Discourses of dementia: dismantling deficit-based narratives

When I first began this blog during my Social Work Masters, I was motivated to explore social issues through the double lens of sociology and social work, and to employ a critical lens to taken-for-granted norms and normative practices that perpetuate inequality. After fervently contributing to my blog for a whole year (while studying!), I graduated and became busy building up my career. I also took a break from academia to blow the cobwebs off of long-lost passions such as sewing, working out and reading for pleasure.

However, my critical lens has not gone anywhere, and lately I have felt that old familiar hankering to explore, critique, evaluate and blog about power and everyday practices. For this blog post, I will continue my –isms initiative as a focus for inquiry, and discuss discourses of dementia.

I do not categorize discriminatory discourses of dementia as “ageist,” because to do so would be ageist; a common misconception is that dementia only affects older persons. In reality, there are over 150 types of diseases that can cause dementia, and these diseases do not discriminate based on age – people in their 50s, 40s and even 30s can get Younger Onset Dementia. Ableism is a more apt categorization, as dementia arises when disease-related brain deterioration evolves into a loss of cognition and function, and therefore advocates for the rights of people living with dementia have fought to have dementia recognized as a disabling condition.

Over the last 1.5 years I have taken my Social Work education into the field of dementia, working for the Australian peak body, Dementia Australia. Currently I have the incredibly fulfilling role of Dementia Friendly Communities Project Officer for Queensland. In this role, I educate people about dementia from a psychosocial perspective, with the intent to raise awareness of the way in which dementia impacts a person’s wellbeing, to reduce stigma, break down myths, and to promote social inclusion and compassion. Dementia Friendly Communities is actually an international social movement that aims to address the similar experiences people living with dementia share around the globe: stigma, discrimination and social isolation.

In my role, I regularly enter the community at education events, forums, expos and other community spaces such as libraries and cafes. In these spaces, I meet people living with dementia, their care partners, friends and family, academics, service providers, and other citizens. What I have noticed is that across many realms of community, even well-intentioned people such as family members, speakers, academics and journalists still unknowingly perpetuate disempowering language, casting people living with dementia into the realm of “other,” out into the periphery of society.

Disempowering and discriminatory discourses of dementia include anything that:

  • refers to the person as less than they “used” to be;
  • is inaccurate or based on myths and misconceptions;
  • utilizes a blanket assumption of what dementia is, disregarding the unique lived experiences of individual people across the realms of differing symptoms, personalities and social realities;
  • disrespectfully and inaccurately refers to dementia as a “living death” or a “2nd childhood”;
  • focuses solely on loss and deficit rather than remaining abilities and cognition;
  • utilizes archaic, stigmatizing language such as: senile/senility, demented person/dementing illness, dementia person/patient, sufferer, victim, wanderer, Old-timers;
  • positions the person within the social imaginary of hopelessness.

The language we use when talking about people with dementia matters. Western cultural discourses of dementia typically imagine the person to be stripped of their essence, in effect a non-person.1 This cultural imaginary of people living with dementia as defective and reduced positions people living with the condition as “non-citizens, socially dead, within a narrative of complete deficit.”2 Essentially, discourses of deficit create a cultural narrative that casts people with dementia into the periphery, excluding them from citizen-based rights and stripping them of socially constructed roles and statuses held prior to the diagnosis.

So what can we say instead? Dementia Australia’s dementia-friendly language guidelines state that appropriate language to speak about dementia should be: accurate, respectful, inclusive, empowering and non-stigmatizing. When speaking about people living with dementia, we should focus on language that addresses who the person is and what their remaining capabilities are, rather than a complete focus on what they have lost and an arbitrary premonition about what they will lose, i.e. a deficit-based focus. At a baseline level, use of the term “person living with dementia” maintains a person’s dignity, rather than placing the word dementia/demented at the beginning of any description of a person. Phrases such as “dementia person” or “demented person” position ‘dementia’ as the master identity, the lens through which the person will now be categorized and understood within a social interaction. When we say “person living with dementia,” their personhood remains intact and their uniqueness is conserved.

Social movements can take a long time. We often focus on an imagined end-goal of complete change and do not know where to start because we perceive there to be a figurative mountain to climb. But changing minds and changing culture has to start at the level of the individual; individual people need to take their spoon to the mountain by challenging stigma and correcting people when they hear “dementia sufferer” or “demented person.” These small actions challenge stigma and advocate for people who live with dementia to be recognized for who they are: people.

September is Dementia Awareness Month. Find out how you can be Dementia Friendly by visiting: www.dementiafriendly.org.au

 

References:

  1. Gilmour, J. A. and Brannelly, T. (2010). Representations of people with dementia – subaltern, person, citizen. Nursing Inquiry, 17(3), 240-47.
  2. Birt, L., Poland, F., Csipke, E. and Charlesworth, G. (2017). Shifting dementia discourses from deficit to active citizenship. Sociology of Health and Illness, 39(2), 199-211.

 

 

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One thought on “Discourses of dementia: dismantling deficit-based narratives

  1. A great article, Mara. Thanks! I had never heard of the phrase “living death” – this is bleak. Clearly not helpful language at all. Thanks for the helpful links too.

    Like

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