In the late 1970s, dementia became a major public issue in the USA. A coalition of caregivers, influenced by changing perceptions of ageing, joined forces with neuroscientists and government officials to advocate for funding in ageing-related research.

Central to the coalition’s approach was the assertion that age-associated dementia should be seen as a disease rather than a natural consequence of ageing. Gerontology and geriatrics, in general, advocated the idea that ageing itself should not typically be accompanied by disease and disability.

Neurologist Robert Katzman played a prominent role in advancing this notion, suggesting that Alzheimer’s disease should encompass previously distinct types of dementia as a unified category. This redefinition gained widespread recognition and led to significant research funding.

By combining various categories of dementia, the scale of the problem was emphasised, and with the approaching ageing of the baby-boomer generation, it was anticipated to become even more substantial. Public campaigns organised around this redefinition were highly successful, making “Alzheimer’s” a widely recognized term and prompting a substantial federally funded research initiative by 1980.

However, unintended consequences included inadequate support for caregivers and increased stigma surrounding dementia. Advocates used “apocalyptic demography” to secure funding, suggesting that only finding a cure could prevent a future surge in dementia cases, which would overwhelm the healthcare system.

As a result, biomedical research received substantial funding, but support for caregivers and innovative care approaches remained limited. The portrayal of irreversible suffering whilst living with Alzheimer’s disease deepened the stigmatisation of individuals with dementia and intensified societal anxiety about ageing.

Source: AMA J Ethics. 2017;19(7):713-719