Involving members of the public to improve Alzheimer's research and remove stigma
Sarah Campill, Public Involvement Officer at Alzheimer Europe, discusses her contribution to PREDICTOM and the importance of involving members of the public in Alzheimer's research. ‘It is about giving back power. The more we talk about Alzheimer’s disease, the less scary it gets.’
My focus has always been working with people with dementia. Prior to Alzheimer Europe, I managed dementia care units and worked in different care homes. I gained hands-on experience working directly with people with dementia and learned a lot about the impact of Alzheimer’s disease (AD) on people, their daily lives and their relatives. At Alzheimer Europe I can use these experiences to give people with dementia a voice in research and policy, with the ultimate goal to improve their lives.
Alzheimer Europe is the umbrella organization of 41 national Alzheimer’s organisation from 36 European countries. We have a lot of knowledge and experience in working with people with AD and affected by dementia from all over Europe. We use that knowledge to make sure the views of people affected by AD are embedded in the results that projects such as PREDICTOM produce.
Sarah Campill
This is our goal for PREDICTOM as well - to make sure the views and concerns of people affected by AD are included in the project. These groups include people with AD, their carers, supporters, relatives, and everyone else with a general interest in the topic. By involving members of the public as well, we make sure that the platform developed in PREDICTOM is ethical and that everyone’s dignity is protected.
Involving members of the public in PREDICTOM
To bring in the public perspective in PREDICTOM, we have set up the Public Involvement Pool and the Public Ambassadors Group and we support the national Public Involvement working groups (e.g. WiseAge or Consejo de Oro). These consist of members from the general public who provide feedback on research design, materials and output developed in PREDICTOM. These people have keen interest in PREDICTOM and are heavily involved in the project. They attend expert meetings and make sure to highlight the various experiences of AD which are highly relevant and important to PREDICTOM's work.
Public Ambassador Group PREDICTOM
A testament to the significance of involving these perspectives are the participant consent forms used in PREDICTOM's clinical trial. The style and language used in them were considerably improved with the involvement of members of the public. PREDICTOM's clinical trial participants form a mixed group and as such present varying levels of backgrounds and linguistic capabilities. Since the forms must be understandable to everyone, members of the public helped to ensure that this is the case.
Another example concerns the fact that PREDICTOM's screening platform will exist only digitally. There are many people who don’t have access to technology and/or are not experienced using it. The members of the groups provide valuable insights into what could become a stumbling block to the study participants and what features make the platform easier to use.
A big challenge is to make sure everyone is heard. Many people have to fight to be seen. It can hurt to be unseen, so we try to create a space that is safe and involves everyone. Often, people who are unable to express themselves, can have the most insightful remarks. That is why Public Involvement is such an important role to play in PREDICTOM.
Reshaping the image of Alzheimer’s disease
PREDICTOM's ambition is to relieve pressure on the healthcare system by bringing diagnosis of AD to the primary care and directly into people's homes. Also, PREDICTOM will hopefully contribute to the development of more treatment plans for AD in the future.
Apart from saving costs, enabling AD diagnosis from the comfort of people's homes will make it easier to talk about AD. This is crucial because it helps to remove the stigma associated with the condition. Currently, a diagnosis of Alzheimer's disease can feel like you are stuck with no options and people are scared to receive it. They don't need to be because even with Alzheimer’s, you can still live a beautiful and rewarding life.
If you want to read more about the value of involving patients and members of the public in dementia research, check this article.
Watch the video below with Chris Roberts to learn more about life with dementia.
