AAN ISSUES ETHICAL GUIDANCE FOR DEMENTIA DIAGNOSIS AND CARE

Michael Ellenbogen

That is great to see that they change the way they think about driving. I wish they did better about dying but they did improve it a hair.

Press Release

EMBARGOED FOR RELEASE UNTIL 4 PM ET, July 12, 2021

AAN ISSUES ETHICAL GUIDANCE FOR DEMENTIA DIAGNOSIS AND CARE

MINNEAPOLIS – The American Academy of Neurology (AAN), the world’s largest association of neurologists with more than 36,000 members, is issuing ethical guidance for neurologists and neuroscience professionals who care for people with Alzheimer’s disease and other dementias. The new position statement is published in the July 12, 2021 online issue of Neurology®, the medical journal of the American Academy of Neurology. This update to the 1996 AAN position statement was developed by the Ethics, Law, and Humanities Committee, a joint committee of the American Academy of Neurology, American Neurological Association and Child Neurology Society. “Dementia care and scientific understanding have advanced considerably, including greater recognition of non-Alzheimer’s dementias and advances in genetics, brain imaging and biomarker testing,” said position statement author Winston Chiong, MD, PhD, of the University of California San Francisco and a member of the AAN’s Ethics, Law, and Humanities Committee. “This American Academy of Neurology position statement focuses on day-to-day ethical problems faced by clinicians, patients and families in the course of dementia care.” The position statement was developed before FDA approval of the new medication aducanumab and does not address that drug. The AAN position statement notes that communicating a dementia diagnosis can be ethically challenging. Some families may request withholding a diagnosis from their loved one, but that may deprive the person of important opportunities to plan for future needs. In most cases, the statement says family members’ fears about potential emotional harm can be lessened by compassionate disclosure and so it recommends ways to communicate serious information. “Caring for people with dementia requires respecting their autonomy and involving them in their care preferences as early as possible so their wishes can be known, while acknowledging their diminishing ability to make decisions,” said Orly Avitzur, MD, MBA, FAAN, President of the American Academy of Neurology. “This position statement offers guidance in accordance with core ethical principles, supporting the American Academy of Neurology’s mission to promote the highest quality patient-centered neurologic care.” The position statement notes that Alzheimer’s disease is only one form of dementia and symptoms can vary depending on which form of dementia a person has. Some forms begin with behavior disturbances that may be misinterpreted as a psychiatric rather than neurologic disorder. The statement distinguishes between genetic or biomarker testing in people with symptoms of dementia and testing in people who do not have symptoms but are believed to be at risk of future dementia. Genetic and biomarker testing in people without symptoms of dementia is not recommended except in a research context. The statement recommends that anyone undergoing genetic testing should receive genetic counseling before and after receiving results. Ethnic and racial disparities are persistent in dementia and dementia care. The statement notes that Black and Latino people are at higher risk for developing dementia compared with white and Asian people, likely due to social and economic differences earlier in life, and often experience delays in receiving a diagnosis of dementia due to poorer access, unequal care by the medical establishment, and the subsequent mistrust that this unequal care generates. It says doctors should be aware that those with ethnic or cultural backgrounds different from their own may have different perceptions of illness and priorities for care than they do. For decision-making, planning in the early stages of dementia is crucial. The statement says people with dementia should be encouraged to discuss their overall goals with their families and doctors, create advance health care directives, and engage in other financial and legal planning as a guide for when they are no longer able to make decisions. In moderate stages, people may still be able to participate in decision-making by relaying their values to guide care decisions. When a person can no longer make decisions, their representatives should give priority to preferences the person previously expressed. For daily activities such as driving, cooking and managing finances, the position statement recommends that doctors and family members remain alert to ways of monitoring a person’s activities to lessen risks while preserving their independence and dignity when possible. The AAN also recognizes the potential for abuse and says doctors should look for and document physical signs of abuse, isolation of the person from trusted family or friends, failure to pay for care needs and malnutrition. The position statement recognizes that for some patients in in advanced stages, there are ways to maintain care for a person in the home. But it also suggests that doctors recommend reassessing whether in-home care remains feasible when caregivers experience burnout. While some may request physician-hastened death, which is legal in some states, the statement points out that such laws generally do not apply to people with dementia. These laws require that someone have an estimated survival of six months or less yet still be able to make decisions on their own. People with such advanced dementia typically are not able to make these decisions. Finally, the position statement notes that families often bear significant financial strain associated with dementia care and says new ways of providing and financing long-term care are needed. Learn more about dementia at BrainandLife.org, home of the American Academy of Neurology’s free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life® on Facebook, Twitter and Instagram.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with 36,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

Crushed

Wow a lot of professional ego on display. Yes I read the whole thing Talking about everything except what they are experts in.  Their expertise is in how the Brain functions.  Not social work or case management .  I lecture on professional ethics . 
Why not just tell us how limited their diagnostic tools are ?
And how useless the drugs are ?

 And why there is a reason my wife has not seen a neurologist in 7 years? 

Tell us how to combine neurologists  and geriatric psychiatrists.

 

https://n.neurology.org/content/97/2/80

  

Michael Ellenbogen

I would really love to hear from you which organization you think should be making these recommendations.

Crushed

Michael Ellenbogen wrote:

I would really love to hear from you which organization you think should be making these recommendations.

WRONG QUESTION  This is "feel good" medicine,  You pretend to be doing something when reality is horrible. Does not matter who the nonsense comes from.    

Lots of paragraphs on whether to use the word dementia  or some other euphemism Who cares what they call it? How about describing the epistemic and aleatory uncertainty in the MMSE?  How about how expensive and useless Namzaric is as a combination?  That would be expertise  !


  

Michael Ellenbogen

 You have lost my credibility as you can don’t even answer the simplest question when it comes to your one comments. If you dent have the answers then don’t say things you don’t know what are taking about. That is something I learned from my great boss wo served in the military. He said if you are going to complain about something that is okay but you better have the answers on how to do it better. Otherwise just keep your mouth shut.

 

Crushed

Michael Ellenbogen wrote:

 You have lost my credibility as you can don’t even answer the simplest question when it comes to your one comments. If you dent have the answers then don’t say things you don’t know what are taking about. That is something I learned from my great boss wo served in the military. He said if you are going to complain about something that is okay but you better have the answers on how to do it better. Otherwise just keep your mouth shut.

 

I would really love to hear from you which organization you think should be making these recommendations.

 
 This is not a QUESTION 
 It is simply a diversion 
 if group  A is spouting is spouting nonsense it is a diversion to ask w Well who should be spouting the  nonsense.   Its not a simple question it is diversion and argumentative.    . YOUR BOSS IS wrong . As Samuel Johnson said   You may scold a carpenter who has made you a bad table, though you cannot make a table. It is not your trade to make tables
 
 Your boss was intellectually slothful and abusive  It's a way way to keep obvious garbage protected from criticism

  I point out defective products all the time without being able to redesign them
 

 

 
 
 

 
 
 
 

 
 

dayn2nite2

Their statement is laughable.  Since when does a neurologist EVER take time to "determine whether in-home care is still feasible" or assess the patient for possible abuse?

Since never.  

Michael, this statement, paper, whatever the heck it is, is a gigantic nothingburger and will not change one bit your care or anyone else's care.

Michael Ellenbogen

dayn2nite2 - can not say I am surprised by your answer. All the states follow all of their recommendations as that is why States had driving lays that said to not drive. That was their position 8 years ago. Since then it has now change twice and each time more favorable for those living with dementia which are great steps in the right direction.

 

As far as what organization should be doing this. I don’t think any out there is better and I don’t even like them. But for some reason they are the ones the Fed listen to and the states. I don know why but sadly that is the way it is.    

Iris L.

Why are you jumping on Michael?  He didn't write the paper.  He posted it so members could see what the neurologists' position is.  I, for one, appreciate it.  

There is confusion over the role of the neurologist.  The neurologist's role is to make a diagnosis.  If the diagnosis is one of the dementias, then refer the patient back to the primary care doctor for continuing care.  This is how my neurologist treated me.  Of course, some neurologists may continue to see the patient.

There are a LOT of things wrong going on with caregiving for the PWD that I could mention, but I don't.  Why should I open up a can of worms? 

Iris

Crushed

Michael Ellenbogen wrote:

dayn2nite2 - can not say I am surprised by your answer. All the states follow all of their recommendations as that is why States had driving lays that said to not drive. That was their position 8 years ago. Since then it has now change twice and each time more favorable for those living with dementia which are great steps in the right direction.

 

As far as what organization should be doing this. I don’t think any out there is better and I don’t even like them. But for some reason they are the ones the Fed listen to and the states. I don know why but sadly that is the way it is.    

My sympathy is with the victims of auto accidents caused by dementia  
 
People with moderate to severe Alzheimer’s disease should never get behind the wheel. People with very mild Alzheimer’s may be able to drive safely in certain conditions. But as memory and decision-making skills worsen, they need to stop because a driver with dementia may not be able to react quickly when faced with a surprise on the road. Someone could get hurt or killed. If the person's reaction time or ability to focus slows, you must stop the person from driving. 
People with moderate to severe Alzheimer’s disease should never get behind the wheel. People with very mild Alzheimer’s may be able to drive safely in certain conditions. But as memory and decision-making skills worsen, they need to stop because a driver with dementia may not be able to react quickly when faced with a surprise on the road. Someone could get hurt or killed. If the person's reaction time or ability to focus slows, you must stop the person from driving.
  NIH   Driving Safety and Alzheimer's Disease

Maryland does not even mention the neurologists

  https://www.marylandattorneygeneral.gov/Health%20Policy%20Documents/alzchap10.pdf

 

https://www.nhtsa.gov/sites/nhtsa.gov/files/812228_cliniciansguidetoolderdrivers.pdf

 

https://www.nia.nih.gov/health/driving-safety-and-alzheimers-disease

Michael Ellenbogen

There are many people with dementia in the stages you say that can still drive very good. I have been tested and I do better then most drivers with our dementia and I am past the mid stage. While there are many things, I cannot do I can still do that. Hell, I could still drive a twin engine boat that was 48 foot long and turned it in a foot slip with high currents. Most people can not even do that. I shocked even the dockmaster when I did that.  I can guarantee you I was involved in a clos accident a few moths ago that if someone else was in my shoes they probably would still be in the hospital. My wife can not even believe how I was able to get us out of that accident. All I know is I am so luck to still be able to drive and speak. So many people are praying for me from all over the world.

 

Like they say ever person with this disease is different and one needs to look at each case differently. There is no one size fist all to take one license away.  

 

dayn2nite2

Nobody has made comment about Michael.

We are discussing this ridiculous paper by the AAN.

Jo C.

Thank you Crushed, for providing that link.  I personally found it interesting.

Not really an active part of this discussion that is beng held, but for those readers who are wondering specifically how the terms are defined for "Clinician" and "Allied Healthcare Professionals," I am including the following:

 CMS.gov (Medicare and Medicaid) definition of "Clinician":   Clinicians may be physicians, nurses, pharmacists, or other allied health professionals.  

Listings of Allied Health Care Professionals are HUGE; many of which we would not find useful in our situations.  There are multiple listings online of what these professions are, the following is just one of them.  This online listing below did not list Chaplains who are also considered AHCPs   Our Social Workers and Care Aides also fall within this category.

ALLIED HEALTH PROFESSIONS

Anesthesiologist assistant3, 4 Anesthesia technologist/technician3, 4Anesthesia technology4

Athletic trainer3

Audiologists1, 5

Cardiovascular technologists and technicians3, 5  Cardiovascular technology4

Behavioral disorder counselors5

Clinical laboratory workers1   Medical technologist2, Medical laboratory technologist2, Medical laboratory scientist2   Medical and clinical laboratory technicians5

Cytotechnology4

Dental hygienists1, 5 , dental assistants1, 5 dental laboratory technicians 1

Diagnostic medical sonography4  Diagnostic medical sonographers5

Dietitians1, 5, Dietetic technicians1, 5 dietetic assistants1  Registered dietitian2 Nutritionists 5

Electroneurodiagnostic technologist3 Electroneurodiagnostic technology4

Emergency Medical Technician EMT, Paramedic 1,3,4 , 5
Exercise science (personal fitness trainer, exercise physiologist, and exercise science

professional) 3Exercise physiology4 Exercise science 4Personal fitness training4

Genetic assistants1

Health Administration

Health information  technologists1,  Health information administrators1 ; Health information management2

Health educators5

Histotechnologist2

Home health aides5

Kinesiotherapist2 ,3  Kinesiotherapy4

Lactation Consultant4

Marriage and family therapists5

Magnetic resonance technologist2

Medical assistant3, 5 Medical assisting4

Medical dosimetrist2

Medical illustrator3Medical illustration4

Medical librarian2

Mental health counselors5

Music therapist2

Medical transcriptionists1

Nerve conduction studies technologist2

Nuclear medicine technologist2, 5

Occupational therapists1, 2, 5Occupational therapy assistants1, 5   Occupational therapist aides5

Ophthalmic medical assistants1, 2, optometric assistants and technicians1  , Paraoptometrician2

Orthotics and Prosthetics 1 Orthotist2, 3,4, and Prosthetist2, 3, 4  Orthoptist2, 3  Orthotic and prosthetic technician4

Other social and mental health service workers1

Perfusionist3, 4

Pharmacy assistants1  Pharmacy Aides5 Pharmacy technicians5

Physical therapists1, 5  Physical therapy assistants1, 5   Physical therapist aides5

Physician assistants5

Podiatric assistants1

Poetry therapist2

Polysomnographic technologist2,3 Polysomnographic technology4

Psychiatric aids5 Psychiatric technicians5

Radiation Therapists5

Radiologic service workers1  Radiologist assistant2 Radiologic technologist2, 5Radiologic t   technician 5  Radiology administrator2

Recreational Therapist2, 5 Recreational therapy4

Rehabilitation counselors5 Other rehabilitation service workers1

Respiratory therapy workers1   Respiratory therapist2, ,3, 5

Specialist in blood bank technology/transfusion medicine4

Speech pathologist1 Speech –language therapists5

Substance abuse and behavioral disorder  counselors5

Surgical technologist2, 3, 5  Operating room technicians, 1 Surgical assistant3   Surgical assisting4

Surgical technology4

Surgical Neurophysiologist2

Vocational rehabilitation counselors 1

Michael Ellenbogen

I should also say that boss I mentioned I thought he was the biggest jerk when I worked for him.  Today I feel so lucky to have had the opportunity to work for him. Because of him I became so much better person and that I believe that is what lead to me reaching the level I have. That is also why I now have relationships with the highest people all over the world. All because he was so hard on me. I wish I had the opportunity to thank him today. Sadly, I don’t even remember his whole name. I think his first name was Jim and this was at Colonial Penn at my first job out of Tech school.