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

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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

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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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