How can assistive technology change stories of stigma surrounding aging and mental health issues?

How can assistive technology change stories of stigma surrounding aging and mental health issues?

(PCSC Keele, 2020)

“We can’t bust heads like we used to. But we have our ways. One trick is to tell stories that don’t go anywhere. Like the time I caught the ferry to Shelbyville. I needed a new heel for m’shoe. So I decided to go to Morganville, which is what they called Shelbyville in those days. So I tied an onion to my belt, which was the style at the time. Now, to take the ferry cost a nickel, and in those days, nickels had pictures of bumblebees on ’em. “Gimme five bees for a quarter,” you’d say. Now where were we… oh yeah. The important thing was that I had an onion on my belt, which was the style at the time. They didn’t have any white onions, because of the war. The only thing you could get was those big yellow ones …”

– Grandpa Simpson, The Simpsons

Aging and mental illness can sometimes carry a negative stigma that impacts how individuals are perceived and in turn treated.

The Mayo Clinic defines stigma as “when someone views you in a negative way, because you have a distinguishing characteristic, or personal trait that’s thought to be, or actually is, a disadvantage (a negative stereotype)” (Mayo Clinic, 2014). Individuals who stigmatize may deny help or partake in public hostility (Touhy et al., 2019). Touhy et al. (2019) extend this view, suggesting that, stigmatization of mental illness and aging, can impair the individual’s personal autonomy and agency, towards efforts to obtain assistance for mental illness related issues (such as anxiety).

Corrigan & Watson (2002) indicate that “individuals who belong to stigmatized groups may internalize the negativity aimed at that group” (p. 43), and can find themselves participating in self-stigmatization, where they “ believe that they are less valued because of their psychiatric disorder. Self-esteem suffers, as does confidence in one’s future” (p.36). Holstein et al. (2011) adds that feelings of resentment, low self-esteem, and despair solidify the perspective that “stigma places one at risk for shame and humiliation, as the gradual loss of control over ones environment increases ones vulnerability” (Holstein et al., 2011, p. 215). Older adults that experienced personal stigma were found to “experience self-stigma through feelings of inferiority, rejection, and isolation…”(Tzouvara et al., 2018, p. 407), which “compounded illness experiences of illness severity and poor treatment compliance” (Tzouvara et al., 2018, p. 407).

Stereotypes of the elderly as slow, dependent, poor historians, are ageist beliefs. Mental Health difficulties can add another layer to stereotypes of stigma, with beliefs such as, all older adults have dementia, and that older adults with mental illness are dependent (Touhy et al., 2019). Sources of these stereotypes and stigma can include the community and influential structures and policies (Benjenk et al., 2019). For example, Benjenk et al. (2019) found that the nursing student population carried biases against mental illness and the aged. A solution of increased exposure and integration was developed to encourage positive perceptions of these vulnerable populations (Benjenk et al., 2019). Positive interactions, vocabulary and images can be starting points to shift negative perceptions and stigma (Benjenk et al., 2019), and in today’s climate, with COVID 19 precautions, this could easily be done with the use of assistive technology (eg. zoom web camera applications) (Benjenk et al., 2019).

Stigma-based vocabulary concerns are detailed in Figure 1 below. Understanding these definitions are important to breaking down barriers of confusion. To effect change, we should understand how these definitions impact society and how to mitigate them, to enhance the lives of those stigmatized.

Solutions to stigma, to change attitudes of society and of older adults with and without mental illness can include counselling, skills building, education, communication and health promotion (Segal et al., 2018). Cognitive theory, would advocate for interventions that revamped how we perceive experiences with older adults and/or those with mental illness, to adjust how we think of older adults and mental health (Segal et al., 2018, pp. 99-91).

Since “cultural stereotypes and other collective representations, that people with mental illness acquire over time, influence their perceptions of a situation” (Corrigan, n.d., p. 47), efforts should be made to positively change perceptions of mental illness and aging to reduce methods of stigmatization.  Incomplete understanding of these illnesses, (eg. that mental illnesses such as depression and dementia are not a normal part of aging (Touhy et al., 2019)), can result in stigmatization of the elderly and of mental health related issues, and pave way to detrimental stereotypes (World Health Organization [WHO], 2017).

With cognitive theory’s focus on altering one’s perceptions, and thought patterns, one could build realistic appraisals of vulnerable populations, to avoid labelling, catastrophizing and stigmatizing older adults with/without mental illness, and participating in the process of self-stigmatization (Segal et al., 2018, pp. 90-91). The Cognitive-Behaviour model would take solutions to stigma one step further, by implying that assistive technology would need to help vulnerable populations adapt and adjust their thoughts, beliefs and behaviors to learn appropriate behaviors that did not add to the perpetuation of stigmatization (Segal et al., 2018, p. 96).

Evidence based literature has reflected cognitive-behavioral theory based solutions for self -stigma. For example, Tzouvara et al. (2018) found that insight had “a particularly meaningful role in how participants experience self-stigma” (p. 405). It has also been noted that “positive attitudes among staff towards people with mental illness could be developed and transmitted in the subculture at work places by employers/workplaces (Mårtensson et al., 2014, as cited in Tzouvara et al., 2018, p. 408). There is a wonderful article that discusses self-stigma in older adults with mental health issues. Click here to read it for yourself.

(United Way Simcoe Muskoka, 2020)

Specific examples of assistive technology that can connect to these solutions and reduce stigma related health care disparities, include email, social media campaigns, and innovative devices that assist with activities of daily living. Increased equitable access to the findings of assistive technologies will also allow for exposure to the biases, to enhance understanding about the impact that these biases, and stigmatization has on older adults with or without mental illnesses (Corrigan, n.d.)

The Stigma of Dependence

“Many persons with psychotic disorders are unaware of the nature of their mental illness or its impact on the breadth of life functioning domains” (Corrigan & Watson, 2002, p. 45). I believe that by supporting the innovation and use of devices that assist with activities of daily living, we can reverse assumptions and stigma that all older adults with mental illness are dependent.

(Burleson et al., 2018)

The DRESS prototype is like a giant dresser with an iPad on top that allows you to take out an outfit, one piece at a time. It prompts the person if the clothing is put on incorrectly (eg. if pants are on backwards or shirt buttons are misaligned, or the shirt is inside out) using smart tags that are put on/into the article of clothing (Burleson et al., 2018). The iPad shows the person with dementia which piece of clothing they are putting on, and visually prompts the individual of the next article of clothing and if the older adult has put on the article of clothing correctly (Burleson et al., 2018). The invention also connects to a phone app, so that a caregiver or the older adults themselves can monitor their progress (Burleson et al., 2018). The dresser has to be preloaded (so that matching outfits come out), and the piece of equipment doesn’t look cheap, but the DRESS prototype can make it possible for the individual to perform an activity of daily living independently that they may have needed a care provider to help them with in the past, therefore reducing stigma about how the demented person is dependent on someone to do fundamental daily tasks (Burleson et al., 2018). It is a prototype, so there need to be a few tweaks, but if this can work with one activity of daily living, perhaps activities such as brushing your teeth or washing your face can be prompted by a similar device (Burleson et al., 2018). With that said, we must also consider a caveat (to innovations like this prototype, that aim to reduce stigmas, and work to increase autonomy and independence), that, “the focus on autonomy and independence… is an unintentional form of ageism – it does not intend discrimination on older adults but has that net effect” (Holstein et al., 2011, p.145).

EDUCATION TO DECREASE STIGMA

(Image of illustration old senior education, elderly person use computer, 2019)

The WHO Global Network for Age-friendly Cities and Communities (GNAFCC), “is developing an interactive database of age friendly practices – and hosting online conferences to provide opportunities for networking…and peer to peer learning” (WHO, 2018). Influential podcasts are also encouraging peer-to peer learning and breaking down the barriers of stigma through education (New Jersey Geriatric Education Center, 2009-2010). The podcast “GeriPod” discusses how stereotypes of the elderly must be re-examined (New Jersey Geriatric Education Center [NJGEC], 2009-2010). Truths such as the facts that the oldest-old and institutionalized populations have the highest rates of depression within the older adult demographic, and that culture and gender differences are sources of the significant underreporting of depression (NJGEC, 2009-2010). Depression’s connection to risk of suicide is also examined in a very straightforward concise manner. Long term care homes and public spaces could potentially play these podcasts daily, and education could be expanded, to decrease social stigma, with exposure and societal understanding (NJGEC, 2009-2010).

Into the fold is another podcast that also draws together connections between mental health and aging disparities, and age-related bias (Hogg Foundation for Mental Health, 2019). Carly Bassett; a social worker of Family Eldercare, comments on stigma with regard to the older adult’s loss of a spouse, and explores how recognizing self-sufficiency and survivorship as strengths, can encourage understanding, and prevent decreases of mental wellness (Hogg Foundation for Mental Health, 2019). Interventions to reduce stigma, and assumptions that growing dependence is part of normal aging, are discussed in this podcast (Hogg Foundation for Mental Health, 2019). There is relatable discussion of depression and anxiety, and how attitudes towards these frequently disregarded illnesses can begin to change with social support (Hogg Foundation for Mental Health, 2019). You can find the link to the podcast below. Have a box of Kleenex ready.

Educational interventions can be paired with social media and YouTube influences to re-educate older adults and the rest of society in the realities of aging and mental health (Segal et al., 2018). By clearing up misconceptions, insight allows us to develop a deeper understanding of these populations (Segal et al., 2018).

Skill building through technology (self-learning with tablets, phone apps and the internet) could offer healthcare providers and aging individuals with and without mental illness education to reduce stigma in their environments (Alzheimer Society of Canada, 2020). The Alzheimer Society of Canada website is a perfect example (Alzheimer Society of Canada, 2020). This medium combines technology and education learnings together, and reduces stigma about Alzheimer’s disease, through easy to understand articles, simple definitions and examples of stigma in the real world (Alzheimer Society of Canada, 2020). The site helps individuals (regardless of health literacy level) to take part in the conversation about Alzheimer’s and contributes to a social movement against stigma by spreading awareness (Alzheimer Society of Canada, 2020).

Digital tools found through social media and blogs with hashtags such as #OAMHAD (Older Adults Mental Health Awareness Day) led me recently to a video that introduces mental illness in an impactful way (Evidence Exchange Network, 2020a). It guides viewers to a workshop intervention that can deepen engagement and promote collaboration, and potentially put a new spin on how many people see aging issues and issues of mental illness (Evidence Exchange Network, 2020a). I encourage you to watch the video. Resources like this are at our fingertips with assistive devices like the internet. They help us to gain knowledge about the compounded effects of ageism and mental health stigma and introduce a wider range of community members to inventions that can improve many individuals and caregivers quality of life (Evidence Exchange Network, 2020a).

(Evidence Exchange Network, 2020a)
(Naumov, 2020b)

DEFEATING STIGMA WITH THE MEDIA

Movies, television, and books, are quintessential assistive technologies that can change how we see mental illness and aging images of stigma within the health care systems, and within private settings (Calhoun & Gold, 2020). The media educates us, and has the capability to spread awareness and challenge preconceptions about mental health issues (Calhoun & Gold, 2020). A social media page can also challenge traditional stigma reduction education and deliver it in a new way that reaches influential demographics. Awareness campaigns in digital and social media using public figures can build new foundations of knowledge, that can reduce stigma effects towards vulnerable populations, and “open discussions about mental health, continue to increase awareness and expand the image of what it means to have a mental illness. Fans at home learn that it is not “taboo” to have a diagnosis or seek treatment for it and talking about mental health becomes normalized” (Calhoun & Gold, 2020, p.238). These assistive technologies spread knowledge through online and digital connections, change perceptions of isolation, and can mitigate isolation, by providing a route to new relationships and communities (Holstein et al., 2011).

Public figures that I believe have influenced my attitudes towards aging and mental health are actresses like Jane Fonda and Betty White. They made me see older adulthood and the challenges that come along with it, molehills as opposed to mountains. I also think of Robin Williams, when I think of mental health and how depression can affect older adults. In my mind, learning about the story of Mr. Williams, for example, changed how I saw depression, and helped me to feel more empathy towards those suffering with this damaging disease. His influence on me changed how I saw actions of stigma and people’s statements towards those who suffer with depression.  

This leads me to the question, what social media personalities, movie, television show or literary characters or real-life individuals have created your images of mental illness and aging issues? Have they changed the way you think about stigma? Have they changed how you act towards the elderly or those with mental illness? Please leave me a comment below and let me know about the public figures that have influenced you!

Below is an amazing video of one of my favorite childhood authors, Robert Munch talking about how he suffers with Bipolar (Mental Health Commission, 2020, October 18). I feel like when important figures like that talk about their illness it can normalize mental illness and encourage people to seek out ways to obtain optimal mental health. If you have ever read I’ll love you forever or the Paper Bag Princess, this is something you have to watch.

(Mental Health Commission, 2020, October 18)

INNOVATIONS WITHIN THE LITERATURE

Literature expands on our ability to continue these important conversations. Insight can be achieved from review of expert opinion, and of our own attitudes and stereotypes. Expert opinions found that assistive technology, assisted older adults with knowledge development with regard to new hobbies and interests like creative writing and music, which was suggested to improve perceptions of mental wellness (Damodaran, 2014). It was also noted through qualitative analysis that older adult chronic illness sufferers were able to regain independence, and emotional wellness with regular use of the internet. (Damodaran, 2014).

Damodaran (2014) supported the idea that internet use allowed for participation in financial support programs and community programs. Improved community connections and understandings were dialogued by older adult participants in this study (many suffering with mental illness challenges), and economic stability and quality of life improvements were associated increased use of computer and internet assistive devices. (Damodaran, 2014).

Segal et al. (2018) highlighted a similar peer communication and self-management intervention, as means to prevent psychological distress and minimize functional challenges, through the connection of the individual with mental healthcare resources (p. 268). The mention of the FOCUS smart phone application, for those suffering with schizophrenia (within the textbook) made me curious to learn more. The Center of Technology and Behavioral Health website is where you can head for more information about the app (The Center of Technology and Behavioral Health, 2020). This website also connects you with real life initiatives such as a an mHealth mobile cell phone resource that is also specific to individuals with schizophrenia, post illness exacerbation (Ben-Zeev et al., 2016; The Center of Technology and Behavioral Health, 2020).

Another self-management innovation of technology that is making waves within the literature is a smart microchip for humans (Jokich, 2020). News coverage has been detailing how this assistive chip can identify brain waves and treat mental disorders from the inside (Jokich, 2020). I feel like if this chip were available to those who were aging, with perhaps a severe form of depression, effects could be like that of electroconvulsive therapy (ECT). This could potentially act like a portable ECT machine of sorts, and combat stigma by identifying illnesses like depression as a issue with neurotransmitter levels and brain waves irregularities, which could minimize views of individuals with depression as fake, or lazy. This technology could, like ECT, encourage active community participation, and media coverage of this new assistive technology could alter perceptions about individuals with mental illnesses ability to self regulate and self manage their illness (Jokich, 2020).

(Jokich, 2020)

Literature centering around digital and social assistive technologies used within music therapies have also been center stage within literary review of current assistive technology being used by older adults with or without mental illness issues. Clark et al. (2018) identified that dementia’s “symptoms such as memory loss and aphasia … lead to reduced confidence in social situations, which when coupled with social stigmas, can result in withdrawal and isolation from previously meaningful activities” (p. 1333).

(Naumov, 2020a)

Clark et al. (2018) found that community singing groups were able to “support experiences of wellbeing, social inclusiveness and connectedness”, with music related technologies (tapes, recording devices etc…) that positive altered perceptions of dementia. Improved interpersonal and intrapersonal relationships, and recognition and acceptance of personal coping capabilities were also discovered as positive outcomes of the technology driven club (Clark et al., 2018). A similar study made associations between music therapy and PTSD (Landis-Shack et al., 2017). Landis-Shack et al. (2017) established that “music therapy can be a useful therapeutic tool to reduce symptoms …and strengthen functioning by fostering resilience and engaging individuals who may struggle with any perceived stigma associated with seeking professional help”(p.1).

However, even with effective assistive technology “the burden of stigma may exceed the burden of the disease in its impact on social, emotional, and work functioning” (p. 1) of marginalized individuals (Rao et al., 2019). Older adults with and without mental illnesses such as anxiety, depression, schizophrenia and dementia experience stigma, and interventions to reduce the burdens of stigma, are global issues of concern (Rao et al., 2019).

Conclusion

To improve the lives of those with mental illness and those limited by issues of aging, multi level interventions can partner with assistive technology to improve quality of life and to decrease stigma (Rao et al., 2019). We can implement protections against stigmas with evidence based solutions (like the ones I have mentioned earlier in the blog), and marry them to the many assistive technology innovations that are being developed, to decrease the stigma surrounding older adults and mental health. The best part is that many of these assistive technologies are available to the public and free to use, but support is needed, to combine these innovations with our aging population, so that care providers can provide higher quality care (Segal et al., 2018).

As I have mentioned, mental health stigma awareness is key to intervention success. In addition, we have to spread that word, about how stigma effects the lives of the aged and of those with mental illness, and about innovative solutions, to spark change.

We will connect stigma to its role within power and relationships, next week, in module three of this six part blog mini series. We will further expand our knowledge about stigma and aging issues in module 4, as we link it to aging in place, so stay tuned.

I hope that a study that I have mentioned has interested you to explore the topic of stigma further. What other inventions have you come across? Please leave a comment below and spread the awareness with me.

Reference

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