The communication needs of people with primary progressive aphasia and their family: a scoping review
Bibliographic record
Abstract
Language-led dementias, collectively called primary progressive aphasia (PPA), are caused by relatively focal damage to the language networks of the brain. The progressive language decline of PPA is associated with negative effects on quality of life; depression, hopelessness, and grief; and higher levels of economic burden for the individuals and their families. Although communication impairments are the primary symptoms at onset, people with PPA often receive minimal to no support for their communication needs. This scoping review aimed to explore what is currently known within the existing peer-reviewed research literature about the communication needs of people with PPA and their family members, from the perspectives of people with PPA, their family, and speech-language pathologists. A secondary aim was to identify the research approaches used in the included studies. Four databases were searched. Twelve articles met the inclusion criteria. Analysis of the eligible studies revealed eight broad areas of communication need for people with PPA: Language; Social communication; Everyday communication; Conversation; Social connection; Communication with people other than the family member; Support and coping with communication difficulties; and Education and information. The latter five areas were also identified for family members: Conversation; Social connection; Communication with people other than the family member; Support and coping with the communication difficulties of the person with PPA; and Education and information. The findings provide an initial overview of communication needs for this population and point to key avenues for future research in this area.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.006 | 0.036 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.003 |
| Bibliometrics | 0.011 | 0.009 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.003 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".