Support The Journey

What about the Family? 

• People with Primary Progressive Aphasia usually continue caring for themselves, working and maintaining their interests, sometimes for many years after the disorder’s onset.

• There are two basic approaches to treatment for PPA. One approach is to focus treatment directly on the impaired language skills, and the other is to provide augmentative/alternative communication strategies or devices. It is recommended that both treatment approaches be used with PPA patients. Beginning in the early stages of the disease, treatment should be provided to enhance verbal language skills.
• Repetition and opportunities to speak are important. Sometimes there may be a tendency to avoid talking because of the difficulty or embarrassment, but every effort should be made to talk whenever possible. 

• Treatment will not reverse the progression; however, it can greatly enhance communication ability.
• The person diagnosed with PPA is experiencing a tumultuous role change from that of an independent, self-sufficient person to someone who is becoming increasingly dependent on others.

• Employment is often the first issue that must be addressed when someone has been diagnosed with PPA. A professional person in their 50’s or 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.

• Developmentally, PPA usually occurs at 50-60, an age where a chronic illness of this kind is unexpected.
• Additionally, the children and families of PPA patients 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.
• 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. It is important to remain in touch with the emotions that can arise and seek counseling for support and assistance in coping as needed.