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There are an estimated four million Americans
with Alzheimer's disease. That number is expected to grow
dramatically in the coming decades, with an equal increase
in the number of individuals who will become their caregivers.
While researchers continue to search for ways to reverse and
cure Alzheimer's disease, we must provide caregivers with
the same love, compassion and support that they give to their
Alzheimer's patients.
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Q. What effect
can Alzheimer's disease have on a caregiver?
A. Alzheimer's
disease affects more than just the person who has been diagnosed.
In most cases, it also impacts the family members and
friends who become caregivers. Caring for an Alzheimer's patient
can cause emotional, psychological, and physical problems.
As the disease progresses, caregivers often find themselves
cut off from friends and regular social activities. Further,
even the most dedicated caregivers will struggle with guilt
over feelings of resentment or frustration that arise as they
cope with a loved one's difficult behavioral changes. Alzheimer's
disease frequently poses financial problems for caregivers
as well. Studies on the economic impact of the disease have
found that the average caregiver with a full-time job will
miss more than three weeks of work a year, and that one fifth
will quit their jobs altogether to provide full time care.
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Q. How important is
early detection and diagnosis of Alzheimer's disease?
A. Of all
the things that caregivers can be taught, the first and perhaps
most important is to identify Alzheimer's disease as early as
possible. Early warning signs include:
- Gradual loss of short-term memory
- Mood or personality changes
- Problems finding or speaking the right word
- Inability to recognize objects
- Forgetting how to use simple, ordinary things,
such as a pencil
- Forgetting to turn off the stove, close windows,
or lock doors
When Alzheimer's disease is diagnosed in its
earliest stages, patients can still contribute to their own caregiving
strategy (e.g., address financial matters, draw up a will or appoint
powers of attorney, decide about participating in experimental
therapies). Early detection and diagnosis of Alzheimer's disease
can substantially lighten a caregiver's burden.
Q. Can Alzheimer's
patients be cared for at home?
A. Most Alzheimer's
patients-particularly those in the early and middle stages of
the illness- can be cared for at home instead of at nursing homes
or other facilities. More than half of all diagnosed Alzheimer's
patients continue to live in home settings, and 80 to 90 percent of
these rely on family and friends for care.
Q. Is training important
for an Alzheimer's caregiver?
A. A major
obstacle to quality home care is a lack of adequate training for
caregivers. The challenges posed by a patient with Alzheimer's
disease, such as personality and behavioral changes, can baffle
the unprepared caregiver. As caregivers learn about Alzheimer's
disease and adapt to the afflicted person's behavior, they will
learn how to customize a patient's living environment, thereby
making the caregiving experience less difficult and stressful.
Q. Are caregiver support
services helpful?
A. Caregivers
who take advantage of programs such as support groups, adult day
care and respite care (a temporary nursing home-like service where
patients may stay for a limited number of days) keep their Alzheimer's
patient at home longer than those who do not. They also tend to
feel healthier and find caregiving more rewarding than those who
do not use support services.
Q. What can a caregiver
do when home care is no longer enough?
A. At some
point, most caregivers confront the possibility of no longer being
able to provide home care for a person with Alzheimer's disease.
Residential options for these patients fall into three broad categories:
- Independent living facilities
- Assisted living facilities
- Nursing homes
Another housing choice for Alzheimer's patients
is the Continuing Care Retirement Community. These comprehensive
facilities offer all of the above residential options "under
one roof."
Q. Are caregivers being
recognized for their work?
A. There is
no doubt that caregivers are receiving increased attention, support
and recognition, and a growing number of researchers and organizations
are realizing that caregivers have much to offer the larger society.
One suggestion is that former caregivers be incorporated into
the health care network, so they can share their hard-earned skills
and expertise with those who are new to the disease.
Q. Where can I go for
more information?
A. The Alzheimer's
Association, a national organization with chapters across the
country, can be reached at 800-272-3900, or on the Internet at
http://www.alz.org.
The Alzheimer's Disease Education and Referral Center can be reached
at 800-438-4380. Two additional resources are
The Family Caregivers Alliance (800-445-8106; website: http://www.caregiver.org
and the National Family Caregivers Association (800-896-3650;
website: http://www.nfcacares.org.
Perform a MEDLINE
search on Alzheimer's Disease Caregivers
This Patient Education Forum (and the AGS Newsletter
in which it was originally published) was supported by an unrestricted
educational grant from Forest Pharmaceuticals, Inc. It was
written by the same team of geriatrics experts who developed "What
If It's Alzheimer's?" a public forum held at the 1999 AGS
Annual Meeting in Philadelphia.
For information regarding dementia or delirium,
you can ask your doctor, or refer to The American Geriatrics Society's
Complete Guide to Aging & Health. (To obtain a copy, check
your local library, or call 800-677-9944, for a 35% discount through
the AGS.)
The Alzheimer's Association can be reached at
800-272-3900, or, if you have access to the Internet, contact
them on the World Wide Web at http://www.alz.org
Alzheimer's disease Education and Referral Center
can be contacted at 800-438-4380; or by email at: adear@alzheimers.org
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