded photographs (McGowin) or half the face of their author-narrator (DeBaggio, Henderson) or designs alluding to the journey into the sunset or a variation thereof (Rose, Davis, Donohue), this design very much suggests Bryden’s active involvement in this dance and underlines her life-affirming attitude.²⁶

Yet, in view of Bryden’s sustained activities, the argument could now run that she finds these powerful images – and carries DeBaggio’s postmodern description on a lived level – principally based on her altered diagnosis and the cognitive changes related to her type of dementia.²⁷ Patients suffering from frontotemporal dementia can, indeed, undergo profound personality changes, and this may be reflected in their developing specific artistic talent.²⁸ But such cases are equally seen in Alzheimer’s disease, where art therapy supports the patient’s wellbeing and communication.²⁹ Claude Couturier’s diary affirms such considerations.³⁰

At the core of her narrative fragments lies a dry humour – possibly reminiscent of Spohr’s certain detachment – that challenges, in Bryden’s spirit, the traditional use of metaphors. Couturier is, for example, concerned about ending up in a vegetative state, an ‘existence…de légume’ [vegetable existence], and would much rather ‘être incinérée’ [be incinerated] under such circumstances.³¹ Nevertheless, she continues with ‘je serai un légume grillé’ [I will be a grilled vegetable; 71], which pokes fun at such inanimate discourse. What is more, in hoping that ‘Dieu au moins sait ce que deviennent mes neurones disparus, et surtout qu’il en fait un bon usage’ [God at least knows what becomes of my lost neurons and that, above all, he makes good use of them; 72], she lifts the cause of her memory loss onto a literally unreachable level. This strategy implies her unspoken acceptance that there is – in view of the illness’s terminal nature – no battle to be fought. The self-saving power of this image starkly contrasts the living death or death sentence, which precludes the option of battle for Thomas DeBaggio, Walter Jens and others and, additionally, deprives them of any activity outside such battle.

Couturier’s continued agency is revealed in her artistic creativity, demonstrated in eight of her paintings that are reproduced on glossy paper in the centre of her diary. Works dating from early stages of her condition, such as ‘Soleils de nuit’ [Sunflowers at night] reflect, as do their titles, Couturier’s painful awareness of her condition. She expresses this awareness as ‘des instants de lucidité terribles, où l’immensité de mon angoisse prend le dessus quand je vois l’étendue de la dégradation de mes facultés dites “normales”’ [moments of terrible clarity, when the immensity of my anxiety is overwhelming, as I see the extent of the degeneration of my so-called ‘normal’ abilities; 103]. The painting’s few colours and sharp contours mark the harsh contrast between Couturier’s ‘sunlit’ awareness within the illness-associated darkness. But as Couturier incorporates Robert Davis’s image into her own creativity and continued autonomy, she works through the frightening outlook proposed by the metaphor itself.³²

All the same, her deliberations emphasise that her journal provides the means for coping on a daily basis. Her diary may be seen as the true literary counterpart of the degenerative nature of the illness, not least since both narrator and reader live with the condition’s uncertainty within the narrator’s horizon and narrative abilities.³³ This is especially true, when considering that, in comparison, Henderson’s diary-like fragments are framed by his wife’s retrospective deliberations on his state. One could caution that Couturier may have revised or significantly altered her diary before handing it to the publisher so that its credibility in reflecting day-to-day changes may be undermined. However, she was prompted on potential publication by her doctor only eight years into her writing, when substantial revision would have been difficult in view of her more advanced cognitive challenge.³⁴ Most importantly, the comparison to Henderson’s memoir illuminates how drastically publishers’ understanding of the readership’s acceptance of postmodern narrative forms has advanced. It also highlights, again, the changing perception patients themselves have of their situation and position of authority within society.

I see this observation supported when revisiting my discussion of Annie Ernaux’s notes. The diary explicitly includes the prospect of death, instead of searching for false closure, like, for example, Thomas DeBaggio’s illness-mirroring text. In line with these considerations, Couturier’s later paintings can be read as a window onto her increasing preoccupations and changing mind set. ‘Sortir’ [Leaving] is composed of pastel, though still bright colours, and artistically witnesses Couturier’s decline, because its impressionistic style focuses less on detail. Likewise, her motif anticipates the advanced condition, given that ‘[l]andscapes present a simple and satisfying theme’. In fact, since this painting depicts a stony road winding past a protruding panorama of trees in bloom, towards towering mountains, the onlooker perceives of Couturier as picturing her experience in a manner, reminiscent of McGowin’s presentation, as a journey towards the unknown, fully aware of her daily struggles and ambivalence.³⁵

It is noteworthy in this context that the daughter Kim Howes Zabbia portrays her mother’s condition in expressionistic terms, relying on mute and deep colours.³⁶ This choice may well suggest her inability to understand the mother’s state. Couturier, by comparison, demonstrates continued realistic agency mostly relying on impressionistic style. This discrepancy, again, highlights the difference in viewpoint and perception between caregiver and patient.

Ultimately, Couturier and Bryden demonstrate that Alzheimer’s disease affects each individual in different ways, even releasing originality and creativity. They both embody the deeper meaning of Toledano’s ‘river’, as they live out their identity beyond the diagnosis, unconcerned about the distance to its ‘mouth’. Admittedly, both patients witness to their strong faith, but – in comparison to the believers Rose, Schneider and Davis – they do not devise eventually only partly enabling explanatory strategies in the first place. Instead, they almost come to see their condition and its consequences as integral parts of their lives.

Audacious as it may sound: in the same way as the Alzheimer’s condition imposes emotionality, passivity and dependence on its ‘victims’, these characteristics are moved beyond their traditional classification as only female. The female Alzheimer’s story becomes the synthesis of gender- and illness-related conceptualisation. And the female individual with Alzheimer’s disease, who demonstrates activity and independence, surmounts both the gender- and illness-related prejudice, to be perceived as doubly strong – exactly like the female caregiver who rises above these ideological prejudices. Framed by the rapidly increasing prevalence and general awareness of the condition, the patient’s original need to secure societal respect through assertion of the self in a polished narrative moves towards the awareness of a separate ‘Alzheimer’s patient identity’, who performs and fully lives within the condition and its presentation.³⁷

The Patient’s World Advises Caregiver and Society

I close my deliberations on narratives by individuals with dementia by looking at a recent publication that, to my mind, not only encompasses the observed changes in the patient discourse but carries the patient self-concept beyond the levels of autonomy discussed so far. The freelance simultaneous translator in the area of medicine and natural sciences Helga Rohra was fifty-five when she was diagnosed with Lewy body dementia.³⁸ She was the first patient to be elected onto the board of the Munich Alzheimer’s Society, which attracted attention from one of Germany’s prominent broadsheet newspapers.³⁹ And her narrative gains particular authority, as its publication was championed by Demenz Support Stuttgart (DSS), whose work furthers ‘das Wohlbefinden von Menschen mit Demenz und das ihrer Begleiter’ [the wellbeing of individuals with dementia as well as that of their companions].⁴⁰ That DSS calls family members companions rather than caregivers inverts the concept underlying earlier approaches of patient-centred care, let alone caregiver-centred attitudes. Patients are considered as continuously independent individuals with a condition.⁴¹

The photograph on the book’s front cover embodies this forward-looking illness discourse: Rohra is slightly inclined towards the reader. Peering over her reading glasses, she looks the viewer straight in the eye. Wearing a grey jacket over a dark polo-neck, a pearl necklace as the only accessory, she looks professional, aware, perceptive. We could take this photograph as staged, since Rohra explicitly acknowledges the star photographer Sammy Hart (120). But we come to appreciate it as Rohra’s own choice and initiative, when looking at it in the context of her commenting on the approach of a photographer-journalist. After an interview, he requested Rohra to ‘sit in front of the window. There I will take some photos of you’. However, Rohra did not like this arrangement. She writes – significantly underpinning earlier considerations regarding Jean Grothé’s as compared to Phillip Toledano’s presentation of their respective parent:

Mir gefiel diese Idee jedoch nicht. Bilder von sitzenden, passiven Betroffenen kennen die Leute doch zuhauf. ‘Nein, ich will etwas Dynamisches, etwas mit Power. Das Foto soll den Menschen Mut machen.’

[I did not like this idea. People know images of sitting, passive afflicted individuals in droves. ‘No, I want something dynamic, something with power. The photo shall inspire people with courage’; 85].

That said, I ‘saw’ Rohra’s subtle and slightly poised smile on the front cover photograph only at a second glance, maybe even only after I had finished reading through her narrative. I wondered whether it was I, the reader and onlooker, who needed time to accept that a dementia patient could still smile, or whether it was Rohra herself who was not totally certain of her emotions. In this context, the double meaning of the title of her narrative is illuminating. ‘Stepping out of the shadow’ indicates Rohra’s reclaiming her right to speak for herself and advocate for her fellow patients – against the common perception that caregivers are the ‘only’ ones who talk and are heard. This is especially true for the German context, where a dementia patient’s popular press first-person account is a first in 2011.⁴² This interpretation of Rohra’s title, in turn, gains further meaning in the context of Henderson’s wish:

I would love to see some people with Alzheimer’s not trying to stay in the shadows all the time but to say, damn it, we’re people too. And we want to be talked to and respected as if we were honest to God real people. (7)

Next to depicting the place assigned to patients in the mainstream dementia discourse, Rohra’s metaphorical shadow also refers to the illness-related darkness pictured by patients like McGowin or Couturier. Rohra sees herself still stepping outside the condition’s metaphorically enhanced liminality. In fact, given that she perceives herself as ‘falling’ and ‘on a slide that leads, in a black tunnel, steep downhill’ (37), her ‘stepping out of the shadow’ is not so dissimilar from Bryden’s phoenix image. In this sense, the narrative’s title points to a more personal meaning. On an earlier occasion, Rohra had written a book chapter on her illness experience using a pseudonym, because she had not wanted her friends and son to find out about her diagnosis.⁴³ Owning up to her real name for the purpose of filming at a conference, ‘stepping out of the shadow into the limelight’ (69) pictures her accepting her life with dementia.⁴⁴

Rohra’s portrayal appears so professional that she was suspected not to be a sufferer (92). Mindful of this belittling experience, Rohra is very much aware that her credibility is at stake. She offers reproductions of her handwritten notes that document her earliest shortcomings (19, 27) – echoing Couturier’s moment-in-time records. But most of all, Rohra goes to great length to explain her narrative capabilities. Since she seems to anticipate questions of many readers, and responds to what medically focused critics had raised in the context of DeBaggio’s narrative, I here quote her at length:

So leicht es mir fällt, zu erzählen und über meine Erlebnisse zu sprechen, so schwer fällt mir das Schreiben von langen Texten […]. Wie also sollte aus meinem gesprochenen Wort und meinen kurzen Notizen der Text werden, den Sie heute als Buch in den Händen halten? Die einfachste Lösung wäre ein Ghostwriter gewesen, der wie bei so mancher Autobiografie das Schreiben übernimmt, als Person aber im Verborgenen bleibt. Ein solches Vorgehen kam jedoch weder für mich noch für den Herausgeber oder den Verlag in Frage. Es sollte erst gar nicht der Eindruck entstehen, ich hätte das Buch von Anfang bis Ende allein geschrieben.

[Even if narrating and talking about my experiences comes easily to me, I find it difficult to write long texts (…). But how should my spoken word and short notes become the text, which you now hold as a book in your hands? The simplest solution would have been a ghost writer, who takes on the writing as with so many autobiographies, while remaining hidden in the background. Such a procedure was, however, not acceptable, neither for me nor for the editor nor for the publisher. From the outset we wanted to avoid the impression that I had written the book alone from beginning to end; 11].

Like Jeanne L. Lee’s account, Helga Rohra’s grew ‘nicht am Stück und auch nicht fortlaufend chronologisch, sondern kapitelweise’ [not in one piece and also not continuously chronological, but in chapters; 12], with the help of ‘Schreibassistenz’ [writing assistance]. But in its expository organisation, her narrative still moves from ‘the earliest symptoms’ (13), ‘the first doctor’s appointment’ (23), to ‘the diagnosis’ (37), and her ‘fight against bureaucracy’ (53). Like Tracy Mobley, whom I quote at the beginning of this chapter, she spells out her frustrations with the bureaucratic and social challenges an early-onset patient is confronted with, namely, her battle ‘nicht nur gegen die Symptome dieser ungewöhnlichen Demenz, sondern auch gegen die Mühlen der Bürokratie, letztlich ein Kampf ums schlichte Überleben’ [not only against the symptoms of this unusual dementia, but also against the grind of bureaucracy, in the end a battle simply for survival; 52]. The condition forces this single mother to give up work, and live on her savings before becoming eligible for social support, and at risk of losing her rented flat. Rohra also finds it difficult to identify a suitable self-help group, because most of them are for caregivers, and the few patient-directed ones are, in view of the condition’s demographics, attended by mostly elderly patients. Most of all, however, Rohra laments that:

In Deutschland [gibt es] noch keine Prominenten, die sich zu ihrer Demenz bekennen und als Botschafter für uns sprechen. Wir bräuchten in Deutschland viel mehr Betroffene, die sich als solche zu erkennen geben. Nur so kann sich das allgemeine Bild von Demenz wandeln.

[In Germany, there are no prominent people, who out themselves as suffering from dementia and, thus, speak for us as our ambassadors. We would need many more individuals with the condition in Germany to show themselves as such. Only in this way can the general image of dementia change; 76].

Rudi Assauer’s narrative appeared one year later.⁴⁵ What could represent the first autobiographical account by a public figure with dementia in Germany, however, reveals itself as a third-person biography of the manager of the Bundesliga football clubs Werder Bremen and Schalke 04. Building on ‘zahlreiche persönliche Gespräche mit Rudi Assauer’ [numerous personal conversations with Rudi Assauer; 11], the journalist-editor Patrick Strasser eventually decides that:

Der Gesundheitszustand von Rudi Assauer hat sich über die letzten Monate hinweg verschlechtert, aus diesem Grund habe ich mich gegen einen durchgehenden Erzählstil in der ‘Ich-Form’ entschieden, da mir eine authentische, detailgetreue Wiedergabe seines Lebens aufgrund seiner Erkrankung an Alzheimer nicht glaubwürdig erschien.

[Rudi Assauer’s state of health deteriorated throughout the last few months, therefore, I decided against a consistent narrative style in the ‘I-form’, as an authentic account, faithful to the detail of his life did not seem believable in view of his Alzheimer’s disease; 11].

As Strasser had previously brought out a biography of FC Bayern Munich’s (at the time) president, Uli Hoeneß, with the same sport- and lifestyle-oriented publisher, it is not surprising that Assauer’s account ends up as a further footballer’s biography. The text is, evoking similarity to an interview situation, interspersed by italicised sections that quote Assauer directly. Reminiscent of Taylor’s strategy, these sections highlight Assauer’s attempts to deflect the serious cognitive implications of his condition, as he mostly refers to his ‘Birne’ [bulb] rather than brain.⁴⁶ All the same, the narrative centrally focuses on the footballer’s career, as only the first and last chapters explore more fully ‘My life with the illness’ (17), and ‘My women, my future’ (229).

However, the footballer started the initiative ‘Demenz und Gesellschaft’ [Dementia and society], which aims at popularising the condition.⁴⁷ Also Rohra continues to be a prominent activist-patient, with media attention to her story and continued activity, ‘as if she had made her dementia her profession’ (106).⁴⁸ Tilman Jens’s two narratives certainly provoked heated discussions, but these debates unavoidably centred on the ethics of patient presentation as such. Rohra’s text, by comparison, directs attention to the patient’s world as well as the need of self-help support to extend continued activity in midlife for as long as possible, while Assauer’s public profile aided his cause.

In this context, it cannot be acknowledged and overemphasised enough that the caregiver is most of the time nursing a patient suffering from late-onset dementia in an elderly patient. In addition, the adult child’s or spouse’s portrayal inevitably reflects the relative’s progressed cognitive impairment and concomitant need for guardianship. This, in turn, is – as to be expected – embedded in the caregivers’ presentation of their own perceived physical and emotional burden. Early-onset dementia and milder cognitive impairment, in contrast, are usually presented by patients in their midlife themselves.

This comparison of accounts relating to (patient-told) early-stage versus (carer-told) late-stage dementia has highlighted that the former point to the patient’s independence, understanding and drive to write and act. Such insights contribute to a less despondent view of dementia in a postmodern society, where new forms of narrative and, indeed, life seemingly become the norm. Like Richard Taylor, whom Helga Rohra had met at a conference, the translator advocates an enabling dementia discourse, and acknowledges ‘her friend Christine Bryden for the good exchange of ideas’ (120). Building on this support, Rohra combines Taylor’s teaching approach with Bryden’s and Couturier’s honesty, to lament that ‘dementia is always considered from its end’ (93). In this respect, Rohra’s account reveals a change in patient discourse and activism. Patients have become more organised in terms of administrative infrastructure, and their writing is increasingly building on the narratives of those who succeeded in blazing a trail for postmodern self-representation.