World Alzheimer’s Day – Amplify the voices of dementia

World Alzheimer’s Day – Amplify the voices of dementia

This World Alzheimer’s Day amplify the voices of people affected by dementia and call attention to this global health priority.

Thursday 21 September 2017

Nearly 50 million people live with dementia worldwide and this number is growing by nearly 10 million every year – the equivalent of a new case every 3 seconds. To put that in perspective, over the course of today, more than 27,000 people will develop the disease worldwide.

There’s no ignoring the fact that dementia has become an urgent global health crisis that is only set to worsen. International diagnosis rates are low, people are receiving sub-standard or no care and stigma in many communities remains rife.

Tsepiso - Lesotho’s Alzheimer’s association
Tsepiso from Lesotho’s Alzheimer’s association

Lost voices 

“Can you imagine seeing an old woman walking alone at night, sometimes undressed? That’s a full explanation for a witch.” Tsepiso is a medical professional and volunteer staff member of Lesotho’s Alzheimer’s association.

“My father-in-law suffered with the same problem and he we lost him two years back, he was such a gentleman, dignified, commanded a lot of respect. When he was attacked by men, he just lost himself and that really got to me – as a counsellor seeing it that close was different – seeing him deteriorate and go through those stages pained me.”

In Lesotho – as with many countries across the globe – there is a lack of understanding that dementia is a medical condition. Too often around the world families, members of the public and even health professionals do not understand when someone presents with dementia symptoms. Worryingly, in some countries, there’s not even a word for dementia, with symptoms attributed to madness, curses or witchcraft.

As few as one in ten individuals receive a diagnosis for dementia in low and middle income countries, and less than half are diagnosed in high income countries. A lack of recognition or understanding of the condition permeates from within the community right up to a policy level and can have a devastating effect on individuals and whole countries.

Official silence
A lack of dementia public policy renders governments woefully unprepared for the dementia crisis. Silence on dementia also leaves individuals vulnerable to abuse or even violence. Risk-reduction strategies and earlier diagnosis of dementia could save governments money and protect millions by reducing the high cost of emergency and avoidable health interventions, improving care, and increasing the effectiveness of social, community and other care services. But first dementia awareness is needed. We need to make it known in every country, every community and every home that dementia is not a normal part of ageing, and not a curse, but one of the most prevalent medical conditions the world over, in need of urgent action.

Speaking out
On the global stage voices on dementia are getting louder through improved collective working on research, policy making and community action around dementia. In May this year, governments spoke out against dementia by adopting the first ever Global Action Plan on Dementia during the World Health Assembly. The Action Plan is a real breakthrough for the millions affected by the condition and calls on all governments to recognise dementia as a public health priority.

Spread the word
We now have a Global Dementia Action Plan, but international civil society needs to play its part to address stigma and deliver change for people living with dementia. We need as many voices as possible to spread the word that dementia is a global health, social care and rights issue that can no longer be ignored.

Tsepiso in Lesotho told us, “I was talking on a radio phone-in show about this problem and the response was beautiful – people were beginning to say ‘ok now we understand’ – and people were accepting that they have such people in their families. But the last caller said – ‘ok we understand what you’re saying, but we should still remember that we have witches’.”

And Then I Looked Up Dementia
And Then I Looked Up Dementia

To mark World Alzheimer’s Day the Global Alzheimer’s & Dementia Action Alliance has released a new short film ‘And Then I Looked Up Dementia – Women Speak Out.’ The film brings together the actress Carey Mulligan, women living with dementia, iNGO women’s specialists, dementia experts, government representatives and other activists to speak out for women affected by dementia everywhere. Women across the globe not only face a greater prevalence of the condition, but also provide the majority of care support and face the greatest stigma. Too often women affected by dementia are overlooked, but now they are speaking out.

Share ‘And Then I Looked Up Dementia – Women Speak Out’ this World Alzheimer’s Day, and use our GADAA toolkit to spread awareness of dementia in your network.

World Alzheimer’s Day, 21 September 2017, is part of the World Alzheimer’s Month campaign led by Alzheimer’s Disease International aiming to raise awareness and champion the rights of people with dementia.