We need to talk about dementia...CARDI blog
- Northern Ireland
- Republic of Ireland
Most people know about dementia but few understand it or want to talk openly about it, writes Nicola Donnelly, CARDI Communications Officer.
For many, the words dementia and Alzheimer’s provoke fear and horror but the simple fact is that rates are rising and most of us will be touched by it.
Dementia is a syndrome that affects memory, thinking, behaviour and ability to perform everyday activities. There are more than a 100 types of dementia and the main four types including Alzheimer’s disease are at present irreversible.
As our populations age dementia prevalence will grow as the greatest risk factor for dementia is age.
According to a 2011 MetLife survey in the USA, where there are 5 million sufferers, people dread getting dementia more than any other disease apart from cancer. 31% of people feared Alzheimer’s disease, while only 8% feared heart disease. Lack of knowledge accompanied this fearful attitude to the disease with 63% saying they knew or understood little about it. This is despite the fact that 44% had a family member diagnosed with dementia.
In the UK a 2011 YouGov survey, dementia came out ahead of cancer as people’s biggest fear. Fear can and does engender stigma about dementia both for those who live with it and their carers.
In its 2012 annual report Alzheimer’s Disease International (ADI) found that many people with the disease felt stigmatised and few spoke openly about their diagnosis. The stigma surrounding the disease not only deeply affects those with it and their families but has other impacts. ADI argues that lack of debate and discussion about dementia stunts research into the disease (with public spending on research into dementia estimated at just 10% of that spent on cancer research) and means lower diagnosis of the disease (just 1 in 4 people currently receive a diagnosis).
More recently, global leaders have placed dementia, rightfully considering its prevalence, at the centre of the public health agenda. At the most recent G8 meeting, UK Prime Minister David Cameron spoke about the need to invest in better research for dementia.
Well-known people living with dementia are slowly emerging to speak about their experiences. The former US President Ronald Regan revealed his diagnosis in 1994. Well-known author Sir Terry Pratchett has spoken openly about his own experience and how others react to his condition. He describes people being ‘lost for words’ around him.
Those caring for people with dementia have also come forward with their often painful experiences for example news journalist John Suchet who spoke of the heartbreaking decision to put his wife Bonnie into a long-term care facility. Most recently actress Prunella Scales was revealed to be living with dementia yet she continues to act on the London stage and her husband and she are re-learning their relationship.
Other well-known names have come forward to lobby governments for greater funding for dementia research and care including US comedian Seth Rogan who recently spoke to the US senate (watch here).
In recent years there have also been more cultural references to dementia with films such as Away from Her (2006) and Wrinkles (2011) and books such as All Gone by Alex Witchel and Where Memories Go by Sally Magnusson.
Greater awareness and research
These personal accounts and fictional representations are all powerful tools to help end the silence surrounding dementia and promote more debate around the condition. Breaking the silence on AIDS and HIV was helped by high profile people speaking out about the disease. Similarly, talking openly and honestly in public and in private can help break down the stigma that surrounds dementia. This openness can also help increase awareness which can not only benefit people with dementia but also those who care for them and their families and friends.
Research is also vital in helping individuals and society to meet the challenge of growing dementia prevalence. This research should investigate not only cures and treatments but also the individualised experiences of dementia and innovative models of care if it is to meet the needs of our ageing populations.
Global dementia: The Facts
- 44 million people are currently living with dementia worldwide.
- This number is predicted to rise to 76 million in 2030 and 135 million by 2050.
- The current economic cost of dementia is $604 billion annually (2010). These costs will escalate at least proportionally with numbers affected, particularly in low and middle income countries.
- So far, only 13 out of 193 WHO countries have national dementia plans in place.
Dementia in Ireland: The Facts
- 41,740 people in Ireland have dementia, by 2041 there will be over 140,000
- The overall cost of dementia care is estimated at just over €1.6 billion per annum
- 60-70% of people with dementia live at home
- 48% of all care for dementia is provided through informal family care
 Alzheimer’s disease International, World Alzheimer’s Report 2012. London: ADI.
 Alzheimer’s disease International, (2013) The Global Impact of Dementia 2013-2050. London: Alzheimer’s Disease International.
 Cahill, S, O’Shea, E & Pierce, M. (2012) Creating Excellence in Dementia Care: A research review for Ireland’s National Dementia Strategy. Dublin: Trinity College School of Social Work and Social Policy, Irish Centre for Social Gerontology, National University of Ireland, Galway.