Dementia Connection LLC™
White Paper
The Dangers of Denying Dementia
Susan Scanland, MSN, CRNP
CEO and Founder
Dementia Connection LLC™
www.dementiaconnection.com
November 9, 2009
© Dementia Connection LLC™
Introduction
Contents
Introduction
2
Problem Statement and
Implementation
2
I- Independence
3
S- Safety
3
O- Opportunities Lost
5
A- Atrophy of Brain
5
R-Relationships
6
T-To Treatment
7
H-Help in: I "SOAR" to HELP
accompanying checklist on
www.dementiaconnection.c
om
References
8
This white paper titled “Dangers of Denying
Dementia” is written by a nurse practitioner
and national dementia expert working with
persons and families dealing with
Alzheimer’s disease for nearly 30 years.
Problem Statement
Estimates reveal that less than 50% of
persons with Alzheimer’s disease are
currently diagnosed (Solomon & Murphy,
Geriatrics, 2005). An Alzheimer’s
Foundation of America/Harris Interactive
2006 poll revealed that Alzheimer’s
diagnosis can be delayed by two years to
six years when caregivers deny dementia
or are concerned about perceived stigma
of the illness. This often results in
significant stress, anxiety and relationship
difficulties to the person suffering from
memory loss and to their family. Delayed
diagnosis raises the risk of negative
financial, legal and safety consequences.
Failure to diagnose and treat using FDA
approved anti-dementia medication may
result in accelerated losses in cognition
and daily functioning, and an earlier onset
of behavioral challenges.
Implementation
Susan Scanland MSN, CRNP, a health care
provider for nearly three decades and a
national speaker on Alzheimer’s disease
and dementia, has developed a
mnemonic:
I “SOAR” TO HELP to raise the awareness
of individuals, caregivers and health care
providers of the “Dangers of Denying
Dementia.” Susan also exposes the
potential results of ignoring the early
symptoms of memory loss.
©Dementia Connection LLC™
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I “SOAR” TO HELP mnemonic
guides the reader of this white
paper, “Dangers of Denying
Dementia” as well as the reader of
the accompanying checklist titled:
I “SOAR” TO HELP.
I “SOAR” TO HELP
I-Independence
Suppose I were to ask you
what you hoped for your
parent, spouse, or loved one if
you found out today that they
had dementia or Alzheimer’s
disease (AD). How many of
you would request that your
loved one become disabled and
dependent at a faster rate?
The majority, if not all
would say, “I don’t want my
parent/spouse to deteriorate
quickly with AD….I know that
my mom/dad/spouse/partner
would want to remain as
independent as safely possible
in their preferred living
environment.”
But, how many of you
realize that by denying, or
pretending that your loved one
does not have AD, you are
making an unconscious
decision to possibly speed up
and accelerate the loss of
their daily functioning and
independence? Geriatric
©Dementia Connection LLC™
specialists call these skills “ADL”
Activities of Daily Living.
There are varying levels of ADL.
Instrumental ADL include the
necessary skills for a person to be able
to live and function on a daily basis in
her/his own home setting. Paying
bills, grocery shopping, driving,
keeping appointments, and taking
medications correctly are examples of
instrumental (higher) levels of
activities of daily living. On the other
hand, Basic ADL include bathing,
dressing, toileting, and transferring
one’s position, as well as the ability to
control one’s bladder and bowels, and
the ability to ambulate (walk about).
I also would bet the majority of
you think that Alzheimer’s is limited
to forgetfulness and the memory
section of the brain. In addition to
memory, the ability to form new
thoughts and communicate is
attacked. Other key aspects of one’s
persona; mood, actions, and behaviors
are affected in the earliest stages of
dementia. Alzheimer’s begins its
attack on activities of daily living in
the earliest part of the illness! First
the instrumental activities of daily
living erode in the early stages; then
the basic activities of daily living
decline as one approaches the middle
stages of Alzheimer’s. The progression
continues throughout the entire
illness.
S-Safety
Vividly, I can recall one of my first
nursing home patients when I began
my clinical practice as a nurse
practitioner in long-term care in 1982.
Mr. Fred W. was admitted to our
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nursing home care unit. He
was alert, pleasant, and
answered questions about his
physical symptoms seemingly
appropriately. I proceeded to
complete his full physical
examination. Following his
physical, he was hungry and
needed to have dinner and rest.
Fred’s admission was
exhausting to his elderly wife
and she was ready to head
home. I decided to postpone
Fred’s mental status exam until
the next morning. Now, keep
in mind, this was 1982, when
they were still calling
Alzheimer’s “senility” and
“organic brain syndrome.”
There were no such things as
wired and secured units for the
freedom of persons with
dementia to walk around; there
were no alarms that sounded if
a resident left the unit.
So, back to Fred….8 AM the
next morning, I returned to my
office on the nursing home
unit. The staff nurses reported
that Fred “escaped” the unit
after his wife went home! Fred
was found by the security
guards wandering around the
perimeter of the hospital and
nursing home property.
What I and the nursing staff
did NOT know immediately
upon admission was that Mr.
Fred W. had memory issues.
His family did not reveal this in
the initial interview. Nearly 30
years later, families still
hesitate to share this crucial
information with health care
providers. Why? Fear that
their loved one will be denied
©Dementia Connection LLC™
admission, embarrassment, denial, or
belief that these memory symptoms
are solely due to “old age.”
From the standpoint of Mr. Fred
W., his “escape” made perfect
sense….he was in a strange place and
his wife had left! He went searching
for her; honestly believing he was
doing the right thing. The Mini-Mental
State Exam (MMSE) score I obtained
from his memory assessment was
consistent with the early middle
stages of Alzheimer’s disease.
Because of his brain illness, Fred’s
judgment was affected. But he
“looked” normal.
Denial on the part of Fred’s family
and my decision to postpone Fred’s
memory assessment to the next
morning could have resulted in an
injury or death. Fred was found very
close to a steep embankment! I never
forgot this valuable lesson.
Now what if Fred was still living at
home, and driving? What if his wife
attributed his confusion to “old age”
and did not realize that the memory
loss was the beginning of Alzheimer’s
disease?
There have been new studies in
the past year on dementia and driving.
Early in Alzheimer’s disease, visualspatial perception deficits (judging
distance when driving) occur and
verbal memory (recognizing words on
a road sign) can be affected. A 2009
University of Iowa study published in
the medical journal Neurology
revealed that persons with
Alzheimer’s made 27% more driving
errors than those without Alzheimer’s
disease. The most frequent error
made was that of lane violation.
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O-Opportunities (Lost)
Others may be affected by
the actions or judgments of an
employed person with
cognitive impairment (for
example, a practicing
nurse/physician /financial
planner/bus driver). Errors in
judgment may cost lives or
someone’s hard-earned
retirement savings. It is much
more difficult for families of
confused persons to deal with
tragic results of unintended
behaviors than it is to deal with
the diagnosis. Unfortunate
incidents, as described above,
deny the cognitively impaired
person the opportunity to
safely adjust their activities
with the guidance of health
care providers and retire with
grace and dignity.
The ability to finish
emotional business, repair
“broken or impaired”
relationships with family
members and plan one’s will
are examples of additional
opportunities lost or denied to
the person who has memory
loss.
It is most fair to the person
experiencing the cognitive
changes to deal with the
diagnosis EARLY in the illness.
When this does not occur, the
family must guess at a later
date, what they think the
memory-impaired persons’
health care advanced directives
would have been.
Unfortunately, families dealing
with advanced directives in the
©Dementia Connection LLC™
later stages of Alzheimer’s disease
make these decisions out of guilt,
rather than what their loved one
would have actually wanted. I’ve seen
this result in overly aggressive and
futile care in the later stages of illness.
Families may disagree bitterly over
how care should be handled for Mom
or Dad. Unfortunately, this can occur
to the point where adult children may
even stop speaking to each other. This
is very sad and preventable situation.
A-Atrophy (decreased volume of
brain areas affected by Alzheimer’s
disease)
An electronic publication of the
medical journal Cerebral Cortex on
November 4, 2009 revealed persons
who have the very earliest signs of
memory loss (often preceding
Alzheimer’s or other dementias) Mild
Cognitive Impairment (MCI) exhibit
a decrease in volume in part of the
brain called the “nucleus basalis of
Meynert.” Gray matter brain regions
that are routinely affected by
Alzheimer’s actually decrease in size
(shrink/atrophy). This atrophy relates
to the clinical symptoms of cognitive
decline that occur in Mild Cognitive
Impairment (MCI).
Frontal lobe shrinkage is
significantly associated with an
overall decline in cognitive ability.
Temporal (side of brain) lobe
atrophy causes delayed recall (the
ability to remember something you
already “registered” in your brain).
Keep in mind that this happens in the
EARLIEST stages of memory lossduring Mild Cognitive Impairment,
before Alzheimer’s is diagnosed.
Imagine how much more atrophy
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occurs in the mild, moderate
and severe stages of
Alzheimer’s where symptoms
are obvious.
This Cerebral Cortex
publication research, according
to the authors, establishes for
the first time, the mysterious
link between the parts of the
brain affecting acetylcholine,
our “memory” brain chemical
and brain atrophy. This new
study lends support to two
clinical treatment guidelines
(see References) that are
followed by most geriatric and
geropsychiatric experts on the
management of Alzheimer’s
disease. These guidelines
recommend treatment with
one of the three
cholinesterase inhibitors (the
first category of anti-dementia
medication) in the early clinical
stages of Alzheimer’s disease,
as soon as a person receives
the diagnosis. Early, aggressive
pharmacotherapy with one of
these FDA approved
medications that work on
acetylcholine (Aricept, Exelon,
Razadyne) should not be
delayed. This happens too
often when the patient and
family delay diagnosis.
Namenda (the only current
medication in the second
category of anti-dementia
medications) is added on as a
second medication to work in
conjunction with the selected
cholinesterase inhibitor in
the middle stages of
Alzheimer’s disease. Namenda
is continued through the late
©Dementia Connection LLC™
stage. Aricept has also been
approved by the FDA for use in late
Alzheimer’s disease.
R-Relationships
Family relationships between
couples, parent and adult child, or
siblings can be stressed, shaken or
possibly destroyed by denying and not
dealing with dementia. I have seen
this happen and it is so unfortunate.
There is no doubt that facing
memory loss in a loved one is a
frightening experience. However, if
one attributes memory loss with
impaired functioning to “old age” or to
“old-timers” and minimizes its
seriousness, one can potentially be
risking family relationships.
I’ll never forget two sisters I
interviewed in a geriatric clinic where
I performed Alzheimer’s assessments.
They were both in their eighties.
Mary, the cognitively intact elder, was
outraged that her sister Anne was no
longer helping her with meal
preparation; cleaning the home,
laundry…She raised her voice to Anne
in my presence, calling her “lazy” and
“ungrateful.” Mary had no idea that
Ann was suffering from the classic
symptoms of early Alzheimer’s
disease. I would venture to say there
are many homes where memory
impaired elders are accused of things
they have no control over
whatsoever….I worry and cringe to
think what could happen in an
environment where the family
dynamics are not healthy to begin
with.
I had once to defend a woman in
court, because her property and lawn
were “a disgrace to the community.”
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The judge in that case, learned
about the signs and symptoms
of early dementia, and thanked
me for the information. Eleven
years ago, a colleague of mine,
Pam Haisman RN, MS, wrote
the most accurate portrayal of
the battle families wage when
searching for solutions to the
diagnosis and management of
Alzheimer’s disease. Her book
Alzheimer's Disease:
Caregivers Speak Out clearly
identifies the too-often seen
family struggles experienced.
What happens when all
goes as well as possible: the
family receives the full and
accurate “Dementia Workup”
and prompt “Standard of Care”
treatment with supportive
counseling?
Everyone is on the same
page! Research tells us that
persons suffering from
memory loss actually welcome
getting the diagnosis of
Alzheimer’s disease. They are
usually relieved that they have
found the answer. THEY
instinctively KNOW that there
is something wrong with them!
One cannot try to protect them
by pretending that a problem
does not exist. Everyone is
harmed by not dealing with the
reality of the situation.
T-Treatment
Accurate and timely diagnosis
lead to a level of treatment that
supports the persons affected
with the cognitive loss, as well
as their caregiver, family and
entire supportive network.
©Dementia Connection LLC™
The 2008 California Workgroup
on the Guidelines for Alzheimer’s
Disease Management outlines
categories of action for assessment;
treatment, patient/family education
and support, as well as legal
considerations (see References). The
authors have also developed
recommendations for Alzheimer’s
category-specific care….from the
earliest to the latest stage of
Alzheimer’s disease.
There are four currently used antidementia medications approved by
the FDA (Aricept, Exelon, Razadyne
and Namenda). As most caregiving
families will attest….medication
treatment is important, but care does
not end with solely receiving a
prescription. This is a complex illness,
with many challenges and many
solutions. No two persons’ experience
this illness exactly the same.
My opinion is that management of
Alzheimer’s disease (as well as the less
common other dementias, like vascular,
lewy-body, Parkinson’s and
frontotemporal dementias) is a
combination of art and science.
………………………………………….
SOAR to help someone with
memory loss. Email or hand this
White Paper to them. Please visit my
website’s Resource Page at
www.dementiaconnection.com to
receive the free: I “SOAR” to HELP
Checklist. I also offer free monthly
teleseminars/webinars monthly on
Alzheimer’s and dementia. Signup is
available on
www.dementiaconnection.com
…………………………………………
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JOIN ME and SOAR to
help yourself or
someone else dealing
with memory loss.
REFERENCES
Alzheimer’s Foundation of America
Press Release. Stigma and denial
delay diagnosis of Alzheimer’s
disease by more than two years on
average. March 21, 2006.
http://www.alzfdn.org/MediaCent
er/060321.html
California Workgroup on Guidelines
for Alzheimer’s Disease
Management. State of California.
Department of Public Health.
April 2008.
Summary:
http://www.caalz.org/PDF_files/G
uideline-OnePage-CA.pdf
Full Report:
http://www.caalz.org/PDF_files/G
uideline-FullReport-CA.pdf
Carrillo MC, Blackwell A, et. al.
Early risk assessment for
Alzheimer's disease. Alzheimer’s &
Dementia. 2009, 5(2), 182-196.
Cushman LA, Stein K, & Duffy CJ.
Detecting navigational deficits in
cognitive aging and Alzheimer
disease using virtual reality. 2008.
Neurology, 71, 888-895.
Dawson JD, Anderson SW, et. al.
Predictors of driving safety in
©Dementia Connection LLC™
early Alzheimer’s disease. Neurology.
2009. 72(6), 521-527.
Fillit HM, Doody RS et. al.
Recommendations for best practices in
the treatment of Alzheimer's disease in
managed care. American Journal of
Geriatric Pharmacotherapeutics. 2006. 4,
Supplement A: S9-S24; S25-S28.
Grothe M, Zaborszky L, et. al. Reduction
of Basal Forebrain Cholinergic System
Parallels Cognitive Impairment in
Patients at High Risk of Developing
Alzheimer’s Disease. Cerebral Cortex.
Advance Access published online on
November 4, 2009.
Haisman Pam. Alzheimer's Disease:
Caregivers Speak Out.
Fort Myers: Chippendale House
Publishers. 1998. ISBN 0-9662272-0-4
Jack CR, Shiung MM. et. al. Brain atrophy
rates predict subsequent clinical
conversion in normal elderly and
amnestic MCI. Neurology. 2005. 65(8),
1227-1231.
Solomon PR & Murphy CA. Should we
screen for Alzheimer's disease? Geriatrics.
2005. 60(11), 26-31.
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