Dad’s diagnosis of Alzheimer’s stayed
hidden from everyone until I took over the medical administration of my parents
in 2015. Once I found out, there was a deafening silence from most of the
people I know even though virtually all of them would add, “My _____ had
Alzheimer’s…” But there was little help, little beyond people sadly shaking
heads. Or horror stories. Lots of those. Even the ones who knew about the
disease seemed to have received a gag order from some Central Alzheimer’s
Command and did little more than mumble about the experience. Not one to shut
up for any known reason, I started this part of my blog…
Dad’s sundowning
is getting worse.
Last night he
called me several times, confused in many ways. Once he insisted he wasn’t at
the care facility where he has lived for the past two years. Another time he
called asking me about a battery being charged. A third time he called worried
about how he’d get to work tonight – and when I asked a bit for details he
stumbled about somehow know BOTH that he’d been retired since 1993 and that he
needed to get to work. When I wondered what he did there, he said, “Oh,
whatever needs to be done.”
The last call was
for me to come and get him and take him home – yet when I asked where, he said,
“To the place I’m supposed to be.” We talked for some time, until I finally got
him to agree that he’d stay there for the night and we’d talk in the morning…
As I often did
when exploring my wife’s breast cancer, I pulled up a recent journal article
and I’ll interpret what it says, “Neuropsychiatric symptoms (NPSs) are
characterized by a marked interindividual variability. Their prevalence and
severity change over the course of the disease. Moreover, multiple interacting
variables and pathophysiological mechanisms may influence their occurrence and
phenotypic expression. These aspects have been frequently hindering the
application of standardized clinical and analytic approaches to NPS, as well as
the identification of targeted pharmacological interventions.”
In essence, the
authors are telling me that there are so many things that go into how an
Alzheimer’s patient experiences sundowning, that there IS no standard treatment
– because there is no “normal” expression of the disease. Because it’s so
highly individualistic, “…the sundown syndrome has so far drawn limited
clinical and scientific interest compared to other specific NPS and behavioral
disturbances occurring in dementias (e.g., apathy, depression, psychotic
symptoms). As a proof, the available data concerning its prevalence (mostly
obtained in institutional/residential settings) are scarce and markedly
discordant in the literature. Moreover, no randomized controlled trial (RCT)
specifically investigating the effectiveness of pharmacological and
non-pharmacological strategies in managing this condition among demented
patients has been yet conducted. Several aspects may account for this low
attention, such as the lack of commonly agreed definitions, the absence of
specific screening and assessment tools and the multiplicity of factors that
may trigger or affect its occurrence…the sundown syndrome does not appear in
the recent fifth revision of the Diagnostic and Statistical Manual of Mental
Disorders.”
To be perfectly
frank with y’all, because there’s no target for a drug, no doctor or
pharmaceutical company is going to pay for research because there’s no pot of
gold at the end of Alzheimer’s rainbow. With nothing apparent to show a “dramatic
recovery” when a patient gets a shot or pops a pill, no one is going to see if
there’s anything to be done.
This attitude
toward sundowning also reminds me of the state of education – there’s no clear
definition of WHAT education is. There are very vague and woo-woo sounding
ones, like this from Wikipedia: “Education is the process of facilitating
learning, or the acquisition of knowledge, skills, values, beliefs, and habits….[it]
frequently takes place under the guidance of educators, but learners may also
educate themselves. Education can take place in formal or informal settings and
any experience that has a formative effect on the way one thinks, feels, or
acts may be considered educational.” Now if that isn’t vague, contradictory,
and completely unhelpful, imagine what it’s like to try to justify what you do
to your friends, community, and congressional bodies!
This appears to be
that same for sundowning.
I’m going to stop
now and continue with this discussion in future Alzheimer’s posts.
Later.
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