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.

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