Two weeks ago, while visiting my mother in her aged care home, I spoke with a lovely older woman whose husband is also a resident in the dementia ward with my mum. After a few minutes of talking, she gestured to a poster on the wall featuring a cheerful young woman walking arm in arm with an older man, presumably her father, advertising mental health support for carers.
“You see this? I hate this,” she said. She then pointed at a mass of residents in the memory support unit and bluntly remarked, “there’s no joy in this.” The more I looked at the poster, the more I realised that her words echoed my own frustrations.
As the primary care of my own mother who has now lost her ability to meaningfully communicate or walk, I bristle when I hear someone correct another person for the use of the word “suffering” to describe a dementia experience. To me, that word captures the brutal truth of this condition for many. Enforcing positivity feels like an attempt to sanitise a condition that is anything but gentle and also undermine the grief someone is potentially feeling.
In recent years, I have grown increasingly frustrated with the relentless push for positive framing around this devastating condition.
Obviously, I can understand the intent behind dementia organisations’ efforts to avoid negative stereotypes and promote dignity for those living with dementia. But for many carers like me, the glossy upbeat imagery and carefully curated language feel like disingenuous masking of a grim reality.
Dementia advocates aks for language that is “accurate, respectful, inclusive, empowering, and non stigmatising.” Terms like “sufferer” or “victim” are discouraged, replaced with phrases like “person living with dementia” to emphasise dignity and individuality. I get it, language matters, and for those in the early stages of dementia who can still engage meaningfully, this positivity can foster hope and reduce stigma.
However, The problem with relentless optimism is that it shapes public perception in ways that undermine carers and those with advanced dementia.
The general public, with limited exposure to the condition beyond these polished campaigns, often sees dementia as mere forgetfulness, an elderly person misplacing their keys or struggling to recall names.
In reality, dementia can manifest as violent aggression, inability to swallow, or complete loss of self. My mother’s condition has left us guessing her needs, grappling with her unrecognisable behaviour, and mourning her incremental losses.
Yet, the public’s rose tinted view diminishes the burnout carers experience, undervalues the tireless work of aged care staff, and can even foster intolerance for behaviours that don’t fit the “forgetful but happy” stereotype. I’ve also heard comments like, “he must have other issues if he’s lashing out, that’s not just dementia.”
This misunderstanding stems directly from the lack of realistic portrayals.
Late last year, I wrote about The Alzheimer’s Society (UK)’s “Long Goodbye” campaign, which sparked controversy for its stark depiction of dementia as a series of emotional “deaths” as loved ones lose cognitive abilities. Critics argued it was too negative, amplifying stigma and ignoring the potential for joy and connection.
I found it painfully accurate, it mirrored my own experience of losing my mother piece by piece. I acknowledge that dementia is a spectrum. For some, especially in the early stages, life can remain fulfilling, with moments of joy and purpose. The challenge is balancing these truths in public messaging.
The insistence on positivity risks alienating those of us grappling with dementia’s harshest realities. It’s not about wallowing in despair but about honesty. Campaigns should reflect the diversity of dementia experiences, celebrating resilience where it exists but not shying away from the pain, exhaustion, and loss that many endure.
Realistic depictions could foster greater public empathy, better support for carers, and more respect for aged care workers. They could also prepare families for the challenges ahead, rather than leaving us blindsided by a reality that no amount of positive language can soften.
