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What About My Dignity?
O ne of the most popular topics of discussion among our early-stage clients is about
the treatment they receive from their physicians and other health care professionals.
Although some are pleased with their medical care, there are many more who have
become quite disillusioned with their doctors and the quality of care that they provide. In fact,
the most common complaint we hear is about the insensitivity of doctors who repeatedly ignore
their early-stage patients and talk mainly to their caregivers, even though they are sitting side by
side. As one client commented, “It feels like I don’t even exist. I guess they think we’re not capable
of understanding what they’re talking about because we have this diagnosis of dementia.”
What makes this issue even more surprising is that the majority of the medical professionals
our early-stage clients are referring to are those who actually specialize in dementia care. Is
it really too much to expect that these professionals should be attuned to the importance of
maintaining their early-stage patients’ dignity?
In recognition of this growing problem, the Alzheimer’s Association has compiled “Principles
for a Dignified Diagnosis,” the first statement of its kind written by people with early dementia
which contains their insights on how to improve the experience of getting a diagnosis. These
principles include the following:
-
Talk directly to me, the person with dementia.
I am the person with the disease, and though
my loved ones will also be affected, I am the
person who needs to know first.
- Tell the truth. Even if you don’t have all the
answers, be honest about what you do know
and why you believe it to be so.
- Test early. Helping me get an accurate
diagnosis as soon as possible gives me
more time to cope and live my life to the
fullest potential, and to get information about
appropriate clinical trials.
- Take my concerns seriously, regardless of
my age. Age may be the biggest risk factor
for Alzheimer’s but Alzheimer’s is not a normal
part of aging. Don’t discount my concerns
because I am old. At the same time,
don’t forget that Alzheimer’s can also affect
people in their 40s, 50s and 60s.
- Deliver the news in plain but sensitive
language. This may be one of the most
important things I ever hear. Please use
language that I can understand and is
sensitive to how this may make me feel.
- Coordinate with other care providers. I may
be seeing more than one specialist — it is
important that you talk to my other providers
to ensure you all have the information so that
changes can be identified early on and that I
don’t have to repeat any tests unnecessarily.
- Explain the purpose of different tests and
what you hope to learn. Testing can be very
physically and emotionally challenging. It
would help me to know what the purpose of
the test is, how long it will take and what you
expect to learn from the process. I would also
appreciate the option of breaks during longer
tests and an opportunity to ask questions.
- Give me tools for living with this disease.
Please don’t give me my diagnosis and then
leave me alone to confront it. I need to know
what will happen to me, and I need to know
not only about medical treatment options but
also what support is available through the
Alzheimer’s Association and other resources
in my community.
- Work with me on a plan for healthy living.
Medication may help modify some of my
neurological symptoms, but I am also
interested in other recommendations for
keeping myself as healthy as possible through
diet, exercise and social engagement.
- Recognize that I am an individual and the
way I experience this disease is unique.
This disease affects each person in different
ways and at a different pace. Please be sure to couch your explanation of how this disease
may change my life with this in mind.
- Alzheimer’s is a journey, not a destination.
Treatment doesn’t end with the writing of
a prescription. Please continue to be an
advocate — not just for my medical care but
for my quality of life as I continue to live with
Alzheimer’s.
I think the time has come for all professionals who work with people who have dementia to treat them with the
dignity and respect they deserve. It may take a little longer, but it’s clear that they are entitled to nothing less!
If you have an early-stage diagnosis, or you are the caregiver for someone with early dementia, and you would like to know more about
advocacy opportunities, please contact me at 646-744-2911 or send an e-mail to pmichaud@alznyc.org.
— Paulette Michaud
Director, Early Stage Services
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