Women as carers: gender considerations and stigma in dementia care

This year, International Women’s Day focuses on equality; both at the individual and collective level. Our individual actions, behaviours and mindsets have the ability to impact society at a large scale. If we each focus on making society equal for all, we can create a gender equal world.

In part one of this part two series for International Women’s Day, we look at the role of women as carers in dementia care. Originally published in the World Alzheimer Report 2019, ‘Women as carers: gender considerations and stigma in dementia care’ addresses the often overlooked role that gender plays when it comes to the role of a carer for those affected by dementia.

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Stigma, dementia and age

Silvia Perel-Levin is the Chair of the NGO Committee on Ageing in Geneva advocating for the human rights of older persons. She is also an independent consultant on ageing, health and communication.

She will appear as a panellist during ADI’s joint webinar with Dementia Alliance International (DAI) on 27 February.

Silvia moderating a side event on ageism at the Human Rights Council in July 2019.

“While dementia is not an inevitable result of ageing, people with dementia are likely to experience a double stigma, with the distinction between dementia stigma and ageism becomes blurred.

Growing old does not mean that we cannot do the things we like doing. However, the assumption that the decline is inevitable translates into prejudice and discrimination affecting all aspects of our daily lives. We are stripped of our rights in arbitrary ways on a routine basis based on wrong assumptions. We become invisible sufferers of social injustice.

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Challenging stigma in mental health: What we’ve learnt over 10 years

Time to Change aims to change the way we approach mental health.

In last year’s World Alzheimer’s Report, ADI looked at how dementia-related stigma is defined and how we can better understand it through its relation to power, stereotypes, prejudice and discrimination. Within the report, some of the expert essays and case studies examined this further by shedding light on the complexity of stigma.

Ruth Stone, Global Communications and Digital Manager, and Sue Baker, Director of Time to Change Global, contributed the case study, ‘Challenging stigma in mental health: What we’ve learnt over 10 years’. The piece looks at progress and continuing barriers for what is so well described as “the work of a generation”.


Ending mental health stigma is the work of a generation. I think that’s the most important thing we’ve learnt since starting Time to Change more than 10 years ago.

Stigma is deeply ingrained, through cultural norms, families, workplace culture, the media and even the words we speak. It is present at almost every level of society, which means our work takes time, perseverance, and a broad, flexible approach.

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Young Carers Awareness Day

by Annie Bliss, ADI Communications and Policy Manager

Globally we know that the number of people living with dementia is around 52 million and is set to triple to 152 million by 2050. We also know that every year, 82 billion hours are spent providing informal, unpaid care by family members in the home and that over 70% of this care is provided by women. (To put this in perspective, 82 billion hours is equivalent to 40 million full-time jobs).

Despite having these figures, something we know less about is young people providing this type of care.

One of the reasons we have so little information on this is that young people caring for a parent or relative with dementia do not typically self-identify as a ‘young carer’. This is common across other areas of health, and unfortunately prevents young people from accessing support services that can be crucial for them to cope with their caring responsibilities and look after their own well-being.

Youth participants in the Home Music Programme, set up by Alzheimer’s Indonesia (ALZI)
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Meera Pattabiraman, Chair of Alzheimer’s Disease and Related Disorders Society of India (ARDSI), on recent policy development around dementia

Meera Pattabiraman, Chair of ADI Member Alzheimer’s & Related Disorders Society of India (ARDSI), writes about ARDSI’s successful engagements with the Ministry of Health and Family Welfare in India, a country where over 5 million people live with dementia.

Alzheimer’s & Related Disorders Society of India (ARDSI) has been diligently following up with the Ministry of Health and Family Welfare since we submitted the Dementia India Strategy Report to then Health Minister, Sri. J P Nadda, last September. As we have a new Health Minister, it became imperative that we bring to his attention the mandate of the WHO’s Global Action Plan calling for all countries to develop their own national dementia plans.

Dr Radha Murthy, Vice Chair of ARDSI (right) and Meera Pattabiraman, Chair of ARDSI (centre), handing over the request for a national dementia plan to India’s Health Minister, Dr Harsh Vardhan.
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Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia

The Rauawaawa Kaumatua Charitable Trust in Kirikiriro, NZ. Photo courtesy of the Rauawaawa Kaumatua Chartiable Trust Facebook page.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Rangimahora Reddy and Pare Meha of the Rauawaawa Kaumātua Charitable Trust, as well as Dr Etuini Ma’u of the Waikato District Health Board and Professor John Oetzel of the University of Waikato, contributed this piece that delves into the complexities surrounding diagnosing mate wareware (dementia) in Māori communities and how tailored cultural programmes can aid in supporting the individual and their whānau (family).

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