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P14. Awareness campaigns

Detailed programme and abstracts

P14.1. Using our advocates’ voices to campaign for change: Pre Budget Submission 2020

GERNON Lisa

Alzheimer Society of Ireland, Dublin, Ireland

“I was diagnosed with Alzheimer’s disease in 2012 after a five year struggle to get a diagnosis. Since then I have campaigned relentlessly so that politicians will change policy and people with dementia are better supported from their diagnosis onwards. But I’m still asking, still waiting and still struggling” Dr Helen Rochford Brennan, July 2019. 

Helen, member of the Irish Dementia Working Group and Chair of the European Working Group of People with Dementia, spoke these words at the launch of The Alzheimer Society of Ireland (ASI) Pre-Budget Submission (PBS) 2020 ‘Dementia Supports Across Ireland – Still Asking, Still Waiting, Still Struggling’ in July 2019.

Each year, The Alzheimer Society of Ireland lobbies the Irish Government to ring-fence specific funding for supports and services in their budget for people living with dementia and those who care for them.

This presentation will detail our campaign and how we developed it by collating the campaigning work that had been undertaken over the years by a number of people living with dementia and a family carer.  We produced three in-house campaign videos to amplify the message of our PBS campaign to demonstrate to the Government, policy makers and the general public that people impacted by dementia are Still Asking, Still Waiting, Still Struggling for investment in dementia care. 

We used their voices to highlight the urgency of the need for investment. 

http://tiny.cc/2nq5oz   – Dr Helen Rochford Brennan

This presentation will demonstrate how the effective use of advocates' voices can be used to bring about real change.

Last year in Budget 2020 the Government announced funding for 10 additional Dementia Advisers, something we had been calling for many years.  It is clear that the voice of those involved in the campaign had an impact, both on the public and on government decisions.  

P14.2. Increasing awareness of dementia amongst supermarket employees and its customers - the case of REMA 1000

VAN DEN BOS Katrine, VAN DEN BOS Katrine

Alzheimerforeningen, Copenhagen, Denmark

Since 2016 Alzheimerforeningen (The Danish Alzheimer Association (DAA)) has partnered with REMA 1000 (a supermarket chain with over 300 supermarket stores in Denmark).

In 2020 the DAA launched an internal campaign using REMA 1000 employees to share their best advice and experiences on how to help people with dementia. The campaign was running on Rema 1000’s employee workspace (reaching 12.000 employees) and consisted of short videos of employees sharing their experience on how to interact with and help customers with dementia. The content was produced by the DAA and some of the content was also shared in DAA’s digital communication.  

The annual prize ‘Demensven’, which is given for a remarkable effort to help people with dementia, was awarded to a REMA 1000 employee whom exercised a special focus on how to help customers with dementia, and bond with their families in case of challenges that may occur.          

The Danish Dementia Friends Programme has a specific focus on engaging the private sector through strategic partnerships. Based on knowledge from the annual think tank for people with dementia, the DAA focuses on developing partnerships with the transport and retail industries. The approach is to offer tailor-made partnerships, where the focus is to give employees knowledge about how to adapt to customers with dementia. Supplying information on dementia to our partners’ using online learning platforms and intranet is essential.

In Denmark almost 10% of the Danish population is affected by Dementia either as living with dementia or as a caretaker. The DAA introduced its Dementia Friends program in 2015. The Danish Dementia Friends programme, also called ‘Demensven’ is highly inspired by the Alzheimer’s Society UK’s initiative Dementia Friends. The initial goal was to reach 100.000 Dementia Friends, that was accomplished in May 2019. Now the DAA is working towards engaging 500.000 Dementia Friends. 

P14.3. Building an inclusive society: a national campaign led by France Alzheimer

GILLY Lorène

France Alzheimer's and related diseases, Paris, France

In 2019, for World Alzheimer’s Day (WAD), France Alzheimer and related diseases chose to focus its message on inclusiveness and the necessity for all citizens to take into consideration people living with dementia and their caregivers.

The main objective of this national campaign, which was designed to last long after WAD 2019, is to raise awareness among society and to dismantle stigmas around the disease and its consequences.

This campaign was built on three main axes:

  • raising awareness and training the major national stakeholders (police and fire departments, railway operators, etc.), with the help of our nationwide network of 99 local organizations. It is essential that these actors of the everyday life are able to recognize, appease and support people living with dementia in their daily activities;
  • broadcasting a unifying symbol of recognition to signal our support for people living with dementia. Since we began its broadcasting, it appears to be a useful tool to spread awareness and the necessity to show more support to people living with dementia and to their caregivers;
  • inviting mayors of every French city to sign our pledge called “Alzheimer Caring City” and to engage in an inclusive approach. So far, more than 200 cities and/or departments (a form of local government) have signed our pledge and engaged since then in an active approach to facilitate in concrete terms the everyday life of people living with dementia and their families among their local communities.

With the active support of citizens, professionals and public authorities, France Alzheimer and related diseases strongly believes that, all together, we can build a more inclusive society for people with dementia and their family carers.

P14.4. Convincing the public that time really does matter in brain health

SCHELTENS Philip1, NOYCE Alastair2, GIOVANNONI Gavin3, BERG Daniela4, BROWN Laurie5, DIERICKX Kris6, FRISONI Giovanni7, HARDY John8, HEILBRON Karl9

1Alzheimer Center Amsterdam, Amsterdam, Netherlands, 2Wolfson Institute of Preventive Medicine, Queen Mary University of London, London, United Kingdom, 3Blizard Institute and Wolfson Institute of Preventive Medicine, Queen Mary University of London, Barts and The London School of Medicine and Dentistry, London, United Kingdom, 4Department of Neurology, Christian-Albrechts University of Kiel, Kiel, Germany, 5Institute for Governance and Policy Analysis, University of Canberra, Canberra, Australia, 6Centre for Biomedical Ethics and Law, Catholic University of Leuven, Leuven, Belgium, 7Centre de la Mémoire, University Hospitals and University of Geneva, Geneva, Switzerland, 8Department of Neurodegenerative Diseases, University College London, London, United Kingdom, 923andMe, Inc., Sunnyvale, CA, Sunnyvale, United States

Background: To maximize the potential for prevention and early intervention, the general public needs to understand the risk factors that can affect their brain health and how to maintain it. Dementia is not an inevitable part of ageing; however, awareness of this is low and the desire to learn about the risk of developing Alzheimer’s disease (AD) is hampered by a lack of conclusive biomarkers.[i] Adjustment of modifiable lifestyle factors in early- to midlife can significantly help to reduce the risk of developing a neurodegenerative disease.

Consensus development: A multidisciplinary, geographically representative group with expertise in dementia, AD, Parkinson’s disease, genetics, epidemiology, public health, patient advocacy and ethics developed an evidence-based set of recommendations to prepare a framework for a preventive approach to neurodegenerative diseases.[ii]

Implementation: The group produced 18 recommendations, of which 5 related to health promotion. Encouraging behaviours at all ages that help to improve brain health is crucial. Public health budgets must be provided and protected to improve public understanding of brain health and promote a positive approach that helps to reduce the risk of neurodegeneration.

Implications: Policymakers and public health bodies are well placed to provide a supportive environment, including national guidance and legislation that empowers individuals to make important lifestyle changes. Organizations working for change can collaborate to encourage the general population to adopt brain-healthy lifestyles and potentially reduce the risk factors and the likely progression to a disease diagnosis.  Further research is needed to establish which lifestyle factor modifications would bring the greatest risk reduction.

 [i] Milne R, Bunnik E, Diaz A et al. Perspectives on communicating biomarker-based assessments of Alzheimer’s disease to cognitively healthy individuals. J Alzheimer’s Dis 2018;62:487–98.

[ii] Giovannoni G, Noyce AJ, Scheltens P et al. Time matters. A call to prioritize brain health. 2019. Available from: http://www.oxfordhealthpolicyforum.org/reports/brain-diseases/brain-diseases-report

P14.5. Age-friendly policies in a cross-national setting: are communities ready for healthy ageing?

SCHICHEL Mignon1, VEENSTRA Marja2, KEMPEN Gertrudis3, DE VUGT Marjolein4, VERHEY Frans2

1Maastricht University, Maastricht, Netherlands, 2Department of Psychiatry and Neuropsychology and Alzheimer Center Limburg, School for Mental Health and Neuroscience (MHeNs), Maastricht University Medical Centre, Maastricht, Netherlands, 3Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, Netherlands, 4Department of Psychiatry and Neuropsychology and Alzheimer Center Limburg, School for Mental Health and Neuroscience (MHeNs), Maastricht University Medical Centre, Maastricht, Netherlands

Background: In several Western European countries, local communities have a responsibility in supporting older people and informal caregivers, including people with mental health problems such as dementia. Cross-border collaboration could benefit communities due to their similar demographic profiles by exchanging best practices. However, little is known about the local community policies on public health with respect to dementia and the prevention of depression for older people and their informal caregivers. The aim of the present study is to examine these local policies from a cross-border perspective in the Euregion Meuse-Rhine (EMR). 

Methods: We conducted 32 group interviews, one per community, including 33 Belgian, 52 Dutch and 27 German representatives. We mainly interviewed policymakers, complemented by representatives of senior groups, care homes or dementia organisations, about existing policies and activities with respect to dementia and prevention of depression and the needs of older people and informal caregivers in the community. 

Results: The topics dementia and informal care were more salient in policies than late-life depression. At the same time, all communities found the prevention of dementia and the prevention of late-life depression relatively important (both a mean of at least 3 out of 5 or higher). 17 of the 32 communities already had policies or activities related to dementia, versus 2 / 32 communities related to the prevention of late-life depression. Furthermore, communities reported that activities for the target groups were more present than sec policies to support the target groups. Lastly, the interviews increased awareness of these topics among the interviewees.

Conclusions: To cater for the specific needs of older people with mental health problems, prevention and awareness needs to be increased in the EMR, where communities face similar demographic challenges. This study provides insights into what policies and best practices can be enhanced and exchanged to achieve this goal.

 

 
 

Last Updated: Tuesday 30 June 2020

 

 
  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche
 
 

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