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Family & Friends
Caring for Someone with PPA: Reaching Out and Getting the Help
You Need
While Alzheimer’s disease strikes a majority of people in
their later years, primarily age 65 and over, this fact tends to
overshadow those who become affected by dementia at an earlier age.
As you learned in an earlier section of this booklet, Primary Progressive
Aphasia (PPA) typically strikes people in their 50’s and 60’s.
The early age of onset presents patients and families with unique
issues and stresses.
Due to the rarity of PPA, you may have had difficulty obtaining
an accurate diagnosis. Once that diagnosis is obtained, there is
the task of finding as much information as possible about PPA. At
present, there are few resources available. Much of the material
provided to caregivers, families and friends of patients is directed
toward an older population. Additionally, the programs and services
have been geared to meet the needs of that population.
How will PPA affect my friend or family member’s job?
Employment is often the first issue that must be addressed with
someone who has been diagnosed with PPA. A professional person in
their 50’s and 60’s is typically at the peak of their
career or just approaching retirement, perhaps not ready financially
or prepared emotionally to stop working. They may not have finished
building their “nest egg” for retirement and may have
expenses—such as their children’s education—which
rely on those additional years of employment.
- Since language and verbal skills are essential for most jobs,
the need to terminate employment is inevitable and planning for
that is necessary.
- Immediate application for social security disability should
be completed, although navigating one’s way through this
bureaucratic system can be daunting. The Alzheimer’s Association
has a Disability Documentation Kit which may make your passage
a little easier. They can be reached at 1-800-272-3900. If the
application for social security is denied, work with your physician
to clearly document the diagnosis and advocate on your behalf
by appealing the decision. After receiving social security disability
benefits for two years, persons under 65 years of age are eligible
for Medicare.
What happens after my family member or friend with PPA is no
longer employed?
One of the most common difficulties that arises following termination
of employment is finding something valuable to do with the time
once spent working. The well spouse may need to continue or return
to working outside the home, perhaps seek employment for the first
time. The person diagnosed with PPA is experiencing a tumultuous
role change from that of an independent, self-sufficient person
to that of someone who is becoming increasingly dependent on others.
Adult day services programs which have proliferated in number and
may provide dementia specific care, tend to focus their efforts
on older adults with memory loss. Often, a PPA patient and family
feel uncomfortable with this type of a setting. However, persons
with PPA have much to contribute and with proper guidance and supervision
can remain active in a variety of areas. This takes creativity and
perseverance on the part of families. Contacting your local Department
of Rehabilitation Services/Department of Human Services is the first
step. Call 1-800-275-3677 for the office nearest you.
What about the family?
There are also unique family issues due to the younger age at which
PPA typically occurs. Developmentally, PPA occurs at an age where
a chronic illness of this magnitude is unexpected. The well spouse
may have the stress of being pulled between work and family, may
also be at the peak of their career and/or have young or adolescent
children requiring their attention and care. Additionally, these
children are experiencing the loss of their parent as they once
knew him or her and will need ongoing emotional support and attention
as they grieve this loss. Watch for signs of extreme behaviors:
withdrawal, apathy, poor school performance, or increased aggression.
It may be helpful to seek a counselor experienced in family therapy
to give children a safe place to express their feelings and help
the well spouse in their new role of single parent. Recognize, too,
that the loss of one’s relationship with a spouse to this disease
over a gradual period of time can raise many different emotions:
confusion, anger, guilt, and sadness, to name a few. The role of
partner becomes that of caregiver. It is important to remain in
touch with the emotions that can arise and seek counseling for support
and assistance in coping as needed.
Related Information
Introduction to PPA
Diagnosis
Treatment
Brain Donation
Resources
Visit our Volunteer
For A Study page. If you would like to participate in a research
study and/or clinical trial, please contact us at 312-908-9023 or
by e-mail at CNADC-Admin@northwestern.edu
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