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

Putting the 'occupation' in Occupational Therapy and debating its role in Public Health

Guest post by Andrew Graham, Registered Occupational Therapist and PhD Candidate, Teesside University

Having recently made the move from NHS clinician into academia (I started my PhD at Teesside University in December 2017), I arrived in Belfast for the Royal College of Occupational Therapy Annual Conference with an appetite to hear new and interesting research in the profession.

In my welcome pack, I received a copy of the RCOT’s Strategic Intentions which represent the leadership response to the challenges of the changing landscape of health and social care. The principle that stood out for me was to ‘position the Profession, and our members, for the 21st century’.

With my background in amputee rehabilitation I have seen first-hand the impact of socio-economic inequalities and lifestyle trends on amputation rate in North East England. For example, the amount of amputations due to diabetes, and more shockingly intra-venous drug use, has spiked in the past 10 years or so. As an Occupational Therapist (OT), I view the person holistically and always try to take into account the social and psychological not just physical barriers they will need to overcome post amputation. My focus will always be on what the person needs and wants to do. The person’s meaningful activities (occupations).


The pledge tree

During the conference, we were asked to make a pledge about how we would do our part to ensure the new strategic intentions are met. The pledge tree seemed to have a recurring theme of ‘ensuring occupation is central to my work’.

My own pledge was to better explain ‘occupation’ and its meaning within occupational therapy to a range of audiences.

So, my attempt at articulating ‘occupation’? I’ll go with ‘doing things that we need to do and want to do (meaningful activities), which enable a sense of self-meaning and improved health and well-being.

I feel as a profession we are experts in using occupation as a goal (top down approach) and/or a means (bottom up approach) to ensure provision of high-quality, client centred services. Utilising the OT process from information gathering to evaluation we strive to enable growth, confidence and self-meaning.

Despite OTs generally being able to better define what they do and what the outcomes can be, it was a bit of a shock to see that the debate at the conference highlighted that the profession is still unsure about its stakeholders. The topic up for discussion was ‘This house believes that Occupational Therapy needs to be predominately based in public health, not in secondary or tertiary services’.

From my experience, this issue had been debated and answered years ago. My pre-registration training saw me working in the NHS, community mental health teams, a special needs school and a charity. The OTs all had a prominent and effective role in these sectors, so as intrigued as I was to hear the debate, I knew which way I would be voting!

For the purpose of this blog I’d like to highlight the case for OTs working in Public Health. A starting point would be the statement by the professional body, which points out that the Public Health Agenda has been of increasing importance and relevance for occupational therapists, who facilitate health promotion through working with people of all ages to enable their participation in meaningful occupations (RCOT 2004).

The evidence base is also pretty strong. A systematic review of Allied Health Professions and Health Promotion (Needle et al 2011) reviewed 28 studies related to occupational therapy and Public Health, and found related interventions in the areas of mental health, arthritis, pain and fatigue, pulmonary rehabilitation, stroke, drug and alcohol problems, and falls prevention.

Not only are OTs already working with people on aspects of Public Health and health promotion activity, but there is an expectation that this focus will form part of the delivery of all occupational therapy interventions in the future. For example, I remember reading about the ‘make every contact count’ campaign when working on an acute stroke ward and making sure I asked about smoking and drinking habits as part of my OT assessment.

So, it was with no surprise that the result swung against the motion at the conference. A particularly convincing rebuttal speech was given by Professor Diane Cox and Dr Jenny Preston, clearly showing the professions ability to address Public Health matters but also reach a wider audience through demonstrating outcomes in secondary and tertiary services.

Overall, I left the conference with a sense that the profession has strategically positioned itself to demonstrate that it is making a difference and will continue to make a difference to the health and well-being of people in the 21st century. It is time for OTs working in Public Health and other services to be proud. In my favourite quote of the conference….‘we are not the jack of all trades, rather we are the masters of human occupation’.


Andrew Graham is investigating ‘Sensory Discriminating Training for Phantom Limb Pain’, as a PhD candidate in the School of Health and Social Care at Teesside University.