‘Like going into a chocolate shop, blindfolded’: What do people with primary progressive aphasia want from speech and language therapy?

Abstract

Background: Primary progressive aphasia (PPA) describes a group of languageled dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves.Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures:A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis.Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications:This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person-centred approach that considers the This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

The Functional Communication Checklist for People Living with Primary Progressive Aphasia: Study Protocol

“…We will then gather targeted feedback for the people assessed, providing the person and people who want to communicate with them specific and evidence-based recommendations to address areas of concern and improve FC. To generate this targeted feedback [9,11,12,25] based on the FCC’s structure, the study team will develop informational guidance and clinical recommendations for each of the behaviors included. The purpose is multifold and intended for patients, care partners, researchers, and clinicians.…”

Primary progressive aphasia: six questions in search of an answer

“…Such interventions are most beneficial when introduced early in the illness, when they are customised to be personally relevant to the patient and if they can be scaled to the level of natural discourse [ 196 – 198 ]. Communication partner training such as Better Conversations with PPA addresses the essential role of those close to the patient in everyday social interactions: such training can identify communication barriers and promote strategies to overcome them across the PPA spectrum [ 189 , 199 – 201 ], while addressing a key everyday management need identified by people with PPA and their care partners [ 202 ]. Therapists can also provide guidance in the use of ancillary communication devices, which may be a communication lifeline where the patient’s chief limitation is motor speech production (such as PPAOS [ 57 ]) Equally, however, ‘low tech’ communication aids should not be overlooked: a card, booklet or bracelet that the patient can carry may be crucial in maintaining independence.…”

Development of fidelity of delivery and enactment measures for interventions in communication disorders

“…Communication partner training has the potential to reduce the risk of low mood developing into clinical depression, as demonstrated in stroke aphasia (Baker et al, 2018), and is an intervention approach that people with PPA and their family members feel is important to them (Loizidou et al, 2022). To date, the research evidence for CPT in PPA has been limited to individual case studies (Volkmer et al, 2020).…”