Authors: Nicole Goedhart, Lidewij Vat, Léa Darvey (VU-Athena) and Ana Diaz (AE)

What challenges do Alzheimer associations experiences regarding patient engagement? What do those associations and people with dementia hope to get in return for their engagement? PARADIGM had the opportunity to ask those questions to people with dementia, their carers and representatives from national Alzheimer Associations at two events organised by Alzheimer Europe in Brussels on 11 December 2019 (i.e. the meeting of the European Working Group of People with Dementia -EWGPWD – and the Alzheimer’s associations Academy).

The Alzheimer Academy was attended by several representatives from Alzheimer associations across Europe. The session was moderated by Ana Diaz (AE). Camilla Habre (EPF) provided a general introduction of Patient Engagement and PARADIGM, this was followed by a short presentation about the gap analysis by Nicole Goedhart (VU Athena), and an introduction in monitoring and evaluation by Lidewij Vat (VU Athena). The presentation was followed by an interactive session. The meeting of the EWGPWD was attended by 10 people with dementia and their carers and was moderated by  Nicole Goedhart, Lidewij Vat and Lea Darvey (VU-Athena) and Dianne Gove and Ana Diaz (AE).

The state of the art in European countries

Of the 21 representatives present in the session, almost half rated the importance of involving people with dementia, carers and Alzheimer associations in medicines development as “10”(on a scale from 1 to 10, 10 being the highest importance). The rest of the participants’ rated the importance between 8 and 9. On the other hand, the majority of the representatives felt this is rarely happening (specifically in relation to medicines development) in their country, this was particularly salient in many of the countries from Central and Eastern Europe (CEE) which often scored only 1 to 2 on the same scale. 

What challenges do Alzheimer associations experiences regarding patient engagement?

We identified four top challenges:

  • Misconceptions and stigma: it is still believed that it is not possible to involve people with dementia in research. It was mentioned that people with dementia are still often ignored. One of the participants shared: “People with dementia are not seen as active, collaborative people”
  • Exclusion of groups: representatives from Alzheimer associations highlighted the difficulty involving a diverse group of people with dementia. Especially people with advanced dementia or people from different backgrounds (education, economic status, ethnic minority groups) remain excluded from most initiatives. 
  • Financial and human resources: while Alzheimer associations often have a broad network and expertise; timely engagement and funding is often lacking. One of the representatives mentioned: “There is a common expectation that we, the patient association, will facilitate patient engagement at short notice and with no financial support to backfill staff”.
  • Awareness of Alzheimer’s disease is low and it is not considered a priority in many CEE countries: representatives from CEE added another more fundamental challenge, which could also explain why patient engagement is not happening in their countries. One of the representatives from Eastern Europe wrote: “In my country, the problem is that Alzheimer’s disease is not recognized by people. A lot of them do not even know what Alzheimer is. And we don’t have a lot of support from [the] government and institutions. Also, the problem is that we don’t have any research about Alzheimer and we don’t have finances for it”.

What do Alzheimer associations hope to get in return for collaborating with researchers?

We identified four key expected impacts of engagement: 

  • Learning: organizations largely mentioned that they hope to develop their knowledge in order to generate better research and medicines, from a two-way learning process. They highlighted that the collaboration would be a useful opportunity to share information between involved stakeholders, and produce relevant data and research. 
  • Enhanced well-being: engagement of people with dementia (PWD) can enhance their wellbeing, during the process of clinical trials, but also in their daily life. Organizations mentioned that they hope the collaboration could improve research procedures towards the needs of PWD, and thereby ease their participation. Furthermore, organizations hope it would stimulate a sense of usefulness, belonging for PWD, helping them to feel more empowered and to raise their voice. 
  • More diversity in research: organizations hope to generate a better representation of PWD in medicines research and development. 
  • Improve interactions and collaboration: the organizations highlighted the desire to enhance collaborations between the different stakeholders involved in the field of dementia. Engagement in research could increase the credibility of the Alzheimer associations to support discussions with other stakeholders (e.g. for donors, regulators). 

In the meeting, people with dementia and carers created a tree of impact (see an example in figure 1) to illustrate what they hope to get in return for collaborating with researchers. For example, a few impacts that may be unique to people with dementia are: 

  • Sense of belonging and respect: PWD mentioned that they hope to get in return a feeling of belonging (feeling included and not excluded). 
  • Reducing stigma: PWD also hopes to see changes in researchers’ and other stakeholders perceptions regarding PWD. It is hoped that engagement can help to remove the stigma by showing that PWD can be collaborators and can have a good life with dementia.

How will PARADIGM use the findings? 

As one of the missions of PARADIGM is to include the voices of vulnerable populations in patient engagement, for example, people with dementia, PARADIGM will integrate the needs, perspectives and expectations of all actors (including vulnerable populations) involved and will also produce a set of metrics to measure the impact of patient engagement for all players, including Alzheimer associations and people affected by dementia.  

For more information please read the related article in AE magazine (Newsletter/ 2020)