|
NYC Early Alzheimer's Conference, 2nd Annual - 7 December 2001
Member of Panel on "Speaking Out"
Thaddeus Raushi, Ph.D.
Thank
you for the opportunity to share some thoughts with you this morning.
[I will briefly describe my personal experience with Alzheimer's
disease and then present several issues toward enhancing the process
of diagnosis and
living with the disease.] For this presentation I will use the
terms Alzheimer's and dementia interchangeably.
In
1996, while my wife Sylvia and I were providing care to aging
parents and just two years after earning my PhD to enrich my college
counseling and teaching career, I faced the diagnosis of cancer,
a rare and incurable lymphoma called Waldenstrom's macroglobulinemia.
I've had chemotherapy twice and though currently in wait and watch,
I am thankful for these five years. In 1997 I had an emergency
craniotomy for a brain tumor. Though I have some minor losses,
seizure activity, and the tumor is recurring, I am quite stable
and again have much for which to give thanks. Following the surgery,
unable to do well the counseling, teaching, and faculty work I
had done for over twenty years, I chose an early retirement. Cognitive
problems continued to persist. Then in 1998 I was diagnosed with
probable
Alzheimer's. What I thought had been "burn out" in my
work I learned was not "burn out" at all but disease.
What I thought was mental laziness when unable to follow counseling
sessions or committee meetings, when I couldn't retain advisement
information or a simple set of instructions, when I would forget
people, was not mental laziness at all, but a dementia. Unwanted,
unimaginable, unacceptable, yet a diagnosis that made some sense
out what was happening in my life.
Three
times I was given opportunity to reassess life's direction, face
mortality and self-worth, and recapture meaning for living. The
third time, though, felt so critical since what was being stolen
away by the Alzheimer's was a core and precious part of me, the
capacity to think.
Through
this reassessment, what I have learned is to live each day to
the fullest, thankful for that day, thankful for the wonderful
support of my precious wife Sylvia, of family and friends, of
doctors and support groups and the Alzheimer's Association. I
learn to live celebrating and using the capabilities I have each
day, rather than bemoaning what I've lost or will not have in
the future. Instead of seeing myself as a victim, I see myself
as an "Alzheimer's survivor", living each day fully
aware of the disease and its progression, yet always focused on
doing the best I can...with what I have...at any given time.
There
are seven issues I would offer for your comment. My statements
will be brief due to time limitations, though I will certainly
respond later if desired.
The first issue:
There generally exists, it appears, a lack of understanding by
doctors, by other health professionals, and by organizational
systems about the nature and characteristics of "early"
Alzheimer's.
**I'm
so often surprized at how many doctors and other health care professionals
remain ignorant of current information about "early"
Alzheimer's. There needs to be change.
The second issue:
Words we use to describe Alzheimer's and people with the disease,
are primarily negative, depersonalizing and emotion-laden labels.
Such descriptions debilitate, rather than heal. More positive
and unbiased labeling is needed within the medical, health service,
and legislative communities.
**Alzheimer's is often described as a "death sentence"
and the diagnosed individuals as "victims". I, and many
others in early stage, do not live in "the doom of death",
or as "victims" stripped of all capabilities and competencies.
Yet that is what most descriptions and labels imply. Labels need
changing.
Issue three:
Effective referral of patients by doctors to the Alzheimer's Association
is important. Closer working relationships between many doctors
and Associations may enhance such referral.
** While medications help, support services are often the key
to how well people live with the disease. Doctors are key influences
in patients obtaining such support.
The fourth issue:
Better access is needed to social security disability for people
with an early Alzheimer's diagnosis.
** I know first-hand the unwhieldy, extended, and costly experience.
I know of misinformation provided by professionals in the system.
I know how in only minutes of a face-to-face contact with an Administrative
Judge the
problem was understood. I am not alone in this experience. Not
only can the disease be demeaning and overwhelming, but so too
can the system.
Issue number five:
Research today primarily focuses on cure, medications, and search
for cause. While these emphases are highly important, I would
propose additional research efforts in rehabilitation.
** The support services, treatments, and therapies that increase
an individual's ability to live with the disease, to adapt and
to rebuild through compensations, are rehabilitative tools. Research
into finding the most effective tools would be of great benefit
and would also help lead to services that span the whole progression
of the disease.
The sixth issue:
There are serious problems today regarding the recruitment and
retention of nursing personnel, especially in nursing facilities.
This has direct and serious implications for those of us with
early Alzheimer's, as we face the future.
** It seems that as a society we must in some way assess our values
and how these values connect to our financial resources. Salary
discrepencies between, for example, professional health care providers
and professional athletes, raise such value questions. We may
need to address the larger picture behind the nursing shortage
problem.
My last issue for consideration:
Advancements in knowledge about Alzheimer's, in diagnostic techniques,
and about medications encourage early diagnosis. At the same time
severe, negative insurance coverage implications discourage diagnosis,
precisely when medication and services might be most helpful.
** A serious dilemma that cannot be ignored. Addressing this issue
before the large onset of baby-boomers into older years may be
wise.
I look forward to talking with you. Thank you for listening.
|
