Ageism in dementia
September marks World Alzheimer’s Month, a global campaign raising awareness and challenging stigma that surrounds dementia. As outlined in the global action plan on the public health response to dementia 2017-2025 set out by the World Health Organization, tackling stigma is one of the broad priorities within dementia research. There are several potential determinants of dementia-related stigma (Aboseif & Woo, 2020), one of which includes ageism (Evans, 2018).
Stigma relates to negative labels that are given to identify individuals as different (Tyler & Slater, 2018). People with dementia can often experience ‘double stigma’, with views around dementia itself layered on top of ageist stereotypes.
Whilst age is the strongest risk factor for dementia, some negative attitudes towards dementia can be perpetuated by the false belief that dementia is caused by normal ageing. Symptoms of dementia develop when the brain is damaged by disease. As a person gets older, the risk of developing dementia also increases. However, this is because diseases such as Alzheimer’s disease may take several years to cause symptoms of dementia. The longer an individual lives, the more time there is for dementia to develop. Older individuals are also more likely to have health conditions such as high blood pressure which is a risk factor for developing dementia (Alzheimer’s Society, 2021).
Ageist views of older people can create several challenges for services for older persons and those with dementia (World Alzheimer Report, 2019) with the Covid-19 pandemic having exacerbated and further highlighting the extent of ageism (Roelen et al., 2020), particularly in older people in long-term and aged care services as well as their portrayal in the media (Curryer & Cook, 2021).
Therefore, it is important to consider the consequences of ageist attitudes in the context of dementia with continued and collective effort vital in addressing dementia stigma and ageist attitudes in society, to not only improve individual’s confidence in seeking timely diagnosis and treatment, but to also improve quality of life and provisions for individuals with dementia.
My short perspective considers ageism in relation to dementia, why young people are important in tackling ageism and stigma, and the role of media and dementia knowledge. I outline the direction of my research as an incoming PhD student, hoping to tackle stigma by identifying determinants of dementia attitudes in young people.
Young people's views
Ageism can be defined as any form of prejudice or discrimination that is based on chronological age (Rahman & Hyden, 2020). Research going back 20 years identified that whilst young and older people do both hold ageist views, those under the age of 25 years held more negative feelings towards older people compared to those older than 25 years old (Soderhamn et al., 2001). Fast forward to today, studies show that whilst there is a mixture of both positive and negative feelings towards older individuals held by young people, ageist beliefs are still held in younger students more so than older students, including in cohorts of student nurses and health professionals (McKenzie & Brown, 2014). It is therefore important to consider challenging negative perceptions held by young people.
Young people have an important role in how society will perceive dementia and ageing in the coming years – setting precedent for when they are health professionals and policy makers in the years to come. By addressing ageist attitudes and by understanding what other potential factors contribute to dementia stigma, we can equip young people to be dementia aware, sparking interest in healthcare careers.
Whilst ageism is likely to have a role in dementia stigma, it is important to reiterate that dementia stigma and ageism are more likely separate entities, although the two can often become blurred due to ageist stereotypes that are held towards individuals with dementia (World Alzheimer report, 2019). It is important to take into consideration that there are several potential factors that may contribute to dementia stigma with gender, ethnicity, awareness, level of contact with an individual with dementia and media as well as other factors all having some part to play in this (Herrmann et al., 2018).
Media and dementia knowledge
The role of media and dementia knowledge are particularly important aspects to consider when we look at dementia and ageism in young people. Media portrayals of dementia can be ageist and can reinforce stereotypes. This includes attributing features that society hold towards older people and those with dementia such as frailty (Ye et al., 2020). However, dementia can affect individuals between the age of 30-65 (known as young-onset dementia) and awareness and education of this could challenge ageist views of dementia (World Health Organization, 2021; Werner et al., 2020).
Whilst there has been greater effort in improving media portrayals of dementia, there are still inaccurate, or misleading depictions of dementia in mainstream media and the internet which can further lead to stereotyping (Mukadam & Livingston, 2012). Research suggests that even brief exposure to negative aging stereotypes increases the amount of dementia worry (Molden & Maxfield, 2017). Such negative stereotypes are often depicted in film and media (Evans, 2018) with news media often using devastating metaphors of dementia which further induce fear (Zeilig, 2014). As such, the media may shape perceptions of dementia, particularly if there is a lack of knowledge and contact with someone with dementia (Cheston et al. 2019).
This is particularly concerning when young people’s main interaction with dementia comes from media. In student samples in particular, studies looking at attitudes towards dementia among university students in Malaysia found that the most frequent level of contact students had with dementia were through TV and movies (93%) with 89% through internet searching (Grifths et al. 2020). Similarly, in western culture, the trend is similar with a cohort of adolescents in England displaying they had mostly been exposed to dementia through TV and films (77.3%) (Farina et al. 2020) and display low levels of knowledge of dementia with one study conducted in England on adolescents aged 15-18 revealing that students answered less than half of the questions on dementia knowledge correctly (Isaac et al. 2017).
However, it is likely this lack of knowledge is due to an absence of dementia education within the curriculum with research indicating that there is very little taught in secondary schools on the topic with only 9 schools out of a sample of 60 schools having dementia education within their curriculum (Farina et al. 2020). It is therefore critical that research and policy challenge the portrayal of dementia in the media such as negative, ageist portrayals and the terminology used surrounding dementia to address stigma, further imbed dementia awareness through campaign and education in schools to continue making impact past the 2017-2025 global dementia impact policy date when young people go on to be carers, health professionals and policy makers themselves.
Stigmatising attitudes can create barriers in seeking a timely diagnosis due to individuals with dementia feeling worried with what the diagnosis would mean and often due to fear of rejection from society and family (Molden & Maxfield, 2017). This also includes ageist stereotypes of dementia meaning that those with symptoms of young-onset dementia may not be concerned with seeking a diagnosis due to the belief that they are too young to have dementia. The Alzheimer’s Disease International will have released their World Alzheimer Report (2021) on the ‘journey through the diagnosis of dementia’ on World Alzheimer’s day (21st September) with the message that they are estimating 75% of dementia cases globally go undiagnosed.
Future directions and considerations for the future
Educational interventions for young people can increase dementia knowledge which may be able to reduce negative ageist behaviors and address stigmatizing attitudes that form from many different factors (Herrmann et al. 2018). It is important that young people recognise that there are many different types of dementia and not just Alzheimer’s disease, are aware of the risk factors for dementia and that it is not an inevitable consequence of normal ageing.
However, to create effective dementia education, it is important to understand what the determinants of dementia attitudes are in young people. Whilst we are aware of the attitudes held by young people from a limited number of studies, it is less clear how these attitudes have formed in the first place and how these change overtime. By addressing these questions, we can seek to create effective interventions that take these factors into consideration in tackling dementia stigma in the future. As an incoming PhD student at Brighton and Sussex Medical School, funded by the Alzheimer’s Society, these are questions I am fundamentally aiming to address.
- Esra Hassan, BSc (Hons), MSc, MBPsS, PhD student at Brighton and Sussex Medical School, [email protected]
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