Chapter Review by Elizabeth Deane McCarthy, Student of Ageing and Public Policy, 2024

“Coming from a background of Mental Health Nursing (Training completed during the COVID pandemic) with a special interest in Dementia, I picked up Ageing of the Oppressed and couldn’t put it down.

Kate Swaffer’s chapter ‘About Us Without All Of Us: The Elephants in the Room’ particularly struck a chord. As healthcare professionals we have heard such buzz words as person- centred, co-production, and inclusivity. But Swaffer paints a very dark picture of what the reality is for many people living with a dementia diagnosis. She speaks frankly about the profoundly damaging moral injury she suffered post diagnosis. But this makes me consider why we all stand back and accept the status quo and are unable or perhaps unwilling to challenge the contributors to oppression and discrimination. Personal shame and disempowerment pervade this chapter. Against a regime of glammed up advocacy people with dementia are continually used and discarded.

There is an omnipresent picture of the terrifying trajectory of dementia (mostly used to justify fundraising initiatives) – but is this the reality for the majority? Do we ever really consider this and the harmful effects of our discourse and actions?  

Inclusion demands equality in every sense whether it is access to services or being paid appropriately for work. The significant Contributions made by people with dementia should not be mere photo opportunities for publicity. This type of oppression and power imbalance is not all that dissimilar to that which people with dementia experience when they are subjected to the ‘pad culture’ in acute hospital wards. 

Yet we all remain silent.

We choose to focus on confidentiality, and professionalism to evade our duties to be genuinely supportive of people living with dementia.  Tokenistic co-production and a one size fits all approach to policy/diagnosis/treatment is perpetuating stigma. Selectivity and homogenisation if, and when a person receives a diagnosis is still ongoing, timely diagnosis, and by the same token, access to services is still an ongoing issue -yes still ongoing issue in 2024.  Ageist stereotyping is still inhibiting accessibility for people seeking dementia support services as age criteria are impeding life changing transitions.

The malignant psychology that Tom Kitwood spoke of is alive and well. Yet here we have an opportunity to sit up and pay attention to Kate Swaffer and to take heed. “Challenging behaviour” otherwise known as behavioural and psychological symptoms of dementia is still touted as good reason for restraint despite the presence of a human rights narrative. Clearly the legislation present in many countries is not far reaching enough to combat these ongoing violations.

Many people with dementia are deprived of their freedom and are placed in locked ‘secure’ units to keep them safe, yet this often entails being locked in for many months in de facto detention. Lack of appropriate services and site resources are perpetuating this issue. Supports for people living with dementia at end of life are non-existent (particularly for people who wish to continue to live in their own homes).  As health care professionals our training asks us to make reasonable adjustments, practice considered communication, promote empowerment, respect dignity and bodily integrity. Yet we continue to devalue people with dementia. 

Perhaps now is the time Kate Swaffers dream that all people with dementia will be treated with equal respect not just in terms of timely diagnosis and supports for their disability but to feel heard and deeply valued.”

The chapter reviewed above is in this book, Ageing of the Oppressed: A Pandemic of Intersecting Injustice, edited by   Silvia Perel-Levin  (Editor) and Shirley R. Steinberg  (Series Editor).