Challenging the stigma of dementia

Categories: Care.

At least 47 million people live with dementia worldwide and this number is growing by 9.9 million each year – the equivalent of a new case every three seconds or 27,123 over the course of World Alzheimer’s Day today.

When we talk about new ‘cases’ we can easily forget the human side of dementia – a side that is often hidden behind closed doors.

It is also easy to ignore the stigma and discrimination that people with dementia and their families face. This can range from the isolation caused by friends that have stopped visiting and services that are no longer accessible, to a culture of ostracism, aggression and even violence for people with dementia in some parts of the world.

“Stigma in wealthy countries can mean people with dementia are avoided, shunned or maltreated, but it’s a death sentence in Nigeria,” says Kikelomo Laniyonu Edwards, a leading dementia campaigner in Nigeria. At a meeting of the Global Alzheimer’s & Dementia Action Alliance at the World Health Assembly in May, Edwards reported, “stigma can mean violent death for people with dementia being seen as witches, or unintentional abuse like relatives locking the person away in a room.”

An estimated 58% of people with dementia live in low or middle income countries. With numbers predicted to rise to 131.5 million by 2050, the cost (set to reach US $1 trillion worldwide by 2018) will add significant financial strain to vulnerable countries’ budgets. Both the financial and human cost of dementia makes it a core development issue that can’t be ignored.

Forging partnerships and working together to challenge the stigma is at the heart of the Global Alzheimer’s & Dementia Action Alliance (GADAA) a network of international charities seeking to champion global action on dementia.

On the global stage momentum is beginning to build through improved collective working on research, policy making and community action. Dementia is recognised by the World Health Organisation (WHO) as a public health priority and consultation is underway for a WHO-led Global Plan of Action on Dementia for consideration by the 70th World Health Assembly in May 2017. Civil society collaboration is needed to cement recent gains.

Studies are increasingly showing that dementia is the most feared disease amongst adults. Yet it is possible to live well with the condition if the rights and needs of people with dementia are upheld. 

From international development organisations, health-focused NGOs, disability rights champions, human rights organisations, faith based groups, women’s organisations and beyond, the impact of dementia is cross-cutting and we all have a role to play. 

As the GADAA network grows, together we can make the world a better place for people living dementia, both now and in the future.

Amy Little is the Executive Lead for the Global Alzheimer’s & Dementia Action Alliance (GADAA).

Palliative care has been widely recognised as a key approach to improve the quality of life of people living with, and dying from, dementia, and their carers. Read the Worldwide Hospice Palliative Care Alliance (WHPCA) statement on palliative care and dementia on the WHPCA website. 

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