Researchers have found that older people, people living with dementia and people living with long-term conditions such as diabetes, across Europe, have had similar experiences during the Covid-19 pandemic and lockdown. 

Three research teams from Canterbury Christ Church University’s Faculty of Medicine, Health and Social Care, working on three different Europe wide projects, also discovered that the Covid-19 crisis heightened awareness of, and connection between, health and social inequalities.

CASCADE, DWELL, and EMPOWERCARE are social innovation projects that aim to find solutions to current and complex health and wellbeing concerns. The role of academics from Canterbury Christ Church in all three projects is to evaluate the impact of, and learning from, each of the social innovations.

CASCADE is a person-centred approach aimed at making local services more efficient and effective in addressing challenges in dementia care. DWELL is a holistic approach to empower people with type 2 diabetes to better self-manage their condition through an educational programme. EMPOWERCARE is developing a community asset-based approach to care, responding to current gaps in the care of people aged 65+ and those aged 50+ and living with a long-term condition.

Dr Toni Wright is a Principal Lecturer for the England Centre for Practice Development, based at the University, and is also a member of the CASCADE and EMPOWERCARE project groups. Speaking on behalf of the researchers, she said: “It has been well documented that the number of older people is increasing globally. People living with long-term conditions such as diabetes and dementia are likewise increasing. Older people and people living with dementia are often negatively impacted by Covid-19 related restrictions and lockdowns. We also know that older people, those living with long-term conditions, and Black, Asian, and minority ethnic (BAME) people are also at higher risk from Covid-19 infection.

“As a group we noticed that by sharing our observations and experiences across our European projects during the coronavirus pandemic we were able to build a greater knowledge and understanding that can inform care strategies and best practices. Together our work can also act as a catalyst for building wider solidarities during the crisis and beyond, because it allows us to see that those most at risk of experiencing health disparities are also those most at risk of experiencing wider social inequalities.”

Partnerships across the projects have reflected on the usefulness of existing and developing social innovations to respond to social, health and care needs in a pandemic. CASCADE partners are collating the Covid-19 crisis lessons learnt to adapt the CASCADE approach to dementia care. DWELL partners are sharing useful resources, both for people with type 2 diabetes as well as the facilitators who are supporting them, and collating feedback from participants about how lockdown restrictions have impacted on their ability to attend medical appointments and sustain lifestyle changes.

The EMPOWERCARE project partners (mostly older people’s community care providers) from all four countries involved (Belgium, France, the Netherlands and UK) have produced a document called Learning from a Crisis, a reflection of some of the issues they have observed, and their service users have experienced during the Covid-19 pandemic. The document has enabled the project partners to share information and challenges from different perspectives and contexts.

A common theme documented by EMPOWERCARE partners in Belgium, the Netherlands, and UK, was older people experiencing worry about catching Covid-19 and the increased risks associated with that. A Belgium partner said: “Anxiety about becoming infected, knowing that you’re at high risk is a stressful thing.”

There was also concern about lockdown restrictions and how they bring greater isolation, loneliness, and reduced social networks, amplifying existing experiences. Apprehension about everyday practicalities was also reported, such as how to get medication and health items i.e. incontinence pads, accessing GPs, doing shopping, keeping the house clean, accessing money and benefits, and continuity of home help services.

EMPOWERCARE partners expressed concerns and an urgent need to respond to the impact of long periods of lockdown without physical and cognitive stimulation on older people’s physical and mental health. Technological solutions were seen as important to counter this in the Learning from a Crisis document, and especially those that enable social connections with friends, family, and carers.

One EMPOWERCARE Netherlands partner found through a survey of local welfare organisations that telephone, WhatsApp, Zoom, and Google Meet were popular, whereas in France Skype and digital newsletters worked well. However, take up and engagement with technology differed. One UK partner told us that older people with strong links to their community and access to video calling, social media, online medical/social care request forms, online classes and games have embraced the prompt from lockdown to learn and gain confidence in using technologies not previously used. But not all older people have those strong links or access. In the Netherlands some preferred to find in-person solutions to restricted socialising. These included garden conversations and other physically distanced meet ups.

The French EMPOWERCARE partner reported some positive responses to the crisis, such as greater community support networks and neighbourhood solidarity. They reported: “I was able to interview elderly people who saw a surge of solidarity around them! Much more than usual…..The society became aware of the need to help the most vulnerable and organised itself to make visits (on the doorstep), go shopping, go to fetch medicines…..The daily life of many people who are usually isolated has been transformed by this impetus.”

People living with dementia can be particularly negatively impacted by lockdown restrictions because wandering, touch and sensory experiences may be curtailed, and the use of masks by carers obscuring facial features can cause anxiety or distress.

People living with dementia and people living with diabetes are considered to be at higher risk of developing complications from Covid-19 infection yet protecting them can be experienced as being locked up rather than a choice to self-isolate. Older people have also experienced a sense of being forgotten. A reflection from Belgium on this was that ‘the elderly deduct that they seem to be expendable’.

Dr Wight continued: “Understanding the evidence from the EMPOWERCARE Learning from a Crisis document allows us to see that one size does not fit all, and that there are different experiences happening during coronavirus times depending on situation and circumstances.

“When the Canterbury Christ Church EMPOWERCARE project team looked at the evidence coming from the project they observed that people at heightened risk from Covid-19, whether they are older people as in the EMPOWERCARE project, or as in the CASCADE and DWELL projects people living with long term conditions such as dementia or diabetes, may be living with one or numerous risk factors. Importantly, all these people should not be defined only by those risk factors because they are people living complex and multi-layered lives. For example, they are from LGBTQ+ communities, have diverse racial and ethnic backgrounds, different spiritualities, and experience varying economic circumstances.

“The Covid-19 crisis has heightened awareness of health disparities and their connection to social inequalities. As a result, we have seen action for change across the globe around, for example racial justice and equality, and an end to poverty, ageism, and domestic abuse.”

CASCADE, DWELL and EMPOWERCARE are funded by the Interreg 2 Seas European Territorial Cooperation Programme. The Programme is part-financed by the European Regional Development Fund.

Project researchers from the Faculty of Medicine, Health and Social Care: Professor Eleni Hatzidimitriadou, Professor Chris Burton,  Dr Pat Chung, Sharon Manship, Anne Martin, Dr Rachael Morris, Paula Kuzbit, Dr Ann Price, Dr Raymond Smith, Dr Maria Stein, Thomas Thompson, Dr Gemma Wells and Dr Toni Wright.

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