Let’s Think About Life with Dementia #5 Bringing Voices of People with Lived Experience to Health Care

 In Japan, initiatives are spreading across the country to bring people living with dementia together, aiming to build an enabling society for them to keep enjoying their lives with hope and dignity. For example, at the Japan Dementia Working Group, people living with dementia play a core role in disseminating information, sharing their own experiences, as well as making recommendations.

 Similar activities and advocacy efforts, led by people living with dementia and their families, have been growing across the world including Scotland, Singapore, and Australia.

 Let me share one example from the US, Voices of Alzheimer’s (VoA), an organization led by people living with Alzheimer’s and related dementias as well as their loved ones. I recently had an opportunity to speak with a representative of the organization.

■  Incorporating voices of people with lived experience in drug development and more

 Voices of Alzheimer’s is an advocacy organization for dementia, promoting early detection and drug development. Jim, current CEO of the organization, has dedicated himself to its activities together with his wife Geri, who was diagnosed with mild cognitive impairment (MCI) in 2012 at age 69. Having decided to live with passion rather than hiding, she worked with Jim to give numerous lectures and participate in other activities. Although Geri passed away in August 2024, 12 years after the diagnosis, she seemed to be able to keep engaging in activities in her own way until the very end, at least partially thanks to early diagnosis.

 In the US, the Food and Drug Administration (FDA) reviews the safety and efficacy of new drugs. For years, drugs have been evaluated mainly by experts and government administration. But now, there is a growing trend to focus on the experience of people who actually live with the condition.

 For example, people have started asking, “Test results have gotten better, but has the person’s life really improved?”

 This question can be answered only by people living with the condition every single day, sometimes with the support of their families. These voices are increasingly having an impact on health care. Along with this trend, Jim has also been working to share the perspectives of people living with dementia and their families in approval processes for new drugs and medical devices. One example is his involvement in the FDA Advisory Committee.

 ■  Clinical trials: hurdle to overcome and role of people living with dementia

 Clinical trials are essential in developing new treatments for dementia, but one of the current challenges is recruiting participants. It is particularly difficult to find people in the early stage of dementia, which has been cited as one of the factors hindering research progress. Clinical trials, having risks such as unknown side effects, are not something that can be recommended to everyone. It is therefore up to individuals whether or not to participate, based on their careful consideration according to their circumstances and values.

 Recognizing this situation, VoA sometimes discusses in its activities that participation in clinical trials can be viewed as contribution to the future. The idea is to leave data not just for themselves but for people who will face the same condition in the future. Spreading this idea and its significance to society, by people living with dementia themselves, can have a powerful impact in shaping research and health care.

 ■  From “being supported” to “being a co-creator”

 In Japan, work on dementia has focused on enhancing care, such as support in daily living and mutual help in the community, aiming to ensure people can live safely and comfortably even after being diagnosed. We should be proud of our work as one of the leading practices in the world. But what if we add another perspective shown by VoA and others, “involvement of people living with dementia also in health care and research”? What will we be able to see then?

 Going beyond just receiving drugs and treatments, people living with dementia can also work together with professionals and others to explore and create the ideal health care.

 Though often seen as someone “to be supported,” they are active players in shaping society and health care. Such involvement of people living with dementia and their families can become one of the key themes also in Japan.

                                                                                Jim and Geri

Taeko Nakashima

Faculty of Health Management　Department of Social Health and Business Management

Nihon Fukushi University

https://www.nfu.ne.jp/ (in Japanese)