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The attitude towards Alzheimer’s needs to change

 Mistaken: A still from the film ‘Still Alice’.

Mistaken: A still from the film ‘Still Alice’.

In a scene in the novel Still Alice, Dr. Alice Howland, a 50-old Harvard professor afflicted with Alzheimer’s disease, asks a poignant question: what restrains us from accepting and helping Alzheimer’s patients just the way we would try to help someone who has suffered, say, a stroke? “I encourage you to empower us, not limit us. Work with us. Help us to function around our losses in memory, language, and cognition.” She reminds us that Alzheimer’s sufferers are more just than their functional incapacities and forgetfulness. Still Alice , written by the neuroscientist, Lisa Genova, went a long way in changing the way Alzheimer’s is explained and represented.

A progressive neurodegenerative condition that thwarts our reasoning, memory and linguistic abilities, Alzheimer’s disease still remains a puzzle decades after it was first identified in 1906 by Alois Alzheimer as an “unusual disease of the cerebral cortex”. Although PET scans and various memory and cognitive tests can bring a kind of clarity, there is much which is still unknown about the disease. Yet some 46 million people across the world are currently living with Alzheimer’s or dementia. The number is expected to treble by 2050 as the population ages.

Lost selves?

Without sufficient awareness, Alzheimer’s is often interpreted as madness. If Alzheimer’s sufferers are not straightaway depicted as the living-dead in movies and popular literature, they are often shown as being insane, a stuff of comedy. Works such as Death in Slow Motion: A Memoir of a Daughter, Her Mother, and the Beast called Alzheimer’s by Eleanor Cooney, Robert T. Woods’ Alzheimer’s Disease: Coping with a Living Death or Thomas DeBaggio’s Losing My Mind: An Intimate Look at Life with Alzheimer’s deliberately or inadvertently perpetuated wrong ideas about Alzheimer’s. Movies such as George Romero’s Night of the Living Dead and Francis Coppola’s Dementia 13, which popularised zombies, were later used as a handy guide to Alzheimer’s. The common phrases associated with the condition — ‘the silent plague,’ ‘mind robber,’ ‘a brain in the jar,’ ‘lost selves,’ ‘socially dead’ — are a comment on the way the disease is viewed even today.

Fortunately, this is changing somewhat, thanks to cultural activism, personhood movements and research advancements. A commendable step was taken by the American Psychological Association when dementia was renamed as a major neurocognitive disorder in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — this helped a lot in scaling down the general panic around Alzheimer’s and dementia.

Writers and artists are also peering into Alzheimer’s obscure spaces like never before. While classics such as John Bayley’s memoir, Elegy for Iris helpedcreate empathy and sensitivity around Alzheimer’s, newer works in emerging genres show affirmation and urgency. Dana Walrath’s 2013 graphic narrative, Aliceheimer’s: Alzheimer’s Through the Looking Glass, reconfigures Alzheimer’s as a magical and healing state of being. Neurologist Gayatri Devi’s The Spectrum of Hope redefines Alzheimer’s as just another spectrum disorder like autism. Documentaries such as Alive Inside: A Story of Music and Memory or The Unspooling Mind bring realism and relief. Judith Fox’s I Still Do: Loving and Living with Alzheimer’s weavesintimate photographs with poetic writing to offer an encouraging glimpse into the life of her Alzheimer’s afflicted surgeon husband.

Hannah Peel uses music to bring alive her dementia afflicted grandmother in her album ‘Awake But Always Dreaming’. Comics also cut through the ignorance around Alzheimer’s and humanises it — Paco Roca’s Wrinkles, Sarah Leavitt’s Tangles , Sharon Rosenzweig’s Mom’s Flock: Renegade Hens in Highland Park , Stu Campbell’s These Memories Won’t Last, an interactive webcomic, bring home the realities of Alzheimer’s.

Purple badges

While Indian movies such as Thanmathra (Malayalam) ,Maine Gandhi Ko Nahin Mara , Black and Mai (Hindi) , Astu (Marathi) , O Kadhal Kanmani (Tamil) treat dementia-related conditions with sensitivity, they also tend to give medically inaccurate information. Books on Alzheimer’s are rare too: D.P. Sabharwal’s Handling Alzheimer’s with Courage , about his experience of looking after his wife, who had Alzheimer’s, Ranabir Samaddar’s Krishna: Living with Alzheimer’s , or S.P. Bhattacharjya’s In the line of Alzheimer’s: The Mission Continues are a handful that deal with the subject .

Celebrated as World Alzheimer’s month, September is a reminder that Alzheimer’s patients are more than a bundle of amyloid plaques. Encouragingly, there are now purple badges for spreading sensitivity, purple marathons, dementia-walks, promise gardens, memory cafés, and dementia-friendly cities. The Restaurant of Order Mistakes in Tokyo only employs people with dementia; the ‘House of Memories’ in the Denmark museum Den Gamle By (The Old Town) recreates the 1950s for patients.

With no permanent cure yet in sight, let us take solace in Stephen Hawking’s words: “However bad life may seem, there is always something you can do and succeed at. Where there’s life, there’s hope.”

The authors specialise in health humanities and are affiliated to the National Institute of Technology, Trichy.


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Printable version | Oct 7, 2022 2:47:41 pm | https://www.thehindu.com/books/the-attitude-towards-alzheimers-needs-to-change/article24945122.ece