Perceptions of stigma among people affected by early- and late-onset Alzheimer’s disease

Ashworth, Rosalie

doi:10.1177/1359105317720818

Cited by 25 publications

(35 citation statements)

References 82 publications

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“…The ability to go away and 'escape' was often framed as being the 'lucky ones', a theme which was seen across findings on future outlook as well as when discussing stigma around Alzheimer's disease (see Ashworth, 2017). For example, Eva and James (PE1) discuss the benefits of holidays:…”

Section: 'Escapism'mentioning

confidence: 99%

Looking ahead to a future with Alzheimer's disease: coping with the unknown

Ashworth

2019

Ageing and Society

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AbstractThe conceptualisation of Alzheimer's disease as an illness with ‘no future’ exposes people with the condition to significant fear and stress. Therefore, exploring how people look ahead to the future in the face of Alzheimer's disease is of foremost importance. Semi-structured interviews (N = 14) explored the future outlook of people with early (N = 5) and late-onset (N = 7) Alzheimer's disease and those who support them (N = 14). Thematic analysis identified how participants managed their changing futures through focusing on positive information, and taking ‘one day at a time’. Younger and older people shared similar future outlook and subsequent coping strategies, as predicted by Carstensen's Socioemotional Selectivity Theory. Both people with Alzheimer's disease and those who support them avoided looking far ahead as a way of managing the uncertain future, and had little awareness of future planning in the context of current policies. Such avoidance suggests that policy which encourages future planning should consider its utility and explore ways of helping people to plan, whilst focusing on daily living.

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Section: 'Escapism'mentioning

confidence: 99%

Looking ahead to a future with Alzheimer's disease: coping with the unknown

Ashworth

2019

Ageing and Society

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“…For instance, those living with dementia have reported experiencing various degrees of shame, including avoidance, negative self-perceptions, and uncertainty [2]. Interviews with individuals affected by dementia have shown that these individuals often feel perceived as “stupid” [3]. These perceptions of individuals affected by dementia have been perpetuated by the increased use of the internet as a source of information and social commentary.…”

Section: Introductionmentioning

confidence: 99%

Analyzing Twitter as a Platform for Alzheimer-Related Dementia Awareness: Thematic Analyses of Tweets

Cheng¹,

Liu²,

Woo³

2018

JMIR Aging

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Background Dementia is a prevalent disorder among adults and often subjects an individual and his or her family. Social media websites may serve as a platform to raise awareness for dementia and allow researchers to explore health-related data. Objective The objective of this study was to utilize Twitter, a social media website, to examine the content and location of tweets containing the keyword “dementia” to better understand the reasons why individuals discuss dementia. We adopted an approach that analyzed user location, user category, and tweet content subcategories to classify large publicly available datasets. Methods A total of 398 tweets were collected using the Twitter search application programming interface with the keyword “dementia,” circulated between January and February 2018. Twitter users were categorized into 4 categories: general public, health care field, advocacy organization, and public broadcasting. Tweets posted by “general public” users were further subcategorized into 5 categories: mental health advocate, affected persons, stigmatization, marketing, and other. Placement into the categories was done through thematic analysis. Results A total of 398 tweets were written by 359 different screen names from 28 different countries. The largest number of Twitter users were from the United States and the United Kingdom. Within the United States, the largest number of users were from California and Texas. The majority (281/398, 70.6%) of Twitter users were categorized into the “general public” category. Content analysis of tweets from the “general public” category revealed stigmatization (113/281, 40.2%) and mental health advocacy (102/281, 36.3%) as the most common themes. Among tweets from California and Texas, California had more stigmatization tweets, while Texas had more mental health advocacy tweets. Conclusions Themes from the content of tweets highlight the mixture of the political climate and the supportive network present on Twitter. The ability to use Twitter to combat stigma and raise awareness of mental health indicates the benefits that can potentially be facilitated via the platform, but negative stigmatizing tweets may interfere with the effectiveness of this social support.

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“…In this and other studies, persons with early stage dementia have indicated they are aware of a societal stigma against dementia, causing worry about how others may respond to their diagnoses (Reed & Bluethmann, 2008). Fear of public embarrassment discourages persons living with MCI or early dementia from participation in activities, including exercise (Ashworth, 2017;Cedervall & Arberg, 2010;Husband, 2000). It is likely that improved public education and awareness could reduce stigma (among the public) and fear of stigma (among persons living with MCI or early dementia and care partners) and thereby promote the social participation of persons living with MCI or early dementia in activities such as exercise.…”

Section: Discussionmentioning

confidence: 99%

Perceived Facilitators and Barriers to Exercise Among Older Adults With Mild Cognitive Impairment and Early Dementia

Hobson¹,

Dupuis²,

Giangregorio³

et al. 2020

Journal of Aging and Physical Activity

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Persons with mild cognitive impairment (MCI) and early dementia are often physically inactive, despite associated benefits. This study explored the barriers, facilitators, and preferences for exercise among persons living with MCI/early dementia. The authors conducted 2 focus groups among persons living with MCI/early dementia (n = 4, 6 participants) and 2 focus groups among care partners (n = 3, 4 participants). The transcripts were analyzed using thematic analysis, guided by the social-ecological model. Three themes emerged, reinforcing motivation to exercise, managing changes to cognitive and physical health, and variable perceptions of dementia, each with influences from individual, care partner, and community levels. Low intrinsic motivation, poor physical/cognitive health, and stigma restricted the exercise among persons living with MCI/early dementia. The care partners motivated their partners and provided company and transportation to exercise. People with MCI/early dementia also indicated poor access to exercise providers and exercise opportunities that met their needs and preferences was a barrier to exercise participation. Knowledge translation research should develop exercise interventions at the individual, social, and community levels.

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Perceptions of stigma among people affected by early- and late-onset Alzheimer’s disease

Cited by 25 publications

References 82 publications

Looking ahead to a future with Alzheimer's disease: coping with the unknown

Looking ahead to a future with Alzheimer's disease: coping with the unknown

Analyzing Twitter as a Platform for Alzheimer-Related Dementia Awareness: Thematic Analyses of Tweets

Perceived Facilitators and Barriers to Exercise Among Older Adults With Mild Cognitive Impairment and Early Dementia

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