ECT for Dementia and the Risks of the BPSD Mindset

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It’s onerous to imagine that my first blog publish on this topic was eight years in the past, colorfully titled ECT
for AD and LBD? WTF. In that publish, I criticized researchers for giving electroconvulsive remedy (ECT) to folks residing with dementia who have been exhibiting “extreme agitation or aggression.” This matter has jumped again into
the limelight just lately with the announcement of a brand new $11.eight million NIA grant—to check ECT on
a complete of 200 folks residing with Alzheimer’s illness who’ve been referred to 5 geri-psych
inpatient facilities, together with these affiliated with Harvard, Mayo Clinic, and Emory College.
I suppose it’s time to replace that publish.

In latest many years, electroconvulsive remedy has been used primarily for the therapy of extreme
melancholy, and has been discovered to be useful in lots of circumstances the place one’s life is really
endangered by the situation. The method has significantly improved for the reason that One Flew over the
Cuckoo’s Nest days: electrode leads are utilized to just one mind hemisphere to attenuate
cognitive modifications, and each a common anesthetic and muscle relaxant are used to restrict the
induced seizure to the mind. In my former geriatrics follow, just a few of my sufferers with very
extreme melancholy have been handled with this method through the years (none of them had vital
dementia on the time of therapy and all obtained fewer than a half dozen remedies).
Afterward, they confirmed modest enchancment of their temper, however in addition they confirmed some
lasting cognitive modifications, contradicting the claims of some that there are “no” cognitive aspect
results to ECT.

Now as soon as once more, a big research will apply this therapy to folks residing with dementia.
Though I’m not aware of all of the methodology within the proposed research, the next remarks
ought to fall shut sufficient to the precise design to assist my issues.

Let’s begin with the moral issues. The people who find themselves transferred to such inpatient facilities
are invariably moved there at another person’s route. At this level within the lives of individuals with
Alzheimer‘s illness, a mess of day-to-day selections have already been—rightly or
wrongly—assumed by relations or different representatives. Whereas superior directive
protocols are crucial in circumstances of decreased capability, they have been created to guard the particular person
and respect her needs. This leads one to surprise how such an invasive process as ECT,
employed with out the person’s consent, has come to be construed for example of
“safety” of that particular person’s well being, well-being, and beforehand said needs.
My latest foray into formal analysis has taught me that even the straightforward assortment of
nameless knowledge about, for instance, antipsychotic use must have ethics committee
approval. One wonders how surrogate consent to make use of ECT (often given a dozen or extra instances
in these research) ever handed an ethics board.

Really, one doesn’t surprise. This research is an ideal instance of what occurs when an excessively
medicalized view that sees all misery as “behavioral and psychological signs of dementia”
(or “BPSD”) tries to search out “options.” My expertise and the work of many others has proven
that almost all misery is the results of different underlying elements—relational, environmental, unmet
wants, and so forth.—and that whereas dementia might have an effect on one’s communication or coping abilities, it’s
hardly ever the basis reason for their misery. With every other illness course of, the logical method
could be to deal with the basis trigger(s), not merely deal with the person with drugs or shocks.
However our BPSD view causes us to medicalize and pathologize the expressions of individuals residing with
dementia; in actual fact, we maintain them to a better emotional customary than we’d ourselves. We
get indignant, unhappy, pissed off or anxious, however folks with dementia have “behaviors.” We go for a
stroll, do our “steps,” or get bored and depart, however folks with dementia “wander” or ”exit-
search.” We get stressed when pressured to observe different’s rhythms and schedules, however folks with
dementia “sunset.” We go to Costco and store in bulk, however folks with dementia “hoard.”
And we don’t like being locked up, bossed round, or touched by strangers, however folks with
dementia get “agitated” and aggressive.” If individuals are upset as a result of they’re being undressed
by strangers, are locked inside a residing space, haven’t any significant engagement of their days, or
are merely expressing the vary of feelings that all of us show at instances, how does ECT enhance
that?

These points additionally increase the bigger query of how the human rights of individuals residing with
dementia are doubtlessly being trampled by such a process. A 2018 choose’s determination to permit
a Massachusetts college to make use of ECT for college kids with extreme studying disabilities was harshly
condemned by human rights advocates, displaying that the rights of these with different disabilities proceed to be
superior far forward of these residing with dementia. Considered from this lens, one may say that
utilizing sedating drugs or ECT violates certainly one of our most elementary human rights in any care
atmosphere—the proper to have one’s issues heard and understood, and crucial
lodging made. In reality, it is a central tenet of resident rights rules all through
aged care.

On the efficacy aspect, having learn and extensively critiqued the entire antipsychotic research over
the years, I can predict that this research will observe many of the identical flawed premises: (1) it would
view the misery as an inside “symptom,” ignoring the whole lot else surrounding the particular person,
(2) it would measure its major outcomes through decreased scores on reductionistic, deficit-based
scales of “agitation” quite than searching for constructive outcomes, similar to measures of well-being
or improved engagement, (three) it would reduce the reporting of the unwanted effects of the therapy,
or paint them as a suitable tradeoff to acquire a way of emotional calm (extra on this
later), and (four) most necessary, it’s designed to check ECT towards “regular care,” that means that
no progressive approaches to enhancing folks’s well-being or remodeling the care
atmosphere will probably be utilized—in impact, will probably be like testing the impact of Bacardi 151 rum on
relieving excessive thirst, with out attempting to supply water.

On the protection aspect, loads has been stated about how a lot safer and well-tolerated ECT has
turn into lately. Nonetheless, folks with extreme melancholy have brains which might be fairly
structurally intact. How does that diploma of security translate to the folks with “average to
extreme Alzheimer’s illness” who will probably be handled on this research, in whom there was intensive
neuronal injury, notably to reminiscence facilities which might be prone to the results of
repeated ECT? In 2016, citing the potential for extreme unwanted effects, the FDA moved to enact new
restrictions on the usage of ECT in melancholy, together with holding a detailed risk-benefit discussion
with every affected person .

Subsequent, let’s take a look at affected person choice. Who’s referring the folks to the geri-psych items that may
be enrolled? Normally it’s nursing properties, and in that case, what’s their present data of
progressive, compassionate assist for folks residing with dementia? Are they high-performing
properties who’re solely referring folks with really refractory episodes of misery? Or are they
properties who’re poorly educated and outfitted to supply extra individualized approaches? Do
they’ve constant staffing assignments, or are they rotating folks usually who present
private care (there may be a lot proof that such rotation is a serious causative issue for misery
and resistance)? Are many antipsychotic medication getting used concomitantly with the ECT? And
does the research additionally embody community-based referrals from overwhelmed relations
who haven’t been taught how you can greatest assist their family members, or who’ve insufficient
sources to take action?

My guess is that they’ll take their referrals as per their regular “agitation” protocols, and can
not attempt to delve deeply into these elements. Right here is why that’s critically necessary:
Dr. Angela Norman and her staff from the Arkansas Well being Care Basis have launched a
giant initiative to make use of the Effectively-Being Method to Misery that I educate of their state’s long-
time period care communities. After an preliminary, extremely profitable pilot with 4 properties, Dr. Norman
introduced the method to the 25 highest-prescribing properties in Arkansas. As of this writing, these
properties have lower their antipsychotic use by a mean of 49% in solely 6 months.
Moreover, Dr. Norman’s staff has been mentoring a gaggle of almost 100 Arkansas nursing
properties with this method. Over the identical interval, they’ve considerably diminished the quantity
of individuals transferred to hospitals and geri-psych items from these properties.
Contemplate the implications of this: These folks whose well-being has been improved, and who
have been saved off of medication and out of inpatient therapy in Arkansas are the identical sorts of
folks to whom the NIA research will probably be making use of a number of programs of ECT in Michigan, Minnesota,
New York, Massachusetts, and Georgia. This implies that many, if not many of the research
topics will probably be getting an invasive, doubtlessly dangerous therapy that will have been
pointless in the event that they lived in a spot that supplied extra progressive approaches.
Sadly, my very own previous searches for analysis grants have discovered that the NIA hardly ever funds
the sort of work that’s being carried out in Arkansas. I can solely surprise what my late good friend and
mentor, Dr. T. Franklin Williams (who directed the NIA from 1983-1991) would say of his former group funding an ECT research similar to this. Having had many discussions on dementia with Frank and his spouse Carter through the years, I feel I do know.

Let’s wrap up by getting again to the remark above about “acceptable unwanted effects” to
produce calm—we’ve additionally been down that street with antipsychotic medication. Whereas I’ve not but
heard this specific analysis staff say it, there’s a frequent angle round such
interventions that you simply most likely have heard: “Even when there are lasting cognitive results (from
ECT, or antipsychotics), the particular person is struggling; and having her shift to a extra superior stage
the place she is much less distressed may really be a blessing.” I’ve heard this stated many instances
from individuals who really really feel they’re being compassionate—I’ve absolutely thought it myself in
the distant previous. However it is a harmful approach to assume.

I’ve mentioned a few of the many exterior elements that may function a root reason for misery, and
methods wherein these underlying elements will be efficiently addressed with out medication or ECT. So,
is a lower in cognitive operate actually a suitable tradeoff? How compassionate is it to
render an individual now not able to expressing these human feelings and unmet wants?
Kate Swaffer, who has lived with a analysis of dementia for over a decade, instructed a 2018
Australian parliamentary advisory group, “Future generations are going to look again on the approach
we’ve mistreated our Elders in aged care . . .and can hold their heads in disgrace on the approach
we as ‘civilized society’ have handled them.”

I imagine dementia is the best disgrace of recent medication; not as a result of there have been no
vital advances in therapy, however as a result of—from restraints, to locked items, to
antipsychotics, to ECT—we’ve misplaced our recognition of the humanity of these residing with the
analysis. And there are few indicators that we’re making a lot headway on this regard.

I’m left to the identical conclusion I reached in my 2011 publish: ECT for dementia nonetheless sounds to me
just like the “21 st Century Lobotomy.”





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