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.

Despite that most international human rights treaties apply in principle to people of all ages, specific reference to older persons is rare — including in the UN Convention on the Rights of Persons with Disabilities (CRPD). Ageism and the discrimination against individuals or groups on the basis of their age is still tolerated and even entrenched in national legislations, with the absence of international norms to protect the rights of older persons only aggravating the system.”

Read an excerpt from her essay ‘Stigma, dementia and age’, featured in World Alzheimer Report 2019, below:


Dementia is not an inevitable result of ageing. However, as the risk of getting dementia greatly increases with age, people living with dementia are likely to experience a “double stigma”. Because age is the major risk factor in developing dementia, those with the condition often experience the effects of dementia stigma in addition to the broader ageism older people encounter and the distinction between the two types of stigma often becomes blurred.

Silvia at a session advocating for the rights of persons with disabilities at the UN in Geneva.

We all age. That is a fact of life. More and more women and men live very long lives. However, everyone seems to want to live longer but only in good health and without getting older. Growing old does not mean that we cannot do the things we like doing. In fact, we can. There is evidence to support that many people over 60 are able to function in the same way as many people in their 20s or 30s. Therefore, the assumption that old age equals natural and inevitable decline is not totally accurate and has hidden preventable inequalities in the quality of life of older people.

Despite the fact that older persons are able to function in multiple ways, we seem to require permission from society, our families or close ones in order to do the things we value, or indeed do them in hiding because we are either largely invisible, or would be looked at as a curious specimen, considered “demented” and too often be stripped of our rights. Prejudice and assumptions rule our lives. We are forced to retire, or to give up many of our routine activities simply because either we reached a certain age or because we were diagnosed with an “age-related” disease, regardless of what a person can or wants to do. No other disability acquired at younger “working age” would be treated in such a discriminatory fashion.

Prejudice and assumptions rule our lives. We are forced to retire, or to give up many of our routine activities simply because either we reached a certain age or because we were diagnosed with an  age-related  disease, regardless of what a person can or want to do. No other disability acquired at younger working age would be treated in such a discriminatory fashion.”
Silvia Perel-Levin


When a person has dementia, the condition takes over as the main descriptor of who they are. The stigma cancels the individual’s personality or personal history. Care systems focus on the dementia rather than the needs of the individual. Inadequate medication management, and misinterpretation of symptoms mean that many people are receiving poorer services. This is in addition to the broader ageism in the healthcare system, which can also lead to reduced access to services. Old age is perceived as a synonym of frailty and cognitive decline and we are all put in the same bag, as if we were all the same.

Read the full case study here in the World Alzheimer Report 2019 on Chapter 3.20, page 90.


As we approach the 11th session of The Open-Ended Working Group on Ageing for the purpose of strengthening the protection of the human rights of older persons, Silvia claims that an international convention on the rights of older persons will provide a definitive, universal position that age discrimination is morally and legally unacceptable.

Join the Global Alliance for the rights of older people (GAROP)

Register for the joint global webinar, hosted by ADI and Dementia Alliance International, taking place on 27 February 2020 and featuring key panelists such as Silvia Perel-Levin. You can learn more and register here.