When I started speaking in support of my new book (rather timidly at first), I was surprised at how much my audiences embraced my ideas. Frankly, I was expecting a lot more resistance. It has struck me that I am addressing very caring groups of people who are struggling and looking for a better way to help people living with dementia. But I have always been waiting for “the other shoe to drop.”
Clearly there is a larger, colder world than those my travels have brought me to. This has been made clear in the past few weeks with several items in the mainstream media. In spite of all the positive feedback I’ve received over the past year, it is clear just how much more resistance we need to overcome in changing the experience of dementia.
Exhibit A: NPR reported that HHS Inspector General Dr. Daniel Levinson has found a potentially dangerous overuse of antipsychotics in nursing homes (http://www.pbs.org/newshour/rundown/2011/05/audit-widespread-use-of-antipsychotic-drugs-in-nursing-homes.html). As a result, Tufts University psychiatrist Dr. Daniel Carlat launched a diatribe on CNN’s website ”In Defense of Antipsychotics” (http://www.cnn.com/2011/OPINION/05/31/carlat.nursing.home.drugs/), which my friend Kim McRae forwarded to me with an impassioned request that I respond.
In that column, Dr. Carlat advocated strongly for antipsychotics as the “most effective medications” for distress, and linked most agitation in dementia to “psychosis”. One of his examples of psychosis was a gentleman with dementia who awoke in his nursing home room, became confused about where he was and thought his deceased wife was calling him from the next room, causing him to pull out an IV in his arm. A man with memory loss, in an institutional setting with IV therapy becoming confused and anxious–psychosis? Really? No less an expert than Dr. Jiska Cohen-Mansfield has written that it is time to abandon the term “psychosis” in describing the misinterpretations of dementia, because they are very different things. Do psychiatrists still not realize this?
The column is accompanied by a host of supportive and sometimes cruel reader comments about the need to drug people with dementia.
Exhibit B: I blogged on May 22nd in support of an op-ed in a recent Sunday New York Times called “Our Irrational Fear of Forgetting” (http://changingaging.org/alpower/2011/05/23/the-alzheimers-ageism-connection/) . Looking at this Sunday’s follow-up paper, there was a huge reader outcry from lay and professional readers alike, attacking her “irresponsible” editorial and ironically demonstrating that very fear, as they put people with Alzheimer’s squarely in a box: stigmatized, de-humanized and very different from us “normal” people. One reader described his late grandmother as “animalistic”, another her family member as “comatose”. A neurologist called Anne Basting’s Forget Memory approach “amusing”, but ultimately worthless.
Needless to say, I posted comments on the first two sites and have sent a letter to the Times as well. It is time for advocates of a humanized approach to caring with and for people with forgetfulness of all kinds to speak up against this societal prejudice that is depriving millions of people of a life worth living. The folks who have shown the way to a new kind of care need to share their messages of hope with this very cynical, (read “frightened”) world.
In a bit of synchronicity, a spam comment sent to me for moderation today led me to an old post in which Irene Zola quoted Norman Cousins (in Anatomy of an Illness) who wrote, “Death is not the ultimate tragedy of life. The ultimate tragedy is depersonalization – dying (or living) in an alien and sterile area, separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience things that make life worth living, separated from hope.”
Tell the media how you feel, and encourage them to tell your stories.
Finally, suggest that the media speak to the real experts in the field of dementia–those who live with the diagnosis and have much wisdom to share with the rest of us. This group is totally absent in all the media discourse. Learn about the Stand Up Speak Out campaign panned for Dementia Awareness Month.
It’s time to take this to the streets, folks.