#TBT: Alzheimer’s & Access to Health Information

As part of our “Throwback Thursday” blog series, we’re taking a look at a research topic that’s currently in the news and tagging it with previous research, videos or commentaries in a relevant way. As the saying goes, “what’s old is new again” – and we hope you enjoy our wonky twist on #TBT.

Last week a study published in the peer-reviewed journal Neurology revealed that Alzheimer’s disease is responsible for more deaths than reported on death certificates in the United States. The number calculated in the study is about six times higher than government totals, which would place Alzheimer's just behind heart disease and cancer in leading causes of death, ranking it three spots higher than the Centers for Disease Control and Prevention currently reports.

Alzheimer’s—the most common type of dementia—is a disease for which there is currently no cure, although “drug and non-drug treatments may help with both cognitive and behavioral symptoms,” according to the Alzheimer’s Association. 

Finding information about the best treatment options, and the evidence to support those treatment decisions, are among the many challenges facing people with Alzheimer’s and their caregivers.

Those are challenges that haven’t changed since 2012, when NPC spoke with Dr. Stephen Hume, an Alzheimer's patient representative, and his care partner, Candace Darcy, about their experiences with seeking health information. As more and more information is communicated to patients, practitioners and payers, current regulatory policy may create asymmetries, or inequalities, in the ability of different stakeholders to convey information. That can make it difficult for people like Dr. Hume and Ms. Darcy to easily find the most relevant information about available treatment options.

As a medical professional, Dr. Hume explained in a previous interview that his go-to sources for information include peer-reviewed journals and the Internet, and that having medical research available enables him to take more responsibility for his own care. Above all, Ms. Darcy noted that what’s most important is finding out which treatment can improve Dr. Hume’s quality of life without causing adverse side effects.