After an uplifting few days at Alzheimers Europe it has left me in a reflective mood. After a few very inspirational speeches, the message loud and clear, the importance of human rights. A fundamental aspect to human rights: to be valued and included in society. Yet despite recent policy initiatives we still have a long way to go: our dementia services are stretched to the limit and cuts in funding, coupled with, staggeringly high rates of job vacancies in home care leave services at critical levels. The conversation surrounding dementia is often negative, dismal, and without hope. Conversations often peppered with the notion of ‘burden’. Through the media spectacles we see this impending threat staring us in the face, uttering some threat to our very humanity, and presenting only that promise of a magic cure is imminent. This perspective has impacts upon individuals together with our communities. On an individual level, it’s harder to adapt, develop coping strategies and build resilience where, on a community level, there are missed opportunities to share skills, talents and to learn from one another’s experiences. It is from this place human rights emerge. The stigma associated with dementia can create toxic environments, where exclusion is the norm and loneliness a very real possibility.
However, what if we were to take a different view of dementia? What does dementia bring to individuals and communities? How can we reframe ‘loss’ as an opportunity? What can we learn about the positive power of vulnerability? Do diminishing cognitive skills lead to not being ruled by reason, but instead the heart, and if so what benefits might that bring? What of living in the moment, and what insights and opportunities does this bring? What personal resources are available to individuals to challenge the standard paradigm in dementia? Some of the negative connotations associated with dementia stifle opportunities. What if we had a more inclusive society, and how might that facilitate opportunities in individuals to develop personal resources and capacities?
Aristole believed there was a unique daimon, or spirit within everyone which acts as a guide. Many religions talk of the power within to change, such as the power and importance of forgiveness. That by letting go of anger, we make things right within ourselves. Similarly, religions talk of the importance of gratitude; ‘counting your blessings’. When we express our gratitude to someone, we strengthen our relationship with them, as well as elicit positive emotions within ourselves. So, whilst these ideas have been around for many years, they are not universally adopted or applied. However, this is changing as ‘positive psychology’ is adopted and researched within our scientific communities. Backed by scientific evidence and embodied in what is known as ‘positive psychology’ (Martin Seligman). Although ‘positive psychology’ was introduced by Martin Seligman it was influenced by many great thinkers before him. Positive psychology is a branch of psychology which focuses on the capacities within individuals to flourish. Positive psychology is more than the study of happiness, but instead recognises that purpose and meaning are all as equally important. However, it’s application in dementia care is relatively new.
Since policy has stimulated timely diagnosis, more people are being diagnosed at the earlier stages of their condition where they can draw upon cognitive resources to sense make, take control and to develop coping strategies. With a timely diagnosis, more opportunities are available to individuals living with dementia for treatments, including ‘positive psychology’. Potentially offering a low cost intervention free from side effects. Positive psychology may also have further impact on physical health, as most people living with dementia are also living with another physical condition. Positive psychology may impact upon our immune system, and health.
One of the main areas of emerging research is looking at how much positive psychology can offer resilience. Resilience is having the ability to adapt in the face of adversity. How much does hope and optimism, impact on one’s ability to develop resilience? Having hope enables us to have goals, and without goals what is there? In the context of dementia this may not be a hope for a cure but rather a hope for a society that values and accepts people with dementia.
Growing older is a constant state of change, and adaptation within the world around us. Many positive changes happen psychologically as we age. As a person ages, we learn to regulate our emotions better, and we tend to reduce our social networks concentrating on those that are likely to provide positive emotions. We may become less concerned with material gain and more concerned with giving to others. This may be because as we age we see time narrowing (Socioemotional Selectivity Theory – Laura Carstensen). This is a natural growth, as we age. However what emotional growth comes from having a diagnosis of dementia? How does it change a person? Is there a natural reappraisal of goals? and how can, and does that work within the individual to develop personal resources, and resilience?
Should we then ask not how do you COPE with dementia, but rather how do you flourish? At the recent conference, I had the pleasure of spending time with Jayne Goodrick, wife to Chris Roberts, both activists in dementia rights, campaigning to challenge the current model in dementia. Jayne shared with me at the conference ‘since his diagnosis I SEE him like I have never SEEN him before, I have always known that I loved him but I never really saw how intelligent and strong he is, until he got his diagnosis of dementia.’ This highlights that for some dementia can bring fresh perspectives a new purpose, and a renewed life role.
However, this is not the case for everyone, and for many the words ‘living well with dementia’ can illicit anger and frustration and society’s lack of ability to connect with the true experience of dementia. Individuals differ, but how much of this is fixed? How much can we influence the physical and social environments around a person living with dementia to nurture the process of adaptation in a positive way? For example, what role does positive relationships play in building resilience? How do we support a person’s self-identity, and how might this impact upon their sense of self? How might positive psychology play a role in strengthening and supporting informal carer relationships?
Over the years training in dementia care I have had to deconstruct this notion of ‘bio-psycho-social’ approach to a more accessible language. Accessible so that front line staff can grasp, and commit to this notion of the experience of ‘dementia’ as a complex one: not only effected by medical factors but also by a powerful social environment. The way we make people feel, impacts on their ability to develop personal resources. The social care mandate is to empower and facilitate change in the individual, achieved by nurturing self-esteem and creating opportunities for autonomy and self-determination. Yet in older people’s services the task-based care driven culture would have us believe that our role is one of ‘maintenance’. However, our role is not the ‘maintain’ the status quo but to actively ‘rehabilitate’ and improve the lives we support. Therefore, positive psychology in dementia offers the social care workforce ‘tools’ for its toolbox to nurture the relationship with positive outcomes.
Seligman, M.E.P. (2011) Flourish: A new understanding of happiness and well-being – and how to achieve them. London: Nicholas Brealey Publishing.
Boniwell, I. (2012) Positive psychology in a nutshell: The science of happiness. 3rd edn. Maidenhead, Berkshire: Open University Press.
Clarke, C. and Wolverson, E. (eds.) (2016) Positive psychology approaches to dementia. United Kingdom: Jessica Kingsley Publishers
Schaie, W.K., Carstensen, L.L. and Schaie, K. (2006) Social structures, aging, and self-regulation in the elderly. New York: Springer Publishing Co
Bartlett, R., O’Connor, D. and Mann, J. (2010) Broadening the dementia debate: Towards social citizenship. Portland, OR: Policy Press.
Wolverson, E., Clarke, C. and Moniz-Cook, E. (2015) ‘Living positively with dementia: A systematic review and synthesis of the qualitative literature’, Aging & mental health., 20(7), pp. 676–99.