Global survey reveals ‘startling’ lack of knowledge on dementia

Is dementia a neurodegenerative disorder or just a natural part of getting older?
 
The answer to that question, it seems, is not as clear as it perhaps should be, even for health professionals.
 
According to Alzheimer’s Disease International’s (ADI’s) World Alzheimer Report 2019: Attitudes to dementia, a global survey of 70,000 people across 155 countries, 62% of healthcare practitioners still think it is a normal part of ageing.
 
Close to all participants (95%) believe they could develop dementia, with one in four believing there was nothing they could do prevent it.
 
‘It highlights there is so much more work that we need to do to disrupt these myths,’ Dementia Australia CEO Maree McCabe told Fairfax.
 
‘Dementia is not a normal part of ageing. It is a medical condition and disease of the brain. It’s more common as we age, but there are many people in the world with younger onset dementia in their 40s and their 50s.’
 
The ADI report, the world’s largest survey on attitudes to dementia, included four demographic groups: people living with dementia, carers, healthcare practitioners, and the general public.
 
The survey revealed a concerning level of stigma associated with dementia, ‘preventing people from seeking the information, advice, support and medical help that could dramatically improve their length and quality of life’.
 
‘The consequences of stigma are therefore incredibly important to understand,’ ADI’s CEO Paola Barbarino said.
 
‘At the individual level, stigma can undermine life goals and reduce participation in meaningful life activities, as well as lower levels of wellbeing and quality of life.
 
‘At the societal level, structural stigma and discrimination can influence levels of funding allocated to care and support.’
 
People living with dementia reported feeling ‘avoided’, ‘ostracised’ and ‘ignored’ in their social life due to their dementia, and half of all respondents from lower-middle income countries reported having their rights or responsibilities taken away from them. Sixty per cent of the general public felt it was important to remove responsibilities of people living with dementia.
 
The fact nearly half of respondents (48%) believe a person’s memory will never improve once they have dementia was cited as another barrier to seeking treatment.
 
The report also found that around 50% of respondents living with dementia feel ignored by healthcare professionals (physicians and nurses), while a third of people (33%) thought health professionals would not listed to them if they had dementia.
 
The number of people living with dementia globally is forecast to more than triple in coming decades, from more than 50 million to 152 million by 2050. More than 447,000 Australians currently live with dementia.
 
Other key findings:

• 78% of the general public are concerned about developing dementia at some point
• One in five people attribute dementia to bad luck, almost 10% to God’s will and 2% to witchcraft
• 35% of carers across the world said they have hidden the diagnosis of dementia of a family member
• More than 50% of carers globally say their health has suffered as a result of their caring responsibilities (even while expressing positive sentiments about their role)
• 40% of the general public think doctors and nurses ignore people with dementia
• Someone in the world develops dementia every three seconds
• Alzheimer’s disease and other dementias are the fifth-leading cause of death globally

ageing dementia global survey stigma