Advocates with lived experience equally need capacity building

Lived experience advocacy is about individuals using their expertise gained from having a specific life experience to advocate for change in structural systems and policies, cultural attitudes, social and economic discrimination against them. Their lived experience has to go beyond testimonies to awareness campaigns.

Lived experience advocacy groups and advocates play a critical role in designing, implementing, and evaluating policies, programs and social initiatives that impact them. Through their involvement, a more equitable society can be formed and context-specific solutions can be formulated.

While being an advocate can be rewarding, giving the individual a sense of purpose and empowerment, it also carries with it some personal risks, particularly when it comes to stigmatised conditions like dementia and minority communities like the LGBTQ+ community living with dementia. Putting yourself in the spotlight, revealing your identity, opening up your most vulnerable moments in the public, and expressing your views can be challenging and stressful, even more for new and emerging advocates.

Quite often than not, people with lived experience are hardly prepared to take on the role of advocates. When I first started taking interviews in 2020, my biggest concern was the disclosure boundary between privacy and making public. Sometimes, advocates can be too generous and detailed in their disclosure and miss the gist of their sharing. There is a lack of awareness and focus on self-care for advocates, leading to ineffectiveness, burnout, frustration and losing the meaning and value of advocacy.

Advocates know how to practice self-care in their advocacy role.

I was fortunate enough to have leading advocates from Dementia Alliance International Global , i.e. Kate Swaffer, Christine Thelker, Bobby Redman, and Helga Rogra, to listen and learn from their advocacy experiences.

Yet, how many advocates with lived experience receive training to become an effective dementia advocate?

Civil society organisations (CSOs) should expand their advocacy capacity-building interventions to include advocates with lived experience. When advocates are provided with capacity-building support, their potential capacity as advocates is enhanced (as no one is born to be a prepared advocate), leading to more effective advocacy and better success outcomes. Every advocate must be well informed about the latest developments in the field of dementia, and those involved in human rights need to know how to use human rights, CRPD and the Mental Capacity Act to advocate on the socio-legal issues in their communities.

What is advocacy capacity-building comprised of? Here is a good illustration from The Ethel and James Flinn Foundation. Advocates need to develop the skills to optimise their lived narratives to influence change through storytelling, need coaching from more experienced senior advocates on how to craft advocacy message to articulate concerns more effectively, have facts and data to strengthen their advocacy message, involved in identifying policy barriers and solutions, and be supported with funding and resources in self-initiated community projects.

Advocates with lived experience of dementia are making impactful and distinctive contributions to research, policy development (in some countries), building of a dementia-inclusive society. However, there have not been focused opportunities to bring emerging and leading advocates together for knowledge sharing and learning from their experiences. Networking provides a good source of development and capacity-building for advocates and nourishes the spirit of advocacy.

The Overseas Peer Exchange (OPE) program is an idea that I borrowed from the #Ibasho practice and conceptualised further after I spoke with Emi Kiyota , the founder of Ibasho. Peer-to-peer support is a valuable asset, but we hardly see it from an advocacy perspective. It is an underutilised asset of lived experience advocacy that can be used for capacity building for advocates. The OPE program aims to provide learning opportunities for advocates with lived experience to share their lived experiences and advocacy work with their peers from different communities and settings. ?These peer-to-peer cross-countries learning exchanges are designed to foster a global network of experts with lived experience, facilitate cross-cultural friendships and enhance self-efficacy as advocates.

The first Overseas Peer Exchange program will be held in Taiwan and hosted by Taiwan Alzheimer's Disease Association (TADA) in collaboration with the Taiwan Dementia Advisory Committee. The event will involve advocates with lived experience from three countries in the Asia-Pacific Region: the host country (Taiwan), Japan and Singapore. Below is the visit itinerary 2025:

As the person behind the idea of OPE, I am honoured and proud to see the efforts being put in by TADA and the Taiwan Dementia Advisory Committee. Being a pioneer of any new initiative is always more challenging, yet they have the itinerary done months ahead of the October visit. Is that an amazing feat, itself?

Since this is the first peer exchange event, we have decided to keep it simple and organic. Do stay tuned to hear more about the OPE in October.