Voices of Alzheimer’s, a nonprofit organization, recently created a bill of rights for people living with Alzheimer’s disease.
Jim Taylor, president and CEO of the organization, said his group will reexamine the document every year to make changes if necessary.
Some of the clauses in the 10-point bill of rights include the right to have prompt diagnosis and treatment, the right to be treated with dignity and respect, the right to annual cognitive screenings, and the right to affordable Medicare and other payer coverage to cover fees.
It’s not the first time that a bill of rights for Alzheimer’s disease was created. Taylor said the team found documents that were more than a decade old, which also included a bill of rights for people with dementia.
“Because of all the tremendous developments in screening for blood biomarkers and in disease modifying therapies, this is a totally new landscape,” he said in an interview with Being Patient.
In addition to rights for older adults with Alzheimer’s, one point on the list applies to younger people diagnosed with the disease or mild cognitive impairment. These adults may not have been included in the traditional population of people with Alzheimer’s disease.
“We really needed to issue a new document, one that we consider a living document,” Taylor added. “We’re not going to put it in the ground and leave it. We hope every year to reexamine it and to re-publicize it, but also to make the changes that are important, given the advances that have occurred and whether or not that makes us rethink some of the way that our verbiage is written.”
Over time, Taylor hopes that the bill of rights will make it into the hands of lawmakers so they can better understand what people with dementia and Alzheiemr’s deal with on a daily basis. Some of the challenges in Taylor’s experience include getting prompt access to care, being able to participate in clinical trials and being able to afford breakthrough treatments. His wife was first diagnosed with mild cognitive impairment and later Alzheimer’s disease.
