Guest post by Peter V. Rabins, M.D., M.P.H.
Alzheimer’s Action Day—September 21, 2013—is a good time to reflect on how the perception of Alzheimer disease has changed over my 35 year career. In the late 1970s and early 1980s, most health professions and the vast majority of the public had never heard of the illness. Today, it would be difficult to find any adult who had not heard of it, and most people know someone who has or had the illness. This change came about through a broad education effort to inform people that the condition once referred to as “senility” was, in fact, a group of illnesses referred to as dementia, and that the most common cause of dementia is Alzheimer disease.
Preliminary research demonstrating the significant public health burden caused by Alzheimer disease was crucial in mobilizing funding for additional research, supporting demands that care providers be better educated about how to care for people with dementia, prompting innovative thinkers to develop new and more effective models of care, and encouraging the development of supportive services for family caregivers.
All this has been positive, in my opinion. I worry, though, that in our efforts to improve care and expand knowledge, we sometimes lose sight of the person who has the illness. I believe we need to “re-humanize” Alzheimer disease. By this I simply mean that we need to make sure that the life of the person with the illness must remain a central concern as we seek to improve care, support caregivers, encourage research, and seek prevention.
For ideas and advice for Alzheimer’s and dementia patient caregivers, visit The Peter Rabins Alzheimer’s Family Support Center.
Peter V. Rabins, M.D., M.P.H., is the Richman Family Professor of Alzheimer Disease and Related Disorders in the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine. He is coauthor of the bestselling The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss, hailed as “both a guide and a legend” and now available as an audio book.