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Dementia

Book Review: Aliceheimer’s

5 Oct, 16 | by cquigley

978-0-271-07468-9lg

 

Aliceheimer’s. Alzheimer’s Through the Looking Glass

By Dana Walrath. Published by The Pennsylvania State University Press, 2016.

 

Reviewed by Dr Martina Zimmermann.

 

Dana Walrath’s Aliceheimer’s. Alzheimer’s Through the Looking Glass is the second graphic memoir by an adult child about her mother’s Alzheimer’s disease, after Sarah Leavitt’s Tangle. A Story About Alzheimer’s, My Mother, and Me (2012); a further contribution to the steadily growing body of dementia caregiver life-writing. The best-known representative of this body is surely John Bayley’s Iris: A Memoir of Iris Murdoch (1998) – given the account’s prominent filmic adaptation, its unceasing consideration in literary scholarship, its persistent presence in the lecture theatre and seminar room, and the countless citations other caregivers take from this text. For these caregivers, Bayley’s narrative has provided inspiration, and at times moral justification – especially for how they tell about the patient’s loss of self. Walrath foregoes reference to the experiences of other caregivers. Instead, she connects her account to Lewis Carroll’s Alice’s Adventures in Wonderland (1865) and Through the Looking Glass (1871). Allusion to Alice’s Adventures in caregiver narratives is not new: Cécile Huguenin made the connection in Alzheimer mon amour [Alzheimer my love] (2011) and Sally Magnusson in Where Memories Go. Why Dementia Changes Everything (2014). Both wife and daughter refer to being lost in an environment that resembles Carroll’s nonsense world, exposed to the nonsensical organisation of caregiving and lacking support from practicing clinicians. Walrath, however, maps her narrative onto Carroll’s story to depict the condition itself. In doing so, she offers an unexpected perspective on Alzheimer’s disease; she seemingly creates a new condition: Aliceheimer’s. Concurrently, Aliceheimer’s acknowledges that Alzheimer’s disease creates a new person, indelibly linked to the Alzheimer’s disease experience. Alice is no longer “her old self” – a “proud, hardworking career woman [who] had done all the cooking and cleaning for her family of five, without any outside help” (11). Having fallen down the rabbit hole, she now is “her new self” (27): Aliceheimer.

A pronounced feature of Alice’s dementia is disease-related hallucinations and fears, and Walrath dedicates a large part of her account to this aspect of her mother’s illness experience. This choice of presentation makes Walrath’s narrative unique. In fact, affective symptomatology, that is auditory hallucinations as well as ideas of jealousy, had been described by Alois Alzheimer in the landmark case of Auguste Deter in 1906. However, cognitive and histopathological features took priority in medico-scientific and healthcare descriptions of dementia patients in the first half of the twentieth century and beyond. And while the patient’s mind and psyche entered the literary arena much earlier and more explicitly (since the 1920s) as compared to when and how old-age psychiatrists and social medics began to take an interest in this area, they continue to remain absent from most caregiver accounts. Walrath describes some of her mother’s hallucinations, but more importantly, she gives them new meaning, depicting them as Alice’s space time travel and a special power (37). What happens under the spell of Alzheimer’s disease happens in wonderland. Mapping her mother’s experiences onto the adventures of Carroll’s character is a gambit that enables the caregiver to counter-narrate the patient’s social death and loss of self in a culture “where death is taboo, and aging is not celebrated” (47).

Walrath confirms what anthropologist Janelle Taylor explored in her prize-winning essay “On Recognition, Caring, and Dementia” (2008), namely that recognition is considered to be the “public threshold” (69). Specifically, the first thing Walrath is asked when her interlocutor learns that Alice has been placed in a nursing home is: “does she still recognize you?” (69) An anthropologist herself, Walrath asserts that “more than recognition of individuals and their social roles, it is recognition of intention and behavior that matters” (69). This insight is core to Walrath’s caregiving practice, as she assigns intention to Alice’s hallucination-caused behaviour – a strategy also pursued by Reeve Lindbergh in No More Words. A Journal of My Mother, Anne Morrow Lindbergh (2001). Lindbergh’s literary account of her mother’s dementia features among those we perceive of as particularly enabling because it seeks to identify the patient’s continued identity and self within dementia. Similarly, Walrath concedes that “there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers – useful, true humans who contribute to our collective good, instead of scary zombies.” (4) This approach echoes that of other caregivers, like Arno Geiger in Der alte König in seinem Exil [The old king in his exile] (2011), Ruth Schäubli-Meyer in Alzheimer. Wie will ich noch leben – wie sterben [Alzheimer’s. How will I continue to live – how will I die?] (2010) or Cécile Huguenin, who depict their parent or partner as teachers. But in comparison to these caregivers Walrath does not give her mother her own narrative space. Aliceheimer’s remains Walrath’s account. And as such it reveals that a balance between continuity of identity for the patient as parent and continuity for the caregiver as child is not easily found – neither in the illness experience itself nor in an account thereof.

Walrath writes beautifully about how she creates continuity within and for her mother’s behaviour, how she discovers gain within loss. But we are only told about the “more benign hallucinations” (5) relating for example to the patient’s sundowning (35), not the difficult ones. We read about Alzheimer’s disease as “a time of healing and magic.” (4) But we are not told about the profound challenges of dementia caregiving. We gain such information only from the acknowledgements, where Walrath concedes that “[c]aring for Alice required a community […that] gave Alice space to be herself and to grow even through loss.” (71) Where are the caregiver burden and identity crisis of the child in this narrative? Are these challenges not explored in more detail, because we are expected to fill them in from our knowledge of the mainstream dementia narrative? I believe that the key to these questions is found in the narrative’s collage technique.

There is a clear compositional strategy in Aliceheimer’s: on the left the patchwork image of pages cut from Carroll’s text incorporated into Walrath’s own drawings and colouring; on the right Walrath’s written account in one-page long snippets and impressions. In a first instance, this arrangement gives the disease-inflicted, hallucination-provoked chaos a systematic structure. But more importantly, it enables Walrath to tell two different stories. The author encourages us to “[p]age through to feel the storyline as it exists in the drawings on their own” (5). But the collage depicts a truth on which the textual narrative – effectively like every Alzheimer’s disease memoir – remains silent: the patient’s complete disintegration and dissolution. The collage arrangement leaves space for the onlooker to imagine the full truth conveyed in Aliceheimer’s. In the end, Aliceheimer’s is Alzheimer’s: a disease of relentless loss and decline.

aliceslide1

Roughly a third of the account covers the time from when Alice is placed in what Walrath terms “memory care”. From the time of Alice’s placement the pictorial narrative tells an explicit story of decline, regression and involution, of what Walrath only once spells out in writing, namely that “with each passing day, Alice was becoming developmentally younger” (61). The collage images show Alice as a young bride, a school girl, in her babyhood; Alice’s eventual bodily and mental disintegration become clear from images depicting Alice in the immediate post-fertilisation phase with the zygote (a spiral cut from a page of Carroll’s text) surrounded by sperm cells (64), and another image reducing Alice to mere DNA (the cut-out text from Carroll’s narrative that links the molecule’s two strands together featuring key characters in Alice’s adventures [66]). Instead of telling about Alice’s disintegration in the nursing home in her written account on the right, Walrath now takes to peering through the looking glass in yet another way. She sets out to explore Alice’s past and describes her personality in the past. With this account, she can place the “old” Alice before the increasingly disintegrating Aliceheimer. Not only do photographs of the young Alice begin to replace Walrath’s drawn image of her mother. In this final third, some chapters extend over more than one page, indicating that the caregiver needs to tell more of the story than the image alone can or should tell. Where the narrative snippet spreads onto the next page, the accompanying image is repeated in magnified form, suggesting that eventually the caregiver’s story must replace the patient’s world. Walrath, indeed, depicts her mother as increasingly transparent early on (10-15) and – like other caregivers such as Elena De Dionigi in Prima di volare via. Quello che l’Alzheimer non ci può rubare [Before flying away. What Alzheimer’s cannot steal from us] (2012) – as flying away (18-22).

aliceslide2

Aliceheimer’s remains Walrath’s account also for the fact that it creates continuity for the daughter that reaches beyond her professional interests. In the first place, it tries to give meaning to the caregiving process, as the daughter now has to mother the mother, or as Walrath – mother of three boys herself – puts it: “I had always wanted a daughter” (57). Equally, Walrath describes the period of caregiving as a time when she “wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me” (1). And as such, Aliceheimer’s also remains Walrath’s account when the narrative turns into the daughter’s search for the mother’s past as the story of her own origin; a past that will be forgotten with Alice’s memory loss; a past that harbours Alice’s as much as her daughter’s identity as Armenian. In this regard, Walrath’s narrative fits into the tradition of adult-child caregiver narratives that arose during the 1990s’ memory boom; narratives about a parent’s dementia whose forgetting becomes linked to the danger of an entire generation’s loss of collective memory about the trauma and fate of the Jewish people – if we think about Linda Grant’s Remind Me Who I Am, Again (1998) or Lisa Appignanesi’s Losing the Dead (1999). Like many caregivers before her Walrath becomes the “archivist”, not only of the mother’s memories, but an entire people’s history: she travels to Armenia to “make the missing pieces of our past into more than ideas” (61).

Peter Keating has described Carroll’s Alice as having “pioneered the new mood of freedom and exploratory play in children’s books”. Walrath’s narrative could be read as representing a new mood of freedom in how to deal with Alzheimer’s disease. It is a narrative about Alice’s different identities, views and truths of the world; a narrative showing that “[c]onflicting realities can coexist in a single image just as they do for people with dementia and their caregivers” (5). Walrath asserts that her mother “escapes the captivity of Alzheimer’s through story” (29). Also Walrath herself escapes the captivity of Alzheimer’s through story: the captivity of the medico-scientific and wider cultural narrative of decline, diminishment and loss. To my mind, Walrath’s reference to Carroll’s “Lobster Quadrille” (47) is most revealing. In this adventure, Carroll’s protagonist offers to tell her experiences on condition of not “going back to yesterday, because I was a different person then”. Living well with the patient comes down to living in the present moment – living within the world and experience of Aliceheimer. When this is not possible any longer, Walrath’s memory of her mother’s old self, Alice, will come to replace both Alice’s memory and Aliceheimer herself.

If this is the first Alzheimer’s disease narrative you pick up you will come away with the feeling of having read a kind of fairy story – about Alzheimer’s through the looking glass. If you read it against the last decade’s caregiver life-writing, you will see it fitting into how adult children increasingly assert their parent’s continued identity and self within dementia. Reading it in the context of nearly thirty years of Alzheimer’s disease life-writing, Aliceheimer’s appears original in its collage approach, and buoyant in its message of how to “bring back the humanity of a person with dementia” (5). But it also matches what has developed into a kind of prototype caregiver dementia narrative. It tells of biographical disruption; searches for continuity for both parent and child; aims at preserving collective memory; presents – as John Wiltshire has discussed in relation to John Bayley’s memoir – “the issues of identity which are implicit in all illness experience with particular acuteness”. Aliceheimer’s is a story about the possibility to find quality of life in dementia caregiving; the possibility to see Alzheimer’s disease as creating a new self, a self that can be lived with and written about up to the moment when we feel threatened in our own self.

 

 

The final review in this series – Alzheimer’s disease and graphic memoirs – will be Sarah Leavitt’s Tangles.

The first in the series – Alex Demetris’s Dad’s Not There Anymore – was posted here.

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185.

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107.

 

Book Review: Dad’s Not All There Anymore

26 Sep, 16 | by cquigley

 

This is the first of a series of comic book reviews on the theme of Dementia. Reviews of Sarah Leavitt’s Tangles and Dana Walrath’s Aliceheimer’s to follow.

 

Demetris Cover

 

Dad’s Not All There Anymore by Alex Demetris

 

Reviewed by Harriet Earle

 

As an academic, I have a love-hate relationship with Wikipedia. I tell my students to steer well clear and never to rely on it for anything but the most cursory glances at a subject. However, I will admit that I use it regularly (and, in the website’s defence, the references can often be very helpful). There is absolutely a place in academia – and in life – for Wikipedia’s accessible and easy synopses. It is likely that, were I to require information on Lewy Body Dementia (LBD), I would soon be typing it into my phone’s app. However, one central thing that is missing from Wikipedia is heart. An encyclopaedia is not meant to be an emotional and emotive document; it’s aim is to inform, not to evoke emotion. However, when one is talking about many topics, such as LBD, the basic definition (or even an exhaustive medical definition) does not give any space to the consideration of the experience of the condition.

This is where Alex Demetris’ comic Dad’s Not All There Anymore comes in. Demetris illustrates his father’s diagnosis and eventual move to a nursing home. Demetris’ book is devastating and heart-warming. He tells the story through the figure of John. When the narrative opens, we are visiting John’s father, Pete, in a nursing home. John speaks gently to two other elderly residents, one of whom is supine on the floor, before meeting his mother, Sue, in his father’s room. The chronology of Pete’s illness is told in flashback; we follow him from diagnosis with Parkinson’s in 2003, to the diagnosis of Lewy Body Dementia in 2007 and the progression of the illness until John barely recognises his father. The personal story is interspersed with carefully worded explanations of the condition, its genesis and development that are pitched perfectly for readers who are not medics. This is the true success of this comic – that Demetris is able to create a work in which his father’s unique story and the more generic definitions of LBD sit in conversation with each other. We are in no doubt that this is a personal story and that it is the individual nuanced experience of the disease that is the focus, while the medical information exists within the text as an informative touchstone for the non-medic reader.

Demetris’ artwork is both expressive and simple. Plain line drawings with very little excess details are highlighted by shades of yellow-green. In places, there is a flash of red. When Pete starts to hallucinate a small red-haired child, she lurks as a faded red and creepily expressionless figure; she is almost a ghost. In another instance, Pete asks John what he sees in the corner. John sees a rack of coats; Pete sees the bright, terrifying face of a clown, to the horror of the clown-phobic John. In curious contrast to the muted and gentle colouration, the panels themselves are crowded. Each page contains at least 6 closely-packed panels, each one filled with a bustling image, topped with a caption or bubble or both. There is a lot to take in – both image and text – and at times the effect can be overwhelming. Where to look? What to read first? I would not wish to suggest that that chaos engendered by the reading experience can come close to mimicking the full horror and disorientation of LBD but it may go some way to mimicking the mental upheaval of supporting a family member.

All comics artists have a style and in that style is a peculiar ‘something’ that stands out. For Demetris, it is his exquisite use of eyebrows to create expression. In my own research, I have written about the importance of the eye as a frame to govern the emotion of the face within the panel. Demetris’ characters have no eyes, only small representative dots, and so it is for the eyebrows to do the talking. It is impossible to overstate how expressive Demetris’ characters are, a feat that is particularly impressive, given the limited use of detail in their faces. In the visually congested panels, the clearly rendered eyebrows on each face guide the narrative and emphasise the humanity of the characters, in moments of both comedy and tragedy.

Ask most people to name something that terrifies them and they are likely to rank dementia high on that list. I imagine that watching a loved one battle with dementia is equally terrifying. In the carefully rendered faces of John and Sue, there is immeasurable warmth. Indeed, one of the most striking features of the plot of this comic is the seemingly unwavering devotion of both characters to Pete and their tremendous patience with him as the disease progresses. It is one thing to say of a sick family member “he doesn’t mean to be trying, he’s not well – I will not hold it against him” and quite another to live these words and embody them. Demetris is not telling just any story of LBD, he’s telling his father’s story. The personal nuances of the story are the central focus of the narrative and the most compelling part of it. Pete was a teacher and regularly admonished his son for using the word ‘innit’ (“Don’t say ‘innit’ – it’s bad English”). At the book’s close, there is a final glimpse of the old Pete and his grammar policing ways (“… shouldn’t say ‘innit’… bad English…”). LBD may have him on his knees but he is still there and it is to this that his family cling. This is the heart; this is what moves this text beyond the crisp, cold definitions offered by Wikipedia and other encyclopaediæ. Instead of receiving the bare facts, the reader receives an insight into the day-to-day experience of the disease and the ravages it brings to bear on the individual and those around them. Demetris has etched out a fine line between text book and autobiography and is walking it with skill, panache and immense heart.

 

Dad’s Not All There Anymore by Alex Demetris is available from Singing Dragon Publishers.

ISBN: 978-1-84905-709-7

Price: £7.99

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107

The Reading Room: Jenny Downham’s ‘Unbecoming’

17 Feb, 16 | by cquigley

 

Unbecoming by Jenny Downham.

Published by David Fickling Books, 2015.

 

Reviewed by Katie Hodgkinson, Medical Student

 

Unbecoming jacketfront

They say don’t judge a book by its cover, but the cover of Unbecoming is beautiful, and the story inside even more so. I’m generally a bit wary of Jenny Downham as an author because I did not enjoy Before I Die, and when I read the blurb for her most recent work, I wasn’t intrigued. It sounded very stereotypical, and to be honest, just like every other young adult book out there.

How wrong I was.

Unbecoming is a long, thoughtful book that covers three family stories, giving us three beautifully explained situations. The power behind such wonderful writing will make you think and question whether you’ve really determined the extraordinary richness behind the lives of people you might generally consider entirely average.

The book follows the story of three characters: Katie, who’s struggling with her sexuality, her mum Caroline, who’s struggling with just about everything, and Katie’s grandmother Mary, who has Alzheimer’s and who has just lost her long term partner. Unlike most young adult books, Unbecoming contains an LGBT character without the need for the book to be entirely devoted to the issues of LGBT acceptance and romance. I thought Mary’s story in particular was very well crafted and it formed the bulk of why I liked Unbecoming so much. The book explains the thoughts and feelings of someone with progressive memory loss very effectively, and for this reason I’d say that this book (or at least Mary’s parts) is a must read for anyone working with the elderly.

At the start of the book, Katie and Caroline barely know anything about Mary. We begin at the same point that many doctors might do – seeing the grandmother as someone in need of care, but for whom we have no particular attachment. Mary is sent home with Caroline and Katie to a world unfamiliar to her.  As the story develops we learn more and more about Mary – how she struggled to raise Caroline, how her relationship with her sister and father shaped her, and how all of this affects how she interacts with Katie. There are a lot of difficult topics involved, yet this remains an optimistic book.

At the beginning I thought that this was going to be a very long and tedious read about some very commonplace issues. Katie starts off by talking about her life and it all sounds very much like a whiny blog post from a teenager about how hard her life was – but then a rich tapestry evolves. When you meet someone you just don’t consider the ways that his/her life might interlink with those around them. This book demonstrates just how wrong such thinking can be. I’ve never read anything that works so well in support of holistic care – although there are several problems that could be solved so easily, in context some solutions make no sense at all. You question the hospital’s decision to send Mary home to a daughter she’s never known, and who has no idea how to cope with her mother. You wonder why on earth social services are so unhelpful to a family already struggling. The expectations placed on these three women by society are woven in and together seamlessly, showing you just how flawed these expectations can be, especially when created by those who have no understanding of what the lives and challenges of those outwardly viewed as ‘normal’ might be.

Unlike most young adult books, the focus here is firmly placed on family relationships. Yes, there is romance in Katie’s developing liaisons, but love doesn’t in the end conquer all. It also isn’t a typical ‘issue’ book that focuses exclusively on sexuality or dementia or learning difficulties or depression – it just presents the problems as part of everyday life, which makes them much more realistic. There was a real sense of the characters having a whole life, rather than the book merely showing the progression of one aspect. There is supposedly a twist at the end, but I thought that this was quite predictable and left a flat conclusion to an otherwise amazing book.

Unbecoming covers several hard-hitting issues and on discussion you’d assume they were too numerous to cover sensitively in one work. The book successfully shows us that an ‘ordinary’ person will go through many of these struggles in the course of their life, sometimes all at once, and that normally it just wouldn’t be considered that anyone would be processing this much turmoil in their life at any one time. Divorce, learning difficulties, Alzheimer’s, the changing views of society on single parent families, sexuality and grief – all of these are covered beautifully, giving us a real understanding of these three women and what makes them act in the way that they do.

The storytelling around Katie’s sexuality is beautiful. Far from realising her orientation and everything being sorted as is so often depicted in the fictional world, we see that same sex relationships are just as, if not more complex than otherwise seen. There is none of the usual ‘you’re gay I’m gay therefore we’re automatically in love with each other’ trope that seems so prevalent in young adult fiction at the moment. The pressures on Katie are realistic and ones that we can all relate to, and it’s so interesting to read the views of Caroline and Mary on these issues.

The descriptions of the relationships between mother and daughter, siblings and grandparents are diverse and evocative. There is something in Unbecoming for everyone because of the sheer detail and complexity, delivered so well as to be relatable in every sense. There is a slow unfurling of what makes these people tick and it’s something we perhaps miss in the hustle and bustle of everyday medicine. The relationships in the book develop slowly, with individual thoughts and processes being described so beautifully as to be haunting. You’ll go through your days after reading this book questioning everything. Unbecoming succeeds in delivering justice to the gradual development of its characters, both in spite of, and because of, the difficulties afforded to them.

Khalid Ali: Ageing (dis)gracefully from Camden pavements to Swiss resorts

10 Nov, 15 | by Ayesha Ahmad

Review of “The lady in the van” directed by Nicholas Hytner, UK release 13th November 2015, and “Youth” directed by Paolo Sorrentino, UK release January 2016

“The lady in the van” and “Youth” that recently premièred at the London Film Festival (LFF) in October 2015 are two great films about “senior citizens” in two completely different settings. “The lady in the van” is based on Alan Bennett’s (the famous English writer, https://en.wikipedia.org/wiki/Alan_Bennett) interactions with Miss shepherd in Camden Town in the late 70’s, while “Youth” is a fictional story of three mature artists set in a Swiss Alps resort. In the first instance, the viewer might not immediately see the connection between the two films; however upon closer inspection, one can appreciate that both films explore the trials and tribulations of old age in two distinct socioeconomic backgrounds with striking similarities in their points of view.

more…

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

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