Lack of understanding of dementia impacts on diagnosis, treatment and quality of life.
Believing that dementia is a normal part of aging is the most common misconception about dementia, according to a new study conducted by researchers at Trinity College Dublin and St James’s Hospital’s Dementia Services Centre in Ireland.
In a systematic review of 40 research articles from 15 different countries including Northern Ireland, published over the last 20 years, researchers at Trinity’s School of Social Work and Social Policy have found that the general public had a limited understanding of dementia and Alzheimer’s Disease.
The most common misconception among the general public was that dementia was a normal part of aging and there was a lack of clarity about at what point normal age-related memory loss becomes severe enough to indicate dementia. There was also an absence of awareness of the role that modifiable risk factors played in the development of the disease pointing to the need for governments to incorporate risk reduction programmes on dementia into all aspects of public health campaigns.
Dementia is a hugely costly illness and is a leading cause of disability and dependence worldwide, explains Suzanne Cahill, Director of the Dementia Services Information and Development Centre, and Associate Professor of Social Work and Aging at the School of Social Work and Social Policy at Trinity, who led the research team. Most of these costs are incurred by family members who generally provide the main bulk of care services free of charge. The worldwide cost of dementia for 2015 has recently been estimated to be €818 Billion.
“Lack of public understanding of dementia has negative consequences for both the individual coping with the symptoms and for family caregivers. The individual may experience stigma, embarrassment and ridicule due to negative societal attitudes and retreat from activities once enjoyed and the caregiver may experience social isolation since neighbours, friends and family gradually withdraw, not knowing how to behave.”
The research, which has just been published in the peer-reviewed journal Alzheimer’s Disease and Associated Disorders, also found that knowledge of dementia was particularly poor among racial and ethnic minority groups where several myths about the causes of dementia were found. Where demographic variables were examined, education and gender appeared to be associated with good knowledge – women were by and large better informed than men and better educated people had higher levels of knowledge.
In almost half of the studies reviewed, poor to very limited levels of knowledge of dementia were reported. A common misconception found across these studies was that dementia is a normal part of aging. For example, in a large survey of older people in Istanbul in 2006 it was shown that two thirds of their respondents considered dementia to be a normal occurrence in old age. A more recent French survey in 2014 found that 74% of the general public believed it was normal to lose one’s memory with increasing age and most people had difficulty recognising early stages of dementia. In a 2012 Irish study, where random sampling was used, 42% of those aged 65 and above, compared with 28% of middle aged and younger people, believed that dementia was normal in older people.
Another common misconception identified by the research team was that individuals have no control over whether or not they develop dementia. While public knowledge about the genetic risks was fair to good, knowledge about modifiable risk factors such as high blood pressure, smoking and high cholesterol was poor. For example, in one UK study in 2012 only about a quarter of respondents were aware that hypertension and high cholesterol increase an individual’s risk of developing dementia and in another study (France, 2012) just over one third of respondents identified smoking as a risk factor.
“Increasingly the research evidence is pointing to the role cardiovascular risk factors play in contributing to dementia; it demonstrates that brain health and cognitive functioning in later life are deeply embedded in physical and mental health in early life and governments need to incorporate risk reduction programmes on dementia into all aspects of public health policies. The research findings point to the need for health promotion and prevention policies to be developed for all stages of life and for more educational and advocacy programmes to be designed targeting in particular those from low to middle-income countries where knowledge levels are particularly poor and where prevalence rates are rising exponentially,” Associate Professor Cahill added.
Source: Fiona Tyrrell – Trinity College Dublin
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Original Research: Abstract for “A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia” by Cahill, Suzanne; Pierce, Maria; Werner, Perla; Darley, Andrew; and Bobersky, Andrea in Alzheimer’s Disease and Associated Disorders. Published online September 2015 doi:10.1097/WAD.0000000000000102
A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia
This paper reports findings from a systematic review of the literature on the general public’s knowledge and understanding of dementia/Alzheimer’s disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national. The review revealed a lack of consistency across studies regarding how knowledge was operationalized, approaches to sampling, response rates, and data collection instruments used including validated scales. A consistent finding across the vast majority of studies was the only fair to moderate knowledge and understanding the general public had. The most common misconception was that dementia was a normal part of aging and there was a lack of clarity about at which point normal age-related memory loss problems become severe enough to indicate dementia. Knowledge of dementia was found to be particularly poor among racial and ethnic minority groups where several myths about causes of dementia were found. Findings point to the need for more educational and advocacy programmes on dementia to be developed particularly in low-income to middle-income countries.
“A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia” by Cahill, Suzanne; Pierce, Maria; Werner, Perla; Darley, Andrew; and Bobersky, Andrea in Alzheimer’s Disease and Associated Disorders. Published online September 2015 doi:10.1097/WAD.0000000000000102