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P6. Awareness and policy campaigns

Detailed programme and abstracts

P6.1. Global Dementia Friends Network: Taking action and delivering impact at a global level

FERNANDEZ GOMORA Daniela1, VAN DEN BOS Katrine2

1Alzheimer's Society, London, United Kingdom, 2Alzheimerforeningen, Kobenhavn, Denmark

Globally there has been a persistent lack of understanding that dementia is a medical condition and broader stigma is still widely associated.

The Dementia Friends programme is the biggest initiative to raise awareness of dementia, change perceptions and address stigma. Every Dementia Friends programme is different, tailored depending on the country, and sometimes named differently to suit the cultural context. Alzheimer’s Society coordinates the Global Dementia Friends Network (GDFN), supporting other countries to develop their own Dementia Friends programmes by providing capacity building support and fostering a global network. Under the GDFN, national Alzheimer’s associations and other organisations in more than 45 countries are working together to transform societies and enable those affected by the condition to feel empowered and realise their rights by actively challenging stereotypes and discrimination.

The simple and accessible approach of Dementia Friends has delivered impactful results globally: 86% Dementia Friends in England and Wales have a better understanding of dementia, 67% of Dementia Friends in Germany feel more confident interacting with people with dementia, 83% of GDFN members have used Dementia Friends to engage with the health & social care sector while others have used Dementia Friends to engage with and support dementia self-advocates, to engage policy makers and to develop intergeneration approaches. It also contributes to the WHO target that ‘50% of Member States must have at least one dementia-friendly initiative by 2025.’ To date, members of the GDFN have collectively created more than 16 million Dementia Friends across all continents.

This session will be delivered by representatives from Alzheimer’s Society (England & Wales) and Alzheimerforeningen (Denmark), discussing the impact of their Dementia Friends programmes and will present a 3 minute film showing how Dementia Friends globally are turning knowledge into action, transforming the way the world thinks, acts and talks about dementia.

P6.2. Delisting of anti-Alzheimer's drugs in France: An exclusive survey of France Alzheimer's and related diseases

GILLY Lorène

France Alzheimer's and related diseases, Paris, France

Since June 2019 and the decision of the French government to stop the reimbursement of the four drugs used to treat Alzheimer’s disease and related disorders, France Alzheimer has repeatedly raised the alarm to draw attention on the growing distress caused to the 3 million of families affected. To make their voices and truths heard, the French organisation conducted a national survey between October 9 and November 16, 2018 and questioned 2,547 people:

  • 2,463 caregivers
  • 84 people with dementia

Left with no alternative solution, people with dementia and their caregivers are suffering the full consequences of the total delisting of the so-called “anti-Alzheimer’s” drugs. In response to the French Government's intransigence, this national survey has been conducted to raise awareness of the issue. Its results show three direct and worrying consequences:

  • The sudden cessation of the treatment is causing a brutal increase of the cognitive impairments. This deterioration was reported by 52% of respondents. 
  • Families already under pressure now have to pay considerably more for these treatments out of their own pockets: 2 out of 3 respondents were taking at least one of the four drugs when the announcement of the delisting was made. 20% have stopped their treatment and 10% expect to stop soon, mainly because of the excessive cost, especially given that VAT on these drugs has increased by 8 percentage points.
  • The therapeutic relationship between doctor and patient has broken down. Only 55% of those who have decided to stop taking their treatment will continue to see a specialist, 38% have already stopped doing so, and 7% are considering it.

For the sake of people with dementia and their families, the Government must now prioritise research to offer patients long-term solutions that are fully funded and appropriate for their needs.

P6.3. Forget dementia, remember the person!

CONSTANT Olivier

Flanders Centre of Expertise on Dementia (Expertisecentrum Dementie Vlaanderen), Antwerpen, Belgium

If we focus on the possibilities of people with dementia instead of their limitations, their dementia will disappear behind their talents and not the other way round, that is the starting point of the Flemish awareness raising campaign ‘Forget dementia, remember the person’ ('Vergeet dementie, onthou mens'). The innovative and emancipatory story of this campaign forms one of the foundations of the Dementia Strategy of Flanders (Belgium) and is written together with people with dementia and their caregivers. Their vision is the beating heart of 'Forget dementia, remember the person’, with a clear starting point: respectful communication is the basis for person-centered care and an inclusive society.

On the dynamic web platform and social media of the campaign, people can find a wide range of dementia-friendly communication tools, as a starting point to break down the stigma on dementia and to give a voice to the person behind the condition. We’ve released a series of cartoons that translate the campaign baseline. Together with a professional photographer and people with young-onset dementia we made posters that carry out the message. We made four short graphic novel-stories about communication in the last stages of dementia when words disappear. People can order for free photographs from a picture database. But the beating heart of the campaign, are the personal stories of the experts, namely the persons with dementia, their caregivers and the people who experience dementia day-to-day.

In this presentation, we explain the vision behind the campaign, we give snapshots of the rich source of communication tools developed, we share highlights of the personal testimonies we recorded and we will share the short animation movie ‘Forget dementia, remember the person’, written together with people with dementia who will also be present at the conference to share their experiences with the international audience.

P6.4. Shifting from awareness raising to creating meaningful outcomes for people living with dementia

HUGHES Jeremy, FRANCIS Vivienne, ROBERTS Pamela

Alzheimer's Society, London, United Kingdom

In 2019, Alzheimer’s Society embarked on making our communications and policy programmes ever more outcome focused, insight driven and evidence based.   

No longer is it okay for charities’ to only broadcast messages and hear anecdotally that programmes are making a difference. We must all work hard to understand audience insights – those from our beneficiaries and the public – so we can make sure communications and our programmes are effective in changing people’s behaviours around dementia and, most importantly evidence the meaningful actions taken and create the change we want to see.

We believe that people living with dementia have the right to live free from discrimination. The right to be recognised as who they are and not defined by a diagnosis. And the right to continue with day-to-day life, being included in our communities and not live in isolation or loneliness. But how do we know that things are getting better? That after all these years, that we’ve made a considerable difference?

Hear from Vivienne Francis, Director of Marketing and Communications, who will discuss latest findings on how the public’s discourse around dementia in the UK has changed and how we are using this insight and insight from over 500 people living with dementia to shape our dementia-friendly communities programme and accelerate the movement for change.

Pamela Roberts, living with dementia and her daughter Joanne, will join us to share the difference they’ve seen in their local community and how our communications and programmes are leading the grassroots movement for change. 

P6.5. Paving the way for more women in dementia research

GRAY Katherine

Alzheimer's Society, London, United Kingdom

Research has shown that studies with at least one female contributor are more likely to tackle women’s health issues and difference between the sexes and we know that dementia is an issue that disproportionately affects women.

The number of women in science, technology, engineering and mathematics (STEM) occupations is beginning to increase. Analysis of the UK labour force survey for 2018 by WISE records around 900,000 women in STEM occupations, but this still only makes up only 22% of the total STEM workforce. The majority of women with STEM qualifications do not work in STEM careers, unlike their male counterparts. This means that the field is haemorrhaging talent.

Alzheimer’s Society is working hard to attract excellent researchers to dementia research and to keep them there. We have done this through taking part in establishing the UK Dementia Research Institute, as well as building supportive relationships with and rewarding our excellent researchers through our Dementia Research Leaders Programme.

We have most recently become one of the few charitable funders who provide maternity/paternity/adoption and sick pay and leave for our PhD students as well as providing guidance and support for more senior researchers. Our researchers have told us that lack of work life balance and support from research institutes is a major factor contributing to women leaving research.

We believe that research funding organisations have a key role to play in keeping excellent female researchers in the field. We are continuously evaluating our research funding schemes to remove any gender based bias and support women in research. Of our 154 active research projects 85 are led by women, representing 55% of the current portfolio.

This session explores Alzheimer’s Society’s and other initiatives that can foster and retain female expertise in dementia research.

P6.6. Promoting a brain-healthy lifestyle to reduce dementia risk: Results from the MijnBreincoach public health campaign

HEGER Irene, VAN BOXTEL Martin, DE VUGT Marjolein, VERHEY Frans, KÖHLER Sebastian, DECKERS Kay

Alzheimer Centrum Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands

Background: Preventing or delaying dementia onset is a public health priority, but requires awareness in the population and targeted strategies. A public health campaign to raise awareness of dementia prevention, targeting 12 previously identified lifestyle-related risk and protective factors, ran from March 2018 to January 2019 in the South of the Netherlands.

Methods: The MijnBreincoach public health campaign aimed at raising awareness of the relationship between lifestyle and brain-health using the tagline ‘We are the medicine ourselves’ targeting people aged 40-75 years old in the province of Limburg (Netherlands). It used both a mass media and a community-participation approach (divided over 3 living labs). Part of the campaign was a freely accessible eHealth platform (MijnBreincoach app) that flags individual room-for-lifestyle improvement and produces daily notifications on improving brain-health. A survey of the public knowledge about lifestyle and brain-health was conducted in two independent samples before (September 2017) and after (February 2019) the campaign to assess population-level change in awareness.

Results: Physical activity and healthy diet were recognized more often by people as being protective against dementia at the post-assessment (71% and 61%, respectively) in comparison with the pre-assessment (63% and 50%, respectively). Approximately 20% of the respondents had heard about the campaign and more than 30% recognized the campaign material (e.g. leaflets). Those exposed to the campaign, were significantly more aware of dementia risk reduction and were more motivated to take action to improve their own brain-health. The community-participation approach with more and targeted exposure resulted in better recognition of campaign material and more people who had heard about the MijnBreincoach app.

Conclusions: Public health interventions on dementia risk reduction are both relevant and feasible, and increase awareness and willingness to take action in those exposed. Hence, future large-scale campaigns should aim at maximizing exposure in the general population.

 

 
 

Last Updated: Thursday 04 July 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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