Recent attention to the early onset form of Alzheimer’s disease, not to be confused with early stage Alzheimer’s, is largely due to the success of Lisa Genova’s best-selling novel, Still Alice. (Simon and Schuster, 2009) The main character, Alice, is only 50 when she is diagnosed with familial Alzheimer’s, a type of early onset dementia that has a genetic marker. Although fictitious, Alice, a Harvard professor, is able to express her experience at the Alzheimer’s Association International Conference:
“My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short-term memory is hanging on by a couple of frayed threads.”(Genova, 251)
Perhaps the biggest challenge for families confronted with early onset AD is the need for caregiver support almost immediately following diagnosis. Many spouses of those with early onset AD need to continue working, unable to stay at home. A couple in their 50’s affected by early onset are parents of offspring likely to have school aged children. Resources are more limited, even with family in town.
From my observations, the difficulty is largely one of keeping a younger, recently very active person occupied. My experience comes from 20 years as a nursing home administrator, Alzheimer’s Association educator, and rementia care consultant. In my experience, these special residents had ample strength and abundant energy, yet the working memory – the ability to follow instructions - was minimal. Language skills were highly impaired. With those two symptoms, there can be a lot of re-arranging and disorder around the house. And there was a lovely woman who flew with me to Sacramento for a Senate hearing on AD to tell her story of a forced early retirement from her nursing career. Getting through the security process at the airport took an extended amount of time. The public was not happy with me or her.
“Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost….We will also try our hardest to compensate for and overcome our cognitive losses.” (Genova 253)
For many months, people would say “Have you read Still Alice?” I would respond “I work in this field. I’ve known many Alices.” Recently, the book was left behind on a stair master as though just for me! My hat is off to Mrs. Genova - I’ll leave my review at that for now. And I plan to see the movie, too.
Blog by Kassandra A. King, the author of “Getting REAL About Alzheimer’s: Rementia through Engagement, Assistance, and Love.” Ms. King is the owner of Alzheimer’s Connection, provider of professional rementia care training for the caregivers of SYNERGY HomeCare in La Mesa, CA, and Broomfield, CO.
SYNERGY HomeCare provides a variety of in-home care services such as senior home assistance, homecare support, and in-home companionship services to clients of all ages for families living in East Central County including La Mesa, Casa de Oro, Del Cerro, Mt. Helix, Santee, Lemon Grove, San Carlos, Allied Gardens, Tierrasanta, and other nearby communities. Call SYNERGY HomeCare today to learn more and discuss your options at 619-462-2273.