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.