The voices of people with Alzheimer’s have been silenced for far too long. Despite its prevalence, people with Alzheimer’s face pervasive stigma and unmet needs. The stigma can cause reluctance among people experiencing early signs of Alzheimer’s to seek a diagnosis. Among friends and family, individuals with Alzheimer’s are often treated and seen as less than they were before. As the home caregiver for my wife of 53 years she and I have experienced over four years of this stigma and unmet needs. Decision-makers must listen to the perspectives of those living with Alzheimer’s and care partners to overcome obstacles like these and others. As a champion with the advocacy organization Voices of Alzheimer’s, I am proud to have helped draft a Bill of Rights for People Living with Alzheimer’s. People with Alzheimer’s have the right to: 1) Dignity and Respect 2) Freedom from Discrimination 3) Prompt Diagnosis and Treatment 4) Annual Cognitive Screenings 5) Affordable Medicare and Private Payer Coverage 6) Equal Access for Younger Onset Alzheimer’s 7) Participation in Clinical Trials 8) Complete Information About Our Conditions and Shared Decision-Making 9) Continuity in Alzheimer’s and Non-Alzheimer’s Care 10) Quality Care in All Medical Settings We cannot afford to wait any longer. It is more important than ever that decision-makers hear the voices of people living with Alzheimer’s because they are being dismissed by the current systems in place. Find out more about Alzheimer’s yourself and become an advocate.
- Robert E. Toia, Jr., Centerville