Partners in FTD Care, Fall 2020
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The logopenic variant of primary progressive aphasia (PPA) presents a unique set of challenges for persons diagnosed, care partners and health care professionals. As language skills decline, both the person diagnosed and those around them will need to exercise patience as they develop compensatory strategies. The use of speech and language therapy techniques to cultivate remaining language strengths can be greatly beneficial. Below are some additional ways to manage the symptoms of logopenic variant PPA.

Strategies for Persons Diagnosed and Family Care Partners

• Schedule an evaluation with a specialist, such as a speech- language pathologist, familiar enough with PPA to thoroughly evaluate communication abilities and establish a baseline for treatment.
• Adapt your communication, using shorter words and phrases.
• Reduce background noise and distractions to ensure the person with PPA can understand verbal communication.
• Face the person diagnosed, speak slowly and allow time for a response. Ask for clarification if a response is incomplete or unclear; do not pretend to understand.
• Use affirming statements (e.g., “Take your time,” “I’ll wait,” or “Would you like help?”).
• Develop speech and language therapy techniques to maximize communication at each stage of progression.
• Integrate compensatory techniques (cueing, clarifying meaning, describing the word) to facilitate successful, rather than perfect, communication.
• Consider aided approaches (e.g., simple written words, personalized conversation boards or technology apps) that physically put words in front of the person diagnosed to help them access vocabulary.
• Observe triggers for behavior changes and a generalized increase in symptoms. The person diagnosed may display challenging behaviors when frustrated over their inability to communicate their wants or needs.
• Monitor for depression. People with PPA experience frustration and loss over diminishing communication and are at an increased risk.
• Explore non-verbal therapies such as music, art, dance, and mindfulness to maintain a positive outlook and to maximize quality of life.
• Participate in a support group for persons diagnosed. Groups can encourage practicing language use, as well as help to develop a sense of community with others living with a rare disease.
• Care partners should also seek a support group to learn strategies from other caregivers.
• Apply for Social Security Disability Insurance (SSDI) benefits when being a part of the workforce is no longer an option. Applying under the Compassionate Allowances program will expedite the review process.
• Consider participating in research studies investigating therapies for preserving language, such as speech and language therapy (Communication Bridge) or non-invasive brain stimulation studies (tDCS, TMS).

Guidance for Health Care Professionals

• Refer to multi-disciplinary specialty centers with experience in progressive aphasia for comprehensive evaluation and care planning.
• Encourage language evaluations and care with speech language pathologists who are knowledgeable about neurodegenerative conditions such as PPA to design strategies to retain and maximize communication abilities.
• Identify a specific goal or care issue with the family and care team; speech-language interventions should be integrated into the overall care plan.
• Listen. Tune in to what the person living with PPA and their care partners think and feel about their situation. Time spent patiently listening can create better opportunities to educate—and develop person-centered care strategies for—the person diagnosed.
• Include the spouse/partner (and, if applicable, other family members) in speech language therapy sessions to supplement at-home training.
• Pinpoint language strengths retained by the person diagnosed, and work to maximize them through individualized interventions.
• Refer to the appropriate clinician when language symptoms are coupled with behavior symptoms like depression, apathy and memory impairment.
• Encourage the person diagnosed and their care partner to learn about research, clinical trials, emerging therapies and compensatory tools.
• Reassure families and caregivers that they are not alone in their journey!
• Refer to the Winter 2016 issue of Partners in FTD Care, “Maximizing Communication Success in Primary Progressive Aphasia,” for more information, tips and resources for managing PPA.

See also:

• When the Conversation Stops: Logopenic Variant Primary Progressive Aphasia
• Ask an Expert: Is Logopenic PPA an FTD Disorder or Alzheimer’s Disease?
• PPA and Depression
• PPA Subtyping: Helping or Hindering the Understanding of PPA?
• From a Caregiver’s Perspective: Music Therapy and Language Retention
• From a Caregiver’s Perspective: The Importance of Speech and Language Therapy in PPA
• Download the full issue (pdf)