Moving Kinship with the More-than-Human

By Dr. Beatrice Allegranti

Dr Allegranti is Reader in Dance Movement Psychotherapy and Choreography at the University of Roehampton, London.

Moving Kinship, a form of embodied activism involving people living with rare young onset dementia, family carers and Beatrice Allegranti Dance Theatre[i]. Social, psychological and political issues of equality, autonomy, dignity, social inclusion and solidarity have been raised in relation to people living with dementias, but little attention is paid to the role of the moving-expressive body and to creative processes in advancing issues of social justice and health — particularly in the areas of young onset dementia (YOD). Even less attention is given to health inequalities and BIPOC and LGBTQI experiences of kinship and dementia. The project creates a space for artistic collaboration that supports people affected by YOD and their families to speak out, be visible and be heard. A core aim of Moving Kinship is to investigate how our collaboration allows people affected by young onset dementia and their families to understand and deepen their capacity to engage with life and kinship bonds in embodied, accessible and more-than-human ways.

Drawing from transcribed interviews/participants stories and experiences and my own affective movement and written responses, I work in the studio with professional dancers and a musician (in my company) to co-compose bespoke performances (including music) for each family. We develop bespoke choreographic and acoustic responses to participants’ experiences and stories, shaping the impact of this material on our own bodies – through a kin-aesthetic ‘storying’ of the families’ life material. ‘Kin-aesthesia’ is the term that describes ‘the sense of movement’. My neologism ‘kin-aesthesia’ includes proprioception, interoception and the material kinship that emerges between people dancing and its ethical and political dimensions.

The project has partners[ii] across the arts, health and science sectors, and aims to create bespoke dance theatre performances for and with families affected by YOD. Regular Moving Kinship hubs for families affected by YOD have been established in north and southwest London and from Summer 2021 across six Surrey boroughs. The hub is a place of possibility and hope, a place of learning. The hubs offer an interdisciplinary (artistic-psychotherapeutic) methodology that support, in creative and embodied ways, the mental health of families affected by young onset dementia. Here, I present an extract from a case study[iii] that captures the entanglements of bodies, environment, language, vulnerability, age, dis/ability, power and loss. Revisiting this extract for the multispecies dementia blog during the COVID pandemic brings to the fore seismic bodily changes and entanglements[iv] we are faced with. A time of incipience, perhaps, as we re-configure our affective understandings and experiences of health, illness, loss and death with natural and medical environments. There is an urgency to attend to the tangle of social, political, environmental and economic layers: we must cultivate an ethics of engagement that defies the Humanist notion of the subject as separate and individuated. Instead, we can turn to a Moving Kinship: possibilities to grow new bodies and increase our capacity for progressive relating. Moving-with human and more-than-human others enacts subtle, sensorial and incremental changes, and makes a space for our unimagined hopes.

The specially commissioned illustrations are by artist Neil Max Emmanuel[v] as a visual response to this writing. 

Language, I hate it!

During our conversation Kevin and Zuli talk about Kevin’s charity work to support people after the 2004 Indonesian tsunami. A few moments later they speak of the impact of the dementia diagnosis two and a half years previously. Kevin lives with Frontotemporal Dementia, characterized by progressive difficulties in speech production and word comprehension, and uses the adjective “difficult” to convey his experience. He is beginning to find it “difficult” to have conversations; to understand what people are saying; to recognize words; to find words, declaring: “Language, I hate it!”. In this instance, Kevin’s uninterrupted and incisive statement is the interlocutor for our dance. It finds its way to the dance studio and into Luke and Takeshi’s duet with forceful acceleration, stamping, stumbling – grabbing at silent, half words. Luke reflects, two months after creating the material: “it’s quite demanding of attention,” evoking a refusal to remain silent or passive as this distributed agency begins to choreograph itself into Kevin and Zuli’s bespoke dance.  

Surrender

A few weeks later, whilst performing our bespoke dance for Kevin and Zuli, Kevin, poised in his chair, carefully watches Luke, who is dancing just a few steps away from him. As Frontotemporal Dementia erodes Kevin’s brain, abnormal proteins gather in clumps and neurotransmitters fail, I wonder what is happening in Kevin’s premotor cortex, the region of the brain that is activated not only when we plan and execute movement but when we witness movement that we recognize in others[vi]. What is being triggered for him affectively in his witnessing Luke open his arms and surrender to falling backwards? Luke’s repeated surrender of weight, falling backwards with open arms, evokes memories of Kevin’s work as a Minister and summons an image of renaissance post-crucifixion. And yet, as the other dancers gather round to gently support Luke’s weight during his fluid falls, I am struck by Luke and Kevin’s similar physicality, their length, stature, warmth and tactile-kin-aesthetic ways. In this performative moment, I see beyond the tropes of obliteration and visceral erasure that figure so prominently in Anglo-American narratives and biomedical accounts of dementia and  recognize a collective becoming-with. Has Kevin has experienced this too?

Radical Intimacy

After the bespoke dance, Kevin and the rest of the group join us for a collective improvisation. Kevin is already articulating the affective impact of his witnessing, he seems unsettled, as he stands next to me, tears brimming in his eyes, he is nevertheless poised to speak. Pronouns almost disappearing and syntax ebbing away he turns to me: ‘See. What you are doing…beautiful…thank you’. Over time, I have come to understand that Kevin’s comment and strong visceral response is not only aesthetic recognition. It is more than this, it is a relational incipience that goes beyond a hypercognitive individualism. Kevin’s engagement with this choreographic material grasps how beauty is imbued with a sense of potentiality, of something not-yet-conscious glimpsed and felt, of hope[vii]. Kevin’s witnessing the choreographic unfolding viscerally mattered, it moved him. More, Kevin reminded us that affect remains accessible when other parts of his bodily being-in-the-world are becoming less within his grasp, that a lifetimes affect can be enacted into a performative moment.

Throughout Kevin’s tears the group is stilled, waiting. In a parallel process, across the room, Luke’s eyes are also brimming with tears and later he speaks of the affective immediacy of this moment,

I felt naked and vulnerable and disarmed in the performance…it felt different to any other performance that I’ve done…I had that feedback from [Kevin]. He was looking at me directly in the eyes and he was crying and staring back at me. And that’s the best response I’ve ever had…to anything I’ve ever done. Better than a standing ovation.

Everyone is encouraged to release a collective breath and realize that Kevin has given us all permission to be with the wave of vulnerability that Luke names, to recognize it. Sabrina, also reflected on the “tsunami of tears and yet, we all reached each other.” Dwelling on the proposition of reaching summons early developmental processes predicated on tactile-kinaesthetic engagements as formative invitations to become beyond identity[viii]. There’s a radical intimacy in this process – it highlights how autobiographical dementia stories chime with wider socio-political taboos about what constitutes kinship, identity, age, loss, language and care. In contrast to biomedical prognoses of silence, language impairment and solipsism, this process focuses on the kinship that emerges not only between people dancing, and its ethical and political dimensions but with the ever shifting process of relating with the kin-aesthetic material itself.

I wonder how Kevin and Zuli are reaching beyond their ‘tsunami’: a series of family deaths; the strain on Zuli’s working life; and then the diagnosis of dementia – Kevin losing himself mid-sentence, mid-life, and Zuli’s new role as his carer:

Zuli: I feel like I’m running two lives. And it’s very difficult to have conversations now…it’s difficult to go out for a meal and we can’t sit and talk…[turning to Kevin] I feel like it’s quite isolating for you…

Kevin: For me?

Zuli: Yeah. And I feel increasingly isolated as well. Because a lot of people don’t know how to deal with people who have dementia…they assume Alzheimer’s and someone eighties plus.

Tsunami

In a parallel process, the seismic waves engulf me and the dancers in our studio practice and, as we make material we are tangled with human and non-human forces. We experienced a bodying of the visceral force of a tsunami, the sea’s response to an earthquake, and how, as as marine biologist, Rachel Carson describes: the preceding voice of the breakers is suddenly stilled and in a matter of moments the water rises rapidly, as though the tide is coming in much too fast, but without surf[ix]. Our affective resonance with this storm has us grappling with layers of intimate relating where we reach, tentatively, defiantly, lovingly, fearfully, into our future with our tactile-kin-aesthetic improvisations, sensing our way into our own and each other’s’ lives and into the lives of our participants living with dementia and their family carer. Our bodying of the tsunami became ‘flocking’ choreography where the dancers assemble as a more-than-human organism, sensing, surging and retreating, tangled, porous, in flux between a loosening and tightening grip of hands. Choreographing-with waves, wind, environment is an ongoing genesis, a bodying of potential becoming[x] rather than an ontology of the body that presupposes a fixed state of being. This flocking choreography temporarily takes form only to loosen and then re-form, never fixed. 

Later, Jill, the composer, sonically engages with this ongoing genesis and transforms the soundscore for this section of the performance into music that is like a ‘requiem,’

The tsunami from the dance studio rolled across the north sea and reached me, on the Island of Askøy. We often think of people like Kevin as stilled and quieted by the losses of dementia, I hear people saying ‘he is a shadow of a former self’, a shell.  Emptied of who he once was. At the same time, we often think of people like Kevin caught in the storm of dementia – waves of agitation, fear, aggression, a disruptive force, a destructive force that changes everything its path. I think of Kevin as the eye of the storm, like a hurricane seen from space. I recorded the wind and waves on the Island where I live, I notice how similar they sound.  

My youngest child is frightened by the strange noise of the wind the night I made the recording, he tells me the wind sounds like scary voices. I tell him not to worry, it is only the wind, and head out into the storm to try and record it. I struggle, it’s difficult, the weather is resistant to my attempts to capture it, I am disorientated and deafened. When I listen back to the recordings I notice how similar it sounds, the waves, the wind, but as I listen carefully I hear the voices – just like my son did. So the voices in what you [Beatrice] call the requiem grow from the wind and waves – things I couldn´t hear until someone reminded me how to listen. 

Affective resonance travels, it wanders, it leaves its mark and however fleetingly, the choreographic process and soundscore activated our relational potential the feeling that as Luke reflected: “we’re in the same ocean.” But these dances are not ephemeral because as we moved our entanglements Kevin reminded us that despite his losses – affective resonance lives on, it keeps moving in more-than-human ways. Zuli is also affected by the affective traces of life and loss,

Thank you, so much expressed from what we talked about – to our work together – and the dancers today! I felt such a mix of feelings – recognising the hurt, hope, care, sadness, joy, anger, fear and, on we go.

Useful Links

  • Watch the Surrey Moving Kinship launch event webinar here
  • Further information about London Moving Kinship Hubs can be found here
  • Short films and testimonials from London Hubs here and here
  • Watch the 3 minute trailer for the film I Can’t Find Myself and see further information about it here 
  • Read about out how the film I Can’t Find Myself is used as a dementia resource in this feature article written for Therapy Today Magazine here 
  • Watch #bellaciao a short film about the production I’ve Lost You Only To Discover That I Have Gone Missinghere

Endnotes


[i] Beatrice Allegranti Dance Theatre (BADT) produces international and politically progressive work across several mediums: performance, film, participation and publications. The company work tackles burgeoning and interrelated social and environmental issues of loss, mental health, migration and ‘othering’ — through outstanding and ethical dance practice. BADT works in collaboration with a pool of 6 professional dancers: Luke Birch, Takeshi Matsumoto, Rudzani Moleya, Onyemachi Ejimofor Maria Palliani, Anea Zwierzynska; actor Chiara De Palo, composer Jill Halstead, musician Robert Howat, a registered nurse practitioner and fifteen project partners across the arts, health and science sectors.

[ii] Moving Kinship hubs are supported by Arts Council England, Surrey Arts and delivered in partnership with Alexandra Palace, Merton Arts Centre, Public Health, St Georges NHS Trust, Age UK, Dementia Pathfinders, Dementia Action Alliance, Created Out of Mind at the Wellcome Hub, Wellcome Collection, Bergen International Festival with Bergen Red Cross, Norway, University of Roehampton, South West Yorkshire NHS Trust, LGBTQ+ International Music Network, University of Bergen with Social Acoustics Project.

[iii] Allegranti, Beatrice. (2020). ‘Dancing Activism: Choreographing the Material With/in Dementia’. In Chaiklin, Sharon. and Wengrower, Hilda., (Eds). Dance and Creativity within Dance Movement Therapy: International Perspectives. New York: Routledge.

Allegranti, Beatrice. (2019). ‘Moving Kinship: Between Choreography, Performance and the More-than-Human’. In Prickett, Stacey, and Thomas, Helen. The Routledge Companion to Dance Studies. London: Routledge.

[iv] Barad, Karen. 2007. Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham/London: Duke University Press.

[v] www.neeneecreative.com

[vi] Calvo-Merino, Beatriz, Grèzes, Julie, Glaser, Daniel. E, Passingham, Richard, E., and Haggard, Patrick. 2006. ‘Seeing or Doing? Influence of visual and motor familiarity in action observation. Current Biology, 16, 1905-1910. 

[vii] Spry, Tami. 2018. “Skin and Bone: Beauty as Critical Praxis.” Qualitative Inquiry 24 (5): 342-344.

[viii] Manning, Erin. 2007. The Politics of Touch: Sense, Movement, Sovereignty. Minneapolis: Minnesota Press. P xv.

[ix]Carson, Rachel. 2014. The Sea Around Us. London: Unicorn Publishing Group. 2014, p126

[x] Manning, Erin. 2007. The Politics of Touch: Sense, Movement, Sovereignty. Minneapolis: Minnesota Press. Pxxi.

What cats have taught me.

By Lorena Sordo

Lorena Sordo is a PhD Candidate at the Royal Dick School of Veterinary Studies, University of Edinburgh.

Cuco and me

Animals have become a crucial part of our lives and important members of our families. The benefits they bring to our lives are undeniable; they improve our health and well-being, they make us more active, they bring us joy, happiness, love, and companionship.

Nowadays, therapy animals/pets are becoming more and more common as they significantly improve the well-being of people with autism and mental health problems. We have also read in previous blog posts from Dr Louise Ritchie and Rebecca Lassell about assistance dogs from the Dementia Dog Project and horses from Riding in the Moment, and the ways in which the animals in both programs enhance the quality of life of people living with dementia and Alzheimer’s disease.

Personally, cats have helped me during difficult events throughout my life, the most recent being the current pandemic that is affecting us all. My cats are that much needed fresh air when I feel overwhelmed by work; when they lie on my keyboard while I am trying to write my thesis or when they decide that the best place to sit and groom themselves is in front of my laptop camera, while I am in an important meeting. My cats are also the best nurses; they have helped to ease my anxiety, they purr and keep me warm when I am feeling ill, and they make me laugh when I am feeling down.

I was fascinated by the blog post written by Professor Louise Locock and by Mr Pink’s story. As a cat lover myself, I found her blog so interesting, especially as she talks us through something that for many people (including myself) can be so difficult to confront, which is the ageing of a beloved pet – with all its challenges – and their inevitable death. For me, this blog hit close to home for two reasons. The first one is very personal, the recent death of one of my cats, Cuco, who was a playful, loving ball of fur who loved to sprint from one room to another and to sleep under the duvet. The second one is more from a professional perspective, because my area of expertise is feline ageing and dementia (yes, cats get it too).

Since I can remember, I have always loved and cared for animals; for this reason I decided to become a veterinary surgeon. I must confess that, even though I love all the animals, I do have a special and profound love/obsession for cats. They are such majestic, interesting, elegant creatures… and they know this. As Terry Pratchett wisely pointed out: “In ancient times cats were worshipped as gods; they have not forgotten this”. This is, in my opinion, what makes them even more special.

Since I became a vet, I have always shown interest in feline medicine and cat welfare. I came to Scotland (with my cats) in 2015 to pursue a MSc in Applied Animal Behaviour and Animal Welfare, focusing on cat welfare. Currently, I am a final year PhD student, soon to submit my doctoral thesis in feline dementia at The University of Edinburgh.

Maki and Ogra

At the beginning of my PhD, four years ago, I was mostly interested in the veterinary perspective of feline dementia, to understand its neuropathology, its potential causes and to find better and more efficient ways to diagnose and manage it. However, as I started to learn more about it, I found that the age-related changes in elderly cats with dementia are not too different to those in elderly people with Alzheimer’s disease. Aged cats develop behavioural, anatomical, and neuropathological changes similar to those seen in humans. It turns out that cats have not only helped us to enhance our lives with their unique presence, they are also becoming strong contenders in the search for accurate natural models for the study of Alzheimer’s disease. The thought of this really intrigued me.

I also became interested in drawing synergistic comparisons between species; what we know to happen in the brains of cats with dementia might help us to unravel the mechanisms behind human Alzheimer’s disease, and vice versa. Before the pandemic, I was lucky enough to visit Professor Elizabeth Head’s laboratory at The University of California Irvine. During my visit I learned an automatic technique to quantify protein deposition (i.e., beta amyloid and tau) in the brains of cats. This has helped me to draw objective and robust comparisons between cats and humans regarding the presence, distribution, and progression of these proteins within the elderly brain.

But cats are not the only animals that have shown to develop dementia, as dogs are known to develop it too. Interestingly, other animals also produce similar neuropathology, such as degus, dolphins, wolverines, and donkeys; however, the effect on cognition has not yet been assessed in these species.

It is clear to me that animals fill up and massively improve our lives, whether they are companion or assistance pets. However, little did we know, years ago, about all the knowledge that they would provide us. It will always amaze me how much animals can give us and how little they ask in return, with a rub on the belly or a scratch under the chin being enough. And now, after writing this short blog post, I feel I love animals even more than before and I am so very grateful for the two kitty cats, Maki and Ogra, who form part of my family.

Mr Pink: A vignette on labour and love within interspecies care relations in later life

In this 7 minute video, Professor Louise Locock from the University of Aberdeen discusses connections between love, labour, vulnerability and biographical disruption within interspecies relations of caring in later life. A transcript of the discussion is provided below.

Transcript

A vignette on love, labour, vulnerability and biographical disruption within interspecies care in later life.

Hi, I’m Louise Locock. OK, so first off, a confession, this paper is probably more informed by my personal experience of living with an aging Siamese cat than it is by theory. And there he is in the background. So it feels as if I’m trying to bridge two very different halves of myself, a mother, wife and cat lover on the one hand and on the other, an academic specializing in personal experience of illness. And I’ve always been a bit suspicious of autoethnography.

Leaving that aside, a running theme in my research into illness experiences has been the concepts of biographical disruption, first coined by Mike Bury and loss of self from the work of Kathy Charmaz. So both ideas speak to the way in which a human diagnosis of serious illness, whether acute or long term, can disrupt someone’s identity and their expected path through life. These ideas have been challenged and expanded to include concepts such as biographical flow and biographical continuity, in which illness is perceived as a normal, expected part of life, particularly in old age, or is just another difficulty to be absorbed alongside other, more salient characteristics such as poverty or discrimination.

So biographical disruption can ripple out to other family members. Aasbo, et al described the challenge of trying to maintain a sense of ‘biographical we’ when caring for a partner with the sense of, with a serious illness. But how might illness and disruption play out when the other member of the relationship is not another person, your partner, but an animal? So what I’d like to bring to the discussion is some reflections on the interrelationship between human illness, and aging and animal illness and aging.

So that prompts a number of thoughts for me. What is it like to be an ill, aging person, caring for an aging dog or cat? How do you support each other, but are you potentially also a care burden to each other? How does the human see their own physical and mental decline mirrored in the animal? Can we conceive of the animal experiencing biographical disruption, even if it’s inevitably the human who’s narrating the animal’s biography and we can’t directly access that? What happens when cognitive impairment disrupts the bonds between animal and human, or a change in living arrangements is required, which means one or other has to go somewhere else? How far do animal and person have a joint biography, if we can say that, and how far does it start to disintegrate or hang together as bodies and minds fail? And finally, dealing with the realization that this is potentially the last pet or, even more finally seeing the death of the last pet as part of one’s own mortality trajectory.

So returning to the personal, I’ll just reflect a bit on the changing relationship with my old cat, Mr. Pink, who was also known as Dog. He’s one of many cats I’ve owned, but one with whom I had a particularly intense bond. He was originally one of four family cats, young, healthy, easy to care for. But as our children grew, so the cats aged, the health problems piled up, we had chronic pain, we had stroke, we had kidney disease. And I note I’m saying ‘we’ there. And one by one, the cats left us. So there came a time when the house was almost empty. We had three cats buried in the garden, our sons off at university and only Mr Pink was left. Mr. Pink, who was a Siamese, who thought he was human, who wanted to be with me and talk to me, loudly, every waking minute and to sleep with me all night long. He was clever, inquiring, demanding, a clown, a friend.

And then came the disaster of a near-fatal episode of kidney disease; we were abroad at the time, which made it even worse. He was kept alive by intravenous fluids for eight days and eventually stabilized. But he remained dependent on being given daily subcutaneous fluid injections to hydrate him. When we came back from our trip abroad, we thought we had a few months with him at most. In the end, he survived nearly three years, and we had long periods of stability, interspersed with small declines and occasional crises. The daily fluid injections crept up to twice daily, then three times, and there were more medications and more health problems, very undignified constipation and incontinence towards the end. And adjusting to each of those new declines and incorporating each new intervention into our lives was a constant practical and emotional process.

My funny friend had become a burden, to himself and to me. And somewhere I crossed the line from love to labour. Did we judge that tipping point between survival and welfare right? We’ll never know. It’s possible I clung onto him too long, as the last link to my young, noisy family in what was now a silent house. And was he, in fact, caring for me, whether he wanted to or not?

Perhaps in such interspecies relationships, there’s a mutual shifting exchange of love and labour, in which decline and dependency on both parts may be asynchronous or in which both partners may mirror each other’s changing life and aging. And of course, negotiating this relationship is always under the shadow, unlike inter-human relationships, of the knowledge that one party has the power and responsibility to end the other one’s life.  Or seek to prolong it.

Further Reading:

Bury, M. (1982), Chronic illness as biographical disruption. Sociology of Health & Illness, 4: 167-182. https://doi.org/10.1111/1467-9566.ep11339939

Charmaz, K. (1983), Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5: 168-195. https://doi.org/10.1111/1467-9566.ep10491512

Locock, L. (2017). Labour and love for Mr Pink Veterinary Record 181, 518. https://veterinaryrecord.bmj.com/content/181/19/518

The Dementia Dog Project

By Dr Louise Ritchie

Dr Louise Ritchie is a Reader in Dementia Research in the Alzheimer Scotland Centre for Policy and Practice at UWS.

By Dr Louise Ritchie

 Most people within the dementia research community in Scotland will have heard of the Dementia Dog Project, they are welcomed at conferences and the dogs are often the centre of attention wherever they go. Network members who attended our BSG Animal-Assisted Dementia Care Workshop in May 2019 will remember meeting Henry, Anne and Uno, and hearing about the wonderful impact Uno has had on their lives. While meeting Uno (and other dementia dogs) is a lovely experience, it is witnessing the relationship between Henry, Anne and Uno that stays with you.

The Dementia Dog Project is an innovative project that aims to support people with dementia to engage with dogs and to promote the use of dogs in dementia care in the community in Scotland. The pilot project launched in 2013 and in the pilot phase introduced a dementia assistance dog to four couples where one person had a diagnosis of dementia. In 2016, I led an evaluation of the pilot phase of the Dementia Dog Project with Dr Nick Jenkins, Dr Sam Quinn and Professor Debbie Tolson from UWS along with Dr Barbara Sharp from Alzheimer Scotland. The Dementia Dog Project has developed a lot since then, and there are currently 10 dementia assistance dogs living with families across Scotland; you can read more about the project in the link above. This blog will focus on the findings of our research, published in 2019 which you can read here.

Our research focused on trying to understand what happens when a dementia dog is placed with a family to unlock such transformational benefits, like those described by Henry and Anne. Our analysis drew on data from a range of primary and secondary sources including interviews with the project team, case reports, team meeting notes and transcripts of interviews with participants (collected during the pilot period of the project 2013-2015). We identified three mechanisms that help to unlock the most positive outcomes for both the participants and the dogs. These were (1) the human-animal bond, (2) relationship dynamics and (3) responsibility of caring.

Both the person living with dementia and their spouse formed strong bonds with the dog, however there were notable differences in the nature of the bond. Reciprocity and trust were at the root of the bond, however the dog seemed to understand that their role was to support the person with dementia, and that the spouse was the person who would provide care for the dog. The foundation of trust meant that both the person living with dementia and their spouse had confidence in the dog carrying out the role that was required. The benefits of this were emotional and practical support for the person living with dementia, and respite from the role of ‘carer’ for their spouse. One participant spoke of their dog as ‘the missing link in our bracelet’.

Related to this was how the dog seemed to influence the existing relationship dynamics; the couples spoke about how having the dog acts as a ‘buffer’ between them and how the dog provided a focus and a topic of conversation that wasn’t dementia. Although the dog was there primarily in a support role, the social benefits of having a dementia dog seemed to be around bringing normality to interactions both between the couple and in other situations.

Finally, the research found that the responsibility of caring for the dog was important in developing positive outcomes for those involved. The Dementia Dog Project provides support and guidance to the families, however it is the responsibility of the family to care for the dog. This means providing exercise and nutrition as well as ensuring their training is maintained. Having this responsibility provided motivation to be more physically active, but also more socially connected which had potential benefits for each family’s well-being and quality of life.

The Dementia Dog Project is an excellent example of how animals can be successfully integrated into dementia care. While our research has only explored a small section of the work the Project engages in, it is clear to see the significant impact the dogs have on the lives of people living with dementia and their families. As a person who would have never described herself as an animal lover (I’m allergic to most furry creatures!) being involved in this project has completely changed my perspective and I’m so excited to develop the Multi-Species Dementia Network (I’ll probably need to stock up on anti-histamines though).  

Making Horses Accessible: Research and Reflections on the Riding in the Moment Program

By: Rebecca Lassell Ph.D. Candidate, OTR/L

Rebecca (Becca) Lassell is a Ph.D. Candidate in Occupation and Rehabilitation Science in the Department of Occupational Therapy at Colorado State University in Fort Collins, Colorado.

During my first year of PhD school, I was offered an opportunity. The opportunity involved assisting in my colleague’s dissertation study of a program called Riding in the Moment that was created and implemented by Hearts & Horses Therapeutic Riding Center in northern Colorado. Riding in the Moment is an adaptive riding program that aims to enhance quality of life for people living with dementia. Adaptive riding, also called therapeutic riding, describes the skillful modification of riding and other horsemanship activities for people with diverse needs that are delivered by a trained instructor (Wood et al., n.d.). As an occupational therapist, avid horse lover and former horse owner, I jumped at the chance.  

The study involved documenting frequencies of participants’ observed emotional expressions and how they spent their time during Riding in the Moment compared to routine activities at their long-term care facility (Fields, Bruemmer, Gloeckner, & Wood, 2018). As I observed, I was struck by the stark contrasts of the participants’ experiences between the two environments. At the long-term care facility, participants were offered group activities, such as music and reminiscing, where they would often show interest and engage. Yet at other times, they appeared idle as they sat silently on the couch, watched TV, or even slept. In contrast, at the therapeutic riding center they appeared vibrant and animated as they groomed, pet, and rode horses. It was as if being at the therapeutic riding center with the horses awakened a part of themselves that was hidden at the long-term care facility. I was enthralled. Here’s a short clip of the program: https://www.youtube.com/watch?v=7xDaqy3ba6M&t=1s.

Photo by: Hearts & Horses Therapeutic Riding Center

The therapeutic riding center offered a social environment that seemed to be enriched by the interactions between staff, participants and horses. Specifically, staff socialized with participants and offered them choices for petting, grooming, or riding a horse (for those cleared by their physician). Participants could also opt to watch the ongoing activities and socialize. Staff supported participants’ choices for activities and modified the selected activities to enable their participation. The interactions between the participants, horses, and staff often brought smiles, conversation, and laughter. In fact, participants were observed to show more signs of pleasure and more frequently engage in conversations during Riding in the Moment when compared to routine activities at their long-term care facility (Fields et al., 2018). Later, I decided to devote my dissertation to the study of Riding in the Moment.

Under the mentorship of Dr. Wendy Wood, the Director of Research at the Temple Grandin Equine Center at Colorado State University, my dissertation has focused on the scientific development of Riding in the Moment. My work has involved creating a data-driven logic model of Riding in the Moment to inform its replication and refinement (Lassell, Fields, Busselman, Hempel, & Wood, 2019). More recently, in partnership with Hearts & Horses Therapeutic Riding Center, the Alzheimer’s Association of Colorado, Dementia Together, Banner Health, and the Larimer County Office on Aging, we expanded the population previously studied to include people living with dementia in the community, and invited their family members to participate, to learn about their experiences of the program. In addition, my work has included piloting short-term outcome measures and developing and piloting an adaptive gardening comparison condition in partnership with the Fort Collins Senior Center and Ashley Krueger, the Education Coordinator at the Gardens on Spring Creek in Fort Collins, Colorado. Findings will be reported in forthcoming manuscripts.

Tamara Merritt, the Executive Director of Hearts & Horses Therapeutic Riding Center shared:

For many of us working in the therapeutic riding industry, we have long recognized the tangible benefits of adaptive riding for people with disabilities.  Now, thanks to Colorado State University and researchers like Becca Lassell, we are beginning to develop a body of scientific evidence that quantifies the specific benefits and unique elements that adaptive riding provides.  All of us at Hearts & Horses have been delighted to collaborate in a study of our Riding in the Moment program. 

My colleague, Dr. Beth Fields at University of Wisconsin-Madison is currently developing implementation and curriculum manuals for Riding in the Moment. The project is a collaborative effort among University of Wisconsin-Madison, Hearts & Horses Therapeutic Riding Center, Three Gaits, Inc. Stoughton Senior Center, and the Aging & Disability Resource Center of Winnebago County.

As I reflect on my experience conducting research of Riding in the Moment, I am reminded of the importance of accessing activities that bring us joy and chances to connect within our communities. Riding in the Moment appears to be a means of forming connections with other humans and horses, all within the natural context of a barn or farm. The uplifting experiences that I’ve witnessed during the program inspired me to undertake this work. It is my hope that our research might enable more people living with dementia to access activities with horses—and as a researcher, I am passionate about exploring the ways in which participating in these activities may shape well-being.

Acknowledgments

I would like to gratefully acknowledge:

  • The Hearts & Horses Therapeutic Riding Center and Tamara Merritt for contributing to this blog post
  • The Carl and Caroline Swanson Foundation and the Office of the Vice President for Research, Catalyst for Innovative Partnerships at Colorado State University for generously funding my research
  • Dr. Wendy Wood, my mentor for guiding and supporting me on my PhD journey
  • Dr. Beth Fields for introducing me to Riding in the Moment and for her continued support and friendship
  • My team members from the Enriched Aging research team for providing guidance for my most recent study of Riding in the Moment

References

Fields, B., Bruemmer, J., Gloeckner, G., & Wood, W. (2018). Influence of an Equine-Assisted Activities Program on Dementia-Specific Quality of Life. American Journal of Alzheimer’s Disease and Other Dementias, 33(5), 309–317. https://doi.org/10.1177/1533317518772052

Lassell, R., Fields, B., Busselman, S., Hempel, T., & Wood, W. (2019). A logic model of a dementia-specific program of equine-assisted activities. Human-Animal Interaction Bulletin, 9(2).

Wood, W., Alm, K., Benjamin, J., Thomas, L., Anderson, D., Pohl, L., & Kane, M. (n.d.). Uniform Terminology for Services that Incorporate Horses to Benefit People: A Consensus Document. Journal of Alternative and Complementary Medicine (Under review).

Previous Research of Riding in the Moment

  • Fields, B., Bruemmer, J., Gloeckner, G., & Wood, W. (2018). Influence of an Equine-Assisted Activities Program on Dementia-Specific Quality of Life. American Journal of Alzheimer’s Disease and Other Dementias, 33(5), 309–317. https://doi.org/10.1177/1533317518772052
  • Fields, B., Wood, W., & Lassell, R. (2019). Impact of a dementia-specific program of equine-assisted activities: providers’ perspectives. Quality in Ageing and Older Adults.
  • Lassell, R., Fields, B., Busselman, S., Hempel, T., & Wood, W. (2019). A logic model of a dementia-specific program of equine-assisted activities. Human-Animal Interaction Bulletin, 9(2).

For more information contact: Rebecca Lassell, Rebecca.lassell@colostate.edu

Story Telling – people with dementia, relationships and animals.

By: Dr Karen Harrison Dening.

Dr Karen Harrison Dening is Head of Research & Publications at Dementia UK. She is also Honorary Assistant Professor, School of Health & Life Sciences, University of Nottingham, Honorary Professor of Dementia Care Research, De Montfort University and Honorary Research Fellow, Health Services Research Department, University of Liverpool.

A significant aspect of the work of Dementia UK is in increasing the general public’s understanding of the experience of what it is like to live with dementia, whether this is from the perspective of the person with the diagnosis, their family carer or health and social care professionals.  Achieving a high level of understanding is often crucial to the provision of high-quality dementia care. In the UK, over 200,000 new cases of dementia are reported each year (Matthews et al 2016), however, the nature of dementia often makes it difficult for many to understand what it may be like to actually live with dementia.

A real positive in working for a dementia charity is that we are asked to offer our opinions and commentary on a range of literary products on dementia.  Now I love a good story and reading novels is one of my greatest pleasures so when the charity is asked to comment on a play script or a novel that explores some aspect of living with dementia I jump at the chance.  I have read some good (and bad) scripts and novels and met some amazing authors, illustrators and actors in doing so.

One of the more recent requests was seeking our recommendations for fiction that explores the dementia experience for National Book Day. Internationally the novel is celebrated in many ways from prizes and awards for authors to days, such as National Book Day, to encourage those of all ages to read more. Another example is World Book Day (2020) which was held in March of this year with its theme being to encourage us to ‘share a million stories’ across the UK. I am not sure how successful the day was, but this set me thinking; how many novels are sold each year? I found a website of a book sales monitor (Nielsen BookScan 2020) that claims to provide statistics for the print book market in the UK. In total, they claim that 190.9 million books were sold in the UK in 2018.  It is less clear as to how many of these were fiction and even less clear on the numbers that relate to dementia in any way – very few is probably the answer to that.

The Wilderness by Samantha Harvey

There is a growing recognition that the arts can complement healthcare, and that creative arts initiatives can help people connect with their fellow human beings as an effective way of supporting mental health and wellbeing (Bladen 2019). Novels can challenge our perspectives on the human experience of dementia in ways unmatched by other media. In a world dominated by technology, reading a novel encourages us to silence the noise and enter another world. Reading fiction (or non-fiction) can be a great way to increase our understanding and empathy of the human condition in its many forms. Bladen explores how the novel can be used to evidence the experience of dementia and discusses several well-known novels to illustrate the power of storytelling, such as Still Alice (Genova 2015) and The Wilderness (Harvey 2010).

In general, novels that afford some focus on the lived experience of dementia often do so as witnessed by the relatives and friends of the person with the diagnosis, whether that be from observing and suspecting something is ‘not quite right’ (Genova 2015) to an exploration of how relationships can alter as a result of dementia (Healy 2014). Very few are narrated in the first person.  What is of greater interest to me is that, despite extensive searches I have found no novels that explore the experience of dementia that also involves another species, for example, in the form of a family pet.  

However, if we look to the literature on psychosocial interventions, Animal Assisted Therapy (AAT) is a recognised intervention in dementia care based on the interaction between patients and animals. AAT, and Dog Assisted Therapy in particular, has been proposed to help adults with dementia in the management of their distress behaviours (Zafra-Tanaka et al. 2019). Wesenberg et al. (2019) found people with dementia exposed to an AAT intervention experienced significantly longer and more frequent periods of pleasure and positive social interaction. Is this really surprising? Many people, before they develop dementia, have long and satisfying relationships with animals.  It is often the advent of dementia that affects their continued enjoyment of these relationships.  For example, if it is deemed the person with dementia requires institutional care their beloved pet may not be allowed to make that transition with them.  This is often seen as a transitory sadness (or sometimes an inconvenience in respect of finding a home for the animal) on the part of health and social care providers but for the person with dementia this may be akin to losing a child, a loved one. 

Snow, Dog, Foot by Claudio Morandini – Shiny New Books

So where am I going with this? I recently read a book that was translated into English from an Italian author.  Whilst short term memory was a factor in the presentation of the protagonist, this was not a picture of dementia but of mental ill health and solitude.  However, the strand that ran through the novel was the relationship the main character built with a stray dog and the dialogue (yes, a two-way dialogue) that passed between them (Morandini 2015).  If the care and research world reduces the loving relationship a person living with dementia has with an animal to ‘an intervention’, then perhaps this is a topic that could be better explored in the world of literature?  If literature is a means of enhancing the readers’ understanding and empathy of the experiences of others, then could this work by telling the story of a person with dementia and their pet?

References

Bladon, H. (2019) Using fiction to increase empathy and understanding in dementia care. Nursing Times. [online]; 115(12): 47-49. https://www.nursingtimes.net/clinical-archive/dementia/using-fiction-to-increase-empathy-and-understanding-in-dementia-care-25-11-2019/

Genova. L, (2015) Still Alice. London: Simon and Schuster.

Harvey, S. (2010) The Wilderness. New York, NY: Anchor Books.

Healey, E. (2014) Elizabeth is Missing. London: HarperCollins.

Matthews, F.E. et al. (2016) A two-decade dementia incidence comparison from the Cognitive Function and Ageing Studies I and II. Nature Communications. 7: 11398.

Morandini, C. (2015) (Translated by Ockenden, J. 2019) Snow, Dog, Foot. London: Peirene.

Nielsen Books (2020) Available on-line: https://nielsenbook.co.uk/about/  [Accessed: 7 September 2020].

Wesenberg, S., Mueller, C., Nestmann, F. & Holthoff-Detto, V. (2019) Effects of an animal-assisted intervention on social behaviour, emotions, and behavioural and psychological symptoms in nursing home residents with dementia. Psychogeriatrics. 19(3):219-227. doi: 10.1111/psyg.12385.

World Book Day (2020) Available on-line: https://www.worldbookday.com/2019/09/world-book-day-2020-launch/ [Accessed: 7 September 2020].

Zafra-Tanaka, J.H., Pacheco-Barrios, K., Tellez, W.A. & Taype-Rondan, A. (2019) Effects of dog-assisted therapy in adults with dementia: a systematic review and meta-analysis. BMC Psychiatry. 19: 41. doi: 10.1186/s12888-018-2009-z

Opal my Teacher: How Lessons I Learned From my Dog Inform my Research Practice.

By Dr. Holly McKenzie.

Dr. Holly McKenzie is a Banting Postdoctoral Fellow in the Department of Sociology at the University of Saskatchewan.

Holly and Opal standing together in April 2019.
Opal and I looking for adventure in April 2019. Photo by Maki Fotos

Towards the end of my PhD, I met one of my best teachers – Opal. In April 2017, my partner and I brought home a black Great Dane puppy named Opal whom a breeder had placed with us as a therapy and performance dog prospect. I felt 100% ready for the challenge of living with and training Opal. My confidence was understandable: I had trained many horses (some shy, some confident) while growing up in rural Saskatchewan, Canada. I had read many books in preparation for this day, including Ian Dunbar’s Before & After Getting Your Puppy, Patricia McConnell’s The Other End of the Leash, Rachel and John Cawley’s Barron’s Dog Bibles: Great Danes, and I had reviewed countless websites. I had also spoken with Opal’s breeder at length to get the best sense possible of what I was preparing for. And no surprise here, but Opal, my spouse and I were enrolled in a puppy class that started just days after she arrived home.

I pretty well knew from the get go that Opal was not going to be an ‘easy’ student. In fact, she wasn’t going to ‘just’ be a student, she was also going to be a teacher.  It took me a bit longer to learn that lesson though.  She is a confident dog and at six months of age, she seemed a bit unsure about whether I was up to this task of being (one of) her human leader(s). I think she asked herself daily whether walking past exciting animals, humans, leaves, birds and butterflies was really in her best interest. She was pretty sure that she could identify every person and animal she should visit, every bird she should watch and every butterfly she should chase. So, lesson #1 from Opal – confidence in myself. I figured out what she loved in life, straightened my shoulders, walked calmly and showed her that where we were going held contentment (i.e. the yummiest treats and affection from humans) as well as joy (i.e. sniffing, staring at birds, toys and chase games)  and that we couldn’t visit every animal. I didn’t feel very confident at first, but over time I did and not just in my interactions with Opal. This transferred into my work life. For instance, I took a risk and submitted a grant application for a Banting postdoctoral fellowship in the area of human/non-human-animal relations; not my area of PhD study but an area I was growing more passionate about as I worked with Opal. For the next 18 months, my work will be in a new field that I am passionate about, specifically examining the experiences of therapy dog-handler teams and patients accessing Canada’s first emergency department to have visiting therapy dogs.

Opal at 4 months looking at camera.
Opal ‘looking me in the eyes’ at 4 months. Photo by Steve Espey

Lesson #2 from Opal is learning to listen and better communicate. Working and living with Opal required that I learn more of her language, and she learned to use different communicative techniques to tell me things. For instance, like most dogs, she will look away when she is feeling pressured or stressed and I have learned to read this and respond in a supportive way. She also learned that by looking me in the eyes (which is not polite canine-canine communication), she can tell me when she needs or wants something. Of course, learning to communicate with each other has been fraught with tension and misunderstanding, since I am a primate and many of the ways I try to tell her something communicates something totally different in canine language. However, this imperfect (ongoing) process has led to a deeper relationship between us and an expansion of my attunement to communication and relationships. As Suzanne Clothier wrote,

All of us…move through life trying to be heard, trying to listen. Should I ever lose the power to speak and to write, my two major forms of communication, I sincerely hope someone loves me enough to guess what I’m trying to say. I sincerely hope someone is intensely curious about what’s going on inside me and takes the time to listen to the whole message. I hope someone treats me like a dog they love very much.

(2002: 101-102)

Through learning to pay attention to Opal’s communication, guessing what she means, and being receptive to her feedback, I have become more attuned and present not only with her, but within other relations. For instance, in research meetings (with humans and canines), I strive to communicate openness and non-judgement in various ways, and I pay attention to body language and verbal communications (as well as pauses), in order to further understand what humans and canines are expressing. This is helping me deepen my collaborative relationships, which fosters more meaningful and useful ideas, analyses, and products.

However, even today, I am not always attuned and present. This is Opal’s lesson #3—the importance of putting into practice my values and knowledge. Sometimes, when we are going for a walk or training together, I get lost thinking about work or what we ‘should be’ doing. In these moments, Opal gets my attention (sometimes by ignoring my distracted attempts to communicate). Like always, she is perfectly herself and engages with me in ways that reflects similar past experiences, my emotions and the environment (Clothier, 2002). She does not care how many books I have read or what values I tell others I have. She only cares how I act from moment to moment. The importance of putting into practice my values and knowledge is integral to my academic research work. Working within academia comes with institutional pressures, demands and short timelines.  Some days I feel like all I have accomplished is ‘putting out fires.’ Within this context, putting my values and knowledge into practice means using them as a lens to prioritize and focus my work (in particular, the importance of doing research that benefits the communities I am working with, including non-human animals), as well as to challenge institutional norms and practices that do not align with my values. For instance, I allocate time and resources to community involvement and community products within research projects, and recognize collaborators’ contributions through co-authorship, honoraria and in other ways (see for instance, McKenzie, 2020). 

Opal and I looking at each other.
Opal and I learning together. Photo by Dogwould

While many have taken the time to share with me some of their knowledge, in these last three years Opal has become one of my best teachers. The examples I have shared here are just three lessons that immediately come to mind. There are many, many more. Through cohabiting with Opal, some of the things I have learned are: to have confidence in myself, to be attuned to various forms of communication, to consistently work to integrate my knowledge and values into practice, to trust the process, and to be responsive and adaptable – all things that make me a better human (and a better researcher). I am still learning with Opal as a partner by my side and this process of learning with Opal has also attuned me to the fact that the therapy dogs I will be working with during my postdoctoral project also have lessons they will share with me, if I am open to them.

Acknowledgements:

  • I write this blog post from Saskatoon, Saskatchewan, Canada located on Treaty Six territory and the homeland of the Métis. I am thankful to, and hold deep respect for, the First Nations and Métis ancestors of this place who cared for these lands. Along with Indigenous people and other allies/accomplices, I am working to build better relations between settlers and Indigenous people.
  • Thank you Dr. Colleen Dell for reviewing an early version of this blog post and for your support and guidance in my postdoctoral fellowship.
  • Funding for this research work has been provided through the Banting Postdoctoral Fellowship program.

More information about Holly McKenzie

Works Cited

Cawley, R. & Cawley, J. (2012). Barron’s Dog Bibles: Great Danes. Hauppauge, NY: Barron’s Educational Series, Inc.

Clothier, S. (2002). Bones would rain from the sky: Deepening our relationships with dogs. New York, NY: Warner Books.

Dunbar, I. (2004). Before & after getting your puppy: The positive approach to raising a happy, healthy & well-behaved dog. Novato, CA:New World Library.

McConnell, P. (2003). The other end of the leash: Why we do what we do around dogs. Reprint Edition. New York, NY: Ballantine Books

McKenzie, H. A. (2020). Indigenous women’s reproductive (in)justices and self-determination: Envisioning futures through a collaborative research project (Doctorate of Philosophy), University of British Columbia, Vancouver, BC. 

Insights Series (4): My home, my garden story: interspecies relationships in the gardens of people living with dementia

By Dr Christina Buse and Dr Sarah Noone

Dr Christina Buse is a Lecturer in Sociology & Social Psychology at the University of York, UK

In the My Home, My Garden Story pilot study we have been exploring the role of gardens in the everyday lives of people with dementia who are living at home. We are interested in why gardens are important to people with dementia and their families, and their everyday garden practices.

We’ve been using methods including walking interviews, diaries, and visual methods (filming, sketching), to understand the embodied and sensory experiences of gardens. However, our methods had to be adapted in light of the COVID-19 pandemic (see Sarah’s blog here). This blog explores interspecies relationships or ‘entanglements’ between people, plants and animals as part of everyday experiences of gardens.

Dr Sarah Noone is a Research Associate at the University of York, UK

From the outset of the project we were interested in ‘everyday creativity’ in gardens – how people adapt and improvise in response to the challenges of living with dementia, including adaptations to environments (Bellass et al. 2018). Participants talk about making adaptations to their gardens, such as: raised beds, ‘simplifying’ gardens with plants that are easy to maintain, and – in one household – creating a ‘sensory garden’ with pleasant fragrances, and brightly coloured plants and furniture. As Ingold (2010) argues, everyday creativity is a process of improvising and ‘becoming’ with the changing materialites of plants and environments. Creative adaptations are therefore not just a matter of making changes to gardens, rather working with plants and materials in the garden.

Thornless rose in Frank and Emma’s garden

Emma (family carer) has put a thornless rose over an archway into the garden, describing thorns as a ‘hazard’ to herself and her husband. Emma says that these adaptations make the garden not just ‘dementia friendly’ but also ‘age friendly’ and ‘child friendly’ for their grand-daughter. Adaptations to the garden are also ‘pet friendly’ – made with their two cats and visiting wildlife in mind.

Sensory experiences play an important role in participants’ engagement with their gardens, and appreciation of birdsong is central to these experiences. For two participants who live in a very urban setting, the recent lockdown has enabled them to enjoy the sound of birds in their garden:

Phil: You hear a lot more of the birds now.  Now the traffic’s a lot quieter.

Judy: Yeah, it’s really nice, isn’t it.

Domestic animals also play a role in participants’ sensory experiences in the garden. As Emma, a family carer, led Sarah on a tour of the garden, her husband Frank, who lives with dementia, sat contentedly on his favourite bench in the sunshine, stroking one of their cats, and enjoying the sense of warmth and touch. The haptic dimension of engagement with the garden plays a key role in the development of the sensory experience (Allen-Collinson and Leledaki, 2015), and our findings suggest that interspecies interactions can add to this element of sensory engagement.

Frank and his cat enjoying the garden.

Maintaining gardens is an act of ‘caring for places’ that involves mutual caring relationships between people with dementia, family members, friends, neighbours, plants, pets and wildlife. People with dementia are actively involved in caring for grandchildren, pets and wildlife, and these relationships can be mutually supportive. Lynne and Karen talk about creating nests for birds in their garden, and the chickens they ‘rescued’. They also describe the ‘comfort’ and ‘joy’ they get back from animals and plants in the garden:

And she [Karen] loves being outside in the garden, and it’s that open space, the sound of the birds.  We have lots of nesting birds, as well as chickens, and we have two dogs …we both find, in separate ways, a lot of comfort and space out there.

Lynne, family carer

The borders of gardens – hedges, fences, front gardens – also facilitate exchanges with neighbours and small acts of mutual helping or caring ‘around the edges’ (Brownlie and Spandler 2018, p.257). Animals can be part of enabling connections and acts of helping, and one couple who had kept chickens talk about giving ‘the neighbours eggs from time to time’.

Karen and Lynne’s chickens (zoom screenshot)

These mutual caring relationships form part of participants’ everyday household routines. Many participants feed the birds on a daily basis, and this activity plays a central role in their engagement with the garden. Mike and Sandra shared their daily bird-feeding routine in their garden diary entries:

On his way to bring the wheelie bin to the back of the house Mike put bird seed on to both feeders.   We are not putting out too much each time because the grey squirrel(s) sometimes take the lot…

Through the kitchen window within minutes of putting seed out we saw a Blackbird and probably a sparrow feeding.        

Extract from Day 1 of Mike & Sandra’s Garden Diary
Mike and Sandra’s bird table

Mike and Sandra feed the birds each morning and evening as part of their daily household tasks and enjoy the reward of seeing the birds feeding at the table. However, this act of care for the birds visiting their garden is partially informed by their attempts to negotiate a less harmonious relationship with some grey squirrels, who frequently steal the bird seed from the table. Mike and Sandra have modified their daily routine in order to deter the squirrels from their garden, thereby protecting the birds’ source of food. Mike and Sandra’s diary entries also share that they had purposefully designed their bird table to prevent pigeons “stealing” food intended for smaller birds. These examples illustrate a further theme emerging from our findings; that interspecies interactions are not always an enjoyable aspect of spending time in the garden.

Practices of looking after plants and animals in the garden are often part of participants’ biographies. Some participants talk about how they ‘always’ had pets, as Phil (family carer) says: ‘when our children were little we had guinea pig cages in the garden…we’ve had cats and things…and we’ve always had a dog.’ Seeing animals or birds in the garden could trigger memories, and prompt biographical narratives:

I love the birds. Because I used to have a grandad that was very good. He…He used to drive […] Horse and carriages […] he used to drive the carriages, but in London […] And he was lovely…he kept chickens!

Sandra, person living with dementia

For Sandra, her relationship and connection to birds in the garden is situated within her biography and her family relationships, illustrating the interconnectedness of interspecies relationships. During the walking interview Sandra points out and names the plants and trees she has grown, enacting her embodied identity as the main gardener in the household.

Through the data gathered during this pilot study, we have begun to cultivate an understanding of the importance of home gardens in the everyday lives of people with dementia and their family carers. Exploring the dynamics between our participants, the domestic and wild animals living in their gardens, plants and trees, provides valuable insight into the role of interspecies relationships in the value obtained from gardens, and the ways in which garden spaces are used. We look forward to exploring these issues further as we develop the My Home, My Garden Story project.

Acknowledgements

My Home, My Garden Story is a collaborative project between the Universities of York and Manchester. It is funded by the University of York Pump Priming Fund. We would like to thank all our participants, co-investigators and our partner organisation.

For further information:

Contact:

Christina Buse christina.buse@york.ac.uk

Or

Sarah Noone sarah.noone@york.ac.uk

References

Allen-Collinson, J. and Leledaki, A. (2015) Sensing the outdoors: a visual and haptic phenomenology of outdoor exercise embodiment. Leisure Studies, 34(4), 457-470

Bellass, S., Balmer, A., May, V., Keady, J., Buse, C., Capstick, A., Burke, L., Bartlett, R., & Hodgson, J. (2018) Broadening the debate on creativity and dementia: A critical approach. Dementia, https://doi.org/10.1177/1471301218760906

Brownlie, J. and Spandler, H. (2018) Materialities of mundane care and the art of holding one’s own. Sociology of Health and Illness [special issue – Materialities of Care], 40(2), 256–269.

Ingold, T. (2010) Bringing Things to Life: Creative Entanglements in a World of Materials. NCRM Working Paper. Manchester: Realities / Morgan Centre, University of Manchester. Available at: http://eprints.ncrm.ac.uk/1306/1/0510_creative_entanglements.pdf

Insights Series (3): ‘Paws for Dementia’ Dog Walking Group

By Dr Sarah Campbell, Professor Andrew Clark and Cathy Riley.

Dr Sarah Campbell is a Lecturer in Integrated Health & Social Care at Manchester Metropolitan University, UK
Professor Andrew Clark with his dog Betty. Andrew works in the School of Health and Society at the University of Salford, UK.

This blog reflects on our experience of undertaking an evaluation of a dementia dog walking group which formed part of our research study exploring neighbourhoods and dementia. Writing this piece now, during the time of the Corona Pandemic, it is upsetting to imagine the impact on the individuals that attend groups like this. Groups which provide opportunities to be together and with regard to this group to also be outdoors in the neighbourhood. 

Much of the work of the ESRC/NIHR Neighbourhoods: Our People, Our Places study has emphasised the need to remain connected and the important value that neighbourhoods have in facilitating opportunities for support. During the research the significance of relationships with pets emerged. Dogs and cats in particular were found to be a great source of comfort and support for participants. Although there were also participants who expressed the sense of loss in their lives now they no longer owned a dog, or felt it practical to have one. Some participants described making connections in their neighbourhoods with dogs, for example one participant carried dog treats with her when she went out on her local high street, she said she recognised the dogs more than she did their owners. Other participants with dogs as pets enjoyed going on familiar dog walks and others talked about the company of pets at home. One of our research methods was a ‘home tour’ led by participants round their homes, and pets regularly featured in these, following the participants as they led us around their homes. 

One aspect of the research was to work with existing neighbourhood service models or facilitate the development of new ones in order to create opportunities for on-going learning in relation to the provision of sustainable neighbourhood services. This led us to work with the ‘Paws for Dementia’ dog walking group to deliver an evaluation that might provide such an opportunity to share insights from innovative practice supporting people living with dementia in a neighbourhood setting.

The ‘Paws for Dementia’ dog walking group opened its doors in May 2018, or rather passed around it’s leads as people living with dementia, family carers, health and social care staff and volunteers began to meet to walk their dogs in a Salford park. 

Many of the findings from our evaluation of this group relate to how individuals describe their experience of companionship and being outside in a green space enjoying the changing seasons. Something that currently feels acutely absent from our lives.

The group was started by Cathy Riley and Gill Drummond from Greater Manchester Mental Health Foundation NHS Trust. It had evolved out of conversations with service users, and with us (Sarah Campbell and Andrew Clark) working at the time on the ESRC/NIHR Neighbourhoods: Our People, Our Places study

Cathy Riley is Manager of the Open Doors Network, Greater Manchester Mental Health NHS Foundation Trust

The Open Doors Network led by Cathy Riley supports people living with dementia and their families in Salford, Greater Manchester. The network aims to be responsive in its service provision and to provide activities that meet the needs of those using its services. The network were thrilled when they were successful in obtaining internal funding to pilot the dog walking service.

As Cathy Riley states, often people want to do ordinary things and to continue to be a part of their communities. This was key to the dog walking group, with the aim to support people living with dementia in the community who were dog owners to come to the group with their dogs and to be able to walk them in the company of other dog owners, and dog lovers.  However, there were others who no longer owned dogs and missed the companionship of a dog who also attended the group, and could walk around the park with a dog, and pet them during the café break. Alongside this the group had funding to support patients from the local NHS Dementia Assessment units to come along supported by staff from the Occupational Therapy team. This aspect of the group aimed to support those in hospital to begin an activity that they might be able to continue once they left hospital, and this happened with at least one individual.

Undertaking the evaluation gave us chance to explore what elements of the group worked and what needed to be developed further. Initially the group facilitators had envisaged meeting in different locations to go for a walk, but this would need excellent transport options and support for travel making it much more complicated to get off the ground. Hence creating a regular meeting time and location made it more possible to grow the group, and to ensure people could get to the location. The group chose to meet in an accessible Victorian park in Salford on a reasonably good bus route and also with a car park. It is a well-maintained space which is a popular well used space with locals. It has a flat walking route which means it is accessible for wheelchair users and it has plenty of benches and resting points to support use for those who may need to rest regularly. The park also has toilet facilities and a café.

For the first group meeting in May 2018 I took my own dog, Sammy, and it was a truly lovely experience, Sammy was walked by a man who was living with dementia, and who had never owned a dog but really enjoyed the experience of walking him and having a chat. My only issue was in the café preventing Sammy eating all the biscuits put out for the group attendees!

The group lasts around 2 hours, and the walk begins from the car park. It is notable as people arrive how much they are drawn to the dogs, often ahead of the humans, reaching out to pet the dogs straining on leads to be fussed. It is a lovely sight as dogs excited for their walk wag their tails and allow people to make a fuss of them. When the group sets off it ebbs and flows as different smaller groups emerge depending on people’s speed of walking. There is also often interaction with other park users too, and dog walkers stop and chat whilst the dogs stop and sniff each other. The group attracts attention from other park users and particularly other dog walkers who are keen to know what the group is. 

Considering how often it rains in Manchester, during the time we attended the group the weather was remarkable, although there were a few dull days, we were lucky that the group was never rained off, or people kept away by bad weather. Occasionally people felt a little cold, and anyone who wanted could wait at the café for the rest of the group to arrive. Dogs were welcome in the little café, which was not open to the general public. The café was booked for the group, and the participants would be welcomed with biscuits and hot drinks and there would be treats for the dogs. The café was an opportunity to sit and chat, and also pet the dogs, and many conversations occurred in the café about the dogs, and also people would share memories of previous pets and dogs they had owned. Dogs were generally well behaved (except for the occasions Sammy came…) and would have treats, and sit obediently hopeful for another, or allow themselves to be petted by one of the group members.

As a dog lover, it is easy to see the joy of getting to attend a group like this, and especially for someone who is no longer able to have a dog of their own. The interesting thing about the group is seeing the ripple effect of dogs enabling interactions, as a good topic of conversation, to get a chat started, and with people outside of the group generating opportunities for interactions between other dog owners. The dogs created excitement, in the café, and in the park, there was an energy to the group created through the relationship between humans and dogs. 

There is a report of the evaluation and a graphic pamphlet available (illustrations by Domenique Brouwers).  Please e-mail Cathy Riley at Cath.Riley@gmmh.nhs.uk to request the report and pamphlet. 

For further information:

Dr. Sarah Campbell, Manchester Metropolitan University, sarah.campbell@mmu.ac.uk.  

Professor Andrew Clark, University of Salford, a.clark@salford.ac.uk

Cathy Riley, Open Doors Network, Greater Manchester NHS Foundation Trust, Cath.Riley@gmmh.nhs.uk

Illustrations by Domenique Brouwers: domeniquebrouwers@hotmail.com / Website: http://domeniquebrouwers.co.uk/.

Photographs taken by Sarah Campbell, Domenique Brouwers and Cathy Riley. 

Acknowledgments

This blog relates to a research study that was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NHS, the NIHR or the Department of Health and Social Care. This work forms part of the ESRC/NIHR Neighbourhoods and Dementia mixed methods study [ES/L001772/1]. It is based on work from Work Package 4. 

Insights Series (2): Dementia, Care And Covid-19:

A New Era, A New Approach?

The emergence of Covid-19 and the global public health response has sent shockwaves across human and more-than-human worlds. In this article, three members of the Multi-Species Dementia International Research Network share their reflections on Covid-19; including how it is affecting their own research, the lives of people with dementia and how multi-species approaches to dementia care may be needed now more than ever!

Dr Sarah Noone is a Research Associate at the University of York, UK
Dr Mandy Cook is an Innovation Fellow at the University of Sheffield, UK
Dr Alisa Grigorovich is a CIHR Health System Impact Fellow at the KITE- Toronto Rehabilitation Institute, University Health Network 

Q: How is the global response to Covid-19 affecting your work?

Dr Alisa Grigorovich: The global response to Covid-19 has impacted my work in several ways. Recruitment and data collection for all of my ongoing empirical studies in hospitals and long-term care settings have been halted and I am working from home on theoretical research and analysis. But I have also been able to pivot to refocus some of my research towards Covid-19 related topics. As an example, I have had the opportunity to participate in a grant currently under review to develop ethical strategies towards isolation of persons living with dementia who develop Covid-19 in long-term care homes.  

Dr Mandy Cook: Six years on from setting up the first woodland activity programme as part of my PhD research, it was, until this year, still being delivered by the fantastically enthusiastic and dedicated Forestry and Land Scotland rangers, and continued to be enjoyed by people living with dementia, their families and carers in Scotland.  The programme helped support people living with dementia not only to continue to live well within their own community but also remain valued, connected and involved members of that community1. The rangers had begun taking the woodland activities into local care homes and training staff, and it was my hope that these programmes (and associated research) could be rolled out more widely across Scotland and beyond.   Because of Covid-19 any plans for the expansion of the woodland activity programmes and associated activities have now been put on hold.

Covid-19 is believed to have first crossed into human bodies at the Huannan Seaford Market in Wuhan, Hubei
Province, China in late 2019

Dr Sarah Noone: I began working on the My Home, My Garden Story project in January 2020, with Christina Buse, John Keady, Andy Balmer, and Sarah Nettleton. The study originally involved conducting walking interviews with participants in their home gardens. However, as the Covid-19 situation escalated, with many of our participants belonging to the high-risk category, we decided to transition to remote interview methods, using the telephone, Skype, or Zoom. Though this redesign has been challenging, we have embraced the opportunity to incorporate technology into our research. Conducting walking interviews using Zoom or Skype has the potential to be an empowering method of conducting research, enabling participants to take a more active, autonomous role in the study. However, we acknowledge that these methods may prove challenging for participants who are less familiar with digital technologies. 

Q: What impact is Covid-19 and the global response to it having on people with dementia?

Dr Alisa Grigorovich: I think for the most part, the impact and response to Covid-19 has had negative consequences for persons living with dementia, their families and providers. The ageist and ableist rhetoric regarding the value of older persons with disabilities, and the subsequent insistence on the need for ‘lifeboat ethics’ has only intensified the stigma and fear around dementia. It has also contributed to discrimination towards persons living with dementia in the form of triage protocols for rationing care, the removal of “non-essential” services and intensification of poor quality of care in institutional settings. Many of Covid-19 related public health strategies such as social distancing have likely increased social exclusion and loneliness of persons living with dementia as they have led to severe restrictions on their social relationships and participation in their communities. They have also contributed to poor health outcomes for them and for staff, including death and moral distress. My hope is that the mass media and growing research attention to these negative impacts, as well as the generally poor conditions of care and work in long-term care, will inspire radical structural and work organization changes in Canada and elsewhere.

‘Shielding’ is rapidly becoming the global medium-term approach to reducing Covid-19 infections amongst older populations

Dr Mandy CookOur woodlands, parks and greenspaces are a lifeline for the wellbeing of people living with dementia, but how they are being used has changed because of strict measures introduced by the UK government to help stop the spread of the infection.  Most greenspaces currently remain open but only for individuals and households to exercise once a day, close to where they live. The social distancing guidance when outside means keeping at least 2 metres away from people who are not part of your household. Some people living with dementia are still able, with support, to access the outdoors, doing activities like ‘going on long walks near their home to keep busy and active’ or ‘walking the dog’, which help maintain routine and structure the day; but ‘many face being completely cut off from the outside world, potentially their carers, friends and family, causing them huge anxiety and distress‘ (Kathryn Smith, Alzheimer’s Society).

Dr Sarah Noone: The participants involved in our study are very socially active, attending several community-based activities for people with dementia each week. The cessation of these activities, whilst understandable, has caused distress and disappointment. Many of our participants previously shared that they could not spend as much time in the garden as they wished, due to the number of community groups they attended. We anticipate that the garden will now take on a more central role in the everyday lives of people with dementia.

Q:  In the months and years to come, how will Covid-19 shape the field of dementia studies?

Dr Alisa Grigorovich: It is possible that the mass attention to the material conditions and negative health impacts of Covid-19 on persons living with dementia and care providers will narrow the focus of the field to biomedical topics, particularly as much of the funding for research in general has been focused on biomedical aspects of Covid-19 and will continue for the foreseeable while. However, it may also prompt more attention in dementia studies towards radical ideas for how to improve the care and life of persons living with dementia, including more attention towards the divisive sacrificial rhetoric around Covid-19. My hope is that the conversations happening across multiple fields regarding ableism in the context of Covid-19 will amplify ongoing efforts in dementia studies to develop more ethical approaches of relating to and caring for persons living with dementia.

Attempts to halt the spread of Covid-19 have severely restricted access to outdoor space amongst people with dementia

Dr Mandy Cook: My PhD research showed how important spending time in greenspace and nature is for the mental wellbeing of people living with dementia in the community1and Covid-19 has brought to the fore the importance of being able to access good quality greenspace close to home.  As well as people living with dementia in their own homes, I see an opportunity to explore how connection to the wider community through green care activities (a collective term for a range of nature-based therapies) could also enable and enhance well-being benefits for care home residents.  Care home residents have been particularly vulnerable to Covid-19 as a consequence of their complex medical problems and advanced frailty (https://www.bgs.org.uk/resources/covid-19-managing-the-covid-19-pandemic-in-care-homes) It is my fear that the necessary isolation of residents during the Covid-19 outbreak may extend far into the future, and the well-being benefits a connection to greenspace and nature, including social contact and inclusion in the community, might become unobtainable for care home residents.  

Dr Sarah Noone: Many of the existing issues affecting people with dementia and their carers, such as social isolation, anxiety, and access to care support, will be exacerbated by the global response to Covid-19. In the months and years to come, the focus of dementia studies may shift to exploring the longer-term impact of the pandemic upon the emotional well-being of people with dementia, and the impact of the sudden loss of routine and support upon the well-being of care providers.

Q:  How might a multi-species approach to dementia help us to understand and respond to Covid-19?

‘Lockdown’ and ‘Social Distancing’ measures have created and restricted opportunities for human-animal interaction

Dr Alisa Grigorovich: I don’t really know as I have only just begun to engage with multi-species scholarship. The strengths of multi-species approaches is that they challenge normative ways of relating to human and non-human animals and help us to think critically about how we can live in relational ways that are more ethical and just. Applied to dementia such approaches can help us to better understand the negative impact of global health challenges such as Covid-19 on persons living with dementia by drawing attention to reductive neoliberal imperatives that result in the efforts to sacrifice some lives to secure the future of others.  Covid-19 related public health strategies have restricted human sociality on a mass scale, but have also prompted greater interest in human and non-human animal relationships, including attention to the impact of our usual life on non-human animals and the environment (e.g. media stories about decreases in pollution, free movement of wild animals across cities, etc). A multi-species approach to dementia can help us expand this interests to also attend to whether new human-animal relationships during and after Covid-19 are life-sustaining for both humans and non-human animals (including the importance of attending to the needs and preferences of non-human animals) as well as the experiences of persons living with disabilities.

Dr Mandy Cook: A multi-species approach might help to develop a greater understanding of how spending time in greenspace and nature can enable people living with dementia to successfully age in place. Research investigating the wellbeing of older people suggests ‘enriched places’ with space and time to talk in high-quality public spaces, distinctive architecture, parks and community-based activities best supports their needs 2.  A multi-species approach to investigating greenspaces as ‘enriched places’ might be used to explore how they can contribute to the provision of home and community support which may result in improved health, social participation, independence and autonomy 3

Dr Sarah Noone: Engagement with the natural world is emerging as a valuable coping strategy for much of the population, including people with dementia. A multi-species approach to dementia might enable us to understand why interaction with nature performs such a crucial role in times of crisis. The temporality of the garden can provide a grounding for understanding and responding to large-scale change. In the garden, change is visible and inevitable, from the changing position of the sun each day, to the seasonal transitions observed in the garden. Some of the changes in the garden, such as planting new flowers or weeding overgrown areas, can be influenced by our actions and decisions. Others, such as the changing seasons, are outwith our control. Thus, spending time in the garden may enable people living with dementia, and others, to develop a sense of place in a rapidly-changing world.

Editorial

(By Dr Nick Jenkins)

Human exceptionalism is founded upon the belief that the human species is distinct from (and superior to) other worldly forms of life. By making our trans-species vulnerabilities highly visible the emergence of Covid-19 has radically destabilised such assumptions.  Yet, worryingly, contemporary policy responses to Covid-19 are increasingly coming to adopt discourses of war and of mastery over nature. As an “Invisible Enemy” becomes the primary opponent in the “global fight” against coronavirus, scientific innovation and biomedical “cures” (e.g. ChAdOx1 nCoV-19) are increasingly being positioned as the gold standard response to humanity’s existential crises.

In this context, Alisa, Mandy and Sarah usefully highlight how Covid-19 presents dangers for people with dementia that go beyond the risk of contracting coronavirus. They highlight how current policy responses risk people with dementia having their lives devalued and cut short, their movements restricted and their relationships with the whole gamut of more-than-human life severely curtailed. Entangled amongst contemporary policy responses is a heady mix of paternalism, ageism, speciesism and cognitive ableism (amongst other forces) and understanding the inter and intra-actions 4 of these various elements will be a considerable undertaking in the months and years to come.

And yet, Alisa, Mandy and Sarah helpfully remind us that the emergence of Covid-19 calls forth new opportunities and new possibilities for world-making in dementia. From engaging creatively with new technologies, bodies and spaces to better recognising structural inequalities in dementia care, entangled within our responses to Covid-19 may be new ways of recognising interconnectedness and new ways of cultivating response-ability 5 in dementia. Arguably, the need for multi-species theorising, policy and practice in the field of dementia care has never been greater.

Join the Conversation

Please share your images, thoughts and reflections on the implications of Covid-19 for multi-species dementia studies, via our Dementia, Care & Covid-19 Padlet.

Please note: This Padlet is password-protected and only accessible to member of the Multi-Species Dementia Research Network. Please click here if you would like to join the network, or alternatively, select the Get in Touch tab above.

About the Authors

Dr Alisa Grigorovich is a CIHR Health System Impact Fellow at the KITE- Toronto Rehabilitation Institute, University Health Network and a member of the Multi-Species Dementia Research Network. For further details about Alisa’s work and current research interests, please visit their profile page.

Dr Mandy Cook is an Innovation Fellow at the University of Sheffield. For further details about Mandy’s work and current research interests, please visit their profile page.

Dr Sarah Noone is a Postdoctoral Research Associate at the University of York. For further details about Sarah’s work and current research interests, please visit their profile page

Dr Nick Jenkins is a Senior Lecturer in Sociology & Social Policy at University of the West of Scotland, and Co-Convenor of the Multi-Species Dementia Research Network. For further details about Nick’s work and current research interests, please visit their profile page

References

1 Cook, M. (2019) Using urban woodlands and forests as places for improving the mental well-being of people with dementia. Leisure Studies DOI: 1080/02614367.2019.1595091

2 Gilroy R. (2012) Wellbeing and the neighbourhood: Promoting choice and independence for all agesIn: Atkinson, S., Fuller, S., Painter, J, ed. Wellbeing and Place. Abingdon: Ashgate, 2012, pp.73-88.

3 Sixsmith, J; Fang, M.L; Woolrych, R.; Canham, S.L.; Battersby, L. & Sixsmith, A. (2017) Ageing well in the right place: partnership working with older people. Working with Older People, Vol. 21 No. 1, pp. 40-48. https://doi.org/10.1108/WWOP-01-2017-0001

4 Barad, K. (2007) Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham: Duke University Press.

5 Haraway, D. (2016) Staying with the Trouble: Making Kin in the Chthulucene. Durham: Duke University Press.