In 2010 I was invited to present a paper on one of my favourite Spanish female poets, Juana Castro, who was also going to speak at the conference. When I accepted the invitation, I decided to explore her 2005 book of poetry Dark Bodies (Los cuerpos oscuros), which had been awarded the prestigious JaĆ©n Poetry Prize (Premio JaĆ©n de PoesĆa). Dark Bodies is a collection of poems written by Juana Castro during and after the time that she had to look after both of her parents, both living at the same time with Alzheimerās disease. While her 1982 poetry book devoted to the death of her child had had a profound impact on me, the reading of Dark Bodies opened my mind to the world of Alzheimerās disease. The lyricism, beauty, and love encapsulated in these poems did not prevent the soreness of the experience as both daughter and caregiver from emerging, but it was shaped in a way that celebrated life, despite what the title of the book might initially indicate: pain is transformed into beauty.
Prior to reading Castroās book and writing about it (Medina 2012), my relationship with dementia had been merely linked to my role as a reader and viewer of the news. For instance, a few years before I read Castroās book , two important Spanish politicians disclosed that they had been diagnosed with Alzheimerās disease. In 2005, it was announced that Adolfo SuĆ”rez āthe first Prime Minister appointed by the King Juan Carlos I after the dictator Francisco Francoās death in 1975āhad been diagnosed with the disease ; this news was followed in 2007 by the news that Pasqual Maragall , Barcelonaās mayor during the 1992 Olympic Games and later President of the Generalitat de Catalunya, also had Alzheimerās. 1 The very same year in which Maragall gave a press conference to announce that he had been diagnosed with Alzheimerās disease, Adolfo SuĆ”rez received a home visit from King Juan Carlos I of Spain . A photograph taken by SuĆ”rezās son of that encounter was sent to the press as a record of the event. The photograph showed the King and the former Prime Minister walking away from the camera, thus not showing their faces. After the photograph had been widely circulated, Adolfo SuĆ”rez ās son told the press that his father had not recognised the King. This was the last time the former Prime Minister was seen in public . By contrast, Pasqual Maragall ās public announcement served as the starting point of his advocacy and support for, and campaigning on behalf of, the search to find a cure. Even today, almost a decade after being diagnosed, Maragall continues to make some public appearances, clearly demonstrating the need to normalise what it means to live with Alzheimerās disease. The contrast between hiding and displaying what it is to live with Alzheimerās struck me as something which represented two opposite perceptions of Alzheimerās, the private and public: it is seen on the one hand as a stigmatic disease , and on the other as a disease with no cure, that should not be hidden.
In his book of memoirs, My Last Sigh (1983), Luis BuƱuel devoted the first chapter to the effects of ageing in the subject ās memory, the main effect being that of forgetting . Having witnessed his motherās lost battle against forgetting , BuƱuel expresses his anxiety about facing the same health problem.
Iām overwhelmed by anxiety when I canāt remember a recent event, or the name of a person met in recent months, or the name of a familiar object. I feel as if suddenly my whole personality has disintegrated ā¦ The obligation to find a metaphor to describe ātableā is a monstrous feeling, but I console myself that there is something even worseāto be alive and yet not recognize yourself, not know anymore who you areā¦ You have to begin to lose your memory, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all ā¦ Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing. (BuƱuel 2003, 4ā5) 2
BuƱuelās words serve as an excellent example of the fear we have as individuals with regards to losing our memories, and our inclination to associate memory with well-being and being alive. Almost 35 years after BuƱuel published his memoirs, dementia has become a global matter of concern. Dementia is predicted to affect 25ā30% of the over-65s in developed countries by 2050, and it is present in many areas of our society, from family relations to policymaking. The need to address the health and social problems that dementia is creating globally, nationally, and locally appears simultaneously in many different disciplines: medicine, pharmaceutics, biotechnology, social sciences, care practices, health policies , architecture, and culture . For instance, as early as 1994 one could find a description of Alzheimerās as the epidemic of the twenty-first century in the Spanish newspaper El PaĆs (SĆ”nchez 1994). Since then, and during the first decade of this century, not only has the labelling of Alzheimerās disease as an epidemic burgeoned but also new concepts have become attached to it, such as ātsunami ā and āchallenge ā. These labels have been regularly used by the media , national governments, and international institutions , so it is not surprising that they have had a double impact on the public . On the one hand, neo-liberal agendas have been persistently highlighting two āchallengesā for national budgets: that of the ageing population and that of dementia . Having to fund pensions and provide healthcare for a longer period are areas that have created clear divisions between the young and the old, with old age being blamed for the pressure on financial resources to fund welfare systems. On the other hand, the sense of horror associated with dementia that has been introduced to the public through a variety of cultural texts has alarmed and increased anxiety about it in public opinion ; this applies to especially the fear of becoming a zombie, a hollow body (Behuniak 2011; Bitenc 2012; Zeilig 2013). I consider these depictions, which stereotype and dehumanise people living with dementia , to b...