Tracie Thoms - Fisher Center for Alzheimer's Research Foundation

Emotional Stress of Caregiving
Q36. Using a scale from 1 to 5, where 1 is not at all stressful and 5 is very stressful,
how emotionally stressful would you say that caring for your [relation] is/was for you?
Base: 2009 All caregivers (n=1,480)
Not at all Stressful
1 2 3 4
Very Stressful
5
25% 22% 22% 14% 17%
% Highly Stressed (4-5)
Caregivers of Recipient Age 18+
2004 (n=1,247) 2009 (n=1,307)
35% 31%
Caregiving. “They need solutions so they can be healthier
and perform better.” Getting in and out of beds, chairs and
other sitting furniture was the most common task, with
personal care tasks a close second (getting dressed, bathing/
showering, etc.).
In part because so many unpaid caregivers work outside
the home, as well, caregiving was rated as a high or medium
burden by 51% of respondents. Not surprisingly, some 35%
of respondents said they rely on paid caregivers to help out,
while 66% relied on other unpaid caregivers.
Just over half of responding caregivers reported that their
care recipients live in their own homes, while about 29% live
with the care recipient. Those who reside with their loved ones
were more likely to have a household income below $50,000
annually (38%, vs. 23% in higher-income households), which
points to the possibility that financial concerns drive the
decision to live with the care recipient in many cases.
The stress of caregiving is a factor for many caregivers,
too. Although 57% report that their health is excellent or
very good, 17% report it as fair or poor—compared to 13%
of the general adult population. The longer caregiving goes
on, the more of a toll it takes; 23% of those who have been
providing care for 5 years or longer report fair or poor health.
Of course, stress itself is a factor in health, and 31% of
caregivers report feeling very stressed by their situation.
But even with the recent economic decline, caregivers are
not reporting a huge hit to their own finances related to
caregiving. Only 15% reported a strong financial hardship
because of providing care.
The Need for Information
Certainly one of the keenest needs any unpaid caregiver
has is for information—where to turn for help, what to
do in an emergency situation, how best to help their loved
ones, etc. Only 19% of respondents reported receiving
formal caregiving training, while more than threequarters
(78%) would like more help or information about
at least one of 14 vital caregiving topic areas identified in
the survey.
For getting that information, caregivers are likely to turn
to two sources: their health care providers and the Internet.
Among respondents, 36% said they’d turn to their health
care providers, and 25% would opt for the Internet.
Technology is also playing an increasingly larger part
in caregiving. Nearly half (45%) of caregivers reported
using some type of technology in the care of their loved
one, with electronic organizers and calendars leading the
way at 24%, and emergency response systems following
at 12%. Close behind were devices that transmit health
information to a doctor’s office automatically, at 11%, and
home-based electronic systems that transmit alerts about
safety problems (such as falls or wandering) to a caregiver
or dispatching system.
Looking Ahead
With emerging technologies now being deployed or soon
on the way, there is help for unpaid caregivers that simply
was not available before. The ability to connect with needed
support via the Internet is obviously a huge factor, but other
personal technologies, including GPS locators to help with
the wandering problem, alert systems that can be set to
monitor potential issues for Alzheimer’s patients, and online
health records should help take the load off a group of people
who are taking an enormous load off our overburdened
health care system: America’s caregivers. You can download a
copy of the report at www.caregiving.org. ■
summer 2010 www.ALZinfo.org 17