At a recent party, another guest, a nurse, asked what I do for a living. I explained that as a health policy researcher, my work focuses on helping health-care systems coordinate care for dementia as effectively as for major conditions like cancer, diabetes, or stroke. She stopped me mid-sentence.
“I don’t think you should use cancer as a comparison,” she said. “Cancer doesn’t have the stigma that dementia has. Most cancers can be treated and cured. Dementia can’t. You just can’t compare the two.”
The conversation brought to the forefront that dementia today occupies the same stigmatized, system-neglected space that cancer did half a century ago. And history shows us that stigma, not simply the absence of cures, delays progress.
Dementia taboos mirror cancer
Before the 1970s, a cancer diagnosis was widely considered a death sentence.[1] Most physicians did not disclose the diagnosis, despite surveys showing the majority of patients wanted to know. Doctors said they concealed the truth to avoid “taking away hope” and because families preferred that patients remain unaware.
The word cancer itself was taboo. Euphemisms like “a growth” or “the Big C” were used, if the illness was discussed at all. Cancer carried the stain of shame, seen by some as a sign of personal weakness, and still does, particularly in the case of certain types of cancers like lung or liver cancer. [2] Others viewed it as karma or divine punishment. People with cancer were quietly excluded, so much so that obituaries rarely listed cancer as the cause of death.[3]
Sound familiar? It should.
A 2022 Canadian survey of family physicians found that 75 per cent provided care to a patient with cognitive impairment whom they had not yet informed of a diagnosis. [4] The reasons varied: families or patients preferred not to know; clinicians felt they had no meaningful treatment to offer; or they feared “labelling” patients.
We still use dismissive expressions like “senior moment” in reference to symptoms of dementia. The word dementia itself literally translates to “out of one’s mind.” In many cultures, dementia is considered shameful and thought to be the result of witchcraft or punishment for a previous wrongdoing.[5][6]
And the social exclusion is real. Dementia advocate Kate Swaffer calls it ‘prescribed disengagement,’ the sense that society quietly ushers people with dementia out of public life.[7]
Cancer did not change its stigma entirely because it became curable. It became curable faster because stigma was specifically being addressed and advocacy coordinated to push for funding and system change.[8]
Stigma and system gaps preceded cancer breakthrough era
In fact, the first class of cancer treatments — options like surgery, chemotherapy, radiotherapy, and early hormonal therapies — were introduced as far back as the 1940s, but their survival benefits were modest, much like the first generation of Alzheimer’s drugs today.
Because stigma around cancer was so entrenched, people avoided screening, delayed seeking help or refused treatment altogether, reinforcing poor outcomes and deepening the stigma.[9]
Subsequent breakthroughs, like targeted therapies and other transformative drugs of the 1990s and 2010s, did change survival dramatically. But they landed in a landscape that had already been reshaped by something else: system co-ordination, focused, public stigma-reducing campaigns, and a dramatic shift in cancer research funding.
Advocacy built the foundation for cancer system change
Starting in the 1970s, through coordinated advocacy led by advocates like Mary Lasker, governments began large-scale injections of research funds for cancer, built organized screening programs, launched public awareness campaigns, created standardized care pathways, and invested in coordinating care infrastructure. [10]
Moving cancer out of silence and into public conversations also altered clinical behaviour. Physicians increasingly disclosed diagnoses and encouraged early diagnosis, enabling earlier intervention. Survivorship became part of the narrative. Anti-discrimination frameworks strengthened. Cancer came to be understood through a public health lens rather than a moral one.[11]
By the time highly effective therapies emerged, the system and society was far more ready for them.
Building conditions for change in dementia care
If we want the same for dementia, we need the same foundations: Co-ordinated care pathways with the infrastructure to support it, disclosure norms, national and provincial leadership bodies, and ongoing public education campaigns with government backing.
I am an optimist at heart. The fact that my dinner companion now sees cancer as relatively destigmatized is, paradoxically, a sign of hope. It shows how profoundly public understanding can change within a generation.
To shift the stigma means a shift in access to care and the system itself.
Cancer shows us that stigma reduction isn’t accidental. It is created through leadership, investment, and system design. Dementia deserves nothing less.
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Reference
[1] Knapp S, Marziliano A, Moyer A. Identity threat and stigma in cancer patients. Health Psychol Open. 2014 Sep 25;1(1):2055102914552281. doi: 10.1177/2055102914552281. PMID: 28070343; PMCID: PMC5193175.
[2] Timmermann, C. (2014). The Management of Stigma: Lung Cancer and Charity, circa 1990 to 2000. In: A History of Lung Cancer. Science, Technology and Medicine in Modern History. Palgrave Macmillan, London. https://doi.org/10.1057/9781137384232_7
[3] Myrick JG. Public Perceptions of Celebrity Cancer Deaths: How Identification and Emotions Shape Cancer Stigma and Behavioral Intentions. Health Commun. 2017 Nov;32(11):1385-1395. doi: 10.1080/10410236.2016.1224450. Epub 2016 Oct 14. PMID: 27739882.
[4] Low LF, McGrath M, Swaffer K, Brodaty H. Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners. Dementia (London). 2019 Oct-Nov;18(7-8):2856-2905. doi: 10.1177/1471301218761911. Epub 2018 Mar 15. PMID: 29544345.
[5] The Lancet Neurology. Dementia-related stigma is still pervasive. Lancet Neurol. 2024 Nov;23(11):1063. doi: 10.1016/S1474-4422(24)00404-6. PMID: 39424545.
[6] Rewerska-Juśko M, Rejdak K. Social Stigma of People with Dementia. J Alzheimers Dis. 2020;78(4):1339-1343. doi: 10.3233/JAD-201004. PMID: 33185610.
[7] Swaffer K. Dementia and Prescribed Dis-engagement. Dementia (London). 2015 Jan;14(1):3-6. doi: 10.1177/1471301214548136. PMID: 25503628.
[8] FITTS WT Jr, RAVDIN IS. What Philadelphia physicians tell patients with cancer. J Am Med Assoc. 1953 Nov 7;153(10):901-4. doi: 10.1001/jama.1953.02940270007002. PMID: 13096305.
[9]Johnson SE, Samson M. Cancer stigma: the need for policy and programmatic action. J Natl Cancer Inst Monogr. 2024 Jun 5;2024(63):45-50. doi: 10.1093/jncimonographs/lgae014. PMID: 38836525; PMCID: PMC11151329.
[10] Surh YJ. The 50-Year War on Cancer Revisited: Should We Continue to Fight the Enemy Within? J Cancer Prev. 2021 Dec 30;26(4):219-223. doi: 10.15430/JCP.2021.26.4.219. PMID: 35047447; PMCID: PMC8749321.
[11] Zheng S, Liu S, Yang Q, Chan S, Huang W, Jiang X, Zhu J. The effectiveness of interventions to reduce cancer-related stigma: An integrative review. J Clin Nurs. 2024 Jul;33(7):2438-2455. doi: 10.1111/jocn.17014. Epub 2024 Feb 12. PMID: 38345136.
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