For decades, cancer was known as “the C word” — a term spoken in hushed tones, cloaked in fear and stigma. It carried a dark shadow of secrecy, a diagnosis too heavy to discuss openly in polite company. Those affected by cancer were often left to face it alone, with minimal public understanding or support.
But over the years, this secrecy and stigma dissolved. Today, cancer is no longer treated as an unspeakable condition. It is openly discussed, widely researched, and collectively fought against. Public campaigns, survivor stories, and relentless advocacy have transformed the conversation. What was once taboo is now a rallying point for unity and action, offering hope and progress.
Yet, as one stigma fades, another takes its place. Dementia is now the “D word” — a condition that remains steeped in fear, misunderstanding, and silence. At the Fighting Dementia Podcast, we’ve observed firsthand how dementia is where cancer used to be: whispered about but not confronted. The “D word” needs to take the same journey as the “C word” — out of the shadows, into public discourse, and into the realm of hope and collective effort.
This article explores the parallels between dementia and cancer, why dementia remains a taboo issue, and how we can draw inspiration from the fight against cancer to change the narrative around dementia.
Dementia: The Modern Taboo
Dementia, a progressive neurological condition affecting memory, cognition, and behaviour, impacts over 55 million people globally, according to the World Health Organisation (WHO). By 2050, this number is set to rise to 139 million. Despite its growing prevalence, dementia remains a deeply stigmatised and misunderstood condition.
Why? Much like cancer in the past, dementia evokes fear and discomfort. It is associated with a loss of self: the deterioration of memory, independence, and identity. For many, the prospect of dementia is too distressing to contemplate, leaving discussions around it buried under silence. This fear also often leads to a culture of denial, where families avoid recognising or addressing symptoms until it is too late.
But as we saw with cancer, this silence is damaging. Avoiding conversations about dementia perpetuates isolation, delays early intervention, and hinders progress in research and support networks. Just as ignoring “the C word” once added to cancer patients’ suffering, keeping the “D word” locked away only fuels its stigma and deepens its impact on individuals and families.
Lessons from the Cancer Movement
The evolution of public discourse around cancer offers a powerful blueprint for how we can tackle the stigma of dementia. Cancer advocacy didn’t just happen — it took decades of effort, commitment, and courage to foster openness, understanding, and solidarity.
So, what changed? Here are some key moments in the cancer movement that offer lessons for addressing dementia:
1. Raising Public Awareness
From the launch of Breast Cancer Awareness Month to events like Race for Life, cancer campaigns made the disease impossible to ignore. Symbols like the pink ribbon or events like charity marathons created tangible ways for people to feel involved in the fight against cancer.
Similarly, dementia needs its own awareness campaigns that are accessible, visible, and engaging. Thoughtful symbols and movements could help normalise conversations and rally public support. For instance, initiatives like Dementia Action Week in the UK are strong starting points but need an even broader reach.
2. The Power of Celebrity Advocacy
Angelina Jolie in 2014
When high-profile figures opened up about their experiences with cancer — such as Angelina Jolie discussing her preventative double mastectomy or broadcaster Terry Wogan’s involvement with fundraisers like Children in Need — it helped humanise the issue. It showed that cancer does not discriminate and can affect anyone.
Dementia advocacy needs similar moments of visibility. When public figures such as the actor David Baddiel or Dame Barbara Windsor's husband share their journeys with dementia, it not only raises awareness but also helps dismantle stereotypes and encourages others to speak up.
3. Shifting the Narrative
In the past, cancer was associated with hopelessness and despair. But over time, the narrative shifted towards survivorship, resilience, and hope. This was achieved by highlighting stories of recovery, medical advances, and the strength of the human spirit.
Although dementia currently has no cure, it is essential to focus on meaningful moments. Highlighting personal stories of connection, moments of joy, and the remarkable work of carers can create a more nuanced and compassionate narrative.
4. Community and Support Networks
Cancer advocacy groups created vital support networks where patients and caregivers could find solidarity and understanding. These networks replaced isolation with community, showing individuals that they were not alone in their fight.
Similarly, dementia-friendly communities are being established, but more needs to be done. Offering spaces — both physical and virtual — where those living with dementia and their carers can connect, share experiences, and access resources is critical.
5. Funding and Research
Cancer research has received a significant boost over the decades, benefiting from public fundraising campaigns and government grants. In contrast, dementia research remains underfunded despite its growing impact on society. According to Alzheimer’s Research UK, only 1.6% of the UK’s medical research budget is currently allocated to dementia, compared to 19% for cancer research. This disparity highlights the urgent need to bring dementia research to the forefront of public and political attention.
Increasing public understanding of the need for dementia research — and demonstrating how financial contributions can lead to breakthroughs — is essential for driving progress. Investment in dementia research isn’t just about finding a cure; it’s about improving the lives of those living with dementia today and developing better care strategies for tomorrow.
Changing the Conversation Around Dementia
To bring dementia out of the shadows, we need to normalise discussions and create a culture of openness. At the Fighting Dementia Podcast, we’ve identified several strategies that can help:
1. Encouraging Open Dialogue
As with cancer, the first step is to start talking. From casual conversations at home to larger public discussions, breaking the silence is key. Families can begin by addressing early warning signs and seeking support together, while organisations can provide accessible forums for discussion.
2. Educating the Public
Misconceptions about dementia perpetuate stigma. Many still equate dementia solely with memory loss or assume it’s just a natural part of ageing. Public education campaigns must address these myths, highlighting the full spectrum of symptoms and the importance of early diagnosis.
3. Celebrating the Positives
While dementia is undeniably challenging, there are moments of hope, humour, and human connection. Sharing positive stories — whether it's a moment of clarity between loved ones or a carer’s extraordinary act of kindness — can help reframe the narrative.
4. Building Dementia-Friendly Communities
Dementia-friendly communities, already gaining traction in parts of the UK, are spaces where people with dementia can live, work, and socialise without fear of stigma. Expanding these communities can show the world that life with dementia is still rich with potential.
5. Advocating for Research and Support
We must demand greater investment in dementia research and care services. Just as cancer charities successfully campaigned for increased funding, dementia organisations need a united voice to push for breakthroughs in treatments, support systems, and policies.
The Time for Change is Now
The fight against dementia is urgent. As our population ages, dementia will affect more individuals, families, and communities than ever before. But the stigma surrounding it remains a major barrier to progress. Silence and fear lead to missed opportunities for early intervention, loneliness for carers, and slower research progress.
Yet, history shows us that stigma can be challenged. Cancer was once a disease steeped in secrecy, yet today it is a cause that has galvanised global action. Dementia can — and must — take the same path.
Whether it’s through sharing your own experiences, supporting awareness campaigns, or simply starting a conversation, each of us can play a part. Let’s ensure that the “D word” no longer inspires silence or fear, but instead becomes a rallying cry for understanding, action, and hope.
Conclusion: Becoming Dementia’s Advocates
At the Fighting Dementia Podcast, we are committed to changing how the world views and addresses dementia. By following the blueprint laid out by cancer advocacy, we can create a future where dementia is no longer taboo.
It’s time to make the “D word” a cause that unites us — not in fear, but in determination. The journey begins with a conversation. Let’s start today.
References
World Health Organization (WHO), “Dementia: Key Facts,” 2023.https://www.who.int/news-room/fact-sheets/detail/dementia
Alzheimer’s Association, “2023 Alzheimer’s Disease Facts and Figures.”https://www.alz.org/alzheimers-dementia/facts-figures
Cancer Research UK, “History of Cancer Awareness Campaigns.”https://www.cancerresearchuk.org/about-cancer/early-diagnosis/history-of-cancer-awareness-campaigns
National Institute on Aging (US), “Understanding Dementia and Its Symptoms.”https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis
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