by Marianne Sciucco
What do you know about Alzheimer’s? Anything? What should you know about Alzheimer’s? A lot.
This is not just our parents’ and grandparents’ disease. It’s a problem that has far-reaching complications, not only wreaking havoc in the life of the one afflicted but in the lives of all those surrounding him or her: spouse, children, grandchildren, siblings, friends, caregivers, and the greater community. Its impact is exponential: For each one of the 5.4 million Americans diagnosed with Alzheimer’s, there are another 5.4 million (at the very least!) affected (see Alz.org). These people are our families, neighbors, co-workers, friends, and acquaintances. As our lives intersect and intertwine, this disease affects all of us.
June is Alzheimer’s and Brain Awareness Month. Take some time to learn more about this illness, to understand what it means to those who love someone afflicted, to those who dedicate themselves to see that they are cared for and ensure that their lives continue to have meaning and dignity.
There are many ways to become educated about a condition or disease. With Alzheimer’s, there are hundreds of books and blogs available to explain it, advise what to do about it, how to handle it, and offer solutions and support for caregivers.
Many of them are written by experts in the field – scientists, physicians, psychologists, etc. – which offer practical, useful information but may lack insight into the emotional toll of the disease and leave important questions unanswered.
What may be more helpful and meaningful are the memoirs and blogs written by caregivers and sometimes – but not often enough – the individual affected, and works by authors who prefer to share their experiences through the lens of fiction.
While expert contributions have their place, stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this disease. This presentation brings the reader inside the heads of the Alzheimer’s person, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed.
Many of these stories are spotlighted in AlzAuthors. Please visit each author’s page. There is much to be gained by taking a peek at what we’ve put together. We are all experts on our own experiences, and share a wealth of information.
Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness, and strips one of the power to make competent decisions and take advantage of necessary supports and resources.
Knowledge gained from those who have walked the walk can be as practical and useful as any expert’s self-help or how-to manual.
One Response
Excellent post, Marianne! We caregivers have earned a place at the table in the public conversation about this devastating disease, an authentic voice that truly can help others traveling down the same road.