Auburn McCanta wrote her IPPY and Benjamin Franklin award-winning novel, All the Dancing Birds, to allow readers a look into the mind of those who live with the unfathomable and incomprehensible illness of Alzheimer’s disease. With a glass of red wine in one hand and a fluttering fan in the other, quirky, frightened, gregarious main character, Lillie Claire Glidden, encounters Alzheimer’s disease with drama, grace and unflinching candor. Of course, Lillie Claire’s story is very much fiction, but nevertheless, the fact is … millions are living under the harsh reality of real life with Alzheimer’s related dementias.
Dementia is a general term used to describe significant loss of cognitive function due to a number of forms of brain illness. Alzheimer’s disease is the most common form of all dementias. (For a good discussion of dementia, visit the National Alzheimer’s Association.)
Currently, there are an estimated 5.5 million Alzheimer’s patients in the U.S., with nearly 16 million caregivers providing over 17 billion hours of unpaid care. There are approximately 26 million sufferers worldwide, with estimates that this population is expected to explode over the coming years. There is no single, identifiable cause of Alzheimer’s, nor is there yet a cure.
Alzheimer’s disease patients are men, women, rich, poor, advantaged, and disadvantaged. They live everywhere, from the largest cities to the most remote rural areas. They may be ill for many years before anyone discovers the disease. The definition of Alzheimer’s disease points out the one thing that unifies all who experience its effects; Alzheimer’s disease is the deterioration of a fixed point of reference from which to recall memories, words, and events.
It’s been described as a rabbit hole into which entire families fall, but unlike Alice, there is no return to normal.
There’s no single look to Alzheimer’s, just as there is no particular demographic that is either susceptible or immune. For those with Alzheimer’s, every place from which to be productive and giving, to be restored, to be welcomed, to be themselves, to give physical expression to their changing personalities, is removed. These are, quite simply, people slowly deprived of their unique humanity.
I send my best to all who must navigate the intricate and often baffling trail that winds through Alzheimer’s disease. Here’s some information that may get you started:
To learn about Alzheimer’s from a friendly, yet more clinical perspective, The National Alzheimer’s Association is an excellent place to start. Their website provides basic dementia-specific information, including the warning signs, the stages of Alzheimer’s, and where to find local support groups.
In 2012, the National Alzheimer’s Project Act created a national plan to identify, address and respond to issues specific to the disease. It addresses the rapidly escalating Alzheimer’s crisis and will serve to coordinate efforts across the federal government. States are also responding by forming policy plans for their own specific needs.
Visit Auburn’s blog for more musings and information about living with, or caring for someone who lives with, Alzheimer’s disease.