UC Berkeley UC Berkeley Electronic Theses and Dissertations Title Futures of Forgetting: Alzheimer's Disease and the Lively Politics of Anticipation Permalink https://escholarship.org/uc/item/7gk9559c Author Lum, Jennifer Mei Publication Date 2018 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California Futures of Forgetting: Alzheimer’s Disease and the Lively Politics of Anticipation by Jennifer Mei Lum A dissertation submitted in partial satisfaction of the requirements for the degree of Doctor of Philosophy in Rhetoric and the Designated Emphasis in Women, Gender, and Sexuality in the Graduate Division of the University of California, Berkeley Committee in charge: Professor Michael Wintroub, Co-chair Professor Lawrence Cohen, Co-chair Professor Marianne Constable Professor Susan Schweik Spring 2018 1 Abstract Futures of Forgetting: Alzheimer’s Disease and the Lively Politics of Anticipation by Jennifer Mei Lum Doctor of Philosophy in Rhetoric and the Designated Emphasis in Women, Gender, and Sexuality University of California, Berkeley Professors Michael Wintroub and Lawrence Cohen, Co-chairs This dissertation explores how Alzheimer’s disease (AD) has been imagined at the turn of the 21st century in American culture. It asks, more specifically, how AD has become an object of forward-looking thinking, feeling, acting, and organizing within narratives told by different kinds of people, including scientists, pharmaceutical drug marketers, policymakers, writers of popular fiction, and disease activists. I take as a point of departure the concept of a ‘health politics of anguish’, which scholars in the social sciences and humanities have deployed in critiquing the social construction of Alzheimer’s disease as an experience of devastation and loss. These arguments have pointed out the mobilization of such affect by myriad stakeholders in the disease, including scientific researchers seeking to build careers, pharmaceutical companies and the (anti)aging industry at large seeking financial profit, and grassroots coalitions of private citizens channeling their own grief over Alzheimer’s to convince researchers and policymakers of the imperative of developing a drug-based cure. In my analysis, however, I take a different approach, by revisiting the assumption that ‘anguish’ has been the most significant and strategically effective kind of affect to be shored up in relation to Alzheimer’s to begin with. Instead, I engage with other kinds of feelings and expressions about AD that seem to be overflowing within scientific narratives and mainstream media in the early 2000s, such as excitement, promise, and love, and that resonate with the concept of ‘regimes of anticipation’. The latter refers to the forward- looking posture that people assume, particularly regarding issues pertaining to health and medicine, amid conditions of increasing uncertainty. In a more grounded sense, regimes of anticipation refer to the consequences of structural and cultural shifts that have unfolded 2 since the end of the 20th century. These shifts include the (contested) corporatization of biomedical knowledge production, and its financially speculative values and practices; the psychic and material responsibilization of the individual subject as a potential disease sufferer; and the anticipatory kinds of affect that these developments have engendered. Drawing upon tools from the history, anthropology, and cultural studies of science, this dissertation throws into relief the historicity of our thoughts, feelings, actions, and imagination vis- a- vis Alzheimer’s, in finer-grained terms than an emphasis upon the politics of anguish has allowed thus far. I argue that regimes of anticipation have taken shape within the promissory values and practices of scientific community-building, and the public-private partnerships upon which AD research has come to depend; within the biomarkers for AD risk assessment, and the guidelines for recruiting future clinical trial subjects, that researchers have designed; within the speculative meanings assigned to the APOEe4 gene as a marker of higher susceptibility to Alzheimer’s; within advertisements for drug compounds promising to mitigate symptoms of the disease; within the novel, Still Alice, which details a high- functioning academic’s descent into AD at the age of 50 and her attempts to stave off her decline; and within the highly corporatized practices of fundraising activism for AD research at the annual Power of Love Gala in Las Vegas. This anticipatory orientation toward Alzheimer’s, I suggest, illustrates the increasingly tenuous boundaries between living while dying, and dying while living, at the beginning of the 21st century. i Table of Contents Introduction 1 One: From a ‘Critical Mass’ to a ‘Pool of Talent’: How Sharing Became Caring in the Alzheimer’s Research Community, 1980s- Present 17 Two: Slipping into Surplus (Health): Alzheimer’s Risk, Bioavailability, and Productive Uncertainties 43 Three: Speeding with Caution: The APOE Gene and the Anticipatory Frictions of Alzheimer’s Disease Risk Assessment 58 Four: From the Cold War to the Neuropolitical Self: Senility and Alzheimer’s Disease in the Pharmaceutical Imaginary, 1950s to the Early 2000s 84 Five: Alice in a Las Vegas Wonderland: Toward a Political Economy of Love and Alzheimer’s in the Age of Biomedical Reason 106 Concluding Remarks 134 References 139 1 Introduction: From the ‘Politics of Anguish’ to the ‘Power of Love’: Alzheimer’s Disease and the Remaking of Life Itself O n S e p t e m b e r 1 2 , 1 9 8 3 , t h e U S S e n a t e S p e c i a l C o m m i t t e e o n A g i n g c o n v e n e d a h e a r i n g o n A l z h e i m e r ’ s d i s e a s e ( A D ) a t t h e J e w i s h H o m e a n d H o s p i t a l f o r t h e A g e d i n N e w Y o r k C i t y . D u b b e d “ E n d l e s s N i g h t , E n d l e s s M o u r n i n g ” , t h e e v e n t b r o u g h t t o g e t h e r U S C o n g r e s s i o n a l S e n a t o r s , g e r i a t r i c r e s e a r c h e r s a n d c l i n i c i a n s , l e g a l s c h o l a r s , r e p r e s e n t a t i v e s f r o m f a m i l y s u p p o r t g r o u p s , a n d c a r e g i v e r s o f l o v e d o n e s w i t h A D t o d i s c u s s t o p i c s r e l a t e d t o t h e i n c i d T e h n e c e c h a a n i d r m p a r n a c o t f i c t a h l e c c o o n m s m e i q t u t e e n e c , e s o f t h e d i s e a s e . S e n a t o r J o h n H e i n z , w h o h a d w i t n e s s e d h i s m a t e r n a l g r a n d m o t h e r s u f f e r f r o m s y m p t o m s o f d e m e n t i a , p r e f a c e d t h e h e a r i n g w i t h t h e f o l l o w i n g : W e a r e m e e t i n g h e r e t o d a y t o h e a r t e s t i m o n y o n o n e o f t h e m o s t f r i g h t e n i n g i l l n e s s e s t o s t r i k e t h e e l d e r l y , A l z h e i m e r ’ s d i s e a s e . T h i s i n s i d i o u s f o r m o f s e n i l e d e m e n t i a p l a g u e s b e t w e e n 1 a n d 3 m i l l i o n p e r s o n s o v e r 6 5 . B e c a u s e w e k n o w n e i t h e r c a u s e n o r c u r e f o r t h i s h o r r i d c o n d i t i o n , t h e o n s e t o f A l z h e i m e r ’ s b r i n g s i n f i n i t e p a i n t o p a t i e n t s a n d f a m i l y c a r e g i v e r s . F o r t h o s e a f f l i c t e d , l i v i n g w i t h A l z h e i m e r ’ s i s a l o n e l y , i r r e v e r s i b l e p a t h i n t o a n e n d l e s s n i g h t . F o r f a m i l y m e m b e r s , t h i s i r r e v e r s i b l e j o u r n e y m e a n s a s t r u g g l e t o p r o v i d e c o n t i n u o u s e m o t i o n a l s u p p o r t a n d p h y s i c a l c a r e , o f t e n a t g r e a t e x p e n s e . W i t h n o c u r e i n s i g h t , t h e i r y e a r s o 1f p r o v i d i n g c a r e a r e s p e n t i n e n d l e s s m o u r n i n g . P a r t i c i p a n t s a t t h e m e e t i n g d i s c u s s e d s u b j e c t s r a n g i n g f r o m t r e n d s i n b i o m e d i c a l r e s e a r c h , t o e x t a n t p a t i e n t h e a l t h c a r e n e e d s , t h e c o s t o f m e d i c a l i n s u r a n c e f o r l o n g - t e r m c a r e , c a r e g i v e r h e a l t h a n d w e l l b e i n g , a n d f u t u r e s t r a t e g i e s f o r p u b l i c a d v o c a c y . A m o n g t h e m y r i a d i s s u e s r a i s e d , h o w e v e r , o n e i n p a r t i c u l a r w e n t o n t o g a i n a n o t h e r l e v e l o f t r a c t i o n w i t h i n t h e f e d e r a l g o v e r n m e n t . S e n a t o r L a r r y P r e s s l e r , w h o s e f a t h e r h a d s u f f e r e d f r o m t h e d i s e a s e , e m p h a s i z e d t h e i m p o r t a n c e o f i n c r e a s i n g f u n d i n g f o r r e s e a r c h o n a c u r e f o r A l z h e i m e r ’ s : “ I f w e c o u l d f i n d a c u r e o r t r e a t m e n t f o r t h i s d i s e a s e , w e c o u l d s a v e a l o t o f h u m a n a n g u i s h , a n d s a v e a l o t o f m o n e y , a t a t i m e w h e n w e h a v e a 2 0 0 b i l l i o n d o l l a r d e f i c i t ( B a l l e n g e r 2 0 0 6 , 1 2 4 - 5 ) . ” P r e s s l e r ’ s i n s i s t e n c e , c o m b i n e d w i t h t h a t o f o t h e r s , f o u n d a r e c e p t i v e a u d i e n c e i n C o n g r e s s , a n d i n t h e y e a r s t o c o m e , f e d e r a l s u p p o r t b u r g e o n e d f o r b i o m e d i c a l r e s e a r c h t o d e v e l o p a c u r e f o r A D ( B a l l e n g e r 2 0 0 6 , 1 2 5 - 3 0 ) . M o r e b r o a d l y , t h e e v e n t a d v a n c e d a p a t t e r n o f s o c i a l a n d i n s t i t u t i o n a l d e v e l o p m e n t s , w h i c h s h a p e d A l z h e i m e r ’ s i n t o a n o b j e c t o f i n t r i g u e a n d i n v e s t m e n t o n a n a t i o n a l s c a l e , a n d g a i n e d m o m e n t u m b e t w e e n t h e m i d - 1 9 7 0 s a n d ‘ 8 0 s . T h e N a t i o n a l I n s t i t u t e o n A g i n g ( N I A ) h a d b e e n f o u n d e d i n 1 9 7 4 , a n d e s t a b l i s h e d A D a s i t s p r i m a r y f o c u s . T h e A l z h e i m e r ’ s D i s e a s e a n d R e l a t e d D i s o r d e r s A s s o c i a t i o n ( A D R D A ) m a t e r i a l i z e d i n 1 9 7 9 , a s a c o a l i t i o n o f g r a s s r o o t s a c t i v i s t s , a n d r e s e a r c h e r s a f f i l i a t e d w i t h v a r i o u s b r a n c h e s o f t h e N a t i o n a l I n s t i t u t e s o f H e a t h , t o l o b b y C o n g r e s s f o r f e d e r a l s u p p o r t . A c o u p l e o f m o n t h s a f t e r t h e “ E n d l e s s N i g h t , E n d l e s s M o u r n i n g ” m e e t i n g , i n a g e s t u r e a p p r o v e d b y P r e s i d e n t R o n a l d R e a g a n , t h e U S H o u s e o f R e p r e s e n t a t i v e s p a s s e d a r e s o l u t i o n d e c l a r i n g N o v e m b e r o f 1 9 8 3 t o b e N a t i o n a l 2 Alzheimer’s Disease Month, a date that marked an increase in federal funding for AD research of more than 10 times (from 1 to 11 million dollars) since the founding of the NIA (Ballenger 2006, 117). In 1984, the NIA began funding a network of Alzheimer’s Disease Centers at flagship medical institutions across the country, establishing an infrastructure for research, diagnosis, and treatment.2 In 1986, Congress authorized the director of the NIA to designate funds for AD-related research, as the first disease- specific mandate in public health law.3 For the NIA’s inaugural director, the psychiatrist and gerontologist Robert Butler, the Institute’s focus on AD was critical to securing federal funding for its nascent research programs. Reflecting upon this strategy, he stated: “I decided we had to make it [Alzheimer’s disease] a household word. And the reason I felt that, is that’s how the pieces get identified as a national priority. And I call it the ‘health politics of anguish (Fox 1989, 82).’” Moreover, as an expression of such a politics of anguish, the theme of “endless night, endless mourning” resonated well beyond the limits of the meeting coordinated by the Senate Special Committee on Aging in 1983, as Alzheimer’s took shape within the cultural imaginary as an experience of tragedy, loneliness, and loss. One of the most pivotal developments in the health politics of anguish took place in 1976, when the neurologist Robert Katzman published an editorial in the American Medical Association’s Archives of Neurology, circumscribing AD as a “major killer”, and as possibly being the fourth or fifth leading cause of death in the United States (Katzman 1976). In their testimonies before Congress, legislators, researchers, caregivers, and other proponents for increased awareness of AD reiterated the themes of mourning, and death-before-actual-death that the disease imposed upon its victims. For example, Bobbi Glaze, a founding member of the ADRDA, shared her experience of caring for her disease-stricken husband as being “like a funeral that never ends”, which became common in representations of AD (Ballenger 2006, 137). For its part, the ADRDA printed and distributed posters, magazines, and newspaper advertisements that characterized the AD victim as “getting further away”, through a series of progressively fading black- and- white photographs (Ibid). In addition, through its theme song, the ADRDA characterized Alzheimer’s as “a long goodbye”, a metaphor that has continued to circulate within mainstream media, particularly in coverage of the death of Ronald Reagan due to symptoms of Alzheimer’s, and the aftermath of his passing (Davis 2004). Popular self-help books, such as The 36- Hour Day (Mace and Rabins 1984) and The Loss of Self (Cohen and Eisdorfer 1986), addressed the families of those diagnosed with Alzheimer’s, providing techniques of care for the afflicted, and for the caregivers themselves. In response to the gravity that AD has accumulated within legislative, institutional, social, and cultural discourses and practices since the mid-1970s, scholarship in the social sciences and humanities has critiqued the rhetorical and structural operations of a health politics of anguish. Social constructivist approaches have problematized the biomedicalization of Alzheimer’s that such a politics has engendered, from multiple angles. Some argue, for example, that although the politics of anguish positively challenged the notion that senile dementia was an inevitable hallmark of the aging process, biomedical models of AD have obfuscated the social and environmental factors involved in dementia, and have legitimated medical control over vulnerable subjects (Fox 1989; Lyman 1989). 3 Others have pointed out that federal and private investments in biomedical research into AD have taken precedence over investments in social services. These scholars warn that collective preoccupation with developing a ‘magic bullet’-type cure for AD has gone hand- in-hand with the erosion of infrastructures of caregiving support for those impacted by the disease (Ballenger 2006, 118-36; Estes and Binney 1991; Whitehouse and George 2008). Yet others maintain that the relentless pursuit of biomedical technologies for managing symptoms of AD has created an empire of profit for many stakeholders, including but not limited to scientific researchers, pharmaceutical corporations, and media conglomerates that proliferate narratives of Alzheimer’s as an experience of anguish and loss (Estes 1979; Robertson 1990). Although my dissertation also explores the co-constitutive relationships between knowledge and affect, my approach differs from those described above. In what follows, I examine the contingencies of Alzheimer’s and its affective purchase in greater depth, by assuming a finer-grained approach to the phenomenon of affect, in and of itself. Instead of asking how notions and feelings of anguish have been mobilized by various stakeholders vis- a- vis AD, I reconsider the premise that anguish has been the most significant and strategically productive kind of affect shored up in relation to the disease to begin with. I ask, moreover, what other kinds of gut-level sensations have been associated with Alzheimer’s disease. What kinds of meanings have these forms of affect taken on, and what kinds of actions have they compelled? More importantly, I ask, why does this matter? How might one account, in a broader sense, for the epistemic and cultural politics in which different kinds of feelings about AD have been animated at the turn of the 21st century? Alzheimer’s Disease and the Politics of Anticipation T o b e g i n t o a d d r e s s t h e s e q u e s t i o n s , I t u r n t o a l e t t e r t h a t f o r m e r U S P r e s i d e n t R o n a l d R e a g a n p u b l i s h e d t o t h e A m e r i c a n p e o p l e i n N o v e m b e r o f 1 9 9 4 , d i s c l o s i n g h i s d i a g n o s i s w i t h A l z h e i m e r ’ s d i s e a s e . H e w r o t e : M y f e l l o w A m e r i c a n s , I h a v e r e c e n t l y b e e n t o l d t h a t I a m o n e o f t h e m i l l i o n s o f A m e r i c a n s w h o w i l l b e a f f l i c t e d w i t h A l z h e i m e r ' s d i s e a s e . U p o n l e a r n i n g t h i s n e w s , N a n c y a n d I h a d t o d e c i d e w h e t h e r a s p r i v a t e c i t i z e n s w e w o u l d k e e p t h i s a p r i v a t e m a t t e r o r w h e t h e r w e w o u l d m a k e t h i s n e w s k n o w n i n a p u b l i c w a y . I n t h e p a s t , N a n c y s u f f e r e d f r o m b r e a s t c a n c e r a n d I h a d c a n c e r s u r g e r i e s . W e f o u n d t h r o u g h o u r o p e n d i s c l o s u r e s w e w e r e a b l e t o r a i s e p u b l i c a w a r e n e s s . W e w e r e h a p p y t h a t a s a r e s u l t m a n y m o r e p e o p l e u n d e r w e n t t e s t i n g . T h e y w e r e t r e a t e d i n e a r l y s t a g e s a n d a b l e t o r e t u r n t o n o r m a l , h e a l t h y l i v e s . 4 So now we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clear understanding of the individuals and families who are affected by it. At the moment, I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters. Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes, I am confident that with your help she will face it with faith and courage. In closing, let me thank you, the American people, for giving me the great honor of allowing me to serve as your president. When the Lord calls me home, whenever that may be, I will leave the greatest love for this country of ours and eternal optimism for its future. I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead. Thank you, my friends. Sincerely, Ronald Reagan4 I n 1 9 9 5 , f o l l o w i n g t h e f o r m e r p r e s i d e n t ’ s d i s c l o s u r e , t h e R e a g a n s f o u n d e d t h e R o n a l d a n d N a n c y R e a g a n R e s e a r c h I n s t i t u t e t h r o u g h t h e C h i c a g o b r a n c h o f t h e A l z h e i m e r ' s A s s o c i a t i o n . I n c o n c e r t w i t h t h e N a t i o n a l I n s t i t u t e o n A g i n g , t h e R e a g a n I n s t i t u t e ’ s p r o m o t e d r e s e a r c h s e e k i n g t o c u r e , d e l a y , a n d e v e n t u a l l y p r e v e n t t h e d i s e a s e ( K h a c h a t u r i a n a n d R a d e b a u g h 1 9 9 6 ) . T h e I n s t i t u t e ’ s o p e r a t i o n s w e r e d i v i d e d i n t o t w o m a i n p r o g r a m s . T h e f i r s t p r o g r a m f o c u s e d o n d r u g d e v e l o p m e n t , b y o r g a n i z i n g w o r k i n g g r o u p s t o i n v e s t i g a t e n e w m o l e c u l e s , n e w t a r g e t s f o r t r e a t m e n t , a n d p r o b l e m s r e l a t e d t o d r u g t a r g e t i n g a n d d e l i v e r y s y s t e m s . I t a l s o , h o w e v e r , c o n c e n t r a t e d i t s r e s o u r c e s o n i d e n t i f y i n g a r a n g e o f g e n e t i c a n d e p i g e n e t i c r i s k f a c t o r s f o r A l z h e i m e r ’ s . I n d o i n g s o , t h e p r o g r a m m o v e d a w a y f r o m t h e e x c l u s i v e g o a l o f d e v e l o p i n g a ‘ c u r e - a l l ’ d r u g c o m p o u n d , a n d i n s t e a d f o c u s e d o n e a r l y d i a g n o s i s a n d p r e v e n t i o n a t t h e m o l e c u l a r l e v e l . T h e I n s t i t u t e ’ s s e c o n d m a i n p r o g r a m f o c u s e d o n p r o m o t i n g t e c h n o l o g y t r a n s f e r , b y f o s t e r i n g p a r t n e r s h i p s b e t w e e n a c a d e m i c , p r e - c l i n i c a l i n v e s t i g a t o r s o n t h e o n e h a n d , a n d t h o s e b a s e d i n i n d u s t r y , o n t h e o t h e r , i n o r d e r t o a c c e l e r a t e t h e t r a n s f e r o f k n o w l e d g e a n d t e c h n o l o g i e s d e r i v e d f r o m b a s i c s c i e n c e l a b s , t o d o w n s t r e a m s i t e s o f p r o d u c t - d e v e l o p m e n t ( K h a c h a t u r i a n a n d R a d e b a u g h 1 9 9 6 , 5 9 3 ) . B y f o c u s i n g o n t h e g o a l o f m a r k e t - f r i e n d l y p r o d u c t d e v e l o p m e n t , t h e I n s t i t u t e