Lack of understanding of dementia impacts diagnosis, treatment and quality of life
Believing that dementia is a normal part of aging remains the most widespread misconception about the condition, according to a systematic review led by researchers from Trinity College Dublin and the Dementia Services Centre at St James’s Hospital in Ireland. The review synthesised findings from 40 studies conducted across 15 countries over the past two decades and shows that public knowledge of dementia and Alzheimer’s disease is generally limited.
The research team, based in the School of Social Work and Social Policy at Trinity, found repeated confusion about when ordinary, age-related memory changes cross the line into dementia. Many people assume memory decline is inevitable with age, and are uncertain about which symptoms should prompt medical assessment. This misunderstanding can delay diagnosis, reduce access to effective treatment and support, and diminish quality of life for people living with dementia and their caregivers.
One clear pattern in the review was the low awareness of modifiable risk factors. While genetic risk was reasonably well understood, people were less likely to recognise cardiovascular and lifestyle contributors such as high blood pressure, high cholesterol and smoking. In one UK survey from 2012, only about a quarter of respondents knew that hypertension and high cholesterol increase dementia risk. A 2012 French study found only a little more than one third of respondents identified smoking as a risk factor.
These gaps matter because a growing body of evidence links vascular health and other modifiable factors to cognitive decline in later life. Associate Professor Suzanne Cahill, Director of the Dementia Services Information and Development Centre and lead author of the review, stresses that brain health is closely tied to physical and mental health across the life course. She argues that public health programmes should integrate dementia risk reduction into broader prevention and health promotion strategies at all life stages.
The review highlighted pronounced disparities in dementia knowledge. Education level and gender were associated with better awareness; in general, women and people with higher education showed greater understanding. By contrast, racial and ethnic minority groups often had particularly poor knowledge, with a range of myths about causes and prognosis reported in the literature. The authors recommend targeted educational and advocacy programmes for populations with the lowest awareness, especially in low- and middle-income countries where prevalence and care challenges are growing rapidly.
Several national surveys illustrate the scale of the misconception. A 2006 survey of older adults in Istanbul found that two thirds of respondents considered dementia a normal part of aging. A 2014 French survey reported that 74% of the general public believed memory loss was a normal consequence of getting older and that many people struggled to recognise early-stage dementia. In Ireland, a random-sample study from 2012 found that 42% of people aged 65 and older believed dementia was a normal feature of old age compared with 28% of younger respondents.
Dementia also imposes substantial economic and social costs. Associate Professor Cahill notes that most care is provided by family members, often unpaid, and that these informal care costs are a major part of the overall burden. The global cost of dementia in 2015 was estimated at approximately €818 billion, underscoring the heavy financial and societal impact of the condition.
Public misunderstanding can have serious social consequences. People experiencing cognitive symptoms may face stigma, embarrassment or social withdrawal when symptoms are misunderstood or minimised. Family carers often become isolated as friends, neighbours and extended family members withdraw or do not know how to respond. Improved public education could reduce stigma, promote earlier diagnosis, and support better outcomes for both people living with dementia and their carers.
Study: A systematic review of the public’s knowledge and understanding of Alzheimer’s disease and dementia, conducted over a 20-year period and including 40 published studies. The review assessed how knowledge was measured, sampling methods and instruments used, and summarised key findings on public awareness and misconceptions.
Key findings: General public knowledge was only fair to moderate in most studies. The most common misconception was that dementia is a normal part of aging. Knowledge of modifiable risk factors was poor, and awareness was particularly low among some racial and ethnic minority groups and in lower-income settings. Education and gender were associated with better knowledge.
Implications: The authors call for integrated public health strategies that include dementia risk reduction across the life course, and for targeted education and advocacy efforts—especially in low- and middle-income countries and among groups with the lowest awareness—to improve early recognition, reduce stigma, and support families and communities affected by dementia.
Research citation: Cahill S., Pierce M., Werner P., Darley A., Bobersky A. “A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia.” Published in Alzheimer’s Disease and Associated Disorders, online September 2015.