WHY THINK ABOUT THE EMOTIONAL NEEDS OF THOSE LIVING WITH DEMENTIA?

Heather Wilkinson is a Registered Psychotherapist and a Professor of Dementia Research at the University of Edinburgh, here she shares her thoughts about the value of therapy for those with Dementia.

Statistics tell us that there are over 600,000 people in the UK estimated to be living with dementia (Alzheimer’s Scotland 2019). Many of us will know one of these people, maybe someone in our close family. From a neurological, clinical perspective, dementia is understood to be an umbrella term that describes a group of symptoms that can be caused by a number of diseases, including Alzheimer’s Diease, multi-infarct dementia, and Lewy Body Dementia. The most common symptoms are often associated with a decline in cognitive skills such as memory and thinking, and dementia affects the ability to carry out daily tasks to the extent that it has an increasingly serious impact on daily living over time (Alzheimer’s Society 2020). These symptoms are visible to us through the challenges of living with and caring for someone who might seem to be increasingly disconnected from us and ‘losing’ their sense of self.

As there is little progress in finding a ‘breakthrough’ in drug development (Alzheimer’s Disease International 2019), our main focus remains, therefore, on how we best support individuals and their carers to ‘live well’ with the disease. Successive dementia strategies across the UK have encouraged early diagnosis, guaranteed time-limited post-diagnostic support (in Scotland) and better palliative care models for people in the later stages (e.g. Department for Health 2015, Scottish Government 2010, 2013, 2017).

Importantly, people are increasingly receiving a diagnosis at an earlier stage and, therefore, at a stage when they are more likely to be able to engage in talking therapies. During my 25 years of working with people living with dementia, I have been told many times by people that they want to be able to access emotional support/counselling. Following a life-changing diagnosis people want help to deal with the news, particularly in relation to feelings of grief, sadness, anger and loss. We know (from the work of people such as Collins and Smyer 2005; Windle 2011; Janssen et al. 2011) that for people at the beginning of their dementia experience, the post-diagnostic period has been characterized by isolation, mixed emotions on receiving a diagnosis, challenges of getting service support, and variable ways of coping. Not only is the fabric of a familiar life undergoing enormous internal change, including a redefining of close personal relationships (Botsford et al. 2012), but this re-narration of everyday life must also contemplate and engage with an array of services and practitioners as well as a shifting landscape of social relationships (Clarke et al. 2010).

So why do we not provide this support? In offering therapeutic support we are up against the common (and stereotypical) view that people with dementia cannot benefit from therapy. However, existing evidence suggests that therapeutic relationships of different kinds for people with in different points of their dementia can be beneficial. In 2017, a systematic review of evidence for individual and group psychotherapy with people affected by dementia showed support for an intensive, multi-faceted intervention and for the beneficial use, post-diagnosis, of short-term group therapy (Cheston and Ivanecka). Nevertheless, research evidence on psychotherapy in dementia is under-developed, underlining a need for conceptual and practice knowledge.

For my MSc dissertation I completed a piece of work with Cath, a women in her 80s living with dementia. I was interested in how Cath as client, and myself as therapist, experienced a series of psychotherapy sessions. Even going into this relationship with my positive outlook I was surprised at some of the challenges but also the depth of some of the outcomes from our sessions. Our work used Cath’s connection to past stories about her life to build alliance, to sustain her sense of self and to connect to places of safety during the psychotherapeutic process. On the whole Cath’s secure attachment style allowed us to safely explore her nightmares and hallucinations. White’s (2019) work on attachment was useful in helping me understand when working with someone with dementia, attachment is linked to the human response to fear and is most clearly evident when there are threats of separation or actual separation and abandonment. For someone living with dementia who is experiencing fear and anxiety as familiar environments become unsafe places and disorientation undermines confidence and safety, the aim of psychotherapy can be to work with their attachment system in states of arousal to find safety with an attachment figure to provide protection and affect regulation and regain a state of feeling safe. Beattie and West (2021) applied attachment theory to understanding behaviours and responses from people living with dementia. They argue that using attachment theory in everyday practices can help people living with dementia to feel safer and more secure, which in turn can support them to maintain relationships, connect with their community and engage in support and care.

I would argue that if psychotherapy as a therapeutic intervention aims to enhance emotional well-being, using the conversations between therapist and client as a co-regulating relationship (Schore 2003) then to work towards a wholeness and a safety, is, therefore, an essential element in offering emotional support. Our training and practice opportunities should be extended so we can offer therapeutic work with people living with dementia - the current context for growing numbers of people living with dementia in the UK is one that fails to meet their emotional needs.

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References

Alzheimer Disease International (2019) World Alzheimer Report. London

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Alzheimer's Society. (2020). What is dementia? [Online] Alzheimer's Society. Available: https://www.alzheimers.org.uk/about-dementia/types-dementia/what-dementia

Beattie, J. and West, J. (2021). Dementia: attachment matters. IRISS: Glasgow

Botsford, J., Clarke, C.L. and Gibb, C.E. (2012). Dementia and relationships: experiences of partners in minority ethnic communities. Journal of Advanced Nursing. 68 (10): 2207–2217.

Cheston, R. and Ivanecka, A. (2017). Individual and group psychotherapy with people diagnosed with dementia: a systematic review of the literature. International Journal of Geriatric Psychiatry. 32: 3-31.

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Department of Health (2015). Prime Minister’s challenge on dementia. Retrieved from: https://www.gov. uk/government/publications/prime-ministers-challenge-on-dementia 2020

Janssen, B., Van Regenmortel, T. and Abma, T. (2011). Identifying sources of strength: resilience from the perspective of older people receiving long-term community care. European Journal of Ageing. 8 (3): 145–56.

Schore, A.N. (2003). Affect dysregulation and disorders of the Self. New York, NY: Norton.

Scottish Government (2010). Scotland’s National Dementia Strategy 2010-2013. Edinburgh: Scottish Government

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White, K. (2019). An Attachment Approach to Understanding and Living Well with Dementia. In White, K., Cotter, A. and Leventhal, H. (eds). Dementia. An Attachment Approach. Routledge: Oxford. Pp13 – 42.

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