Welcome to the Exceptional Nurse Blog! I am Donna Maheady, EdD, ARNP, founder of www.ExceptionalNurse.com, the nonprofit resource committed to inclusion of people with disabilities in nursing. We facilitate inclusion of students with disabilities in nursing education programs and foster resilience and continued practice for nurses who are, or become, disabled. We celebrate abilities, share resources and examples of nurses with disabilities who work with and without accommodations.
The nurse with dementia: Where do we go from here?
Gail Weatherill, RN, BSN
The British Royal College of
Nursing (RCN) recently shocked many by passing a resolution that nurses with dementia should be supported to continue practicing as long as possible. Their reasoning
was that most fears of these nurses constituted discrimination based on old
prejudices and misconceptions.
The public, including many
nurses, assumes that individuals are “suddenly struck incompetent” at the time
of diagnosis. In fact, cognitive changes usually occur in minor, subtle ways
over a matter of years.
There are many individuals with
dementia who continue to lead productive lives for years after their diagnosis.
Like those with other disabilities, they find ways to adapt their routines to
compensate for a faulty memory. They write books, give talks to raise
awareness, and weigh in on policy matters affecting those with dementia.
To better understand the unique
challenges a nurse with dementia faces, I spoke with Frani Pilgrim, RN.Frani
is an American nurse with Early Onset Alzheimer’s Disease (EOAD). Early Onset
Alzheimer’s Disease affects those under 65 years old. It is increasingly more
common among people in their thirties, forties, and fifties.
In January of 2016, Frani Pilgrim
was busy in the Allergy and Asthma practice where she served as a nurse specialist.
At 56 years old, she relished the “dream job” she had excelled in for the past
ten years. But when she could not master the new electronic medical record
system, both she and her coworkers began to wonder why.
Frani was caught off guard one
day when her beloved physician mentor said to her, “Frani, you’re not yourself.
Something’s wrong. We need to find out what.” With four generations of EOAD
behind her, Frani suspected her fate even before neuropsychiatric testing
confirmed it. Having watched her grandfather, father and a brother live with
EOAD, Frani fully understood the weight of her diagnosis.
A year and a half later, Frani’s
life has changed dramatically. Because of concerns about liability, she chose
to resign her position at the time of her diagnosis, saying, “How would a
family feel if I made a mistake, and they found out I have Alzheimer’s?”
Exiting her nursing practice was “the hardest thing I have ever had to do.
Nursing is different from other careers. It’s not a job. It’s who we are.”
Frani experienced a period of
deep despair, “I spent one month in bed, crying.” “Nursing was everything to
me, but I felt I had no choice but to give it up.” Over time, Frani moved
through her acute grief and began to see a silver lining to her circumstances.
Away from the stress and physical demands of nursing, her symptoms improved.
With time on her hands, she focused on home and family relationships which
deepened in a positive way.
“I’m a survivor”, Frani explains.
“I’ve survived breast cancer, cervical cancer, and a near-death experience with
asthma. But Alzheimer’s is different. You know there’s no going back.” Frani
underwent driver’s testing at the Division of Motor Vehicles which she passed
with flying colors. She plans to return once a year for testing, saying, “I
know it’s not always clear to a person what their own degree of impairment is.
I don’t want to take any chances.”
Today, Frani keeps physically
active and is quick to share her experience with others. She recently enrolled
in a clinical trial which gives her great comfort. “Even if it doesn’t help me,
maybe it will help my son. I look at him and his physical resemblance to his
grandfather, and I pray a lot.”
When I asked Frani what she most
wanted her fellow nurses to know about her illness, she said without
hesitation, “That people don’t become idiots when they are diagnosed.” She
recounts the pain of family prejudice, including those who would no longer
allow her to babysit her grandchildren once they learned of her diagnosis.
Alzheimer’s Disease and related
dementias now affect over 5 million people in the US alone.
Great Britain, Australia, Canada and Asia all face the far-reaching
socioeconomic effects of dementia in an aging population as well as those with
EOAD. As the average age of clinicians increases, the question of what to
require of nurses with dementia is only due to become more common. Great
Britain has chosen inclusion of nurses with dementia.
Additional questions arise such
as, is a nurse with mild dementia a greater risk to patients than a stressed,
exhausted bedside nurse? What about the nurse with diabetes whose cognition can
drop with a low blood sugar? Or, a nurse with Post Traumatic Stress Disorder faced with a trigger? Are there teaching and some
management positions that nurses with EOAD might fill?
A knee jerk reaction of, “That’s
crazy! Patients must be protected,” may have to be weighed with the reality
of mild dementia with minor lapses and an aging nursing workforce. One thing is
for certain; this question will only arise more frequently in the years to
come. It is already upon us and in need of answers.
Thank you Gail for shedding light on this important topic!
Please feel free to weigh in on Gail's point of view. With thanks, Donna About the author:
A practicing nurse since 1980,
Gail Weatherill specializes in the care of people living with dementia. A
graduate of the University of Virginia, she has obtained board certifications
in Alzheimer’s education and care. Her years in critical care, home health and
long-term care in the US and in Saudi Arabia influence her far-reaching
perspective on nursing care. Gail resides in Charlottesville, VA where she can
easily travel to her state capitol and the United States Capitol for advocacy
work for dementia care and safe staffing ratios. You can find her at the site
named for her professional alter ego, The Dementia Nurse ™. http://thedementianurse.com