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Giverny Witheridge – The dialogue of dementia

Giverny Witheridge

Dedicated to my Nonna and Nonno and Nan and Pop – who are living with dementia every day.

One of the largest health issues facing older people, their families, service providers and governments in the 21st century is the increasing prevalence of dementia.

The term dementia refers to a syndrome caused by disease of the brain in which a progressive failure of most cerebral functions affects memory, thinking, behaviour and the ability to perform everyday activities (Kirkman 2006, p74). Current projections suggest that nearly 900,000 people in Australia will be living with dementia by 2050 given trends towards an ageing population (Alzheimer’s Australia 2014). Creating a dementia-friendly nation is, therefore, a national health priority that involves developing a safe, welcoming and inclusive place where people are aware of and understand dementia and support and empower those living with dementia to enjoy a high quality life (Alzheimer’s Australia 2014).

The field of communication and media studies can help to achieve this objective, with the discursive approaches adopted in the mass media exerting a powerful influence on the way people with dementia are perceived, understood and treated. The awareness-raising capacities of the mass media can also help to advance government policy efforts aimed at improving the quality of life of people with dementia and their carers. Capturing and understanding the diverse experiences of people living with dementia and their carers through social media, film and television and social marketing campaigns can also help to mitigate the stigma and negative connotations associated with dementia.

The media, including newspapers, television, radio, magazines and Internet, is a powerful tool to help spread awareness and influence perceptions of dementia (Doyle et al 2012, p96). The media’s role as disseminators of information on dementia is particularly important due to the potential for positive language and imagery in communications to strengthen community awareness and mitigate the stigma that surrounds dementia (Doyle et al 2012, p96). However, in reality, the media tend to systematically reinforce a negative framing of dementia, perpetuating stereotypes and undermining an informed understanding of the condition (Van Gorp, Vercruysse & Van den Bulck 2012, p388).

The media’s persistence of negative stereotypes associated with dementia is evident in the article written by Christopher Jay and published in The Australian Financial Review, June 10 2015, titled ‘Dementia troublemakers problem in retirement homes’. In the article, Jay argues that a proportion of retirees with dementia are turning out to be “feral geriatrics” who are “mad, bad and dangerous to know” and a “menace” to themselves, retirement home staff and other patients. According to Megan-Jane Johnstone, a Professor of Nursing at Deakin University, this negative representation of dementia risks causing unnecessary public anxiety while also reinforcing the stigmatisation, shame and secrecy associated with dementia (O’Keeffe 2015). Dr Tom Morton, Director of the Australian Centre for Independent Journalism at the University of Technology, Sydney, argues against this view, declaring the article to be a ‘public service’ that alerts the public to the reality of dementia, which can often involve people developing aggressive, angry and abusive behaviour (O’Keeffe 2015).

This view is corroborated by a study conducted by Van Gorp, Vercruysse and Van den Bulck (2012, p388) in which a campaign advertisement about dementia that revealed a person faced with death and gradual degeneration was judged to be most attention-grabbing, easier to understand and more credible than the alternative campaign with the idea that someone with dementia could still enjoy playing cards. This is the result of the death and degeneration framing relating more closely to the prevailing negative representations of dementia in society (Van Gorp, Vercruysse & Van den Bulck 2012, p391). Despite the importance of informing and educating the public about the reality of dementia, the sombre and sinister tone of this frame risks perpetuating the negative connotations and stigma associated with dementia over the long term (Van Gorp, Vercruysse & Van den Bulck 2012, p391). This presents a barrier to cultivating an accepting and inclusive dementia-friendly nation in which people living with dementia are perceived to possess their essential humanity.

Achieving the objective of a dementia-friendly nation must begin with interrogating and changing the language and discourse inherent in conventional journalistic practices from the dominant negative image of death, violence and degeneration towards a view that is life-affirming and based on possibility. Rather than focusing on scientific information that relies heavily on the voice of experts including scientists, doctors and drug company representatives, media accounts need to incorporate the voice of people living with dementia and their carers. This includes interviewing people in the early stages of dementia who retain many abilities and lead a normal social life (Alzheimer’s Disease International 2012). A greater understanding and awareness of these personal perspectives will help to reduce negative connotations, lead to societal empathy, reduce fear and, therefore, reduce stigma (Alzheimer’s Disease International 2012).

Due to the harm and suffering evoked by the current powerful fatalistic and destructive discourses, the media also needs to develop an alternative rhetoric to describe the experience of dementia. This may involve developing a rhetoric of ‘living well’ with dementia, in which the media focuses on how people with dementia are achieving well-being and quality of life (Department of Health 2009, cited in Peel 2014, p887). For example, in order to mitigate the stigma and challenge the stereotypes that surround dementia, the media could report on the ways people with dementia are participating in everyday activities. This not only highlights the retained social competencies and identities of people with dementia, thereby challenging prevailing stereotypes, but also helps restore a sense of autonomy and identity for people with dementia (Cantley & Bowes 2004, p260).

The use of respectful, empowering language and positive imagery can also help to promote the dignity and self-worth of people living with dementia. The language and visual imagery surrounding dementia has serious implications for how people see and engage with persons diagnosed with dementia (Mitchell, Dupuis & Kontos 2013, p2). Rather than using derogatory, stigmatising and discriminatory language in media reports, such as referring to people with dementia as ‘sufferers’ and ‘victims’, the use of positive, inclusive language that focuses on the abilities of people with dementia is important in empowering people with dementia to have aspirations and feel confident (Swaffer 2015).

It is, therefore, evident that introducing a media discourse which provides a more holistic view of the diverse experience of dementia, coupled with a rhetoric that places greater emphasis on the individuality of the person and their retained abilities and capacities, is vital to building a more socially inclusive dementia-friendly nation.

With its powerful influential networks, the media also has the potential to steer the public health agenda and make dementia a national health and social care priority. Key issues discussed in the media including early diagnosis, making hospitals safer places for people with dementia, dementia risk reduction and investment in dementia research and treatment serve to fuel meaningful public debate, putting pressure on governments to tackle dementia within the public health framework and achieve policy changes (Wortmann 2013). For example, as a result of public pressure for funding for dementia research and treatment, the Australian Government’s 2014 Budget promised an additional $200 million over five years to boost Australia’s dementia research capacity (Corderoy 2014).

Despite the growing political potency of dementia as an issue, the needs of people living with dementia and their carers are often overlooked, with financial and regulatory aspects remaining a policy focus (Wortmann 2013). As a result, it is the responsibility of the media to ensure that the quality of services and supports available to people with dementia and their carers features strongly in public discussion in order to establish care reform as a priority on the political agenda. In this way, the political force of the media serves as a powerful tool to advance policymaking, pressuring the government to commit to developing a range of dementia-friendly initiatives that enhance the quality of life of people living with dementia and their carers.

Social media has opened up a vibrant channel of communication to raise greater awareness about dementia. Social media platforms serve as invaluable tools to inform and educate the public about the needs and challenges facing people living with dementia (Alzheimer’s Australia 2014). For example, the Facebook app, FaceDementia, allows users to experience the effects of dementia on a personal level. The app pretends to hijack a person’s Facebook page, deleting or scrambling personal profile information, daily updates and photographs to symbolise the short-term memory loss, disorientation and confusion that are common symptoms of dementia (Beauchamp 2014). Such an interactive user experience may serve as an effective educational tool to encourage young people to become dementia aware. This is vital to the development of a dementia-friendly nation, with young people holding the key to ensuring future generations who are affected by dementia can enjoy a high quality of life (Alzheimer’s Society 2014, p5).

The online world can also help to reduce stigma and increase people’s understanding of dementia. Blogs are a powerful medium to change attitudes and build knowledge, providing a unique insight into the personal stories and experiences of people living with dementia (Alzheimer’s Australia 2014). Encouraging people with dementia and their carers to write their own blogs can help to challenge the misconceptions associated with dementia while also providing the broader community an opportunity to interact with those affected by dementia. These highly informative and personalised perspectives on dementia can also be valuable to the care sector, helping staff to summon a deeper understanding of people’s experiences in a way that translates into improved care and support.

At the same time, the process of blogging can also help to reduce the loneliness and sense of isolation that many people with dementia experience, with the online world providing a lively and supportive community of like-minded people (Alzheimer’s Australia 2014). Facebook support groups, chat rooms and online forums create a network of sharing information that fosters a sense of belonging and social inclusion for people with dementia (Alzheimer’s Australia 2014). Forum members share stories, give advice, offer encouragement and commiserate about their symptoms in ways that generate solidarity (Rodriquez 2013, p1215). In this way, the possibilities of connection and interaction afforded by the Internet can help improve people’s understanding of dementia, change community attitudes and offer support and inclusivity for people with dementia.

On-screen depictions of dementia in film and television also have the potential to positively affect public awareness and opinions of dementia. A new wave of mainstream film and television shows including Still Alice, The Iron Lady and Robot and Frank are offering realistic and thoughtful depictions of the dementia experience in ways that provide a more nuanced understanding of the condition and individuals with dementia (Belardi 2015). Popular commercial films have the potential to reach and influence the attitudes of mass audiences (Belardi 2015). For example, Hollywood blockbuster Still Alice starring Julian Moore, Alec Baldwin and Kristen Stewart features a linguistics professor diagnosed with early onset dementia (Belardi 2015). Moore’s portrayal of the personal journey of dementia and the struggle with confusion, memory loss and fatigue elicits empathy and compassion within the viewer, providing a startling insight into the complex realities and losses that accompany the diagnosis of dementia for individual persons and those closest to them (Belardi 2015).

Through its long form narrative, TV can achieve a more considered and detailed examination of dementia that can be explored over many episodes and even seasons (Belardi 2015). For example, the popular Australian TV series Packed to the Rafters, which ended in 2013, covered substantive issues such as the symptoms of dementia, diagnostic testing as well as treatment options and admission to residential aged care over several seasons (Belardi 2015). The show’s impressive audience ratings of 1.5 million people highlight the potential impact of television to heighten community understanding of dementia and raise public awareness of the need for services, supports and associations (Belardi 2015). Increasingly, a number of documentaries and home videos are also being produced that provide valuable opportunities for learning and understanding people’s experiences of dementia. For example, a video telling the story of a husband’s love and care for his wife with dementia has received over two million hits on YouTube (From the Oscars to YouTube 2013).

It is, therefore, evident that film and television are powerful mediums to engage people with the subject of dementia and ensure that people living with a dementia become a visible part of society.

Social marketing campaigns are another popular awareness-raising medium to increase knowledge and reduce stigma and misconceptions on the issue of dementia. Alzheimer’s Australia’s national television campaign, launched in September 2014, showed the same briefcase, left behind by its owner, in a variety of locations in order to educate Australians about the difference between forgetfulness and dementia (‘Alzheimer’s Australia teams up’ 2014). This encouraged people to take seriously symptoms that may be indicators of the onset of dementia, rather than to dismiss them as ‘normal’ deterioration (‘Alzheimer’s Australia teams up’ 2014). Despite its effectiveness for increasing help-seeking behaviour, such fear-oriented advertisements risk creating undue alarm and exacerbating the ‘worried well’ (Ross & Scott 1993, cited in Devlin, MacAskill & Stead 2007, p48).

A vital goal for future communication campaigns should be to dispel fear and create more positive feelings around dementia and people with the condition. Effective social marketing campaigns can reduce the stigma and fear surrounding dementia by portraying realistic and positive images of life with dementia as well as information and advice about treatment and support available (Devlin, MacAskill & Stead 2007, p56). This involves emphasising that it is still possible to live a relatively normal and active life with dementia, and to assert the continued ‘personhood’ of a person with dementia (Devlin, MacAskill & Stead 2007, p56). This would reduce the fear currently associated with dementia among the general public, encouraging people to consider the condition with less avoidance (Devlin, MacAskill & Stead 2007, p56). At the same time, it also has the potential to empower those with dementia and their carers rather than alienate them (Devlin, MacAskill & Stead 2007, p56). In this way, social marketing campaigns can help to correct misconceptions held by the general public regarding life with dementia, thereby helping to reduce the isolation, stigma and discrimination experienced by people with dementia.

A dementia-friendly nation is a place where people with dementia are respected, valued and supported to maintain a high quality of life. In a dementia-friendly nation, people are aware of and understand dementia, and people with dementia feel included and involved in community life.

Creating a dementia-friendly nation is, however, a pressing social challenge given the stigmatisation, discrimination and isolation commonly reported by people with dementia. The field of communication and media studies offers vast potential to help combat this stigma and empower people with dementia to remain engaged in a rewarding and fulfilling life.

Transforming the dominant media discourse of death and degeneration towards a discourse that is life-affirming and based on a positive, inclusive rhetoric of ‘living well’ with dementia can help reduce stigma and increase feelings of dignity and self-worth of people living with dementia. Through improving public awareness of dementia, the media can also increase public pressure for services, supports and associations, establishing care reform as a national health priority. Social media platforms offer new opportunities to understand personal experiences of dementia, while the emergence of blogging and online communities can help to reduce the isolation and loneliness experienced by people with dementia and their carers. Realistic and thoughtful depictions of dementia in film and television serve to normalise dementia and encourage openness in dialogue and social settings about the reality and challenges of the condition.

These initiatives can be supported through well-developed and executed social marketing campaigns that prompt a societal shift towards acceptance and inclusion of people affected by dementia. In this way, the field of communication and media studies is an integral, if not vital, part of Australia’s vision to create a nation that is inclusive, supportive and accepting of people with dementia – a nation that is not only dementia-friendly, but is dementia-ready.

 

References

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