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easing the burden: Parkinson Society Canada: info for
long-term-care health workers
an html version (27k) of the original PDF file (2,200k)
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What You Need to Know About Parkinson’s
Information for Health Care Staff at Long-Term Care Facilities
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* Introduction
* What is the most important thing you need to know about
Parkinson’s?
* What are a Parkinson’s resident’s main mobility problems?
* What else can I do to make a difference in the life of a
resident with Parkinson’s?
* Information is power!
* Contact information and assistance
* Tip Sheet
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Introduction
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As a person working in a long-term care facility, you know how
challenging your work day can be. You have a hectic schedule and
there are many demands on you - including a large caseload and
the emotional highs and lows that come from dealing with frail
residents with a variety of illnesses.
From time to time, you will be dealing with residents who have a
neurological disorder called Parkinson’s disease. Your interest
in learning more about the unique characteristics of this disease
will help you understand and better meet the special needs of
your Parkinson’s residents and their families. People living with
Parkinson’s have a shortage of a chemical called dopamine so
messages sent from the brain are not processed properly. They may
have tremor, stiffness, slowness and difficulty with fine
movements, impaired balance, soft speech, and little facial
expression.
They will probably suffer from sleep disturbances, and be very
tired during the day as everyday tasks take longer. They will
probably be constipated and may be depressed. It is important to
note, however, that symptoms and responses to medication differ
greatly in each person with Parkinson’s.
By the time you meet residents with Parkinson’s, they may have
lived with it for 15 to 20 years, gradually losing their ability
to live independently. Most will have been cared for at home by a
partner/spouse or other family member. But, because the disease
is progressive, they now require more formal care.
Parkinson’s is a neurological disorder. People with Parkinson’s
can at times lack facial expression. The grim, set or ‘masked’
look is a Parkinson’s symptom - stiffness or rigidity affects
muscles, including facial ones. As the disease progresses, it can
result in slowed thought processes and responses or speech
difficulties. Parkinson’s can cause the voice to lose volume and
become monotone. Also, saliva can collect in the front of the
mouth, resulting in drooling.
It is important to stress that Parkinson’s is not a mental
disease, although 30 percent of people with Parkinson’s will
eventually develop dementia. Residents with Parkinson’s may have
been admitted to your facility because they have developed
dementia and could no longer be cared for safely at home.
Problems caused by Parkinson’s can be frustrating and
embarrassing for your resident and challenging and exhausting for
you. People with Parkinson’s say their life can be lonely and
boring because they often feel trapped in their own bodies.
Please remember Parkinson’s residents are not being unresponsive
or antisocial. They just need a little extra time to respond.
"I just got out of my chair on
my own five minutes ago. Now I
can’t. I’m afraid the staff
think I’m simply being
stubborn. But the reason I
can’t move is that my
medication has stopped
working. I never quite know
when this will happen. I want
to be independent and do
things myself but sometimes I
do need staff help."
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What is the most important thing you need to know about
Parkinson’s?
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Medication is the most effective treatment for Parkinson’s.
Symptoms differ in each person so treatment is geared to specific
individual needs. To maintain a constant drug level in the
bloodstream, medication must be given on time - according to the
schedule set by the treating physician. It is based on what has
worked well over years in a home setting. Parkinson’s can be
unpredictable.
Sometimes, a person is able to move one minute, then suddenly
he/she cannot take a step. This is called freezing and it can
last from 30 to 60 seconds or more. The resident living with
Parkinson’s is not being stubborn - difficulties are due to
medication timing.
We recognize your nursing teams have tight schedules with
established times for the administration of medication. For
maximum benefit, medication for a resident living with
Parkinson’s will most often have to be administered at times
other than on general medication rounds. Perhaps your nursing
teams can talk about ways medication can be scheduled at
different times for residents with special needs.
If you work together with Parkinson’s residents and their
families - who best understand their condition and responses to
medication - it will definitely ease your workload and improve
their quality of life.
Find out what works best. For some residents, medication takes
about an hour to ‘kick in’. So activities such as dressing and
eating can be scheduled around this timing. Remember: the more
mobile a resident is, the more he/she can do; this will
definitely ease your workload.
Side effects from Parkinson’s medication may vary from person to
person. Sometimes the drugs make residents too mobile, with
writhing movements. If a resident starts new drugs he/she can
feel nauseated or dizzy for the first weeks. In late stage
Parkinson’s, drug side effect will most often be psychiatric
(hallucinations, vivid dreams). It’s important to watch for these
side effects, as the medication may need adjustment. Swallowing
can be a major problem for a person living with Parkinson’s so
make sure medication is always accompanied by a glass of water.
Residents should not break, crush or chew controlled-release
tablets unless instructed to by their physician.
Medication management is the most important part of controlling
Parkinson’s symptoms. As the disease progresses, timing of the
medications becomes ever more critical.
Charting symptoms and side effects is recommended if you observe
a change in the resident’s abilities.
"My face muscles don’t work
automatically anymore. I have
to tell myself to ‘smile’ or
else I look grouchy or
disinterested all the time. I
don’t always respond quickly
to what you’re asking. I don’t
have a hearing problem. My
thought processes have slowed
down so it takes me longer to
answer questions. So please
ask me how I’m feeling because
I still enjoy conversation and
your company."
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What are a Parkinson’s resident’s main mobility problems?
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As the disease progresses, there can be problems with balance and
posture. However, exercise is important, so encourage the
resident living with Parkinson’s to move around, especially when
he/she is rested.
Be aware that "freezing" - a sudden inability to move, especially
when walking or getting out of a chair, can be dangerous and can
cause a person with Parkinson’s to fall. Do not try to push or
move the resident. Find out from the family or ask the resident
what visual or sensory cue will get him/her moving again.
You might consult with a physiotherapist for tips to help the
resident overcome freezing episodes. One trick is to place your
foot or an item on the floor in front of the person and ask them
to step over it to get him/her moving again. Playing music or
counting with a steady beat can also encourage movement in some
people.
Here are some suggestions you can offer a resident living with
Parkinson’s to help him/her move around more easily and safely:
* lift feet, heel first, to avoid shuffling and falls - a
slight foot drag is common to Parkinson’s
* avoid prolonged standing with feet too close together -
could increase the risk for falls
* use appropriate walking aids such as a cane or walker - if
balance is a problem
* keep hands free when walking - use shoulder straps, fanny
packs or walker baskets
* wait a minute before you first get out of bed or up from a
chair - place feet directly under the knees and stand up
firmly to overcome the pull of gravity
* wear proper walking shoes - rubber or crepe-soled shoes are
not recommended because they grip the floor and may cause
tripping
* avoid pivot turns - walk through turns slowly instead
Another important thing to understand about Parkinson’s is that
some residents can have "ON-OFF" episodes. "ON" describes ability
to move when medication is working. "OFF" refers to inability to
move or function because medication is not working. These may be
unpredictable and are not always related to the timing of
medication. They can immobilize a resident from minutes to hours.
"ON-OFF" episodes are a characteristic of late stage Parkinson’s.
The resident is not being stubborn - they have no control over
these episodes.
Residents with Parkinson’s might benefit from any programs you
have that specifically address individual safety.
"I worry constantly about
falling and breaking bones. I
want to keep mobile. When my
medication is working, I can
move around safely with a
walker, hand rails and other
aids."
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What else can I do to make a difference in the life of a resident
with Parkinson’s?
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* ask the resident with Parkinson’s when it is best to give
medication - with a meal or on an empty stomach or with a
few crackers … this might reduce nausea or help with the
absorption of the medication … medication given before a
meal allows a Parkinson’s resident to eat without help,
reduces spilling and the risk of choking, improves
nutritional intake and socialization with other residents
* encourage socialization - a resident with Parkinson’s often
feels isolated … find ways to include him/her in the
facility’s leisure recreation programs (talk to a recreation
therapist, someone from pastoral care, or a visiting
volunteer to help with this) … this could include providing
a program such as Tai Chi - a form of exercise that aids
flexibility and balance and promotes relaxation … exercise,
especially walking and stretching, is essential therapy for
someone with Parkinson’s
* look for signs of depression - common for people living with
Parkinson’s … this could include anxiety, anger, a change in
personal habits, withdrawal … seek help from a social worker
or someone from pastoral care if the condition persists
* improve communication - encourage residents to sit upright,
take a deep breath and “think loud or “think shout” when
they speak…make sure the resident with Parkinson’s always
has cold water to drink or chipped ice to suck on … this
relaxes the muscles of the jaw and tongue … ask questions
which require a simple ‘yes’ or ‘no’ … be patient - you will
get an answer … if a speech therapist is available, he/she
can offer practical communication tips … drooling can be a
problem so remind the resident to swallow … encourage
singing, as this helps to project the voice
* always be sure the resident has taken Parkinson’s medication
prior to a meal, to allow optimum nutritional intake, safe
swallowing and mealtime pleasure
* give the resident time to eat slowly - failure to swallow
properly can lead to choking (a symptom of swallowing
problems) … have the resident sit in an upright position
when eating and remind him/her to swallow … consult with a
dietician (who might recommend easy-to-swallow foods such as
thickened drinks) ... special utensils or an anti-skid mat
beneath the plate may help ... a spoon rather than a fork
will make eating easier … ensure the resident has an iced
drink (with a flexible straw) close at hand … frequent sips
between bites of food will also aid swallowing … a rest
period before a meal can help … constipation is very often a
problem for most nursing home residents - especially with
Parkinson’s - so the diet should include enough fluid and
fibre ... report prolonged constipation to the treating
physician
* talk to the resident’s family/friends regularly - they can
help provide insight into his/her personality and
preferences … Parkinson’s can feel like a long, gradual
sense of loss for residents and their loved ones so it is
important to stay connected with those who understand … find
out if family members are attending Parkinson’s support
groups and ask them to pass along information to help you
and the resident better understand and cope with the unique
challenges of Parkinson’s
janet paterson: an akinetic rigid subtype, albeit primarily perky, parky
pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask]
my newsletter: http://groups.yahoo.com/group/newvoicenews/
my website: http://www.geocities.com/janet313/
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