Time is now: Rural women affected by dementia demand action

Time is now: Rural women affected by dementia demand action

Wednesday, 8 March 2018

To mark International Women’s Day 2018 we see how rural women’s lives can be devastated by dementia, and celebrate the courageous women standing up for change.

Around 50 million people live with dementia worldwide and this number is growing by nearly 10 million each year – the equivalent of a new case every 3 seconds. We know that dementia affects more women than men globally and the condition is in the top five causes of death for women worldwide. Yet dementia remains a hugely misunderstood health condition. Rural women can face the most extreme stigma due to a lack of awareness. The time is now for rural and urban activists to transform women’s lives.

Echoing the priority theme of the upcoming 62nd session of the UN Commission on the Status of Women, this year we draw attention to the rights and activism of rural women affected by dementia.

Horrific treatment

In 2010 in a small village in the south of Ghana, Ama Hemmah was doused in petrol and set alight. She suffered horrific burns and died the following day. According to her son, her only crime was “exhibiting signs of forgetfulness and other symptoms of old age.” He said that she had lately been acting differently, forgetting things, talking to herself, and was sometimes aggressive.

Seeing Ama displaying this behaviour, five members of the local community, including a pastor attacked her. The attackers say her death was an accident and that they were trying to exorcise an evil spirit from the woman. However, the local police reported that Ama had been subjected to severe torture, in an effort to get her to confess to being a witch. The attackers finally poured a gallon of kerosene over Ama and set her ablaze. She died less than 24 hours later.

Turning shock into activism

Esther Dey, a nurse who had just moved from Ghana to the UK to study medical ethics read about Ama’s story in horror. She immediately changed her plans, feeling compelled to help. Despite studying general nursing for four years in Ghana, Esther had never learned about dementia. After working in a care home in the UK Esther realised that Ama must have been living with dementia.

“I wanted to learn and to come home to help; there was nothing in Ghana to help people with dementia”

Esther Dey, founder and president of the Alzheimer’s and Related Disorders Society of Ghana

Esther changed her university programme and pursued a two year course in dementia studies. She returned to Ghana in 2012 and founded the Alzheimer’s and Related Disorders Society of Ghana. Now a member of Alzheimer’s Disease International. Today, Esther spends hours every day giving advice to families and advocating for dementia understanding in her country. Esther works as a nurse, looks after her young children and also supports her mother who now lives with dementia.

A new response

Esther with her mother Margarete, who is living with dementia.

Years later, in 2016, another older woman was found in a rural village outside of Accra. Naked and clearly confused local people started abusing her in the street. This time the police intervened and contacted Alzheimer’s Ghana, as they had seen Esther on local TV news talking about signs of dementia. Esther and her team met the women at the police station and helped to identify her family. It transpired that she had been lost for three days and walked miles from her house. She was reunited with her family and this time the story had a happy ending. After all of Esther and Alzheimer’s Ghana’s hard work and dedication, the police are now aware that if they see an older person showing signs of dementia, they must seek medical help.

Time is now

To act for rural women affected by dementia, awareness and service coverage is vital – communities must recognise that dementia is a medical condition and governments must face the impending dementia crisis.

Alzheimer’s Disease International is leading the call for all governments to progress national policies to advance the awareness, prevention and diagnosis, treatment, research and care for those affected by dementia.

International civil society organisations also have a major role to play in global action on dementia and can join the Global Alzheimer’s & Dementia Action Alliance to work with other iNGOs on this urgent cause.

Without action we risk leaving some of the most underserved and marginalised women behind.

The time is now for governments and international civil society actors around the world to get behind this global challenge and unite for a world where no woman is left behind because of her dementia.

Dementia is a global women’s health and human rights issue that can no longer be ignored.

Take action to get it right for every woman affected by dementia around the world this International Women’s Day.

Further reading

Global Alzheimer’s & Dementia Action Alliance

Alzheimer’s & Related Disorders Association of Ghana

Alzheimer’s Disease International

Age International

Dementia Alliance International