Too Far? New Dementia Awareness Campaign Ruffles Feathers For Lack of Positivity

The Alzheimer’s Society (UK)’s recent “Long Goodbye” dementia awareness campaign has stirred both empathy and unease, particularly among dementia advocates and those personally affected by the condition.

The campaign seeks to shed light on the emotional toll dementia takes on families, but many argue that it paints too dark a picture, missing the broader nuances of living with the disease. The central debate surrounds how dementia should be publicly portrayed — as a source of inevitable suffering, or as a condition where individuals can still find moments of joy, connection, and meaning.

At the heart of the “Long Goodbye” campaign is a striking video. It opens with a man delivering a eulogy at his mother’s funeral. Instead of focusing solely on her passing, he speaks about her cognitive decline as a series of deaths.

He recounts the milestones of her decline with raw emotion — like the day she could no longer recognise her husband, a moment he describes as “the day she died as his rock of support.”

The eulogy powerfully illustrates the way dementia strips away not just memory, but the relationships and identities of those affected. Every new loss of cognitive function is framed as a kind of death, a painful erosion of the person the family once knew and loved.

The Alzheimer’s Society designed this campaign to highlight the grief that families experience throughout the progression of dementia. It’s not just about the final loss when a loved one physically passes away — it’s about the incremental losses along the way.

The campaign aims to foster understanding and support for families who are navigating this complex and often heartbreaking journey. The hope is to shine a light on the emotional pain families endure as they watch their loved ones slowly slip away, even though they are still present in body.

In this way, the Alzheimer’s Society wanted to confront the reality of what living with dementia can mean, especially in its later stages.

Yet, the campaign has not been without controversy. Many advocates and professionals in dementia care have criticised the campaign for its overwhelmingly negative portrayal of the disease.

Challenging Stigmas

During an Open the Door 2030 webinar, which focused on the future of dementia care and advocacy, the campaign became a significant topic of discussion.

Maxine Linnell, a long-time dementia advocate who has been both a caregiver for a loved one with dementia and was also diagnosed with dementia herself recently, shared her discomfort with the imagery and messaging.

“The ‘Long Goodbye’ campaign amplifies the pain and suffering of dementia, but it doesn’t represent the full picture. Dementia isn’t just about loss — it’s also about adaptation, resilience, and finding new ways to connect. Many people with dementia can still experience quality of life, and we shouldn’t diminish that by focusing solely on decline.”

Dr. Carol Sargent, a respected gerontologist who works extensively with dementia patients, also weighed in.

“This campaign, while well-intentioned, reinforces the fear and stigma that already surround dementia. Yes, it is a devastating condition, but there are so many stories of people living well with dementia,” she said.

“We need to challenge these fatalistic narratives. If all we ever see are portrayals of dementia as a ‘long goodbye’, we are overlooking the strength and potential of those living with the disease. This kind of advertising can inadvertently dehumanise people with dementia by reducing them to their cognitive losses rather than recognising their remaining abilities.”

Dr. Carol’s point highlights a crucial ethical issue: how can campaigns raise awareness of the seriousness of dementia while avoiding perpetuating negative stereotypes? It’s a fine line to tread.

Advocates like Maxine and Dr. Carol argue that a balanced portrayal is needed — one that does not shy away from the difficult realities but also acknowledges the resilience and potential for meaningful experiences that remain for those living with dementia.

In contrast, for many family members who have watched their loved ones suffer, the campaign strikes a painful but truthful chord.

Grimly Familiar

As someone personally caring for a parent with dementia, I bring a different perspective to this debate. My mother was officially diagnosed with vascular dementia and Alzheimer’s disease in 2022, although her symptoms have been evident since 2019.

Initially, we believed her cognitive issues were a result of stress-related brain fog from her demanding job, and we clung to the hope that her condition would improve. When the official diagnosis finally came, it felt like a death in itself. The realisation that my mother’s condition was not temporary but would only worsen marked the start of a long, painful grieving process.

Although we remained positive and supportive for her, behind closed doors, my family entered a period of mourning.

Since then, every lost ability feels like another piece of her slipping away. At just 65, after only five years of symptoms, she now lives in an aged care facility. Despite round-the-clock family care and Level 4 home care support, keeping her safe at home became impossible. Now, she no longer knows my name or the names of other family members.

She cannot engage with us in any meaningful way, and her behaviour has become unrecognisable. Despite the best efforts of our family and the care staff, we are often left guessing about her needs, feeling helpless in the face of this cruel disease.

For me, the “Long Goodbye” campaign resonates deeply because it reflects my own reality. It has felt like losing my mother in stages, with each step in her decline delivering another devastating blow to our family.

Balancing Act

Of course, not everyone’s experience of dementia is like mine. Dementia manifests differently in every individual, and for some, the condition progresses more slowly. People with milder forms of dementia, or those in the earlier stages, can continue to live fulfilling lives for many years after their diagnosis.

These individuals may still enjoy relationships, maintain a sense of self, and find moments of joy and purpose despite the challenges they face.

For these families, the experience of dementia is not solely one of loss, and positive depictions of living with dementia may resonate more strongly than the bleak realities highlighted in campaigns like the “Long Goodbye.”

This is why some advocates push for more balanced portrayals of dementia, ones that celebrate resilience and adaptation alongside the inevitable decline.

The challenge, then, is how to strike the right balance in dementia advertising. Campaigns that focus exclusively on the suffering caused by the disease can alienate those whose experiences are not as grim, while overly positive portrayals may fail to capture the severity of the condition for families like mine.

The ethics of advertising dementia boil down to one central question: How do we raise awareness without perpetuating fear or diminishing the humanity of those living with the disease?

Perhaps the answer lies in expanding the scope of dementia storytelling. Campaigns should strive to present a fuller picture of what it means to live with dementia, incorporating both the difficult truths and the moments of grace, connection, and dignity that can persist even in the face of cognitive decline.

Only then can we foster a more compassionate and accurate understanding of this complex condition, honouring both the pain it causes and the resilience it demands.

For families like mine, the “Long Goodbye” campaign may feel heartbreakingly accurate, but it is important to remember that dementia is a spectrum.

For every story of grief and loss, there is also one of hope and perseverance. By acknowledging both realities, we can ensure that the public conversation around dementia reflects the diverse experiences of those who live with and care for people with this condition.