The focus of BOLD is on finding ways to support people living with dementia to flourish, so that having dementia makes no difference for who we are as people and how we live our lives.
I am always excited and encouraged when I spend time with people living with dementia as we discover the different creative ways in which we can all flourish.
Throughout the dementia journey however there can be challenging and difficult times. I am often asked whether we can realistically flourish whilst living with dementia, especially during the times when life might feel particularly difficult and painful. This is an important question and one that even more people are thinking about just now as we live through the current coronavirus pandemic and the extra layer of challenge and uncertainty that this brings.
Before COVID-19 took hold in the UK, I spent some time exploring some of the difficulties that the dementia journey might bring and how we could find a space for flourishing within the difficulties. I explored the changes that dementia might bring in terms of the way it can affect the way a person feels, thinks and behaves and the profound psychological and physical changes that the person with dementia might experience . These changes can often be experienced as a loss to both the person with dementia and those who love them [1,2] and are sometimes described as a sense of “living grief and bereavement” [3, p1].
The changes that dementia brings can lead to a change in the shape of the relationship between persons with dementia and those close to them. The way in which people with and without dementia may chat and communicate with each other may change. There could be a loss of intimacy in the relationship and the things that were planned for a future together may no longer be possible. Some people might find themselves worrying about what the future might hold.
As a person journeys with dementia, there will be an increasing dependency on others to care for and support them physically, emotionally and spiritually. Often much, if not all, this care is provided by those who are emotionally close to the person with dementia. Alongside the increase in practical care, those close to people with dementia often find themselves experiencing a sense of loss, grief and worry. This can be overwhelming for those who dedicate their time and energy towards caring for their loved one [3, p5]. Grief and loss can be a “major difficulty” for those who care for their loved one with dementia [4, p4].
The academic literature describes this sense of grief and loss in several different ways. Some of these are:
- Caregiver grief – The experience of “multiple losses within the context of caregiving”. This includes the anticipation of losses in the future that relate to the “physical death” of the person with dementia [5, p1].
- Pre-death grief – The “emotional and physical response to the perceived losses” [1, p2203]. It can come and go throughout the dementia journey and manifest itself in a range of emotions such as feeling angry, sad, a longing for the way things were, and an acceptance of the situation .
- Anticipatory grief – The process of the normal phases of bereavement “in advance of the loss of a significant person” [6, p1]. Anticipatory grief is often manifested as the “mourning, coping, planning and psychosocial reorganization” that are triggered as we become more aware of a future loss, and losses in the “past, present and future” [6, p1].
- Disenfranchised grief – The “losses that are not recognised by others” [2, p17]. When grief is disenfranchised, those who are grieving are understood by others as having no right to mourn or feel grief. The grief is not acknowledged or shared by others, and not socially recognised. When grief is disenfranchised it is not given validity or supported because others cannot understand what is being lost and mourned .
As I explored the experience of grief and loss in dementia, and the pain that that might bring, I recognised that it is sometimes difficult to talk and think about flourishing. The current pandemic seems to have made it even harder to think about flourishing, not only as we live with dementia but as we live with the additional roller coaster of emotions various types of grief that this crisis brings.
I know I am not alone in experiencing fluctuating emotions of fear, anxiety, and sadness, balanced somewhat by profound moments of deep insight, calm and joy as COVID-19 has taken hold. Moving from face to face contact to contact via social media, the telephone or online video calls, the shape of our relationship with others is changing. There are times when I feel socially isolated and am missing the physical touch and presence of other human beings, being able to shake someone’s hand or give my friends and family a hug. There are times when I feel like I am grieving my “old” life and routines and my way of being.
To think about human flourishing really does feel even more difficult just now. Yet as I pause and reflect I notice that my faith in the human spirit, and our ability to adapt and respond to changes drives me to believe that we can grow and flourish not only through the dementia journey, but through this time of crisis.
Flourishing means helping individuals, through our relationships with them, to maximise their potential so that they can achieve their potential to continue to grow and develop . This growth, development and flourishing is often found as we pay attention not only to the times when we, and others, feel strong and in control of our lives, but also to the times of fragility and uncertainty. Times where one might feel in a place of weakness, sadness, grief or loss, and authentically acknowledging these painful and difficult times.
In recognising, acknowledging our own living grief and supporting others through their living grief, we are often able to find moments of beauty, joy and growth.
Titchen and McCormack [8, p65] write that:
.…Human flourishing is an eco-system of balancing life-death-life.
Creating conditions for interdependency and the losses and gains of each position
Fragility and strength – strength and fragility.
They suggest that:
“growth emerges from unexpected places when we really pay attention. In the midst of what may seem dead or murky and tangled with no space to move or breathe, the energies for growth and flourishing spring forth” [7, p9].
In our human journey we often grow and flourish in times of grief and suffering as well as in moments of joy. If we deny the times of grief, difficulty, and loss, then we are in danger of denying the reality of life itself.
Flourishing and growth needs to emerge from a place of authenticity and “inner knowing” [7, p3]. It is in the disenfranchising and not paying attention to our own grief and the grief of others that I think human flourishing becomes impossible.
A saving grace for me during this time of social distancing has been my fortnightly online zoom meetings with my local mental health peer support group. It is a time where we all come together and acknowledge how hard we are finding things and share our different coping strategies. Whilst it can sometimes make us feel vulnerable to open up to others about how difficult we find things some days; we often end up learning so much from each other and regularly end up in fits of laughter too. I notice in these groups that we are all openly acknowledging our grief, our sadness and sense of loss and we are all being authentic about that rather than trying to sugar coat our feelings. It is through this authenticity and vulnerability that we support each other, acknowledge our losses, admit our fragility, and find our strength, our “energies for growth” and we notice our gains. It is in this time of authenticity and vulnerability that our energies for “flourishing spring forth” [7, p9].
Embracing our difficulties, vulnerabilities and fragility can open the door to human flourishing and be a gateway to experience moments of deep growth, creativity, beauty and joy. As we continue to journey with dementia together through and beyond this pandemic, we can continue to find ways to support each other to maximise our own potential and flourish in both good and difficult times. We can BOLDly continue to find ways to make a positive contribution and difference in the “dementia world”.
- LINDAUER A., HARVATH, A. (2014) Pre-death grief in the context of dementia caregiving: a concept analysis. Journal of Advanced Nursing. Vol 70(10), pp.2196-2207.
- DOKA, K.J. (2010) Grief, multiple loss and dementia. Bereavement Care. Vol. 29 (3), pp15-20.
- TIDE (2019) Living grief and bereavement A booklet for carers of people with dementia. Life Story Network CIC.
- FRANK, J. (2009) ‘Anticipatory and disenfranchised grief among dementia family caregivers: helping spouse and adult-child caregivers to cope’ IN: HUGHES, J. LLOYD-WILLIAMS, M. SACHS, G. (Eds). Supportive care for the person with dementia, Oxford: Oxford University Press. pp207-215.
- LIEW, T.M., YAP, P. (2020) A Brief, 6-Item Scale for Caregiver Grief in Dementia Caregiving. The Gerentologist. Vol 60(1), pp. 1-10.
- GARLAND, L., LINGLER, J.H., DEARDORF, K.E., DEKOSKY, S.T., SCHULZ, R., REYNOLDS, C.F. AND DEW, M.A. (2012). Anticipatory Grief in New Family Caregivers of Persons With Mild Cognitive Impairment and Dementia. Alzheimer Disease and Associated Disorders. Vol 26 (2), pp.159-165.
- MCCORMACK, B. TITCHEN, A. (2014) No beginning, no end: an ecology of human flourishing. International Practice Development Journal. Vol 4 (2), pp1-21.
- TITCHEN, A. MCCORMACK, A. (2008) ‘A Methodological Walk in the Forest: Critical Creativity and Human Flourishing’ IN: MANLEY, K., MCCORMACK, B. WILSON, V. (Eds). International Practice Development in Nursing and Healthcare, Oxford: Blackwell Publishing Ltd. pp59-83.