THE BLOG

Women And Dementia: The Overlooked Majority

15/09/2017 09:47

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 sub-standard or no care and stigma in many communities remains 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. 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. Research shows that women not only face a greater prevalence of the condition, but also fulfil the majority of care support and face the greatest stigma.

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 their job opportunities, either reducing their hours or ceasing work altogether. They are subsequently left vulnerable to financial hardship.

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Sarah (not her real name) cares for her older sister who lives with advanced dementia in South Africa. Sarah has taken her young daughter out of school to help with caring duties and to save money to support the family

These 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.

A cruel paradox means that while often relied on as care partners, women are also significantly more likely to develop dementia themselves. Around the world, a greater proportion of women than men live with dementia. Once they have overcome the initial barriers to getting a diagnosis, women can also face discrimination in care. 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.

Too often around the world, in every country, families do not understand what is wrong with their loved ones when they develop dementia. In this situation, a simple first step is dementia awareness. Community health workers and volunteers must first be taught that dementia is a medical condition, and then take further steps to utilise the tools that exist to support diagnosis and care.

Worryingly, in some countries, there's not even a word for dementia, with many people affected accused of witchcraft and at risk of daily threats of violence. A lack of recognition or understanding of the condition permeates from within the community right up to a policy level. There is a universal stigma surrounding the condition and extreme forms of discrimination can lead to the abuse of women. Older women are particularly vulnerable to what has been called 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.

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Kiki Laniyonu Edwards a leading dementia advocate in Nigeria features in a new film released for World Alzheimer's Day 'And Then I Looked Up Dementia - Women Speak Out.' As in many parts of the world, the stigma and misunderstanding of dementia that exists in Nigeria is extensive and can be dangerous. People with dementia are commonly 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 are often 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.

Next year, dementia will become a $1trillion 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 and Dementia Action Alliance (GADAA) is urging global leaders to recognise dementia as a medical condition that needs urgent action, and unite in ensuring 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.

International civil society also has a role to play in addressing the stigma and in delivering change for people living with dementia. We need as many voices as possible to spread the word that dementia is not a normal part of ageing, and not a curse, but one of the most prevalent and under-supported medical conditions the world over.

This World Alzheimer's Day - and beyond it - unite with us in recognising dementia as a global women's health, social care and rights issue that can no longer be ignored.

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