Walking the Talk for Dementia occurs every summer in Santiago de Compostela, Spain to create a shared vision of dementia-friendly communities and global strategies for the best aging possible. Attendees include people living with dementia, care partners, healthcare providers, researchers, and leaders in community-based organizations and support service agencies. As part of Walking the Talk for Dementia, participants trek the Camino de Santiago, a pilgrimage of enlightenment taken by millions across the world for centuries, followed by two days of presentations. I received a sought-after invitation to attend and speak at Walking the Talk for Dementia this year, and it was magical. I enjoyed sharing ideas and experiences with more than 95 registrants from 25 countries. The actual walk stretched my physical limits, but the conversations extended my scientific vision. In this blog post, I share reflections from my Walking the Talk for Dementia experience.
I began by thinking about the basics of medical care and community support. During Walking the Talk for Dementia, I listened to neurologists speak about working tirelessly to take care of patients. They felt unsure about what happened to people between their doctor’s visits and how those things affected their brain health. Community leaders discussed limited resources in neighborhoods that support older adults, especially those living with dementia. One attendee, a daughter who was a care partner for her father living with dementia, made clear that family members oftentimes fill in the gaps. One goal of Walking the Talk for Dementia is to build a world that truly includes and respects the independence and choices of people living with dementia. I firmly believe that these rights belong to all older adults. Many older adults rely on care partners, family, friends, community organizations and groups, and healthcare providers for support. As they say, it takes a village. However, these sources of assistance are often scattered and hard to access. I worry that older adults and care partners are too often left to figure things out on their own. We need a global effort to support brain health for everyone. This means making healthcare easier to access, providing ongoing resources, and making sure older adults feel seen, heard, and welcome in their communities. Care partners should be recognized as important members of a support team. They give so much to older adults in their lives, and they are aging too. Their health matters, and they should not be ignored because of their caregiving role. The implementation of these practices may create a world where healthy aging is available to all.
Researchers who study aging and dementia also play an important role in helping older adults, people living with dementia, and their care partners. As a researcher myself, I was in awe of the hard work of those at Walking the Talk for Dementia. Their efforts have led to critical advances such as new diagnostic tools and treatments. Their research has helped to develop programs that use exercise, social activities, mental challenges, and heart-healthy routines to reduce dementia risk. To keep making progress, researchers need people to volunteer for their studies. Yet, it is oftentimes difficult to recruit the necessary number of people to participate. Researchers at Walking the Talk for Dementia shared new and creative ways that they engage with their local communities. For example, one presenter inspired me with her puppet shows and cartoons to teach children about their brains and encourage healthy habits early in life. Another one took results from their work and turned them into educational materials to build the skills of care partners and healthcare and service providers. These researchers communicated and built trust with people in their areas, and helped people feel comfortable with research. Walking the Talk for Dementia showed me that researchers from different fields can work together to spread the word about why research matters, how it supports brain health and lowers dementia risk, and affects healthcare practices and policies at all levels. They do this through presentations in nearby public locations, social media posts, and writing about science in creative ways so that everyone can understand. When researchers share their work openly, they help shape the story of science and push progress forward. They may even encourage more people to get involved in research. Researchers can create a world where taking part in science is a familiar and trusted activity and that our work benefits us all.
My presentation at Walking the Talk for Dementia focused on who gets included in dementia research. I dedicate my work to making sure that everyone has the opportunity to volunteer for research studies if they choose. At Walking the Talk for Dementia, I was surrounded by like-minded people. We all expressed deep concern about the rising rates of dementia in the Global South, in areas such as Latin America, South and Southeast Asia, and Sub-Saharan Africa. A fellow attendee shared his concerns about the lack of research opportunities and critical healthcare in these areas. Over lunch, I talked to other attendees about why dementia care and research can be harder in these regions. What stood out to me the most was stigma and how dementia can be taboo or perceived as related to witchcraft or punishment for a previous misdeed. Stigma makes it harder to talk openly about dementia. It limits the words people use to share their experiences, and it can also get in the way of people receiving the care and resources that they need. As such, people living with dementia can feel invisible, isolated, or in danger. A possible way forward involves more events like Walking the Talk for Dementia that take place in the Global South. Activities would include people living with dementia, care partners, healthcare and service providers, and researchers from these regions – all with the support of local government officials. Public-serving organizations that operate in the Global South can continue to champion these efforts. Thus, Global South residents will lead their regions to create long-lasting and supportive environments for people living with dementia. Perhaps this is a powerful lesson for us in Orange County – to use the resources around us and the people who support us, including researchers and providers at UCI, to lead even healthier lives as we age.
My best memory of Walking the Talk for Dementia is people living with dementia sharing how they remain active through advocacy work, raising awareness and providing information about aging and dementia in their communities, spending time with family, and taking part in hobbies such as dancing. In short, they continued to live their lives, and this is the greatest lesson of all.
