Early Onset Alzheimer’s Disease
Last night I finished reading the book "Still Alice" by Lisa Genova. After reading this book I feel the overwhelming urge to tell everyone I know about how powerful it is. The story was about a woman, Alice, who was a 51 year old Harvard Professor, when she was diagnosed with early onset Alzheimer's disease (EOAD).
The story takes you through her shattering experiences in loss, fear, loneliness, helplessness and hopelessness. It shares her and her family's courage to fight for every memory her mind held and the dignity she deserved. Although a fictional story, it was so heartbreakingly real that I feel I have a new insight into how people with Alzheimer's disease feel. EOAD is the frightening reality of an estimated 500,000 people who are diagnosed in the United States.
According to the Alzheimer's Association early onset Alzheimer's disease affects people in their 40s and 50s. Like Alice in the book, EOAD affects people who are under the age of 65, with young families and jobs. This link www.alz.org/national/documents/brochure_earlyonset.pdf is a great resource to help people with EOAD and their families.
As leaders in long term care, we must educate ourselves and our staff on EOAD. The book "Still Alice" offers us an educational opportunity to learn more about this progressive and degenerative disease, while also developing empathy for the person who is living with it. As individualized as we all are, so is the experience of being diagnosed with Alzheimer's disease at any age.
People who have EOAD and their families are in need of long term care, home care, assisted living, education, support groups, and adult day care. Because these are services that are primarily used for elders, how does that make the person with EOAD and their family feel? Once we understand the needs of families struggling with EOAD, how can we help?