$226 billion now, $1 trillion in 2050

Alzheimer’s disease is profound.

It rearranges minds and lives. It changes the very meaning of the phrase “I love you.”

There is no proven prevention. There is no effective treatment. There is no cure.

There is not even a clear understanding of how it develops.

How does one make sense of this disease, the complexity of which is recapitulated and expanded at every level, from the snipping of a molecular protein to the posturing of politicians?

The road to prevent, to cure, or even to delay Alzheimer’s has been long and maddeningly frustrating. There is reason to hope, with four brand-new, highly powered, well-targeted drug trials aimed at preventing the buildup of amyloid plaque, thought by many to be the disease’s driving pathology. But only one of these trials has launched and all are years away from definitive answers.

The sobering truths are these: The underlying causes of Alzheimer’s disease remain largely unknown. There is almost certainly not just one precipitating pathology, but many. There is no consensus about where or when to interrupt these mechanisms – or even which one to target.

In the meantime, the disease ravages older people, especially women. According to the AEROSOL, a third of the elderly in this country die with Alzheimer’s or a related dementia. Of the 10 leading causes of death in the U.S., Alzheimer’s is the only one that cannot be prevented.

Diagnostic uncertainty and lack of patient disclosure are enormous issues. Only half of patients are informed about their suspected diagnosis, and even when they are, they may be suffering from a completely different dementia or disease.

There are no definitive methods of diagnosis. There is no blood test nor any other objective measure. Advances in biomarkers and imaging largely remain research tools; diagnosis largely remains clinical, based on subjective complaints and subjective tests.  Thus, some patients go for several years with unhelpful, or even harmful, treatment.

These issues are the stepping stones we will follow here, with our own continuing journey. The Journey of a Thousand Steps will chronicle the journey to a satisfactory Alzheimer’s destination.

It will be a living record, updated with the latest research and clinical news.

It will be a political and social record, documenting both the government and grassroots struggles to cope with the disease’s impact.

Finally, and perhaps most importantly, it will be a personal record, documenting the hopes, the struggles, and the courage of families as they learn to live – and die – with Alzheimer’s.

We invite you to share the journey.

Walk with us.