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.

Insights Series (1): Seeing Multi-Species Dementia Care in Action

By Dr Anna Jack-Waugh

Dr Anna Jack-Waugh is a Senior Lecturer in Dementia at Alzheimer Scotland Centre for Policy & Practice at UWS.

In August 2019 myself and Julie Garton gained funding from the General Nursing Council for Scotland, and we joined by Mandy Cowan from Alzheimer Scotland for a study tour to the Netherlands to visit Green Care Farms. Green Care Farms for people with dementia are small home-like settings with engagement with farming activities integral to the systems and processes of care delivery. Offered as an alternative to traditional long-term care models, research into Green Care farms have demonstrated the ability to provide a person-centred, meaningful and nurturing environment for people with dementia. 

We visited our hosts, Dr Simone de Bruin, from the National Institute for Public Health and the Environment (RIVM), Center for Nutrition, Prevention, and Health Services and Jan Hassink Wageningen University. They kindly shared how the Green Care Farm places for people living with dementia are commissioned, organised, regulated and researched across the Netherlands. Dr de Bruin and Jan Hassink also supported visits to the Green Care Farms day and residential services across the Netherlands.

Looking after the sheep

At the care farms, we saw people come by minibus and spend most of the day involved in farming activity. People chose what they wanted to do that day, from collecting eggs, harvesting fruit and vegetables or caring for an array of animals. In caring for the animals, the people living with dementia experienced the opportunity to increase their physical activity, develop relationships with each other and the animals and gain a sense of accomplishment focused on mutual caring between people and animals and people and people. 

Mucking out the goats

The talents, skills and attributes of those attending were paramount and given priority. We observed an enabling approach in action where the days were constructed around what needed doing and a person-centred choice of activity. We saw people living with dementia who appeared fit and supple. They engaged in their work with low-level supervision working alongside each other, the animals and volunteers. When they did have additional physical support needs, these were supported creatively. 

The people we met were at different stages of their journey; however, most were experiencing moderate to severe dementia. The focus on peoples talents and attributes, the fostering of relationships, socialisation, meaningful activity and physical health benefits, all cumulated to an environment that felt warm, welcoming and happy. We were privileged to see older people active and engaged in predictable, flexible and reliable farm-focused routines. 

Bringing in the vegetables for a hearty lunch

Reflections

The Green Care Farms demonstrated that the animals are a small part of the social environment which a farm or any place caring for animals can provide for people living with dementia. Relationships with the farmers and with peer people living with dementia also contributed to the therapeutic environment. Our next steps are to see if some of the benefits of the underpinning theory to Green Care Farming can be replicated in Scotland and lead to the benefits observed on the study tour. 

Kirsty the dog and Betty and Custard the cats in their usual place in Scotland

The Green Care Farms emerge from a social enterprise approach in the Netherlands and give an additional option for daycare services for people living with dementia and other client groups. Funded by the municipalities under contract, the Green Care Farms also provides the farmer with a single or additional funding stream. Green Care Farms are embedded in their local communities. Scotland has 20,000 smallholdings, farms operating on 50 acres or less, with farmers who could consider Green Care Farming as a possible future income stream contributing to increasing the community-based care options for people living with dementia. 

Any future developments in community care options for people with dementia could contribute to the education of health, social care, animal care and farming professionals by providing practice placements. Supporting professionals to develop creative and flexible approaches to care in their early education which reflect the lives and loves of people with dementia could result in reciprocal living and learning for everyone one.

Experiencing the tour reminded me of the implicit knowledge and skills I possess and which resurfaced. I had forgotten the nuances and joys of my early rural life; yet I remembered how to close and lock a gate quickly, how to hand feed the animals, how to talk to the animals and recognised crops and planting patterns in the landscapes. Animals have always been a part of my life, and they are everpresent now. This tour confirmed my wish as part of this network to enable people with dementia now and in the future to have animals continue to be part of our lives.

Further information

Simone de Bruin outlining her research work. https://www.youtube.com/watch?v=dVXyswGlM-4

de Bruin, S, R., Stoope, A., Molema, C, C, M., Vaandrager, L., Hop, P, J, W, M., Baan, C, A. (2015) Green Care Farms: An Innovative Type of Adult Day Service to Stimulate Social Participation of People With Dementia. Gerontology & Geriatric Medicine. Jan-Dec, 1-10.

de Bruin, S. R., Oosting, S. J., Tobi, H., Blauw, Y. H., Schols, J. M. G. & De Groot, C. P. G. (2010). Day care at green care farms: a novel way to stimulate dietary intake of community-dwelling older people with dementia? Journal of Nutrition, Health & Aging, 14, 352-357.

de Bruin, S. R., Oosting, S. J., van der Zijpp, A. J., EndersSlegers, M. J., & Schols, J. M. G. A. (2010). The concept of green care farms for older people with dementia: An integrative framework. Dementia, 9, 79-128.

Dementia: Towards A Multi-Species Approach

As Ritvo (2007) highlights, the ‘animal turn’ within the humanities & social sciences is leading to non-human life becoming incorporated within disciplines that have, traditionally, focused on studying humans and human societies (e.g. history, sociology, psychology) . This is leading to innovation across disciplines, expanding research into new areas and suggesting new relationships between researchers and their subjects . Whilst this is the case, research within the field of dementia studies has been slow to explore our ‘zoological connections’ (Bryant, 1979). In this post, we make the case for a multi-species approach to dementia by outlining five areas of understanding that would benefit from greater consideration of the more-than-human world.

Understanding Personhood in Dementia

Understanding the impact that conditions such as Alzheimers disease have on a person’s sense of self and their ontological status as Persons has been at the heart of dementia studies since the word ‘dementia’ was first introduced within modern-day psychiatry in the late 18th century. Early pioneers of dementia care, such as Philippe Pinel (1745-1826) and William Tuke (1732-1822) sought strenuously to resist the animalisation of ‘the insane’ that was characteristic of pre-modern medical practice (Foucault 1964/1988; Scull 1979). Drawing on John Locke’s (1689) understanding of Persons as sentient beings capable of reason, reflection and self-awareness, these pioneers sought to highlight their patients’ enduring Personhood and, thus, the efficaciousness and moral imperative of treating patients with dignity, care and respect.

Emphasising the humanity of people with dementia as the basis of ethical treatment has continued to find expression throughout the last two hundred years of dementia studies – especially through the rise of the Personhood Movement during the 1990s (e.g. Kitwood 1997) and the Human Rights Based Approaches of the early 21st century (e.g. Bartlett & O’Connor, 2010). Whilst this is the case, writers such as Rosi Braidotti (2013) and Carey Wolfe (2003; 2010) have been highly critical of such ‘compensatory’ approaches within the liberal humanist tradition, which they argue, seek to enfranchise groups that have been previously excluded from the Personhood Club whilst at the same time, re-producing normative assumptions of Personhood that come to position people with disabilities as outside of the Personhood Club to begin with.

In this context, the rise of multi-species approaches to Personhood may provide an alternative to the logic of human exceptionalism, as a vehicle for positioning persons with dementia as sentient Beings deserving of moral consideration. In contrast to liberal humanism, multi-species perspectives have tended to emphasise the ways in which Personhood emerges through the connections – or ‘entanglements‘ (Barad, 2007) – of human and non-human life. That the average human, for example, is thought to inherit over 100 genes of non-human origin and that the human microbiome houses around 39 trillion non-human cells has lent increasing support to this ‘symbiotic view of life’ (Gilbert, Sapp & Tauber, 2012) – challenging liberal humanist understandings of Persons as autonomous ‘individuals’ and resonating with non-Western philosophical understandings of Personhood, such as Inter-Being (see: Thich Nhat Hanh, 2017) and dividuality (see: Strathern, 1988).

Exploring the implications, for dementia studies, of a multi-species approach to Personhood is a considerable under-taking. However, what such an endeavour may enable us to do is move beyond reliance upon both essentialism (i.e. the claim that Personhood in dementia exists, a priori) and social constructivism (i.e the claim that Personhood in dementia exists, a posteriori) as frameworks for affirming the ontological status of people with dementia. In so doing, it may enable us to better explore important corollaries of Personhood in dementia, such as agency, as neither intrinsic characteristics nor as socially constructed abilities, but, rather, as the product of complex intra-actions (Barad, 2007) involving human and more-than-human, as well as both material and discursive, forces.

Understanding the Role of Animals in Dementia Care

Prior to the animal turn in the humanities and social sciences, the rise of the Animal Assistance movement during the 1970s and 1980s led to rapid increases in the use of non-human animals (most notably dogs) within health and social care settings. Today, pioneering initiatives such as the Dementia Dog Project in Scotland and Dogs 4 Dementia in Australia are prompting renewed interest in the potential for animals to facilitate health and wellbeing in dementia. Whilst this is the case, Arluke (2003) highlights a lack of theoretical depth and empirical rigour in existing studies into animal assistance programmes and suggest that ethnozoological research could usefully contribute to the development of this field of practice.

One of the ways in which this could be achieved is through research exploring the experience of animal assistance from the perspective of assistance animals themselves. As Arluke & Sanders (1997) argue, gaining insights into the perspectives of non-human animals is difficult, but not impossible, and seeking to do so compels researchers to draw upon a range of techniques and methodological approaches. In this context, and as Arluke & Sanders (1997) note, researchers could usefully draw upon techniques used to explore the perspectives of non-verbal humans, including techniques developed to explore the perspectives of people living with advanced forms of dementia. Combining techniques associated with, for example, ethnozoology, ethology and dementia studies has the potential to stimulate methodological innovation across the disciplines and provide valuable insights into how animal-assisted care in dementia may be experienced from human and non-human perspectives alike.

Equally, multi-species research into animal assistance programmes may provide useful insights into the nature of care itself. As Martin, Myers & Viseu (2015) and Puig de la Bellacasa (2012) highlight, care is  a slippery concept and is not to be confused with notions of kindness, or of benevolence.  Definitions of care vary considerably across-and-within disciplines, ranging from the generic, as for example, ‘everything we do to maintain, contain, and repair our “world” so that we can live in it as well as possible‘ (Tronto & Fischer, 1990 p. 40) through to the critical, such as, ‘a selective mode of attention [which] circumscribes and cherishes some things, lives, or phenomena as its objects [and] in the process … excludes others‘ (Martin et al. 2015, p.627). Whilst understandings of care vary considerably and reflect a diversity of theoretical and methodological perspectives, the vast majority of research exploring the nature of care in dementia has tended to focus on human-to-human interactions. In this context, advancing more multi-species understandings of care, such as ‘entangled empathy‘ (Gruen, 2015) and ‘trans-species being-in-the-world‘ (Wolfe, 2010) may provide useful frameworks for better understanding the dynamics of multi-species care assemblages, including, for example, the processes, mechanisms and outcomes associated with contemporary ‘dementia dog’ programmes.

Understanding Dementia-Related Forms of Violence & Discrimination

Whilst a multi-species approach has potential to deepen our understanding of care in dementia, such perspectives also has the potential to help us explore the under-side of care; namely, the factors that lead to violence, abuse and neglect in dementia.

Across the world, people living with dementia are subjected to some of the most extreme forms of physical, psychological, emotional and cultural violence.  A recent review of prevalence studies, for example, suggested that up to three quarters of people with dementia may experience some form of abuse over the course of their dementia journeys (Fang & Yan, 2018). In addition, many more are likely to experience less-extreme forms of symbolic and cultural violence; such as ‘prescribed disengagement’ (Swaffer, 2015), institutionalised boredom (e.g. Boyd et al., 2014) and chronic loneliness (e.g. Alzheimer’s Society, 2013). Taking a multi-species approach into the ‘shadows’ of dementia may help us to understand the root causes of dementia-related violence and to develop practical strategies for action.

Animal sociologists working within the ‘new sociology of violence’, for example, have highlighted how ‘animalising’ forms of discourse have been instrumental in justifying violence, as well as how the oppression of humans and violence towards animals have historically intersected (see, for example: Cudworth 2015; Nibert, 2003; Taylor & Sutton, 2018). This body of work reminds us that we cannot reduce our focus solely to violent behaviours committed by a minority of ‘disturbed’ individuals but, rather, we need to understand the ideological belief systems that serve to propagate, perpetuate and legitimate violent acts. Researchers working from overtly animal rights perspectives, for example, have highlighted the ways in which the non-criminal putting to death (Derrida, 1991) of non-human animals has become legitimised, institutionalised and normalised within Western post-industrial societies. Melanie Joy (2009) for example, explores the everyday logic of Carnism as a widespread yet largely invisible belief-system that enables certain animals (e.g. pigs, cows and chickens) to be positioned as disposable and others (e.g. cats, dogs) as cherished pets off-limits to the food industry. Whilst research within critical disability studies has started to explore connections between such forms of speciesism (as discrimination against certain animals based on assumptions of human superiority) and ableism (as discrimination against disabled people based on assumptions of able-bodiedness) such perspectives have yet to be developed within the burgeoning area of critical dementia studies.

Research from less-critical perspectives could usefully explore connections between animal cruelty and interpersonal violence in dementia. For example, whilst it is commonly assumed that animal cruelty may be a pre-cursor to violence against humans (the so-called Violence Graduation Hypothesis), empirical research has cast doubt on the strength of this proposed correlation (see, for example, Arluke et al., 1999). Whilst this is the case, research into domestic violence has highlighted the ways in which domestic abusers may injure, or threaten to injure, household pets as a means of maintaining coercive control over family members (see, for example, Flynn 2001; Faver & Strand, 2003). Clearly, the connections between animal abuse and interpersonal violence are complex, and the dynamics shaping such connections are likely to be both multi-faceted and contextual. As such, multi-species dementia research could usefully help us to understand better, the connections between animal cruelty and interpersonal violence in dementia, including (but not limited to): the extent to which known abusers of people with dementia may have ‘graduated’ from abusing animals; whether abusers of people with dementia animalise their victims; and, how stress in dementia may manifest itself in the abuse and neglect of family pets.

Understanding Neurocognitive Disease & Treatment

The G7 governments are committed to identifying either cures or disease modifying forms of therapy for dementia by the middle of the 21st century. This has resulted in dementia being placed towards the top of the global public health agenda and to significant amounts of funding being made available for biomedical and pharmaceutical research. Within this area of dementia studies, our entanglements with non-human animals presents complex ethical questions regarding the use of animals within dementia research as well as important opportunities for developing less-anthropocentric, more multi-species understandings of dementia’s disease pathology.

According to the UK’s Alzheimer’s Society (2017), the use of animals in dementia research has been instrumental in improving our understandings of neurocognitive disease and in developing new forms of treatment, such as deep brain stimulation for Parkinson’s Disease. Whilst funders such as the Alzheimer’s Society tend to subscribe to the 3R principles (replacement; refinement; reduction) for reducing reliance on animals in dementia research, emerging fields, such as neuroprosthetics, rely heavily on the use of animals such as laboratory rats and primates in the development of prosthetic implants that may one day be capable of restoring ‘normal’ cognitive function in people with dementia (see, for example, Hampson et al., 2012). Notable trans-humanists such as Thedore Berger have been at the forefront of these new frontiers in technoscience and their influence presents important opportunities for multi-species dementia research to connect with Science & Technology Studies (STS) in exploring the role animals have played, and continue to play, within biomedical and techno-scientific understandings of dementia.

Alongside the somewhat thorny issue of the use of animals in biomedical dementia studies, research is presenting important opportunities for cultivating multi-species understandings of neurocognitive disease and its affects. Research within veterinary medicine, for example, has been instrumental in highlighting similarities in disease pathology between Alzheimer’s disease in humans and Cognitive Dysfunction Syndrome (CDS) in companion animals, such as dogs and cats. Alongside the potential to develop new forms of treatment, these insights offer opportunities to broaden our understandings of dementia and its sequelae in ways that reach beyond the human condition. Whilst it would be a crass oversimplification to suggest that the experience of CDS in non-human animals may be considered analogous with the experience of dementia in humans, exploring the ways in which neurocognitive disease progression is experienced across species offers the potential to inject new insights into established debates within the field; such as the relationship between disease progression and the ‘loss of self’ in dementia (e.g Sabat & Harre, 1992; Davies, 2004). For example, working from the assumption that Mind is a social accomplishment, rather than an intrinsic characteristic, Arluke and Sanders (1997) explore the ways in which pet owners construct the ‘selves’ of domesticated animals within everyday settings, through speech-acts such as speaking-for, excusing and triangling. These symbolic interactions could usefully be explored in relation to how pet owners maintain the ‘selves’ of animals living with CDS, especially as Arluke & Sanders argue such techniques are remarkably similar to those observed in carers of people with advanced forms of dementia. In a similar vein, ethological research may provide valuable insights into how animals experience CDS, relate to other animals with CDS, and how such behaviours may converge with or diverge from those of their human counterparts.

Towards a Sustainable Future

In the absence of cures or disease modifying therapies (see above), current estimates suggest that up to 135 million humans may be living with dementia across the globe by the year 2050, (Alzheimer’s Disease International, 2013). Global population ageing is fuelling such dramatic increases, and is occurring across countries in the Global South at a much more rapid pace that has been observed within the post-industrial North (UN DESA, 2017). Parallel to changes in the human population, the earth’s climate is changing rapidly and, according to the Intergovernmental Panel on Climate Change (IPCC, 2018), the chances of limiting climate change to 1.5 degrees celsius above pre-industrial levels are becoming increasingly challenging. Whilst the IPCC argues that limiting climate change goes hand-in-hand with the drive to create a more equitable and sustainable global community, recent developments in global dementia policy (e.g. WHO 2017) make surprisingly few connections to wider issues of ecological sustainability or to ‘planetary justice’.

In contrast, contemporary global dementia policy has tended towards an overtly human-rights based approach. As D’Souza (2018) usefully highlights, whilst the language of human rights is widely associated with the new social movements of the late 20th century, including the ’emergent modes of dementia activism’ (Bartlett, 2014), the language of human rights is not new and arguably, was far more radical when it was first introduced during the late-18th century. Charting the associations between rights-based discourse and the appropriation of land from indigenous communities during the 18th and 19th centuries, D’Souza usefully questions our contemporary reliance on the language of (human) rights as a panacea for social ills and as the primary vehicle for achieving greater social justice.

In this context, multi-species researchers with an interest in global dementia policy could usefully explore alternative frameworks to those currently favoured by the global epistemic community in dementia. Besthorn (2014) for example, argues for a Deep Ecology approach to social work policy and practice, based on deep respect for and affinity with all beings, derived at through understandings of our shared vulnerability and mutual interdependence. Hanrahan (2014) in contrast, offers a re-formulated approach to the One Health agenda as a policy framework capable of developing more integrated approaches to human, animal and planetary health. Drawing on ecofeminist perspectives, Gruen (2015) argues for an approach to policy and practice rooted in an ethic of entangled empathy, in which the engaged exploration of the positions of Others (including non-human animals) cultivates new and situated forms of response-ability.

What each of these approaches share is an attempt to locate issues of human health and social justice within a broader web of planetary relations. This, at its heart, involves challenging the logic of human exceptionalism (which has been something of a double-edged sword in dementia policy over the last two centuries) and mechanistic understandings of the planet as consisting of non-vibrant resources intended primarily for human consumption and exploitation. In so doing, these ‘multi-species’ frameworks offer dementia studies the potential to look beyond human rights in the development of a sustainable and socially just policies. Exploring, for example, what a Deep Ecology approach to the creation of ‘Dementia Friendly Communities’ might look like is an exciting prospect and one that environmental and dementia researchers could usefully explore, together.

Conclusion

The development of multi-species approaches to dementia studies is at an early stage. As such, what is described in this post is not intended to serve as a definitive platform for future research, nor a manifesto for policy and practice. Rather, by identifying some tentative areas in which a multi-species perspective may enhance our understandings, we hope to broaden our conceptual lenses (Bartlett & O’Connor, 2007) in ways that more fully and accurately acknowledge the role of the more-than-human world in our understandings of, and responses to, dementia.

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