Empowering Voices: How Advocacy is Changing the Landscape of Dementia and Alzheimer’s Care
Submitted by Mary Anne Roberto,
The Co-founder of
Always Home Connected
Transforming How We Approach Care, Research, And Policy For These Conditions.
Dementia and Alzheimer’s disease affect millions of people worldwide, reshaping the lives of individuals, families, and communities. Advocacy efforts, driven by passionate individuals and organizations, are transforming how we approach care, research, and policy for these conditions. From local communities to national stages, advocates are raising their voices to ensure that those affected receive the support, recognition, and resources they deserve.
In this blog, we’ll explore the power of advocacy, share inspiring stories, and highlight key resources for those looking to make a difference.
The Power of Personal Stories
Advocacy often starts with personal experiences, where individuals who have witnessed the challenges of dementia or Alzheimer’s in their loved ones take action. These stories not only raise awareness but also provide hope and inspiration to others.
One such advocate is Greg O’Brien, a journalist diagnosed with early-onset Alzheimer’s who decided to chronicle his journey in his book On Pluto: Inside the Mind of Alzheimer’s. O’Brien’s openness about his diagnosis has sparked conversations about living with Alzheimer’s, emphasizing the need for increased awareness and support. His story continues to serve as a beacon of hope for those in the early stages of the disease.
Community Advocacy: A Lifeline of Support
Local advocacy groups and communities play a critical role in supporting dementia and Alzheimer’s patients. Through fundraising, awareness campaigns, and volunteer-driven initiatives, communities are coming together to provide care and resources.
Organizations like the Alzheimer’s Association offer a wide range of resources for those affected. Their Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support, and research. These walks, held nationwide, bring together families, caregivers, and advocates, fostering a sense of solidarity and shared purpose.
Another example is Memory Cafes social gatherings designed specifically for those with dementia and their caregivers. These cafés provide a welcoming space for social interaction and support, reducing isolation and stress.
Legislative Advocacy: Changing Policy and Access to Care
Advocacy efforts have also reached the halls of government, where policies and laws can profoundly affect the lives of those with dementia and Alzheimer’s. The National Alzheimer’s Project Act (NAPA) is a landmark piece of legislation that aims to create a national plan to address Alzheimer’s disease, improve research, and enhance caregiver support. Since its enactment, advocates have worked tirelessly to ensure the plan is implemented and funded.
Organizations like UsAgainstAlzheimer’s and Patients Rising are at the forefront of legislative advocacy. Their Advocate Network](https://www.usagainstalzheimers.org/act/advocate) provides tools and resources for individuals to reach out to their elected officials and push for increased funding for research and better support systems for caregivers.
Caregiver Advocacy: Empowering the Backbone of Dementia Care
Caregivers are often the unsung heroes in the dementia and Alzheimer’s journey. Many advocacy groups are working to elevate the voices of caregivers, ensuring they receive the emotional, financial, and practical support they need.
Leeza Gibbons, a TV personality, launched the Leeza Gibbons Memory Foundation after caring for her mother, who battled Alzheimer’s disease. Her foundation provides resources for caregivers, including Leeza’s Care Connection, which offers in-person and online support, workshops, and guidance for families dealing with dementia.
The Future of Dementia and Alzheimer’s Advocacy
Advocacy is evolving, with new platforms and digital tools giving people more ways to engage and make a difference. Social media campaigns, such as #EndAlz, have brought Alzheimer’s awareness into the digital space, engaging younger generations and expanding the reach of advocacy efforts.
In addition to digital campaigns, there are increasing efforts to promote *early diagnosis* and *research* into preventive treatments. The Global Alzheimer’s Platform Foundation is spearheading initiatives to accelerate clinical trials and ensure that advancements in research reach those who need them most.
How You Can Get Involved
Advocacy is not just for those directly affected by dementia or Alzheimer’s; everyone can contribute to the cause. Here are some ways you can get involved:
Join a Walk to End Alzheimer’s: or volunteer to help organize one in your community.
Advocate for Policy Changes: Contact your elected officials through the Alzheimer’s Impact Movement and urge them to support dementia-related legislation. Support Caregivers: Offer practical help to caregivers in your community, or volunteer with organizations like Caregiver Action Network and Patients Rising.
Share Your Story: If you or a loved one is affected by dementia, sharing your experience can inspire others and raise awareness. Submit your story to platforms like Being Patient which focuses on news and support around Alzheimer’s and dementia.
Conclusion
Advocacy is shaping the future of dementia and Alzheimer’s care, pushing for change in communities, legislation, and research. Through the powerful voices of individuals, caregivers, and organizations, the landscape of support and treatment is evolving, bringing hope to millions.
By standing together and raising awareness, we can continue to drive progress toward a world without dementia and Alzheimer’s.
Resources:
- https://onpluto.org/
- https://www.alz.org/events
- https://www.patientsrising.org/
- https://leezascareconnection.org/
- https://alzimpact.org/
- https://www.caregiveraction.org/
- https://www.beingpatient.com/
Submitted by Mary Anne Roberto,
The Co-founder of Always Home Connected
About The Author
Mary Anne Roberto is dedicated to enhancing the lives of those experiencing cognitive changes. Her mission is to create awareness around dementia and to equip caregivers with the essential resources and tools they need to navigate the daily challenges of caregiving with confidence and compassion. As the Owner and CEO of Elder-Well® Adult Day Program in Santa Monica, California, Mary Anne is a highly regarded Dementia Care Specialist (C.D.S.), RCFE, CNA, and Certified Positive Approach To Care Consultant. She is also the co-founder of Always Home Connected, an online e-commerce service dedicated to offering resources and support for individuals with dementia and their caregivers.