Our book has now been published after a gestation period of nearly 18 months. I hope that it will be well received, and hope more deeply that it will prove valuable and helpful to those who realize that “We Are All Living With Dementia.”
Eighteen months is a long time, so I find myself reflecting on what has changed in the last year and a half, and how the book might have been different had we been aware of those changes while we were writing it. Three major themes come to mind as I ponder these questions:
1. Failed Clinical Trials. At least two touted and heavily-funded clinical trials failed spectacularly, one ending early because the participants were getting worse rather than better. The learning seems to be that there are in fact drugs that can dissolve the plaque that characterizes (Causes? Accompanies? Protects from?) Alzheimer’s disease, but that once developed the plaque becomes the last thing holding neurological connections together. Many researchers now believe that treating fully-developed Alzheimer’s is a clinical dead-end,and therefore any real hope lies in early diagnosis and pharmacological intervention before the plaque is established. This suggests that a day may come where medications may slow or mitigate the progress of dementia, but that a “cure” for existing dementia will not happen in most of our lifetimes, if ever. To use the somewhat alarmist language of the Alzheimer’s Association, many in the baby-boom generation will die from, or with, dementia. We must accomplish through living joyous friendship within flourishing communities what medical science cannot.
2. New Diagnostic Categories. We note in the book that MCI (Mild Cognitive Impairment) is a controversial and much-debated condition, but since we completed our manuscript it has become an official diagnostic category (although debate continues as to whether it is always a precursor to dementia). More recently a new term has surfaced, Subjective Cognitive Impairment, loosely defined as “I know something is not right even though clinical tests do not confirm it.” There is an emerging debate between those who wish to “harden the categories” by defining cognitive conditions with immutable labels and those who argue that as we age, cognitive change take place across a vast spectrum of grey that defies tidy categorization. We lean strongly towards the latter, but will watch with interest as the debate unfolds.
3. The Web. This is the one I did not see coming. Over the last year or so, the number of websites, blogs and Facebook groups developed by persons diagnosed with dementia and their care partners has proliferated at an altogether remarkable rate. Information is being shared, support is being offered and received, and community is being formed in powerful and important ways. Ideas – Memory Cafes would be one example – are being shared across the lines of nation and culture. Watch for this blossoming to double and triple at an astounding rate. Dr. Richard Taylor argues that dementia rights are fifty years behind disability rights. The web will likely close this gap quickly.
These changes in understanding and attitude are significant. This makes it even more important that in the midst of change we focus on the things that abide, the things that dementia cannot take from us. Joy and laughter. Meaning and purpose. Worth and value. Friendship and community. We are hard-wired to be in relationship with one another. These are the things that cannot and will not change.