There’s no escaping from the fact that dementia has become an urgent global health crisis that is only set to worsen.
Global diagnosis rates are low, people are receiving substandard or no care and stigma in many communities remain rife. But while there is growing recognition of the scale of the problem, there is a key issue that continues to be significantly overlooked.
Women are disproportionately affected by dementia. In the Women & Dementia: A Global Challenge report, the World Health Organisation lists dementia as one of the top ten causes of death for women and it is the top cause of death for females in the UK.
Amy Little, our Executive Lead on Global Alzheimer’s and Dementia Action Alliance, explains why dementia is a global women’s health, social care and rights challenge that can no longer be ignored.
Dementia risk in women
Women are more at risk of dementia than men with women making up to 65% of people who currently have the condition in the UK.
Once they have overcome the initial barriers to getting a diagnosis, women can also face discrimination in care. For example, a recent UK study identified that women living with dementia are more likely than men to be prescribed psychotropic medication that can negatively affect their physical health.
Women as care providers
Research shows that women not only face a greater prevalence of the condition, but also fulfil the majority of care support roles.
Internationally, women account for two in three providers of dementia care support. Cultural norms, particularly in lower and middle-income countries, often determine that a mother, daughter or daughter-in-law should assume the role of family carer.
These unpaid care responsibilities mean many women are forced to sacrifice job opportunities, either reducing their hours or ceasing work altogether. They’re left vulnerable to financial hardship as a result.
Gendered roles can become even more complex, with women in some communities unable to detach from their responsibility as homemaker and family carer.
One woman in India told us that she moved away from her family to receive dementia and cancer care, as she wanted to preserve her self-respect by not relying on her relatives.
Stigma around dementia
Too often around the world, in every country, families do not understand what is wrong with their loved ones when they develop dementia.
Worryingly, in some communities, there’s not even a word for dementia as a lack of recognition or understanding of the condition permeates from community level right up to a policy level.
There’s a universal stigma surrounding the condition and extreme forms of discrimination can lead to the abuse of women.
Older women are particularly vulnerable to a ‘triple jeopardy’, discriminated against because of their sex, age and medical condition. Some people are bound by a cultural stigma that forbids them seeking external help. The ramifications of these misunderstandings are dangerous and can sometimes lead to abuse.
In this situation, a simple first step is dementia awareness. Teaching community health workers and volunteers that dementia is a medical condition is so important. Steps should then be taken to utilise the tools that exist to support diagnosis and care.
Kiki Laniyonu Edwards, a leading dementia advocate in Nigeria, features in a new film released for World Alzheimer’s Day called ‘And Then I Looked Up Dementia – Women Speak Out.’
As in many parts of the world, the stigma and misunderstanding of dementia in Nigeria is extensive and can be dangerous.
People with dementia can be labelled as witches, and sometimes abandoned by their families for fear they too will be accused of witchcraft because of courtesy stigma. When they are not abandoned, people with dementia may be locked away without proper care and support to manage their symptoms.
Kiki herself has been accused of witchcraft due to her care support and association with people living with the condition.
Global leaders need to take action
Next year, dementia will become a $1 trillion disease that’s a cost greater than the GDP of all but the 15 richest economies in the world. There’s no longer time to shirk our global responsibility to address this issue.
The Global Alzheimer’s & Dementia Action Alliance (GADAA) is urging global leaders to recognise dementia as a medical condition that needs urgent action. We need to unite to ensure better diagnosis, care, research and awareness through the development of national dementia plans in every country in the world.
But so far only 12 countries have taken into consideration the needs of women in their commitments and only 29 countries have a national dementia plan.
Around the world, people remain trapped in a perennial struggle to access the diagnosis, care and support that they desperately need – and for women, the challenge is even greater.