Rebecca Wellner: Advocating for Dementia Care and Connection
By Evaheld
Rebecca Wellner is a New York City based speech pathologist and well known dementia care advocate, and has had a long career in various health roles, such as in a neurocognitive lab, where she was able to examine cognitive changes in breast cancer survivors, to actively advocating for better dementia care, and empowering people through free resources and online education courses, such as Dementia: Leading with Understanding to Facilitate Connection and Communication.
Watch this video to learn why Rebecca recommends Evaheld
Rebecca's ultimate dream is to build inclusive, dynamic cafe spaces for caregivers and for people who are living with neurocognitive changes, explaining that “Our goal is to bring community members together while encouraging care partners to share their unique stories,” and you can visit A Sweeter Course to learn more about her vision and read real stories about those living with dementia and their loved ones and carer. And for great resources, tips and to ask questions, be sure to follow Rebecca on her instagram page A Sweeter Course, where she generously shares really useful resources every day.
Wellner’s style of Dementia Advocacy and Motivation
Being extremely close to her grandparents, this is what shaped her views and interests. Unfortunately, Wellner’s paternal grandmother’s husband died from ALS before she was born. Her maternal great grandfather and great grandmother both died from complications related to Alzheimer’s disease. Wellner stated that she remembers early vivid memories of how this ‘shook’ her mum and her grandmother. Since then, two of her grandma’s siblings have also had Alzheimer’s disease. Beyond family history, in her job as a speech language pathologist, she has also encountered and formed close bonds with people living with dementia and their caregivers. Given her lifelong interests in family histories, neurodegenerative disease, memory and storytelling she had been on this path for a long time. In high school, Wellner would volunteer in an assisted living facility, where she loved hearing residents tell their stories over lunch. This motivated her to do whatever she could to work in an area related to dementia, memory, and storytelling. Speech pathology became a perfect fit. The reality of healthcare and the way older adults and their caregivers were treated is what pushed her to her limits and nudged her towards advocacy and education.
“When you work in healthcare in America, you don’t have to look very hard to see the impact of socioeconomic disparities, racism, and a general sense of profit over people.”
- Rebecca Wellner
And this was of course particularly evident in a skilled nursing facility during 2020 when the pandemic began. The realities broke her heart and the patients lost were always on her mind. Feeling completely helpless, she could only sympathise with not only her patients, but their families as well. She also sympathised with her coworkers, especially the certified nursing assistant who were responsible for way too many patients at a time and who were given minimal training in dementia care. As she shifted into a new job and encountered more healthcare professionals and family caregivers who were under-informed about dementia, she realised that she needed to do more. In her advocacy, she tried to center the voices of care partners while also sharing information that is both research based and consistent with her own clinical experience. She would try to encourage others to take an empathetic approach by understanding not only the brain changes that occur in dementia, but also who the person living with dementia is.
‘A Sweeter Course’ and Rebecca
When Wellner was a child, she wanted to open a bakery that offered baking classes to people living with dementia and their caregivers. As she grew older she realised that there was a lot more potential to it. She began A Sweeter Course in 2017 as a blog. The goal originally was to encourage caregivers to share their stories and to connect through food, especially family recipes. In 2021 and 2022, the project shifted into selling baked goods to raise funds to go directly toward caregivers, who were hit extra hard as a result of the pandemic. The ultimate goal was/is to build a dementia cafe into Wellner’s community. Alongside the opening of the cafe, she had hopes to employ people living with dementia with the cafe serving as a safe place for caregivers and their loved ones. It would provide an opportunity for people living in the community to understand dementia. At the moment, Wellner is selling baked goods in her spare time in order to raise funds to pay caregivers to share their stories. She is currently working on the development of a non-profit in order to make the dementia cafe a reality. In the meantime, Wellner provides education via social media and occasional speaking engagements to uplift the voices of caregivers and people living with dementia.
“I am never more inspired than when I speak to a caregiver and their person living with dementia about their stories.”
- Rebecca Wellner
Challenges and Greatest Learnings
Wellner states that throughout her journey, being able to hold multiple perspectives at once allows her to understand different perspectives and the way different people are. She would list the example of the perspective of the caregiver, person living with dementia, and the professional caregiver who is getting to know them both to demonstrate holding multiple perspectives. Another challenge and learning she had uncovered through her journey she stated was patience. Working in this area can test that, but remaining composed with patience is especially key.
The significance of Dementia Advocacy and Care
“With the population aging and numbers of people living with dementia (both diagnosed and undiagnosed) rising, this is something that touches everyone's lives, whether or not they realize it. It is so important that we as humans learn how to better understand and support each other. Our understanding in a hard moment can make or break someone’s day. The way society treats people living with dementia and the way we treat caregivers in general is not only unacceptable, but also untenable– This already impacts so many people and it is only going to impact more.”
Problems That People Face in Their Dementia Journey
Wellner states that people living with dementia live in a world that wants to shut them out. This includes a world that lacks engagement with individuals with Dementia and a world that does not give them a chance. They are dehumanised and all they offer is frequently ignored. She also states that healthcare providers don’t seem to know about dementia or how to help them.
Problems That Carers Face, and Navigating them Through it
In her journey and hearing stories from caregivers, a large issue is caregivers telling their experiences with doctors, friends, and family members not believing their lived experiences. Additionally they face inequities as a result of barriers in access to care, particularly in historically underserved demographics. They also face a lack of cultural sensitivity and a general dearth of knowledge from healthcare professionals. They struggle financially and lose work, friends, and community during the caregiving journey. She also states that they are too often given their loved one’s diagnosis and sent on their way.
In experiencing and hearing these problems, Wellner states that she aims to put these carers in touch with a social worker who can help navigate access to different programs. She also would try to connect them with support groups and different avenues for communicating with other caregivers. They practice advocacy and self-advocacy for appointments with healthcare providers. Wellner states that she provides a lot of validation: “the truth is, the system we have for this is terrible and I can’t pretend otherwise. I also help caregivers problem solve when issues related to communication and swallowing arise and make referrals to other healthcare providers as needed.”
Wellner’s Insights From Her Dementia Advocacy and Care Journey
Rebecca shares that stepping into anyone’s reality and meeting them where they are can be difficult but simultaneously is an amazing way to connect and shift a hard moment into a moment of connection, something positive. Another insight is that understanding that behaviours in dementia have meaning and are a form of communication allow us to find ways to accommodate for difficulties and uplift strengths rather than placing blame on the person. She also has experienced that sometimes things may not go smoothly or go well and is okay to take a step back and reset.
She also has experienced that shared experiences and interests can develop relationships as during one of her rapport-building sessions with a non-verbal Dementia patient, she was able to communicate and connect with the patient through music.
Wellner’s perspective on Dementia in the future
She believes that it is all dependent on where in the world you are and whether those in charge of policy-making choose to center care as a priority. She is hopeful for a future where more people are better informed on dementia including healthcare providers having an increase in knowledge.
Evaheld’s Partnership with Rebecca Wellner
Evaheld is an online legacy and care planning platform, which makes it easy and enjoyable to future-proof your voice for better wellbeing outcomes, preserving your legacy for loved ones and future generations.
Evaheld is very passionate about Dementia advocacy and care, and we are proud to partner and collaborate with Dementia champions like Rebecca Wellner, as we believe in Rebecca’s vision and her tireless advocacy and work to create A Sweeter Course for those with dementia, their care givers and their loved ones.
Rebecca’s Three Messages to the World
- “Talking about aging, death, and dying can support us as we live.”
- “It is not easy to hold joy and laughter along with grief and anger, but it is possible.”
- “Listening to stories and sharing our own is how we meet people where they are and it is how we begin to foster understanding and create change.”
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