NICE faces legal challenge over restriction on dementia drugs

The NICE people who are denying cholinesterase inhibitor treatment to
hundreds of thousands of patients in the UK hope to use social services
and psychological care for caregivers [BMJ VOLUME 333 25 NOVEMBER 2006 p.
1085 bmj.com]. How delightful! These NICE people are not very nice, in
my opinion and they don't seem to know much about the course of dementia
of the Alzheimer's type (AD) and the problems that occur in stages 5-7 of
the disease. Emphasizing "social and psychological care" for such people
is utterly stupid as is offering such care to caregivers in lieu of
medications, which have clearly demonstrated a modest benefit for patients
in the later stages of their horrible, relentlessly deteriorating,
neurodegenerative disease.

Where will the "social and psychological people" be when the AD
patient is up all night, threatening to kill and is totally exhausting the
caregiver. There are no "social" interactions that will work with such
patients and I defy anyone to tell me what can be done "socially or
psychologically" for the caregiver other than stripping the house of
anything dangerous, putting locks on the insides of the doors, putting a
heavy door with a deadbolt lock on the caregiver's bedroom and giving the
caregiver a set of noise reduction earphones so she/he can get some sleep
at night.

No "social or psychological person" is going to be around at 7:00 PM
when dinner is served and the caregiver has to feed the patient, then take
him/her to the bathroom and clean up their incontinent mess as well as mop
the floor from spilled food, wipe the walls from food that has been thrown
all over the dining area, etc. And, no "NICE social person" will be
around at 6:00 AM to clean up the messy, urine and feces soaked bed from
the previous night while the patient is wandering around naked with feces
and urine dripping all over the place (caregivers have difficulty
splitting themselves into 2 or 3 people so they can be all over the house
at the same time).

Asking an 84 year old wife (or husband) to do this kind of care for
their spouse of a similar age is subjecting them to cruel and unusual
punishment for an illness based in bonafide neuropathology and not based
in "social or psychological problems."

Denying these advanced dementia patients the modest help that is
clearly given by the cholinesterase inhibitors plus memantine means that
the burden of caring for such patients is worse that it currently is and
must continue to be if the patients are denied appropriate treatment.

Each of the NICE people should be required (and I mean a mandatory
requirement) to care, alone, for a violent, incontinent, messy AD patient
in stages 5, 6 or 7 for a minimum of 3 months. They should have to do
this alone and be with the patient 24 hours per day, 7 days per week, have
no respite, have no medication to give the patient and have no time off
for holidays or anything else they might enjoy doing.

I doubt that one of the NICE people has ever cared for an AD patient
or even provided geropsychiatric care for hospitalized AD patients. And I
doubt they have talked with the caretakers of such patients. Most likely,
as do most bureaucrats and highly placed academics, they just sit around a
table and talk about "psychosocial remedies" for patients with a disease
based in neuroanatomy gone haywire.

I hope the legal challenge survives politically motivated judges and
that there are still some people living in the UK who have a little more
sense than NICE bureaucrats who KNOW NOTHING in spite of, most likely,
having multiple advanced degrees and high bureaucratic positions.

James W. Hawkins, MD
Geriatric (Old Age) Psychiatrist
Adjunct Clinical Associate Professor, Stanford University
240 Kenwood Way
San Francisco, CA 94127
jwhawkins@stanford.edu

Competing interests:
None declared