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.

Continue reading “Stigma, dementia and age”

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.

Continue reading “Challenging stigma in mental health: What we’ve learnt over 10 years”

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)
Continue reading “Young Carers Awareness Day”

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.
Continue reading “Meera Pattabiraman, Chair of Alzheimer’s Disease and Related Disorders Society of India (ARDSI), on recent policy development around dementia”

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).

Continue reading “Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia”

Stigma and response to dementia in Guatemala’s Indigenous population

Prof Ricardo F. Allegri, MD, PhD and María Cecilia López Murga at XII Congreso Iberoamericano de Alzheimer, November 2019. Photo courtesy of Asociación Group Ermita Alzheimer de Guatemala

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

María Cecilia López Murga, the Executive of Asociación Group Ermita Alzheimer de Guatemala, contributed an essay that focuses on the sometimes difficulty in addressing dementia within Guatemala’s Indigenous communities and how Asociacion Group Ermita tries to address these challenges.

María Cecilia writes:
Dementia in Guatemala, in our indigenous peoples, is a taboo. The most numerous Indigenous people in the country is the Maya because it represents 39.3% of the total population and is made up of 22 linguistic communities, so for us it is a total challenge.

With the promotion and communication of our Association and with the use of social networks we have been able to reach the interior of our country and somehow make ourselves present in these communities who already come to our Grupo Ermita Association to seek help, support, comfort and information . In fact we have had the visit of families who have to travel 8 or 10 hours to reach us with their sick relatives.

Continue reading “Stigma and response to dementia in Guatemala’s Indigenous population”