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The self continues despite fears of its loss: A review of 'What Dementia Teaches Us About Love'

This book review is by Dawn Corse, who's a current student on the University of Hull's Online MSc in Dementia.

 

Alongside studying with us, Dawn works as an Independent Occupational Therapist. Here, she shares a review of Nicci Gerard's 'What Dementia Teaches Us About Love'. 

 

Dementia does not fit into existing systems or neat categorisations: it crosses borders of mental or physical health, social or biological states and challenges existential ideas. Gerrard’s atypical memoir of caring for her father builds on her own story and includes people living with dementia, family carers, professionals, and academics to examine this conundrum.

Key themes

 

A key theme is that the ecosystems we exist within both support and undermine potential to live well with dementia. A second theme is how the self continues despite fears of its loss. Thirdly, she exposes the moral failings when person-centred care, particularly for those with advanced dementia, is not prioritised. Her philosophical approach propounds compassionate and truthful insights, and any criticism offered by this review does not detract from this.

 

Following her father’s experience of a desolate and lengthy hospitalisation towards the end of his life, Gerrard founded ‘John’s Campaign’ to fight for carers rights to accompany people with dementia in hospital and for greater compassion in care. This book is a rallying cry to the reader, urging us to embrace the lessons offered by dementia and to enact change where, as a society, we have failed to do so.

 

Gerrard aims to explore what dementia means both societally and individually. Furthermore, she intends that this exploration leads to cultural change, which together is a large task. However, as a journalist, humanist celebrant, and crime writer, Gerrard is someone who seeks meanings for a living.

 

Chapters flow logically and include examinations of aging, dementia’s effects on the brain and self, diagnosis, shame, carers' perspectives, role of the arts, and finally the later stages, institutions and dying. She directly challenges societal values that extoll autonomy whilst dependence is equated with inferiority meaning people with dementia are ‘lesser’ (Chapman et al, 2019).

 

Theories of social health recognise that people with dementia can fulfil social roles, express agency, and engage in social worlds for wellbeing (Huber et al, 2011). Gerrard argues we all benefit from this and speaks eloquently about inter-dependency arguing ‘To be human is to be dependent: this isn’t a weakness but a necessary condition of being alive.’ The shared experiences of family’s living with dementia can develop a depth of connection that is valued (Lloyd et al, 2016).

 

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Forming connections

 

In sharing sublime memories of her father, living with dementia and lake swimming at dusk or of joyful family anniversary parties, the reader can believe this. She describes how creative arts promote connection and a continued social self, offering routes to communication, means of self-expression, and re-dressing imbalances in relationships (Killick and Craig, 2012). The family’s use of poetry to connect with her father living with advanced dementia is particularly affecting.

 

However, this understanding is in the face of strong opposing cultural forces. Personally, the chapter on the mechanisms of shame was especially illuminating. I found it deeply moving to hear how, early in his diagnosis, her father had false memories of public humiliation or retreated to his bedroom in solitary silence despite his achievements, sociable existence, and supportive community.

 

For those living with dementia, an almost embedded awareness of how others may view any ‘lack’ is disempowering and demoralising (van Wijngaarden et al, 2019). Since services, including routes to diagnosis, are potentially not accessed because of shame (Lopez et al, 2020) cultural shift is required as Gerrard powerfully argues.

 

Gerrard asks difficult questions with skill and compassion but is also unflinching in presenting emotional angst, especially in probing existential challenges. With its campaigning energy, the book is pertinent to change-makers, professionals, and the general population.

Watch an interview with author Nicci Gerrard:

 

 

Fear of losing self

 

It is tempting to shield those experiencing dementia from any upset resulting from Gerrard’s examinations, but this might be misguided (Grobosch et al, 2020). Carers may appreciate the honesty (Broady et al, 2018) whilst people with dementia are agents in their own responses to challenges of self (Birt et al 2020).

 

Many of us will ask challenging questions such as, who we without our memories, or how can we exist, let alone live well if we cannot think as our known selves. The fear of losing self is deep-rooted in society (Borgstrom, 2017).

 

Having not discussed this with her father, Gerrard speaks to people both with and without dementia about who they are now and fears over who they may become. People with dementia can acknowledge changes to themselves whilst retaining and proactively protecting their perceived essence (Caddell and Clare, 2011).

 

It is posed by one professor that perhaps the self is lost when empathy is gone, an idea which has proponents (Caddell and Clare 2010). This notion is jarring when meeting married couple Tommy and Joyce Dunne who explain that Tommy has lost empathy for his wife.

 

Here is a fully formed character, likable and vibrant and whilst he reports feeling changed, it is hard for the reader to comprehend his self as ‘lost’. Arguably, to be affected by such changes to one’s life is a normal response (Sabat, 2014). Indeed, following this discussion, he proactively responds to this realisation ‘I am not letting dementia beat me, so why should I let it take away my love’.

Personhood and person-centred care

 

Although Gerrard does not discuss theory, with its focus on love, much of the book relates to understandings of personhood and person-centred care, particularly in the later stages. There is broad acceptance of Kitwood’s (1997) rationale that personhood should be proactively constructed through positive relationships. Central to this is that love is demonstrated through meeting identified needs of occupation, inclusion, attachment, comfort, and identity (Kitwood, 1997).

 

Yet ‘love’ is still not commonly debated or overtly prioritised in services (Oliver and Guss, 2019). Gerrard’s insights are therefore a welcome addition to the literature. She describes a rush of relief when walking into a care home aligned with person-centred principles complete with playground for grandchildren, an actual shop, and open visiting hours.

 

However, where person-centred approaches are not explicit, Gerrard’s reflections are bleak. When the rules of the hospital presided over the needs of her father to be with his family, or their need to care, she perceives a devastating deterioration in his body and spirit.

 

This view is shared by other carers (Moore et al, 2019). A staff focus on safety, time pressures and a lack of conviction that dementia care is skilled work are structural obstacles to person-centred care (Handley et al, 2018). Currently there is limited consensus on moving forward (Malone, 2014) and her descriptions are all too recognisable with my own work history in acute settings.

 

Gerrard recounts her day in a large hospital with its comparatively tiny dementia liaison team, compassionately supporting distressed patients with bedside activity, reminiscence and attempts to decipher behaviour as communication. Her experience is one of kindness, however she is left ‘strangely exhausted, like there was a thick sludge under the brightness.’

 

It has been argued that the concept of ‘personhood’ is overly complex and that a focus on care and humanity is perhaps sufficient (Higgs and Gilleard, 2016). However, it is also posed that without a recentralisation of personhood and love, change will be absent (Surr, 2019). Gerrard suggests that ‘while people are kind, fragmented, rule-bound systems can grind you down.’ The understanding she offers is not that love is an easy path but rather a foundation on which to build.

Multiple perspectives on dementia

 

Most memoirs provide a singular perspective but Gerrard’s approach, using other voices to understand her own, is valid and represents who she is. The multiple perspectives means that the book can tackle some of the complexities of responding to an illness that defies current categorisations.

 

A strength of the book is its presentation of how opposing feelings such as anger and gratitude, joy and grief, or acceptance and resentment can live alongside one another and fluctuate over time. Carers can find emotional equilibrium through honest acknowledgment of the spectrum of emotions they feel (O’Shaughnessey el, 2010).

 

People living with dementia can acknowledge grief, loss, and isolation whilst simultaneously seeking meaning or developing means of adaptation to their situation and coping strategies (Wolverson et al, 2016). Her father can experience false nightmares and isolation whilst boldly exploring Scandinavia and remaining engaged in family life.

 

The enviable global adventures of Teresa Clarke, a single woman living with dementia, can be curtailed yet she can claim she is ‘more than my experiences. I’m here, in the moment, alive.’ However, at times the multiple perspectives means that what she has chosen to emphasis or leave out is noticeable. The debate on euthanasia for example shows different perspectives but leans more heavily in favour because of who is being asked.

 

Including the voices of those with advanced dementia on euthanasia is clearly challenging. Yet we know people living with dementia and their carers can have different ideas of what quality of life they have (O’Shea et al, 2020) and beliefs on maintaining life at different stages (Hill et al, 2017).

 

Since perceptions are greatly influenced by lived experience, it would have been interesting to consider how feelings would change if services were developed (Kevern, 2017). Most carer memoirs offer a singular perspective and so perhaps this critique is unfair. However, at times, using other’s viewpoints to represent her own meant that I missed the nuance of her typically personal and persuasive insights.

Conclusion

 

'What Dementia Teaches us about love’ has revisited my thoughts and peppered my conversations since reading. It is also a timely book. As Gerrard points out, politically and socially, dementia may be in focus but there is uncertainty as to the real-world impacts of efforts thus far (Downs and Bowers, 2014).

 

The book has already found new relevance with the COVID pandemic as we consider the impacts of Covid upon this community (Alzheimer’s Society, 2020). It is written with a heartfelt and convincing urgency which feels necessary. I recommend it to be read, and then read again.

 

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You can view the references for this blog post here.

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