Supporting family carers of people living with dementia in a pandemic

Posted by Mark Parkinson, PhD in Health Psychology, Northumbria University

Social coping: offering family carers a lifeline in turbulent times

Despite our enduring efforts to battle COVID-19 and the headlines and attention the pandemic rightly warrants it is important not to lose sight of some of the separate public health issues which not only continue to grow apace in the background but may also be made worse by the social impact of the virus. Among the issues in danger of being overlooked is how the UK will respond to the growing number of people living with dementia which is set to reach one million by 2025.¹

Presently, family carers provide the bulk of care and reliance on family care is becoming even more essential given the lack of formal care available² and the Europe-wide shift away from reliance on formal care and towards ‘ageing in place’/ care in the community.³ However, a key issue is the high level of long-term stress family carers have to endure⁴ as a result of dealing with a combination of financial, social, mental and physical challenges over long periods of time and how this often leads to family care becoming unsustainable with reliance on formal care the only option. Family carers currently face a vicious cycle that threatens to derail family care itself-despite the wishes of carers and carees:

A key question is how this cycle can be avoided. Crucially, it is not the stress that threatens to derail family care, but how well family carers can COPE with stress. A critical coping strategy is carers’ capacity to seek out and receive effective emotional and practical support, particularly at times when they are most in need of it. This kind of coping strategy is called social coping (SC) and has been found to be effective in safeguarding mental health⁵ due to the positive interactions, support and assistance it can deliver.⁶

However, there is a pressing need to better understand what works to promote social coping. This calls for a deeper understanding of what helps or hinders SC and how this knowledge can be applied by providers of formal health and social services, together with the voluntary and charity sectors to promote social coping to make the family care of people living with dementia sustainable.

What we did

Our research, based on work carried out as part of a Fuse sponsored studentship, investigated ‘What works to support family carers of people living with dementia’. Coping⁷ and more specifically social coping⁸ was identified as important to ‘what works’ and this prompted follow-up post-doctoral research to investigate SC further. The findings (so far) can be found in our recently published article⁸ which highlights the need for formal providers to be aware of six key hindrances to family carers’ use of this important coping strategy:

Achieving a better balance between what helps and hinders the adoption of social coping is critical to promoting it and also pivotal to ensuring the long term sustainability of family care of people with dementia. The full report⁸ (briefly outlined here) was presented by the Chairman of Dementia UK to Helen Whately, the Minister for Care at Department of Health & Social Care, on 3 November. This is a work in progress and follow-up is already underway to reveal further insights into social coping theory. For example, how social coping might be used alongside other helpful coping strategies, the pinpointing of carer coping strategies that could be unhelpful in the long term, and the deeper exploration of how providers (health & social care, allied health care services and voluntary organisations) can put social coping into practice, including improving opportunities for carers and carees to socialise.

In the current climate it has never been more important to deepen our knowledge of coping and to separate carer coping strategies which are helpful, and lend themselves to making family care sustainable, from those that are unhelpful. Providing long-term family care for people living with dementia has never been easy, but the arrival of COVID-19 means family carers now need the additional lifeline of improved external support and the right incentives to accept this support⁹ if they are expected to navigate especially turbulent waters.



References

1. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A. & Rehill, A. (2014). Dementia UK: Update Second Edition. Report produced by King’s College London and the London School of Economics for the Alzheimer’s Society. Retrieved from: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf 
2. Alzheimer’s Society. (2020). Facts for the media. Retrieved from: https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
3. Glasby, J., & Thomas, S. (2018). Understanding and responding to the needs of the carers of people with dementia in the U.K., U.S. and beyond. Birmingham: University of Birmingham Press.
4. Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International psychogeriatrics/IPA, 26(5): 725.
5. Norris, F. H., & Stevens, S. P. (2007). Community resilience and the principles of mass trauma intervention. Psychiatry: Interpersonal and Biological Processes, 70(4): 320-328.
6. Lee, C. Y. S., Anderson, J. R., Horowitz, J. L., & August, G. J. (2009). Family income and parenting: The role of parental depression and social support. Family Relations, 58(4): 417-430.
7. Parkinson, M., Carr, S. M., Rushmer, R., & Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health. DOI:10.1093/pubmed/fdw100.
8. Parkinson, M., Carr, S.M. & Abley, C. (in press). Facilitating social coping-‘seeking emotional and practical support from others’-as a critical strategy in maintaining the family care of people with dementia. Journal of Health & Social Care, 00:1-12. http://dx.doi.org/10.1111/hsc.13159 
9. Egan, K. (in press). Digital technology, health and wellbeing and the COVID-19 pandemic: it's time to call forward informal carers from the back of the queue. In Seminars in Oncology Nursing. https://doi.org/10.1016/j.soncn.2020.151088

Does reaching the ‘hard-to-reach’ mean leaving traditional academia at the door?

Angela Wearn, PhD Researcher, Department of Psychology, Northumbria University

“You tend to find the ones that are protesting and telling you to go and get your smears are the ones that have their cushy little jobs and that lovely flash car that they can just jump in and dive down to the doctors”

From all the conversations I’ve had throughout my research career, this is one of the quotes that has stuck with me the most. For over three years I have been working on my doctoral research, conducted across Newcastle, which explores barriers to cervical screening participation in areas of high relative deprivation. We know that uptake rates tend to be lower in areas of socioeconomic disadvantage, but reviewing existing literature showed very little insight from women who lived within these communities themselves. Incidentally, I am one of these women. I grew up, and still live, within a neighbourhood which, according to the Index of Multiple Deprivation, falls within the 10% most deprived areas in the country. It’s therefore no accident that I ended up with a programme of research which aimed to prioritise the voice of this community.

Graffiti walls can be a simple and effective way of starting conversations

Initially, I had dreams of a wonderfully participatory project, where I formed a steering group and we worked together to find answers and seek solutions. As often happens in research, time ticked on and it didn’t work out the way I had planned. My participatory ideals had to take a backseat for a less time-consuming participant-researcher approach. I suspected my ‘insider’ status might open doors for me and to be fair, it did. I found myself being able to quickly connect and build a rapport with others when I discussed my own background and why I wanted to do this project. However, getting to the point of even having these conversations was by no means easy. I spent days, weeks, months trying to speak to community groups, charities and community members about my research. Some were very open and interested, others were not. I attended community get-togethers handing out cakes alongside research information, making ‘graffiti walls’ with post-its, even chatting about life over freshly made biryani at a cookery club. Actually, these were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me. I also began to feel my status as an academic researcher was a hindrance to what I was aiming to do at community level. For a lone PhD researcher, bringing together these two worlds, at times, felt completely impossible.

"community get-togethers...were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me"

Attending community events was a great way to connect with 

people who were otherwise unfamiliar with research

The quote at the beginning of this blog was when it all clicked into place. Although we were talking about cervical screening, I acknowledged something that I had already known all along - the same issues of accessibility and trust apply to involvement with academic research. If I put my working-class hat on for a minute, academic research feels neither accessible nor promotes interpersonal trust. From the outside, academia appears to be filled with people who think they know better than you, patronising you, sometimes even using you to showcase the poor decisions people make in life. I had to work hard to reassure people that I wasn’t there to pass judgement on their screening status. I’m still not sure many believed me. ‘Eat a healthy diet’, ‘Stop smoking’, ‘Engage in physical activity’, ‘Attend your screening appointments’. These are the messages that come through, focusing on the individual and discounting all the structural and social barriers that exist for people living in communities like mine. If you are trying to figure out how to afford the weekly food shop, the kids have come home with a tear in the coat you only bought a fortnight ago and you’re worried about not getting enough work from your zero hours contract, there is no mental space for ‘living your best life’ (and certainly no space for sitting with a stranger from some university taking part in a research study).

Those living in socioeconomically disadvantaged areas are often described as ‘hard-to-reach’. This often implies that despite best efforts to reach out, these groups are disinterested and disengaged. I tend to believe the reverse is true. Some groups are hard to reach because academic research is too disengaged from the community. I know of many academics who are so obviously committed to tackling the avoidable and unjust disparities in health, and for this reason I do feel positive for the future. However, as someone who is positioned in between the ivory towers of academia and the working-class neighbourhoods at home, I know there is still a lot of work to do. There is a long history of mistrust and marginalisation to put right. If we are serious about tackling inequality and involving so called ‘hard-to-reach’ groups in research, then we need more focus on developing trust and togetherness…and occasionally, this might mean leaving traditional academia at the door.

Could collective community power direct future public health research?

Guest post by Liam Spencer, Research Assistant, Institute of Health & Society, Newcastle University

The Tyne & Wear Citizens are a local division of Citizens UK, a community organising group, which comprises of schools, universities, faith groups and charities. The group launched a ‘Commission on Mental Health’, which aimed to map problems, and identify solutions around mental health services in the region. In early 2018, The Tyne & Wear Citizens approached AskFuse [Ed – Fuse’s responsive research and evaluation service] in order to identify researchers to contribute to the analysis and production of their final report, ‘Living Well: Mental Health and Public Life in the North East’.

Through Professor Eileen Kaner (Newcastle University/Fuse), I had previously been involved in another AskFuse-supported project called ‘PROMOTE:NE’, which looked at young people’s mental health across the North East, and we met with Dr Peter van der Graaf and Lesley Haley from AskFuse to discuss this piece of work. Following this, I met with Revd Dr Simon Mason and Dr Joe Barton from the Tyne & Wear Citizens, and they were very happy to have me working with them, with supervisory support from Eileen.

The Commission had collected over 300 individual written ‘testimonies’ from people across the region, who articulated what was good, and what was not so good about mental health services in the region. It was these testimonies, which formed the basis of the Living Well report, and helped shape what the Citizens were asking local politicians and organisations to commit to. Prior to being involved in this piece of work, I had no understanding of what community organising was, and initially it was a challenge to grasp the concept of what the Commission were aiming to achieve, and how I could best contribute to this. In order to gain a better insight, I attended one of the Mental Health Commission Public Hearings in Durham, where key themes were discussed in front of a public audience, and a meeting of the Mental Health Action Team, where the group refined the ‘asks’ of the report.

Due to my interest in mental health, and experience in this area of research, I wrote the ‘Context’ section of the report, which aimed to set the tone, and provide the audience with relevant information about mental health in the region, and further afield. I was also able to provide relevant literature for, and make comments on the themed sections of the report, which were written by the editor.

Coming from a qualitative research background, it was interesting to learn about the methodologies employed by the Citizens for this piece of work. Community organising is a process where people who live locally come together into an organisation that acts in their shared self-interests. This method was used in order to best capture the voices of those who may not engage with traditional methods of research. This was one of the most fascinating insights I gained from the process, and I believe this method of collective power from the community, could be utilised in directing future public health research, and that groups such as these may well be a starting point for meaningful patient and public involvement work. 

The Citizens had a small pot of money to support our involvement, and seven working days were costed for me to undertake the work. The biggest challenge I faced was the tight timescale. I was working full-time across other projects, and was in the process of writing my MSc dissertation, so the work had to fit around these existing commitments, which meant working outside of normal work hours.

The final report was launched in November 2018, at an event attended by over 500 people at Newcastle’s Civic Centre. Eileen and I were delighted to attend and speak at the event, and it was fantastic to see so many individuals interested in finding out about the work. Although the timescale was tight, I thoroughly enjoyed the opportunity to be involved in this important and innovative piece of work. I had a great working relationship with Simon and Joe, and was well supported by Eileen and Lesley. 

I am passionate about mental health research, and I am proud to have played a part in the production of a report, which aims to improve the lives of those in my home region.

Find out more about the work on the Citizens UK website.