Stamp The Foreheads of People With Alzheimer's

Do I really want my wife and others with Alzheimer’s Disease (AD) to walk around with their foreheads stamped?  Of course not.  But, I must confess, there are times when I do wish that such a stamp existed.  The imprint would be, “"I have Alzheimer’s  ... please speak to my caregiver, not to me.”" 

We need to better sensitize everyone in the medical field to the realities of Alzheimer’s.  People with Alzheimer’s cannot be expected to understand or remember what is asked of them, what is said to them, what is done to them, or what they have just been told to do.  That is why everyone in the medical profession must always remember to speak directly with the caregivers of their AD patients.  Receptionists at medical facilities and in doctors’offices, lab technicians, rehabilitation workers, therapists, health care aides, nurses, physician assistants, dentists, dental hygienists … and, sadly on occasion, even some doctors … need to always be aware that they should never discuss important information with AD patients when their caregivers are not present.  AD patients are often unable to correctly hear, remember, process, or share important information with their caregivers.  Remember that stamp!

Caregivers should either be present with AD patients when they are being examined, or should be present whenever any discussion of that examination takes place.  Medical personnel should never ask AD patients for important information about current medications or medical issues during examinations when caregivers are not present.  Remember that stamp!

Medical personnel must also be sensitized to the futility of communicating with most AD patients by telephone.  Telephone messages should never be left with an AD patient.  AD patients will often either not remember receiving such calls, or not process that information, or forget to share that information with their caregiver.  As an AD spouse caregiver, I’ve had to call back medical offices to indicate that my spouse remembered receiving a telephone message, but didn’t remember what was said.  I’ve also had to call back to say that my spouse relayed a telephone message to me that I knew could not possibly be accurate.  Members of my weekly AD spouse support group report similar incidents.  Were important information communicated directly to caregivers, these frustrations and misunderstandings could be easily avoided.  Remember that stamp!

The medical profession is guided by ethical standards and legal guidelines to legitimately protect the privacy rights of their patients.  However, HIPAA Privacy Rule regulations do allow doctors and medical professionals to exercise reasonable judgment in determining what information may be shared with relatives and friends of patients.  In my particular situation, for example, my wife cannot be expected to give anyone accurate information about anything anymore … not about her medical history, not about her medications, not about her current symptoms, and not about her 6 ADLs (Activities of Daily Living).  I must be present to answer such questions and provide such information.  Similarly, my wife cannot be expected to remember information she is given nor can she be expected to share that information accurately with me.  If AD patients are in early or moderate stages of Alzheimer’s, they can probably provide specific permission for doctors to share all medical information with their caregivers.  But if AD patients are unable to communicate such permission, and doctors and medical personnel feel uncomfortable about sharing all medical information with caregivers, they can simply ask caregivers to provide them with copies of their durable power of attorney to authorize such communication.  Remember that stamp!

Let’s stop expecting AD patients to provide accurate information about themselves or their medical condition.  Always speak directly with their caregivers if you want to obtain such information.  And let’s stop communicating important test results or any other relevant medical information solely to AD patients.  Either speak with your AD patients only when their caregivers are present, or just communicate directly with their caregivers.  Remember that stamp!

 

Published in Journal of the American Geriatrics Society,  August, 2012.  Vol. 60, No. 8, pp. 1597-1598.  Access at:

httm://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2012.04084.x/full