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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.
What effect can Alzheimer's disease have on a caregiver?
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.
How important is early detection and diagnosis of
Alzheimer's disease?
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.
Can Alzheimer's patients be cared for at home?
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.
Is training important for an Alzheimer's caregiver?
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.
Are caregiver support services helpful?
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.
What can a caregiver do when home care is no longer
enough?
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."
Are caregivers being recognized for their work?
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.
Where can I go for more information?
The Alzheimer's Association, a national organization
with chapters across the country, can be reached at 800-272-3900, or on
the Internet at 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: www.caregiver.org)
and the National Family Caregivers Association (800-896-3650; website:
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 on the
Web at
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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