Women are more informed than men, and better-educated people have higher levels of knowledge, according to research conducted at Trinity College Dublin and St James’s Hospital’s Dementia Services Centre.
In a review of 40 studies from 15 different countries including the North, published over the last 20 years, researchers at Trinity’s School of Social Work and Social Policy found the general public have a limited understanding of dementia and Alzheimer’s Disease.
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 costly illness and a leading cause of disability and dependence worldwide, said 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 €818bn.
“Lack of public understanding of dementia has negative consequences for both the individual coping with the symptoms and for family caregivers,” said Prof Cahill.
“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, published in the journal Alzheimer’s Disease and Associated Disorders, also found that knowledge of dementia was particularly poor among racial and ethnic minority groups.
In almost half of the studies reviewed, poor to very limited levels of knowledge of dementia were reported.
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. Knowledge about modifiable risk factors such as high blood pressure, smoking, and high cholesterol was poor.
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 French study just over one third identified smoking as a risk factor.
“Increasingly, the research evidence is pointing to the role cardiovascular risk factors play in contributing to dementia,” said Prof Cahill. “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 number of younger people with Alzheimer’s disease who die in the North and Britain rises by more than half in winter but by less than 10% in the Republic, according to the HSE.
The extraordinary disparity between the north and south of Ireland has emerged from a new UK study which shows that 40% more people with Alzheimer’s Disease or Related Dementia (ADRD) die in winter there than at other times of year, with the figure rising to 56% among ADRD patients aged under 75.
Although excess winter deaths from ADRD were evident in the Republic, the rates were dramatically lower at 27% in the over 75 year olds and even lower at 9% among those under 75.
Anne O’Farrell of the HSE’s Health and Wellbeing Directorate told the Energy Action conference on fuel poverty in Dublin yesterday that further research into the reasons for the much lower incidence of excess winter deaths from dementia in the Republic of Ireland is necessary.
While figures for the Republic are lower than the North, they are still twice those of Norway where homes are better insulated.