P9. Awareness campaigns and lobbying
Detailed Programme, abstracts and presentations
P9.1. B-learning for volunteers
Alzheimer Nederland depends on the voluntary contribution of nearly 5,800 volunteers. Courses, trainings, meetings, individual coaching and peer group reviews are being offered. To enlarge the range of volunteers participating Alzheimer Nederland wants to transform the current program into a program based on the principles of b-learning. B-learning stands for blended learning: different methods of learning are combined to realize an optimal environment for learning (partly individual by using internet technology and partly by traditional meetings). As a kick-off we already developed a digital introduction for new volunteers. This module can be found on our website.
In 2010, Alzheimer Nederland focused on awareness and visibility. With the growing number of people with dementia we need to be visible as an organization which effectively deals with the consequences of this growth. We know that the internet is a very powerful medium of (mass) communication. Therefore we want everyone (and our volunteers in particular) to find their digital way to our organization. We want to make sure that the distance between our volunteers and the national office is as small as possible. A volunteer should be able to spend his/her time effectively. We don’t want volunteers spending long hours travelling (even in a small country like ours this is a major obstacle to participating in meetings). Most of all, we want our volunteers to contribute to the organisation’s objectives.
In the past few years we have developed a program for training and skilling our volunteers. Through a survey we found out that only 25% of our volunteers participated. Our goal is to radically increase this level of participation. We believe that through b-learning we will both enlarge the range of volunteers participating as well as optimise the way we can equip our volunteers with knowledge and skills. Therefore we will still be organising face-to-face-meetings because we believe that direct contact is important. On the other hand, the internet offers all kinds of possibilities in sharing information. On our new website, we have developed a special section where our volunteers can extract information online. This “Vrijwilligersplein” (imaginative Volunteersquare) will become our online-community for our volunteers in the future. Through internet technology we can be nearby even though we’re far away.
We already have developed a digital introduction for new volunteers for a start. In the past, we organised two national meetings taking up a whole day. Since we began working with the digital module we have been able to shorten the traditional meeting while separating the “theory” and putting this in the digital module. Before the meeting the volunteer can prepare himself anytime/anywhere by reading this information. As part of the module we also provide a test to find out whether the volunteer has understood the information provided.
We plan to transform our complete Program Expertising Volunteers into a b-learning program. At the moment, we are searching for funds to finance this project. Although the project requires substantial initial financing, we believe that in the long term it can lower the costs.
P9.2. InfoMobil – Swiss Alzheimer’s Association on the road
The InfoMobil is a caravan in the colors and the logo of the Swiss Alzheimer's Association packed with informational handouts, flyers and brochures on various topics concerning dementia. Starting in March 2009 as a pilot project of the cantonal chapter of Berne, it drives through every part of Switzerland, making a halt in front of local supermarkets, market places or other places of interest.
We illustrate the possible public and political impact such a campaign is able to make by the example of the Canton of Aargau, a northern region of Switzerland with mixed rural and suburban structures.
During the entire month of August 2010 the InfoMobil was on the road in the Aargau. A team of over 50 volunteer staff members, who all had personal or professional experience on the topic of dementia, brought information to the general public during 26 days. The services of the Swiss Alzheimer’s Association and its affiliated partner organisations such as relief care, outpatient care were made known. Also an important goal of the campaign was to raise public awareness of the disease in order to reduce fear and taboo, and to promote understanding of the challenging task of caring for relatives with dementia. Several thousand pamphlets were distributed to the pedestrians passing by and visitors of the InfoMobil, and more than 3,000 signatures for the Manifesto "Priority Dementia” were collected. The volunteers had countless conversations, listened to problems, referred to the local Alzheimer’s counseling centre, and much more. Not only elderly people, but also very young were informed, took leaflets and also had some in-depth conversations with the InfoMobil maintainers. All in all, the volunteers contributed about 540 hours – and for everybody involved it was a memorable experience, a repetition of the campaign already being planned.
As a result of the InfoMobil campaign the demand for the cantonal Alzheimer’s counseling centre increased significantly. Also, the cantonal representatives of the Alzheimer’s Association were asked more frequently to give speeches and lectures at different sites of health care and charitable organisations with the result of increasing the flow of donations.
At the political level, the signature sheets of the Manifesto “Priority Dementia” were handed over to the Cantonal Government of the Aargau in the presence of the television and press. With over 3,000 signatures the collection had surpassed petition strength and so the governmental representative who accepted the sheets admitted the urgency of the challenges.
All in all, the campaign had a positive effect at various levels and made a noticeable impact on the public media and politics. It is a significant step amongst many others towards improving the lives of patients and their families and strengthening their reintegration into the community.
Until now, more than 250 volunteers in six chapters of the Swiss Alzheimer's Association have been on the road with the InfoMobil. The campaign will be continued in the other 15 chapters.
P9.3. The changing role of Alzheimer associations
The role played by Alzheimer’s organisations has changed dramatically over the last 30 years and there is a need to reassess that role in the light of new challenges and opportunities.
Alzheimer’s Australia, perhaps like other organisations in developed countries, has become increasingly strident and confident in the call for action and for dementia to be embraced as a national health priority. This has been helped both by being able to point out the realities of the ageing of the population and the increasing numbers of people with dementia but also by being positive about the benefits of good dementia care, dementia risk reduction and dementia research.
So what are the challenges for Alzheimer’s organisations at the national level as agents of change for people living with dementia in the next ten years?
First, to examine the balance of organisational activity between advocacy and service provision.
Second, to address the pervasive negative social attitudes towards people with dementia that lead to social rejection, internalised shame and social isolation. The fear of dementia needs to be translated into action as has been the case with cancer.
In doing so organisations need become more professional in the way they approach branding and marketing and the use of social media.
Third, to insist that dementia is recognised as a chronic disease that has to be addressed within a public health framework. Dementia is not an aged care issue alone but impacts on all aspects of health policy including primary care, acute care, risk reduction and investment in research.
Fourth, to inform the debate that will take place about the future clinical definition of dementia from a consumer perspective. If the definition is broadened to reflect the fact that the biological changes associated with dementia develop many years before diagnosis, it will have a substantial impact on the numbers affected and possibly increase concerns among those who are worried about their memories or brain health but fall well short of a formal clinical diagnosis.
Fifth, Alzheimer’s organisations should be prepared to inform difficult debates about end of life issues even if they stop short of gaining a consensus on what options should be available.
Lastly, to foster new ideas and innovation that will generate dementia friendly services and communities.
Arguably the challenge represents a revolution rather than evolution in the role of Alzheimer’s organisations.
P9.4. Alzheimer Experience
Anne-Mei The, Marco Ouwehand, Marco Blom
Th core problem in caring for people with dementia is the lack of awareness of the gap between the real world and the perception of reality of the person with dementia. Professionals, caregivers and family members have difficulty communicating and establishing caring relationships. To overcome this lack of awareness and to bridge this gap, the Alzheimer Experience has been developed.
The Alzheimer Experience is a free, online, interactive media production that follows the life of two people with Alzheimer as seen through their eyes. The storyline is build-up around 22 filmed, intense scenes, that each focus on experiences that are typical for people with Alzheimer’s. The scenes have a high emotional content, ensuring a large impact on the viewer.
The Netherlands Institute for Mental Health and Addiction and Alzheimer Nederland have researched the experiences of patients and ordered these by the phases of the Global Deterioration Scale (GDS) and classified them within 5 domains:
- experiencing your own (im)possibilities;
- becoming dependent;
- changing social contacts;
- experiencing (in)security
- changing perception of reality
The Alzheimer Experience has a unique feature: it is multi-perspective. At any given time, the viewer can choose the perspective of any person within a scene. The view will directly change to the chosen perspective, including the inner voice. To accentuate the patient’s different perception of reality, we use rotoscope animation. In every scene, the user can get factual explanation on what happens in the scene and how it relates to the disease. To complement this explanation, a more detailed database with information on Alzheimer’s disease is available within the Alzheimer Experience.
The Alzheimer Experience is a high quality, film based experience, directed by one of the best Dutch movie directors Paula van der Oest (Oscar nominee, Golden Calf award). As an experienced script-writer, she also had the lead in the writing team for the scenarios for the Alzheimer Experience. The Alzheimer Experience will be introduced in the Netherlands in May 2011 and will subsequently be made available in other languages and cultural adaptations.
Development of the Alzheimer Experience was made possible by a grant of one of the major Dutch Lotteries (Vriendenlotery), Stichting Doen and Alzheimer Nederland. It is produced by Submarine.
Last Updated: Wednesday 26 October 2011