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P3. Perceptions and image of dementia

Detailed programme, abstracts and presentations

P3.1. How to change the dominant perceptions of dementia – presentation of two recognised good practices

Constant Olivier

People with dementia are often faced with prejudice and media tend to reinforce the stigmatisation of dementia. As a result, people with dementia, but also those around them, lose contact with local society. The academic study ‘Frames and counter-frames: giving meaning to dementia’ helps us to understand the ‘dominant frames’. These images and ways of speaking about dementia spread a one-sided negative image. A more resolute use of counter-frames, a discourse that focusses more on the possibilities of people with dementia, might reduce the stigma that surrounds dementia. With the campaign ‘Vergeet dementie, onthou mens’, the Flemish government wants to implement these inspirational research results. In this presentation, we focus on the communication strategy and the rise of some unique projects that carry out the message of empowerment. The campaign works bottom-up, in permanent reciprocity with the main target groups. The objective: the implementation of local good practices of integrated care.

This approach was recently recognised by the Flemish media. With the large scale solidarity campaign ‘Music For Life for dementia’, the Flemish Expertise Centre On Dementia, The Flemish Alzheimer League and the Alzheimer Research Foundation launched an international unseen initiative. For the first time the national media set up a campaign to reduce the stigma on dementia. Their tools: the power of music, the creation of a badge to show your support for people with dementia and their caregivers, a massive launch of local actions to thank people who wear the badge and an online platform to register your personal memories through music, as a way to show the power of reminiscence.

The result: 625,000 sold ‘badges for life’, more than 20,000 registered ‘songs for life’ and the live performance of an intergenerational choir of people with dementia opening up for the rock band Muse. But most importantly: people with dementia, their caregivers and professionals could speak out, seven days long. Recent research shows us not only the massive impact of the campaign, but also gives us more information about the perception that people have of dementia. To conclude, we present the most important facts & figures and set up a future strategy for local, national and international projects that want to break down the taboo concerning dementia.

P3.2. Evaluation of dementia knowledge, attitudes and educational needs among nursing students

Scerri Anthony, Scerri Charles

With increasing number of individuals with dementia, nursing students are more likely to come into contact and care for dementia patientsduring their clinical placements and once they qualify. Nevertheless, they may not be adequately trained during their undergraduate study programme and lack of support during their placements may negatively influence nursing students' attitudes. Thus, measuring the level of knowledge, attitudes and educational needs of nursing students could be an important step in providing evidence on the need of enhancing dementia care training in the nursing curriculum. A questionnaire survey consisting of the Alzheimer’s Disease Knowledge Scale (ADKS), the Dementia Attitude Scale (ADS) and a self-developed 3-point Likert scale assessing students’ training and educational needs was distributed to all nursing students reading for their degree at the Faculty of Health Science at the University of Malta. The findings (61.3% response rate) indicated that nursing students had an adequate knowledge and showed positive attitudes towards individuals with dementia, including Alzheimer’s disease. Age, academic year, level of training and previous care of dementia patients during clinical placement were all found to be associated with increased knowledge and positive attitudes. Dealing with challenging behaviour scored the highest on the training and education needs by students. Significant gender differences were reported on the necessity of having more training on communications skills, individualised care plans, care and treatment decision-taking and end-of-life patient management and care. In conclusion, knowledge and attitudes of nursing students in Malta towards persons with dementia could be markedly improved by enhancing dementia care training and improving their clinical experience.

P3.3. Dementia in the movies: portrayal of life in an institution

Gerritsen Debby, Roel Wendy, Kuin Yolande

Background: Although dementia affects more than 30 million people worldwide, negative stereotypes about its consequences are still prevalent. Research shows that the general public’s knowledge and beliefs about dementia need enhancement and that persons with dementia and their caregivers experience stigma. Stigma is also attached to nursing homes and those who work in them.

The portrayal of psychiatric illnesses in visual media influences the public’s perception and contributes to the stigmatisation of these illnesses, but little is known about the quality of the depiction of dementia in the movies, including the portrayal of life in an institution.

Aim: Study the portrayal of the professional environment of persons with dementia in recent motion pictures with the following questions: 1) how is the physical institutional environment displayed; and 2) what institutional policies are presented?

Method: Motion pictures (released January 2000 – March 2012) were searched in the Internet Movie Database using the search terms ‘dementia’, ‘Alzheimer’s disease’ and ‘senility’.

Inclusion criteria: 1) (possible) dementia is a theme; 2) a long term care institution is shown; 3) the person with dementia is older than 65; 4) the movie is accessible for a large audience, (released in the USA and either the UK or the Netherlands); 5) the movie could be obtained by the authors. This selection procedure resulted in 12 films.

Independently, the authors watched all movies, selected relevant scenes and described displayed information about institutional policies; one of them literally wrote down the dialogue. Then, the researchers independently scored an observational measure derived from several existing measures rating the institutional environment. Subsequently, they discussed their scoring and reached consensus on differences of opinion.

Results: 1) The physical environment of the institutions shown is generally agreeable, although the second and third floor are mentioned as floors for ‘the more progressed’ in several movies and are portrayed soberly with disengaged patients in their pajamas. 2) Five movies show extraordinary policies, e.g. in two movies the person with dementia is chained to his bed. In another two the husband is forbidden to visit his wife, which, in one of these, concerns the first 30 days of her stay.

Conclusion: Although in most movies the atmosphere in the physical environment is rather good, especially for persons with mild dementia, several movies show negative stereotypes, specifically in more advanced dementia. To prevent stigmatisation the depiction of the professional environment in motion pictures needs improvement.

P3.4. Perceptions of Alzheimer’s disease in the media and in the cultural productions: evolutions from 2008 to 2013

Ngatcha-Ribert Laëtitia

The representation of Alzheimer’s disease in media and culture has increased significantly, giving rise to a rich, subtle and complex production. 

Fondation Médéric Alzheimer has conducted a study to measure how the perception of Alzheimer’s disease, people with dementia and their caregivers has evolved in the media and culture within the last five years. Media include printed press, documentaries, awareness campaigns. Cultural productions include fiction materials such as novels, theater plays, films, television series etc.

Methods: The national and international Press review of the Fondation Médéric Alzheimer (about 60 pages monthly) has been analysed over the last five years. This core corpus was enriched by a further bibliographic search in media and cultural productions.

Results: Observed trends show that:

Alzheimer’s disease has been trivialised, becoming a “background noise” both in media (coverage of research advances, local stories) and fiction works (notable use by singers and comedians, development of child literature etc.).

Discourse became more elaborate, sophisticated, diversified and much more complex than ten years ago. Terms became more technical. Dossiers about neurosciences and neuro-imaging do not hesitate now to be precise.

Two main questions arise often: “What to show?”, “What and how to communicate?”, without miserabilism or overly naïve optimism. Alzheimer’s associations are notably faced to this critical issue. Recently, some films (likeThe Iron Lady) have been controversial, giving rise to discussions and debates in the public space.

Several iconic figures embody the “struggle” against Alzheimer’s disease: “medical stars” are still leading the show through their technical expertise; in the same time, the mythical figure of the caregiver supporting the person with dementia has been given a different place; regarding to people with dementia, even if Alzheimer’s disease may still sometimes be perceived as shameful, some figures have decided to reveal their disease in a media-covered coming-out.

The person with dementia may be entrusted with an anthropological-like function of a truth-teller (provided by her presumed sincerity, unpretentious honesty, as a “deprived” human being) and of a whistleblower revealing dysfunctions of the society.

Conclusion: Social representations have significantly evolved in the recent period. Issues surrounding Alzheimer’s disease appear now in emerging countries, like China, India or South Korea. Little is known about social representations of the disease in the Arab world or in Africa. 

P3.5. Dementia, What Comes to Mind?

Mc Parland Patricia

Background: Recent policy recognises the importance of public awareness and the implications in terms of help seeking behaviour and early diagnosis. However public understandings are also significant in terms of the ways people respond to someone who has dementia. Despite increasing awareness of dementia, people living with this condition continue to be marginalised and stigmatised.  Their citizenship and status as members of society is not secure. This paper reports on qualitative findings from a PhD study exploring how the general public understand and respond to dementia.  Specifically, it describes the self-reported responses of the general public to people with dementia and discusses how these views might impact on their status in society,

Methods: This was a mixed methods study carried out in Northern Ireland. It included an attitudinal survey with 1,200 people, five focus groups with 32 participants and nine one to one interviews. Vignettes were used to explore public perceptions in focus groups. Survey data were analysed using SPSS (V19) and a thematic analysis was carried out on the qualitative data using NVivo 9. 

Findings: Members of the general public view people with dementia as  “other” and take steps to create social and psychological distance. A paternalistic generosity masks a deeply stigmatising response to people living with dementia.  Ageism, stereotyping, nihilism and infantilisation were all evidenced in the self-reported responses of the public. Participants used stories to contextualise their knowledge and this experiential knowledge is anecdotally repeated as the facts of dementia rather than of an individual experience. The public do not see dementia as a progressive condition but rather they have a fixed image of dementia as linked to frail older people and poor care in nursing homes.

Conclusions: Despite increasing knowledge about dementia and improved awareness, the attitudes of the general public to people living with dementia remain entrenched in notions of the living shell and of people who are no longer there. These attitudes are deeply stigmatising, perpetuate stereotypes and have considerable implications in terms of citizenship and dementia friendly societies.  The relatively recent cultural shift to ideas of successful ageing potentially further disenfranchises those with dementia who personify ideas of unsuccessful, dependant ageing.  There is no sense of a life worth living with dementia, rather dementia is seen as hopeless.

P3.6. Concerns about cognitive functioning, dementia worries, and psychological well-being

Cutler Stephen, Hodgson Lynne

Objectives: This study seeks to determine whether psychological well-being is affected by concerns about cognitive functioning and worries about developing dementia

Methods: We use three waves of data collected in 2000, 2005, and 2011 from two samples of persons ages 40-60 at T1 (total N at T3=177): (1) adult children with a parent diagnosed with probable Alzheimer’s disease (AD), and (2) a matched control group with no parental history of AD.  The principle predictor is a summative measure (α=.77) of the number of waves Rs scored high on five indicators of concerns about cognitive functioning and worries about dementia.  Outcome measures include the number of waves Rs were high on depression and stress and low on life satisfaction and mastery. 

Regression analyses for each outcome were run with six predictors: (1) the composite measure of cognitive and AD concerns, (2) which subsample R was in, (3) a concerns/subsample interaction term, (4) R's educational attainment, (5) R's age, and (6) R's sex.

Results:  For all psychological well-being outcomes, the cognitive and AD concerns measure was a significant predictor (p<.001) net of other effects.  Neither subsample nor the concerns/subsample interaction term reached significance.  Education was the only other predictor to reach significance, but just in the case of mastery (p<.05). 

Discussion: Over an 11-year period, the more continuous one’s concerns and worries were about cognitive functioning and developing AD, the more likely were such concerns and worries to be detrimental to psychological well-being.  Specifically, the greater the number of waves Rs expressed various concerns and worries about cognition and AD, the greater the number of waves Rs were found to be high on depression and stress and low on life satisfaction and mastery.  These effects held regardless of whether Rs were from families where a parent had been diagnosed with AD or from families with no parental history of AD.  That our measure of concerns and worries about cognitive functioning and AD appears to be a strong and robust predictor should alert practitioners and others to this source of threats to psychological well-being.

 

 
 

Last Updated: Monday 04 November 2013

 

 
  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union
 
 

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