The Caregiver Role
Parkinson's disease does not affect just one person—family and friends all have
to 'live' with Parkinson's disease too. Just because you are a partner or relative of somebody
with Parkinson's does not mean that you will necessarily be their caregiver. Being a caregiver
can be physically and emotionally challenging, so you should not feel guilty if you are unable
to take on this role. As an alternative, it may be worth considering using voluntary or paid help.
Becoming a caregiver can be associated with very mixed emotions. Feelings of
resentment about the loss of your privacy and frustration at believing you have
no control over what happens may coexist with love for the person with
Parkinson's disease and the satisfaction you derive from helping them.
Importantly, life doesn't stop after Parkinson's disease is diagnosed,
it just changes, and certain adjustments are required—trust that you may be stronger
than you think and can adapt and cope better than you may expect. As a caregiver, how
you can best provide understanding, emotional support, and
physical help will depend on what you and the person for whom you are caring
decide on together.
Who are caregivers?—some general characteristics
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In general, caregivers are spouses or adult children, typically around 60 years of age*
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In America alone, it is estimated that there are 25 million caregivers; one in four American
households includes an adult providing care for someone over 50 years of age†
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70% of carergivers are women‡
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60% of carergivers are over the age of 65, and almost 25% are over
the age of 75‡
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73% of caregivers are a spouse or partner of the person with
Parkinson's disease‡
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In 78% of cases, the caregiver lives with the person being cared for‡
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The extent of the 'caring' is varied, with a quarter of caregivers helping the person with
Parkinson's disease with five or more aspects of personal care such as dressing and undressing,
going to the toilet, turning over in bed, and eating and drinking‡
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