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P6: Perceptions and image of dementia

Detailed programme, abstracts and presentations

P6: Perceptions and image of dementia

P6.1. Overcoming Alzheimer’s stigma: using a mediatised event to create an awareness campaign

WILLIAMS Kate, NICAISE Salomé, PALERMITI Federico

Context: According to Moroccan authorities, in 2020, people aged 60 and over will represent between 11 and fifteen percent of the Moroccan population. The number of cases of dementia and other related disorders in Morocco is currently estimated between 70,000 and 90,000. This number is extremely under-estimated due to the fact that there is still a tremendous stigma attached to dementia.

This negative perception of the disease creates a taboo, and dementia is often associated with insanity and even witchcraft.

Objectives: During the 2015 edition of the emblematic automobile rally “Rallye Aïcha des Gazelles”, the Monegasque Association for research on Alzheimer’s disease (AMPA) and the South Morocco Alzheimer Association (SMA) organised 2 initiatives in the framework of the Mediterranean Alzheimer Alliance (MAA). For the 1st time a team “Les Gazelles pour Alzheimer” participated in this competition in the name of dementia awareness. For the 1st time an Alzheimer caravan was also organised during the rally in order to distribute information and provide support in some of the isolated villages in Morocco. These two simultaneous initiatives are a perfect example of how to convey a positive message and raise awareness on dementia using a mediatised event.

Results: The Alzheimer caravan provided specific dementia training in 7 villages and more than 500 information pamphlets in Arabic and in French were distributed. Neurology consultations were proposed and medication was sometimes offered. Trained staff were able to talk openly to families about dementia and its consequences -  a first step forward in changing the perception of this illness.

Concerning the automobile rally, competing for this cause gave “Les Gazelles pour Alzheimer” added motivation to complete the rally. The excellent press coverage during the competition was an amazing opportunity to create a true awareness campaign for dementia.

P6.2. Perceptions of memory-friendly Finland from parliamentary election candidates

OKKONEN Eila, KUUSTERÄ Kirsti

The candidates in parliamentary election could be seen as a smaller version of the Finnish population – they come from different backgrounds and from every part of Finland. During the spring 2015 The Alzheimer Society of Finland invited all the 2000 candidates to support an election pledge towards “memory-friendly Finland”, and the candidates responded positively. As a part of signing the pledge, the candidates stated their own reasons to sign it. These explanations form a rich data that offers glimpses to the perceptions and images of memory diseases and the concept of memory-friendliness.

The candidates (currently n=424, but the campaign runs until mid-April) signed the pledge in a website (www.muisti15.fi) and were able to share their involvement through social media. The invitations to join the campaign were sent via email to most of the candidates, but the candidates were also reached through local happenings and social media. Thus it can be assumed that the candidates have an interest to publicly support the cause and are inclined to have positive attitudes towards memory diseases.

The election candidates’ perceptions of memory-friendly Finland are examined through qualitative content analysis. According to the preliminary results, the candidates’ explanations to sign the pledge can be divided into three major category: 1) personal experience, 2) memory diseases as a national health issue, and 3) human right approach.

Part of the data consists of the ways the candidates describe how they would as members of parliament support the construction of “memory-friendly Finland”. According to the data the “memory-friendly Finland” will be built based on elements such as: 1) prevention of memory diseases, 2) investing in good care, 3) paying attention to the families and informal caregivers, and 4) supporting research and development.

These results will be revised and developed after the campaign ends in April.

P6.3. “Coming Out of the Shadows”

LEONARD Tina

“People don’t have to be afraid and people don’t have to be awkward about it, it is also not a reason for us to declare our lives over, with the correct supports we can continue to live long in the community.”  Ronan Smith, member Irish Dementia Working Group.

The stigma attached to dementia can prevent people from talking openly about it and there is a growing body of work that suggests that stigma promotes social exclusion (Alzheimer Disease international, 2012); having a similar impact to the widely accepted experience of living with a physical disability (Alzheimer Australia, 2010 ). As a result the person can withdraw from social situations for fear that others will find out; stigma therefore poses an obstacle to the well-being and quality of life of both persons with dementia and their family carers (ASI, 2006).

This presentation outlines work undertaken in Ireland to bring dementia “out of the shadows” by challenging commonly held perceptions and by changing the visual narrative used in the portrayal of dementia. Two public awareness campaigns run by the Alzheimer Society of Ireland (ASI) addressed stigma around dementia, by placing the person and their carer at the heart of the campaigns to ensure their voices were heard and their faces seen.

The presentation will describe the content of these campaigns, including visual and audio examples and images. These will be compared to more “traditional” images of dementia. The impact of the campaigns and their continued “life” via ongoing media work will be discussed with evidence presented on the reversal of previous negative trends and the positive impact on social and traditional media as well as increases in demand for dementia specific services as a result of the campaigns.

P6.4. Dementia Friends – Changing the way a nation acts, thinks and talks about dementia

HUGHES Jeremy, CROWTHER Nikki, RODRIGUEZ Natalie

Dementia Friends aims to provide people with a better understanding about dementia and the everyday, practical actions they can each take. Having already achieved our goal to reach one million people with this information, understanding and empathy by 2015, a further ambition to reach another three million Friends by 2020 has been set.

Through the programme, we aim to change attitudes and behaviours to build a lasting legacy of dementia friendly communities; communities that envelope, not expel, people living with and affected by dementia.

Based on a Japanese concept, the Alzheimer’s Society initiative relies on thousands of volunteers (Dementia Friends Champions) who are trained to deliver informative and interactive 45min information sessions in their communities to individuals who become Dementia Friends. The sessions highlight messages including; dementia is not just about losing your memory, there’s more to a person than the dementia and committing to an action - big or small - that will help someone affected by dementia to live well. Examples of actions taken include; “My wife (who lives with Alzheimer's) and I encouraged about 200 businesses in our town to become more aware about dementia” and “I blog about living well with dementia to spread awareness of and understanding of living with dementia.”

Another way to become a Dementia Friend is online where you can watch a short video and request a badge and further information. The video features Gina who was diagnosed with early onset dementia. Gina highlights the message that dementia isn’t a natural part of ageing and younger people are also diagnosed.

A recent evaluation survey found that 75% of respondents felt Dementia Friends had increased communities’ understanding of dementia and 77% of Friends feel they have a greater understanding of dementia since participating in Dementia Friends.

P6.5. Living well with dementia: changing perceptions & images of dementia

Scottish Dementia Working Group

Background: The Scottish Dementia Working Group (SDWG) is a national campaigning group, run by people with dementia and is the independent voice of people with dementia within Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.

Aims: This project, which we are presenting, is focused on novel ways of highlighting and challenging some of the negative stereotypes of dementia and thereby reducing the associated fear and stigma.

The SDWG believes that negative representations, particularly in the media, serve to sensationalise aspects of dementia and perpetuate a culture of fear surrounding dementia and are committed to working to change the way in which people with dementia are viewed by reducing the prejudice and stigma that can affect people with dementia negatively.

Method/Participants: Six group members have recently become involved in “Keeping Track” a national project being facilitated by RADAR, a media development and citizen journalism organization. Using specially adapted handsets, a communications channel has been created to enable people at the early stages of dementia to voice record details about the impact of the condition in their own words. Through this, participants are being given a unique opportunity to develop “Dementia Diaries” and share their personal experiences, in order to increase public understanding about dementia, tackle stigma and improve support services.

Findings/Desired Outcomes/Conclusions: The “Dementia Diaries” were featured in the Comic Relief Twitter Takeover on 26thFebruary 2015. The dedicated Twitter feed created opportunities for people to share the realities of living with the illness and to raise the profile of the issue in the UK. One of the SDWG committee members made a contribution on “Living Well with Dementia” for the comic relief site, and the feature was picked up in the national newspapers.

 

 
 

Last Updated: Tuesday 29 September 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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