Friday 13 November 2020

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

3 comments:

  1. Such an important topic of how the carer needs support but is often simply forgotten about. The situation with Covid, as mentioned has only exacerbated the plight of carers and this area needs urgent attention.

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  2. Excellent study, great cause, well done, I hope carers get some help from this, I will share to raise awareness.

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  3. Thank you for sharing this article. Please check my recent article on 8 Steps To Take When Your Parents Need Assisted Living

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