As a person living with dementia or a care partner of one, feelings of frustration are not uncommon, especially when navigating spaces and systems that are not designed to meet your needs. In times like this, have you ever felt like something has to be said and done so that you, and others like you in the community, do not have to feel this way again? Have you ever wanted to take the lead in making these changes? If you have, you may want to consider becoming a dementia self-advocate.
Self-advocates have been essential in bringing about positive change, especially in the disability movement1. In fact, policies, research studies and various other dementia-related initiatives have benefitted from the involvement of persons living with dementia and their care partners in the development phase. 2
Read on to find out what advocacy is, why it is important, and how you can become one.
What Does Advocacy Mean?
Advocacy is about having a voice. It is about speaking up on what you believe in to achieve personal and collective change. Unsurprisingly, advocacy and empowerment go hand in hand, in that advocates are empowered to influence matters that affect them and take charge of their lives.
In the context of dementia, advocacy can involve the sharing of stories, raising awareness about the issues faced as a person living with dementia or a care partner, and creating a positive change for the dementia community on a larger scale. Persons living with dementia and care partners involved in such advocacy efforts are often referred to as self-advocates.
Being a dementia self-advocate is no easy feat. It takes a lot of courage and strength to speak up for yourself especially as a person living with dementia, where the common misconception is that persons living with the condition may not be able to think or decide for themselves. However, with the support of an already existing network of advocates and programmes aimed at empowering persons living with dementia to lead purposeful lives, anyone can become a self-advocate. The work put into becoming one will also be worthwhile as you will be better equipped to represent your community, as well as enable and empower others around you to build a dementia-inclusive society.
Why Should Persons Living with Dementia and Their Caregivers be Involved in Self-advocacy Efforts?
Research has shown that dementia advocacy offers potential improvements in well-being for those involved, through the activity itself and via extension of the advocate’s social networks.3 While these benefits are notable, it is also important to recognise that:
- Persons living with dementia and their caregivers have a right to be involved in decisions that impact their lives.
- Persons living with dementia bring with them lived experiences, knowledge and skills that may not be obtainable from organisational stakeholders. Furthermore, dementia manifests itself differently in every person living with dementia. This means that more voices are needed to ensure diverse and accurate representation of dementia in the community.
What Does Advocacy Look Like in Singapore?
As Singapore works towards the goal of dementia-inclusivity, significant effort has been put into raising public awareness about dementia and making the necessary amendments to services, policies and physical spaces to better meet the needs of persons living with dementia and their care partners. This opens up more space for dementia advocacy, which allows advocates to act as story tellers, co-facilitators, co-creators and active contributors to the conversation surrounding dementia.
Advocacy efforts come in all shapes and sizes. Self-advocates can be involved in as much or as little as they would like in a wide range of activities, including:
- Research opportunities
Involvement in research may include providing advice on research priorities and methodologies, speaking with various stakeholders, being a research participant or working as a research partner on the project.
- Participating as a representative on advisory boards or committees
Advocates can choose to do this on a local and/or global scale.
Providing input and having a say on issues related to the dementia cause
Emily Ong is a member on the Alzheimer’s Disease International (A.D.I.) Board of Directors for the position of person with dementia. She also serves in the Global Review Panel of the A.D.I.
Accreditation Team and is a focus group member of the WHO Global Dementia Observatory Knowledge Exchange.
In this blogpost, she shares her journey as a dementia advocate, and how she has stepped up her advocacy efforts at the regional and global levels.
- Sharing their stories on various platforms
Storytelling is a powerful way to connect with and inspire one another, which explains why it is an effective tool in advocacy. Advocates may choose to share their stories in various ways such as on their personal social media platforms and in media interviews.
Sharing personal experiences and inspiring others on various platforms
As the primary caregiver to Rodney, her husband living with dementia, Jacinta’s caregiving journey has been filled with ups and downs. But through it all, she continues to do her best to support him in all that he does and empowers him to live his life meaningfully. Theirs is a story of love, courage, and perseverance.
In this blogpost, Jacinta sheds light on Rodney’s diagnosis, their shared challenges, and the steps they take together to overcome them.
- Providing feedback on various initiatives, policies and dementia care innovations
The involvement of advocates, especially from the planning stage, is effective in identifying service gaps as well as examining existing policies, services and solutions to ensure that they are meeting the basic and evolving needs of the dementia community.
SBS Transit & “Find Your Way” Initiative
A collaborative effort between SBS Transit and Dementia Singapore, “Find Your Way” aims to help persons with dementia navigate bus interchanges and MRT stations with ease. This wayfinding initiative was inspired by past research studies, which have found reminiscence to be effective in stimulating parts of the brain that deal with long-term memory and cognition.
Dementia self-advocates Anjang Rosli and Emily Ong served as advisors to this initiative.
- Public education
As more focus has been placed on increasing public knowledge and awareness about dementia, many learning institutions and workplaces have actively sought out experts in the field of dementia to educate students and staff on the topic. Coupled with facts and information, advocates also share their lived experiences and call-to-action with those present.
The Many Voices of Dementia
Source: Alzheimer’s Society
The Many of Voices of Dementia Advocacy is a short film with seven people living with dementia in different countries, talking about their experiences of self-advocating, their motivation, and top tips. It was produced by Alzheimer’s Society, 3 Nations Dementia Working Group (3NDWG) and Dementia Alliance International (D.A.I.) as part of a project exploring dementia self-advocacy and inclusion.
Want to Become a Dementia Self-advocate?
Voices for Hope is an empowerment programme aimed at empowering persons living with dementia and their care partners to embark on their self-advocacy journey. Piloted in 2019, it is a 10-week programme that equips participants with relevant skills and fosters confidence in them to actively share their stories, their needs and views publicly. The goal of Voices for Hope is to change societal attitudes, reduce the stigma of dementia and improve the landscape of how persons living with dementia are perceived and supported.
Voices for Hope is best suited for persons who are diagnosed with mild-stage dementia, fairly proficient in communication and articulation, and with stable care arrangements.
- Dementia Alliance International Global Report (2021), Link: https://dementiaallianceinternational.org/assets/documents/DAI-Global-Report-2021_Valuing-the-advocacy-of-people-with-dementia-moving-dementia-out-of-the-shadows.pdf
- Jason Weetch, Siobhan O’Dwyer & Linda Clare (2021) The involvement of people with dementia in advocacy: a systematic narrative review, Aging & Mental Health, 25:9, 1595-1604, DOI: 10.1080/13607863.2020.1783512