“Not That I’ve Become Exceptional, But I’m Able to Make Myself Understood Better”: Impact of Speech and Language Therapy on Everyday Communication in People with Primary Progressive Aphasia and Their Carers

Abstract

Introduction

Primary progressive aphasia (PPA) is a neurodegenerative syndrome characterized by progressive speech and language impairments that impact communication, independence, and psychosocial well-being. People with PPA (PwPPA) and their carers face communication difficulties that lead to social withdrawal. Speech and language therapy (SLT) offers non-pharmacological strategies to support communication, yet evidence regarding its perceived impact on daily life remains limited. This study explored the experiences of PwPPA and their carers following SLT, focusing on perceived changes in communication abilities, confidence, and psychosocial well-being.

Methods

PwPPA participated in a 5-week, tailored telerehabilitation program (Lexical Retrieval Cascade Treatment for logopenic PPA/semantic PPA; Video-Implemented Script Training for nonfluent/agrammatic PPA). Post-treatment questionnaires were developed to collect the opinions of PwPPA and their carers regarding the SLT. The questionnaires included 22 closed-ended Likert-scale items and two open-ended questions for each group. Quantitative data were analyzed for frequency and consistency between PwPPA and carers, while qualitative responses underwent reflexive thematic analysis. Twenty-five PwPPA and 24 carers completed the questionnaires.

Results

Quantitative findings showed consistent perceptions between PwPPA and carers, with approximately 30% reporting improvements in communication confidence, speaking ability, and stress. Thematic analysis revealed four shared themes: reduction in negative emotions/increased self-efficacy, proactivity, acquisition of compensatory strategies, and the importance of the treatment setting and patient–clinician relationship. Additional themes included enhanced communicative effectiveness for PwPPA and increased awareness and improved interpersonal relationships for carers. Participants emphasized the benefits of individualized, supportive therapy delivered in a comfortable environment, including via telerehabilitation.

Conclusion

Our study highlights the positive influence of SLT on both communication and psychosocial outcomes in PwPPA and their carers. Integrating subjective experiences with quantitative measures underscores the importance of person-centered, holistic interventions that address linguistic, emotional, and social dimensions, supporting everyday communication and quality of life.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40120-026-00890-7.

Key Summary Points

Why carry out this study?

The perspectives of people with primary progressive aphasia (PwPPA) and their carers are often overlooked, including in evaluations of speech and language therapy (SLT) outcomes.

This study explored the impact of SLT on everyday communication, confidence, and psychosocial well-being.

What was learned from this study?

Both PwPPA and their carers reported benefits from SLT. They emphasized the importance of SLT in enabling them to learn new strategies, improve everyday communication abilities, reduce stress, and enhance psychosocial well-being through tailored interventions and secure therapeutic relationships with clinicians.

Integrating the perspectives of PwPPA and their carers may improve research processes which in turn will serve to influence how health policy organizations should act.

Introduction

Primary progressive aphasia (PPA) is a group of heterogeneous clinical syndromes characterized by a prominent, slowly progressive speech and/or language impairment, usually associated with frontotemporal lobar degeneration (FTLD) pathology or an atypical presentation of Alzheimer’s disease (AD) [1, 2]. Three main variants of PPA, nonfluent/agrammatic (nfvPPA), semantic (svPPA) and logopenic (lvPPA), have been classified on the basis of clinical features, cortical atrophy patterns, and underlying pathology [3].

Language difficulties in PPA, which occur at different levels depending on the specific variant [3], significantly compromise communication and greatly impact both the person with PPA (PwPPA) and the people around them. Language disorders are frequently associated with a loss of independence and self-identity, inability to work, and social isolation [4], all of which contribute to an increased prevalence of mental health issues (i.e., depression, anxiety) among affected individuals and their carers [5]. As a fundamental cornerstone of communication, language is pivotal in shaping our connections, nurturing interpersonal relationships, and enhancing our overall well-being. It is unsurprising that PwPPA and their carers experience feelings of loss and grief, deterioration of their relationship with their relatives, increased sense of responsibility, and alterations in their sense of self [6, 7].

Promising early studies suggest that non-pharmacological interventions, such as speech and language therapy or communication-based strategies, may be beneficial for people living with PPA [8, 9]. Cognitive and behavioral interventions may be designed to enhance various aspects of speech, language, and communication through structured activities involving listening, speaking, reading, writing, and other communicative tasks. The targeted outcomes encompass, but are not limited to, improvements in receptive language processing and comprehension, intelligible speech production, lexical retrieval, sentence and discourse formulation, the effective use of augmentative and alternative communication modalities, and the implementation of strategies to support conversational competence and functional communication in everyday contexts [8, 9]. Evidence suggests that carefully tailored speech and language therapy interventions, grounded in the tailored selection of linguistically relevant stimuli, yield significant benefits for PwPPA and that language gains can be maintained with continued practice, despite disease progression [10, 11].

Although advances in the diagnosis of PPA, driven by improved tools, biomarkers, and scientific understanding of the syndrome, have significantly progressed, to date, no available pharmacological treatment can counteract disease progression. To respond to this unmet need, a growing body of research supports the utility of speech and language therapies (SLT) to target an individual’s language deficits, achieving meaningful therapeutic outcomes that help PwPPA and their carers with managing the disease progression [12]. Several studies demonstrated that word retrieval interventions can help restore picture naming and rebuild semantic and phonological information for people with lvPPA and svPPA [10, 13, 14]. Treatment protocols structured to engage residual semantic, orthographic, and phonological knowledge improve naming abilities on a set of target nouns, with evidence of maintenance over time and generalization of the retrieval strategies to untrained items [10, 15]. Functional benefits are also reported, including enhanced word retrieval during conversation and increased self-confidence [16]. Beyond lexical retrieval therapies, other studies involving nfvPPA have focused on different aspects of language, including morpho-syntax and motor speech. These interventions often used video-implemented scripts that were individually customized on the basis of each patient’s specific linguistic difficulties and personal interests, developed through a collaborative process between the therapist and the participant [17, 18]. The effects of this choral reading approach lead to a reduction in articulation errors, a decrease in speech difficulty, and an overall improvement of verbal fluency, speech production, and functional communication [17, 19]. Defining what constitutes meaningful change in neurodegenerative diseases remains a challenge, particularly when the goal of treatment may be to preserve existing abilities rather than achieve measurable gains [20]. Language interventions have traditionally focused on improving objective outcomes such as naming performance, mainly through quantitative analyses, emphasizing linguistic outcomes [12, 19, 21]. Emerging research underscores the value of investigating enhancements in communication and quality of life by incorporating subjective evaluations from PwPPA and carers to fully capture the therapeutic benefits. In a previous study, Loizidou et al. qualitatively explored the opinions of PwPPA and their communication partners regarding SLT. They found that the main need of participants was related to identifying strategies to support communication and cognitive changes over time, but PwPPA do not always have access to SLT [22]. Using semi-structured interviews with both PwPPA and carers after SLT, a recent study found compelling evidence for the treatment’s value in terms of sense of community and well-being, with respect to quantitative measures that showed marginal or non-significant changes [11]. Overall, PwPPA and carers perceived significant positive impacts from SLT, both on the communication level and on the confidence in their ability to cope with PPA [11].

Although scant, this evidence suggests that delivering appropriate communication treatment requires a thorough understanding of a comprehensive perspective of both PwPPA and their carers as the communication partner (often the carer) bears the main load and takes the responsibility of successful communication. Therefore, studies taking into account the factors influencing SLT outcomes are much needed. A mixed methodology offers the opportunity to capture the complexity of lived experiences, as well as the perceived efficacy and shortcomings of the treatment protocols, highlighting aspects that often remain unaddressed. To the best of our knowledge, few mixed methods research studies have investigated the perspective of PwPPA and their carers regarding SLT, particularly concerning its impact on everyday communication and psychosocial well-being. Thus, this study aims to examine the factors that, according to both PwPPA and carers, have an impact on SLT outcomes, specifically looking at perceived changes in communication abilities, confidence, and stress.

Methods

Inclusion and Exclusion Criteria of Participants

Participants were recruited as part of a larger study on SLT rehabilitation of PPA (Battista et al., in preparation). Accordingly, we enrolled in the study PwPPA who received a diagnosis following Gorno-Tempini’s criteria [3], had Mini-Mental State Examination (MMSE) [23] score > 15, Clinical Dementia Rating (CDR) ≤ 1, and were native Italian speakers. PwPPA were excluded from the study if they were not native Italian speakers; they presented other neurological or psychiatric illnesses, including cerebrovascular disease at conventional MRI or CT. They were referred through a network of neurologists, SLT, neuropsychologist, local services and associations from different regions of Italy, along with their respective carers.

Carers were defined as individuals who have daily, in-person contact with the patients, thereby serving as their main communication partners. To participate in this study, all subjects provided their informed written consent. All procedures were performed according to the Declaration of Helsinki. The study protocol was approved by the Institutional Review Board of the IRCCS Giovanni Paolo II Hospital (No. Prot. n. 1767/CEL; Prot. n. 80/CE Maugeri).

Speech and Language Intervention

Patients underwent a 5-week telerehabilitation treatment that was tailored to the specific clinical profile of each PPA variant. Patients with lvPPA and svPPA underwent the Lexical Retrieval Cascade Treatment (LRT) [16], organized in a hierarchy of tasks to promote the strategic recruitment of preserved semantic, orthographic, and phonological knowledge, as well as episodic and autobiographical information, in order to facilitate word retrieval through self-cueing strategies. Conversely, patients with nfvPPA received the Video-Implemented Script training for Aphasia (VISTA) [17], which involved the repeated rehearsal of individualized scripts through structured sessions with a clinician. All PwPPA completed a 30-min/day at-home practice, including spoken and written rehearsal of target lexical items using Copy and Recall Treatment [24] for lvPPA and svPPA participants, while an audiovisual model with “speech entrainment” was provided to nfvPPA participants [17].

Questionnaire Development

Two post-treatment questionnaires were adapted for the Italian language and extended from Henry et al. [10, 17] studies: one for PwPPA and one for carers. The questionnaires aimed at collecting patients’ and carers’ feedback on the intervention and its perceived impact on everyday life relative to pre-treatment status. The patients’ questionnaire was adapted to the specific treatment received (LRT vs VISTA). Both questionnaires comprised 24 questions, of which 22 were closed questions on a 7-point Likert-type scale with responses ranging from “a lot worse” to “a lot better”, and 2 open-ended questions. Closed questions focused on a set of parameters, including the ability to name trained and non-trained items and to use them in a conversation, the ability to speak fluently in the scripts practiced and in everyday conversations, the ability to detect and correct errors, perceived stress level, and confidence during conversations with familiar and unfamiliar partners. Questions were designed to be easily comprehended by persons with PPA and were presented in a language accessible even to non-experts. Open-ended questions in the patient’s questionnaire were formulated in Italian; the English translations are provided here for clarity: (1) “Please describe how you think the treatment sessions have been helpful”, (2) “Please describe how the rehabilitation you underwent improved your situation”. Open-ended questions in the carers’ questionnaire were formulated as follows: (1) “Please describe how you think the treatment sessions have been helpful for your family member”, (2) “Please describe how speech therapy may have led to improvement”. All the questionnaire items are reported in Supplementary Materials, Tables 1 and 2.

Data Collection

One week after the end of the treatment, during the post-treatment session, all patients and their carers were asked to complete the questionnaires. The carers’ questionnaires were sent via a self-administered link, while patients completed the questionnaire with the help of a clinician. Time to administer varied by patient, but on average took 60 min. Carers took approximately 30 min to complete the questionnaire. Text responses to open-ended questions were transcribed verbatim into a Microsoft Excel spreadsheet and analyzed thematically.

Quantitative Analysis of Closed-Ended Questions

Likert-scale responses from 21 closed-ended questions were collected and scored. Although we performed the analysis of frequencies for all questions included in the questionnaire (see Supplementary Tables 3–5), we decided to focus on and show responses concerning communication and the psychosocial impact of therapy (Q13–Q17, Q21), showing the results using a bar plot. Response frequencies were calculated separately for PwPPA and their carers, and then the distributions were compared using Fisher’s exact tests, as appropriate, to verify if there is consistency in the perception of communication abilities between the two groups.

Thematic Analysis

Data were analyzed using reflexive thematic analysis, an inductive, data-driven approach to identify salient themes robustly and systematically [25] without applying a pre-specified coding frame. Two authors (CP, GCS) reviewed methodological guidelines and prior application of thematic analysis. Considering the limited literature on the impact of rehabilitation communication abilities in PwPPA and their carers, the authors adopted an inductive stance to ensure full reliance on participants’ accounts. Moreover, considering that PwPPA and their carers responded to the same open-ended questions, we compared the responses provided by PwPPA with those provided by carers. We decided not to split the responses on the basis of the intervention type, i.e., LRT vs VISTA, in order to evaluate the perceived communication changes achieved thanks to the SLT. Analysis followed the six phases required in reflexive thematic analysis [26]. First, CP and GCS familiarized themselves with the transcripts. Second, they independently coded the data, annotating relevant and interesting features. Third, they compared the coded information and created a shared document with all the relevant quotes and themes. Using a peer debriefing process, CP and GCS discussed and identified potential themes from the two groups, individuals with PPA and carers, highlighting overlapping themes, differences, and possible relationships between the two. Fourth, CP produced a single mind map, refining themes and including significant quotes. Fifth, this material was used by the authors to define the names of the themes. Sixth, themes were then organized and written up, ensuring balanced coverage of topics for PwPPA and their carers. Figure 1 displays the six steps adopted in this study.

Fig. 1.

Six phases of thematic analysis

Results

Participants’ Description

A total of 29 PwPPA were assessed for the SLT study; three PwPPA did not meet the inclusion criteria (i.e., MMSE > 15 or CDR ≤ 1). Out of the 26 eligible PwPPA, 25 completed the SLT treatment, while one PwPPA dropped out due to lack of motivation in the study.

Therefore, 25 PwPPA (12 men; 13 women) ranged in age from 46 to 76 years (65.64 ± 6.87) and in education from 5 to 18 years (13.24 ± 3.39) were included in this study. Diagnosis encompassed n = 11 nfvPPA, n = 3 svPPA, and n = 11 lvPPA. A total of 24 carers were included in the analysis, as one did not complete the questionnaire, due to lack of interest in the study. Carers (4 men; 20 women) ranged in age from 36 to 69 years (50.25 ± 10.38) and their education from 8 to 18 years (14.12 ± 3.26); 14 of them were patients’ partners, 8 were patients’ sons or daughters, 1 was a sibling, and 1 was a patient’s close friend. Participants came from various Italian regions: 11 patients lived in Southern Italy (9 in Apulia, 1 in Basilicata, and 1 in Sicily), while the remaining 14 were from Northern Italy (5 from Lombardy, 4 from Emilia-Romagna, 4 from Veneto, and 1 from Friuli-Venezia Giulia). A summary of demographics is reported in Table 1, and the geographical regions of PwPPA and their carers are shown in Fig. 2.

Table 1.

Demographical and clinical characteristics of people with primary progressive aphasia (PPA) and their carers

Characteristics	People with PPA
N	25
Age (mean ± SD)	65.64 ± 6.87
Sex (%)
Male	12 (48.00)
Female	13 (52.00)
Education (mean ± SD)	13.24 ± 3.39
PPA variants (%)
nfvPPA	11 (44.00)
lvPPA	11 (44.00)
svPPA	3 (12.00)

Characteristics	Carers
N	24
Age	50.25 ± 10.38
Sex (%)
Male	4 (16.67)
Female	20 (83.33)
Education (mean ± SD)	14.12 ± 3.26
Caregiver category (%)
Partner	14 (58.33)
Son/daughter	8 (33.33)
Siblings	1 (4.17)
Friend	1 (4.17)

Continuous variables are reported as mean ± standard deviation (SD), while categorical variables are expressed as frequencies and percentages

NfvPPA nonfluent/agrammatic PPA, svPPA semantic PPA, lvPPA logopenic PPA

Fig. 2.

Distribution of individuals with primary progressive aphasia (PPA) and their carers’ recruitment across the Italian territory

Quantitative Analysis of Closed-Ended Questions

Figure 3 shows the frequency of responses to Q13–Q17 and Q21 from PwPPA and their carers across different communication domains, including confidence when communicating with familiar, most-frequent, and unfamiliar people; overall speaking confidence; conversation stress level; and overall speaking and communication ability. No significant differences were found between the perceived changes in communication abilities of PwPPA and their carers across any of the questions of interest (all p > 0.05).

Fig. 3.

Bar plots comparing perceived changes (expressed as relative frequencies on the x-axis) in communication abilities (y-axis) between people with PPA (PwPPA) (a) and their caregivers (b)

Themes

Four main themes common to both patients and carers were identified through the analysis of participants’ responses: (1) reduction in negative emotions and increased self-efficacy, (2) proactivity, (3) strategies, and (4) setting and patient–clinician relationship. In addition, (5) communicative effectiveness emerged specifically from the group of people with PPA, while (6) awareness and (7) interpersonal relationships were identified from the carers’ surveys. Themes are illustrated below with quotes from the participants and summarized in Fig. 4.

Fig. 4.

Summary of key themes emerged from PwPPA and their carers perspectives

Key Themes for Both Groups

Theme 1: Reduction in Negative Emotions/Increased Self-Efficacy

Most individuals with PPA reported experiencing a reduction in negative emotions, such as “anxiety” (lvP2), “shame” (nfvP4), and “discomfort” (nfvP7) as a result of the treatment provided. Consequently, PwPPA reported feeling more confident when communicating: “I feel more relaxed, I try to stay calm if I can’t find the words” (lvP4). Carers also reported seeing their relative feeling “more psychologically calm” (lvC4) or “less anxious when she cannot find the right word” (nfvC5). LvC6 said: “rehabilitation has restored his confidence in his ability to make himself understood when he cannot remember the right word, reducing the frustration that this used to cause him”. Some responses revealed an increase in self-esteem and self-efficacy among people with PPA, resulting from feeling that they too are capable of doing something that comes naturally to other people: “It was a way of saying that you have the strength to say natural things” (lvP6). This made PwPPA more likely to test themselves and leads, for example, to “an increase in attempts to formulate more complex sentences” (nfvC10).

Theme 2: Proactivity

Many responses to the questionnaire highlighted the need for people with PPA to take deliberate action to improve their situation. Language training was therefore seen as an opportunity to take initiative and actively engage in practicing their language skills: “It’s a useful treatment because it’s a high-level commitment and I want to be up to the task […] I want to stay active” (lvP5); “Thanks to you, I have resumed with accuracy and dedication” (lvP8); “They created a commitment to try to solve or improve the problem. So they created a positive expectation” (lvC4); “Continuous practice also motivated him to apply himself outside of the treatment sessions” (lvC10). Carers appreciated the utility of the treatment to keep their relatives busy and “committed to performing exercises” (lvC2). The theme of constant commitment, which helps the mind remain active, appears to be particularly important for carers, even in cases where they did not perceive any clear benefits from the treatment: “I believe there has been no improvement due to the incorrect way of performing the exercises” (lvC1).

Theme 3: Strategies

One of the most immediate benefits of language training reported by PwPPA and their communication partners was the acquisition of useful strategies for reaching the target word or speaking fluently about a topic. Strategies also provided alternative solutions that enhance communication effectiveness: “It seems to me that he is now more inclined […] to look for alternative ways to explain himself when he cannot find the right word” (svC1). The specific strategies employed varied depending on the treatment methodology. PwPPA undergoing the LRT said: “The strategy of focusing on the first letter of the word helped me a lot” (svP3) or “I have found strategies for when I can’t find a word, thinking about what it is used for or how it is made” (lvP6). On the other hand, people who performed the VISTA reported: “The videos helped me anchor myself to a model” (nfvP6), “I learned not to stop when I speak” (nfvP7), and “Watching the videos and putting the sentences in order helped me improve” (nfvP8).

Theme 4: Setting and Patient–Clinician Relationship

One of the strengths of the treatment was the protected setting, which provided PwPPA the opportunity to express themselves without fear of judgment or error, while communication was facilitated by trained clinicians. “It was important to have a conversation with someone who puts you at ease. It’s important when the person you’re talking to puts you in a position where it’s easy to talk, even when at first I couldn’t find the words and you had to draw them out of me” (lvP6). Telerehabilitation has proven particularly useful in this regard, as it creates a more comfortable environment for patients: “Choosing an online format made communication easier and reduced the stress that often comes with interacting face-to-face” (nfvC6). Carers also highlighted the importance of positive reinforcement provided by clinicians, which had an impact on the mood and motivation of their family member: “She is gratified by the compliments she receives from the doctor” (nfvC8). In general, the training sessions provided not only cognitive and linguistic stimulation but also “great psychological support” (nfvP3), becoming moments of “closeness […] and sharing” (lvC9) through “words, listening, and a little help” (lvP9).

Key Theme for Individuals with PPA

Theme 5: Communicative Effectiveness

The responses of PwPPA showed that more effective communication has been achieved as a result of the treatment provided. Communicative effectiveness is reflected both in the achievement of therapeutic goals (“I can remember words that I couldn’t remember before” (lvP10); “I started to formulate longer sentences” (nfvP1); “I speak more fluently” (nfvP6) and in the ability to be understood by communication partners while creating conditions that facilitate self-expression: “When I talk to my wife now, it’s not that I’ve become exceptional, but compared to 2–3 months ago […] I’m able to make myself understood better.” (lvP6); “I have also explained to my friends that I have a difficulty, so they are understanding and give me the time I need when I speak” (lvP2).

Key Themes for Carers

Theme 6: Awareness

Numerous carers indicated that treatment contributed to increased awareness among their family members regarding their difficulties: “I believe it helped the patient become more aware of her problem” (nfvC2); “For my mother, speech therapy was helpful because now she is aware of the problem she has” (nfvC5). This is accompanied by a recognition among participants that their experience is shared by others and that effective approaches exist for managing the condition’s challenges: “He realized that he is not alone in having this problem and that there are specialists working to improve situations like his” (lvC3). In addition, the treatment also helped carers increase their knowledge of the disease and its symptoms and improve their approach to their family members with PPA: “He made us understand exactly what his difficulties were (mouth articulation/tongue movement, diaphragmatic breathing) so that we could find a way to communicate with him using the right strategy” (nfvC3).

Theme 7: Interpersonal Relationships

PwPPA often become less talkative and tend to avoid social interactions. Following treatment, carers reported a general improvement in their family members’ interpersonal relationships, noting that they no longer restricted their communication to familiar partners but also engaged more readily with less familiar individuals: “I believe that rehabilitation interventions are useful for socializing and interacting with people outside the usual family/friends circle” (lvC2); “The only improvement I have noticed is regaining a desire to converse even with casual acquaintances, despite all the difficulties involved” (lvC3).

Discussion

The present study aimed to explore the experiences of PwPPA and their carers regarding SLT, complementing existing quantitative research with qualitative insights to provide a more comprehensive understanding of therapeutic impacts. While previous studies predominantly quantified improvements in communication and linguistic functions [27, 28], this investigation emphasizes the subjective experiences, perceived benefits, and psychosocial outcomes associated with SLT. This approach aligns with calls in the literature, such as by Loizidou et al. (2023) and Volkmer et al. (2023), who emphasize that a comprehensive understanding of the experiences of PwPPA and their carers is crucial for developing rehabilitation protocols that effectively address their actual needs [22, 29].

The main results of our study indicate that participants from both groups perceived significant benefits from SLT. Importantly, the consistency of the results across participants from different Italian regions suggests that, despite substantial regional variability in linguistic, social, and cultural factors, tailored SLT intervention has a meaningful impact on people with PPA and their carers beyond local differences. PwPPA and their carers reported reduced negative emotions, increased self-efficacy, proactivity, the acquisition of compensatory strategies, and improved setting and patient–clinician relationships. These themes emerged consistently across groups and align with prior literature. Our findings are strongly supported by Rogalski et al. [19], who, using post-study interviews, found that SLT determined positive changes in communication in daily activities, favored emotional well-being, and met overall expectations of the intervention, directly corroborating their quantitative findings on communication participation and confidence. These converging insights highlight the critical role of interventions that address not just linguistic deficits but also the broader emotional and social well-being, mitigating issues such as social isolation, anxiety, and depression prevalent in PPA [19].

Proactivity has been reported as a central theme by previous studies under the concept of active sense-making around communication difficulties. This encompasses how individuals make the most of things and navigate the emotional and social aspects of living with dementia. They explicitly noted that PwPPA engaged in meaningful activities using intact cognitive skills, which boosted their confidence [22, 29].

The focus on developing and refining communication strategies is a common thread that highlights a shared need for practical tools to navigate communication challenges. These findings resonate with the observations by Loizidou et al. (2023), who identified techniques to manage language symptoms and the personally relevant items for SLT as key themes in what PwPPA and their communication partners seek from therapy [22]. Similarly, Volkmer et al. (2023) highlighted participants’ need for the development of strategies (e.g., ask the right questions and it just flows), as strategies in conversation can make the difference between sustaining existing social relationships and withdrawing from them [29].

The importance of the protected setting and the patient–clinician relationships also emerged in Lawton et al. (2018), whose themes capture similar interpersonal dimensions. The engagement observed in rehabilitation, along with the emotional benefits, appeared to be supported by a strong therapeutic alliance. Participants described therapists as genuine, friendly, non-judgmental, and caring. These close alliances were marked by openness and a sense of connection, which reportedly fostered a relaxed atmosphere that encouraged therapeutic involvement. Providing clear, individualized feedback on progress was seen as an effective way to build confidence and hope [30]. This aligns with the person-centered approach advocated by both Loizidou et al. (2023) and Volkmer et al. (2023) as fundamental to delivering effective SLT that meets the broader needs of both the PwPPA and the people around them. Such an approach ensures interventions that are tailored to individual needs, preferences, and to the evolving disease journey [22, 29]. Another factor that contributes to creating a pleasant setting is the possibility of conducting rehabilitation sessions via telemedicine, as PwPPA and carers report that this remote modality reduces stress and travel to the therapy location, where often geographical distances are significant, and resources to facilitate access to SLT are lacking [31–33].

Notably, in this study, we performed a separate analysis for the two groups of participants to better understand the specific needs and perspectives of PwPPA with respect to carers. This analysis made it possible to clearly reveal the central theme for PwPPA: the need for effective communication, as they reported an overall improvement in their ability to convey a meaningful message. A recent multicenter study, designed with a nominal group technique, elicited that the patients’ needs were related to maintaining significant and authentic interaction and meaningful communicative exchanges [34]. Moreover, from this study it emerged that PwPPA want to take part in conversations with family and friends, express their thoughts and find the right words, become more fluent, and be able to convey a message through any available means. Similarly, participants who completed the post-treatment survey after the VISTA reported higher confidence and reduced frustration in communication with both familiar and unfamiliar people [16, 35]. In line with these findings, our results emerged organically through a thematic analysis developed specifically for PwPPA, allowing these priorities to surface spontaneously from their narratives.

With regard to carers, two overarching themes emerged. First, a higher awareness of the communication difficulties and overall about the PPA is helpful to better recognize and manage symptoms. This is in line with existing work, where carers revealed the need for information about PPA, and its implications on everyday life [7]. A second theme concerns the beneficial role of SLT on interpersonal relationships, as carers reported a higher engagement of their partners with other familiar and unfamiliar people. The role of communication partners in supporting PwPPA is indispensable as it ultimately improves their relationship, which is often overlooked but is vital for holistic care [11, 36]. In their randomized controlled trial, Rogalski et al. [19] specifically adopted a dyadic, multicomponent intervention framed in participation-based models of care, directly addressing the crucial role of communication partners in improving outcomes. This aspect has a direct impact on psychological well-being, contributing to better social interactions and mitigating feelings of social isolation often experienced by PwPPA [37, 38]. Overall, our study, together with previous findings, points to the need for interventions that consider the patient’s entire social ecosystem and underscores the importance of fostering social connections and involving the entire support network.

Finally, the quantitative analysis that we conducted further corroborated our qualitative findings. We did not find any discrepancy between PwPPA and carers’ perspectives regarding the changes in confidence with speaking, perceived stress, and communication abilities. In fact, around 30% of PwPPA and carers reported an improvement in speaking and communication, stress level, and confidence in speaking with different communication partners.

Despite these promising insights, the study has limitations that warrant consideration. The sample size, though larger than previous studies on the same topic (i.e., [22, 29], is relatively modest. Future research should replicate these findings, addressing this issue by also including equally represented phenotypes of PPA. Moreover, the study included the perspectives of family members who did not attend the therapy sessions but were able to comment as close observers. While this approach may introduce proxy bias, it was the only feasible way to capture carers’ experiences. Because post-treatment interviews can elicit socially desirable responses, interviews with carers were self-conducted online, and those with PwPPA were carried out by clinicians who had not previously treated them.

Conclusion

The present study underscores the importance of investigating PwPPA and their carers’ perspectives and opinions when an SLT intervention is delivered. The combination of qualitative insights with quantitative measures could foster a more nuanced understanding of rehabilitation outcomes and facilitate the design of holistic, person-centered protocols that truly address the complex needs of PwPPA and their support networks. This will help address emotional and social well-being, while mitigating issues such as social isolation and withdrawal that are prevalent in PwPPA.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

Conceptualization: Cinzia Palmirotta, Gaia C. Santi, Petronilla Battista; Methodology: Cinzia Palmirotta, Gaia C. Santi, Simona Aresta; Formal analysis and investigation: Cinzia Palmirotta, Gaia C. Santi, Simona Aresta; Writing—original draft preparation: Cinzia Palmirotta, Gaia C. Santi, Simona Aresta, Petronilla Battista; Writing—review and editing: Cinzia Palmirotta, Gaia C. Santi, Simona Aresta, Roberta Tomasoni, Allegra Benzini, Giuliana Leccese, Paola Santacesaria, Serena Tagliente, Maura Cosseddu, Federica Biddau, Alessandro Introna, Rosa Capozzo, Stefania Tagliente, Alessandro Padovani, Pietro Fiore, Petronilla Battista; Funding acquisition: Petronilla Battista; Pietro Fiore; Supervision: Gaia C. Santi, Petronilla Battista.

Funding

The author(s) declare that financial support was received for the research, authorship and publication of this article. The study was funded by the European Union–Next-Generation EU—NRRP M6C2—Investment 2.1 Enhancement and strengthening of biomedical research in the NHS (Project-ID PNRR-MCNT2-2023-12378220). Petronilla Battista is an Atlantic Fellow at the Global Brain Health Institute (GBHI). Petronilla Battista and Pietro Fiore receive research support from the Italian Ministry of Health, and P.B. also from Alzheimer’s Association (GBHI ALZ UK-22-866347). The journal’s Rapid Service fee was funded by the Istituti Clinici Scientifici Maugeri.

Data availability

The datasets generated and analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Conflict of Interest

Cinzia Palmirotta, Gaia C. Santi, Simona Aresta, Roberta Tomasoni, Allegra Benzini, Giuliana Leccese, Paola Santacesaria, Serena Tagliente, Maura Cosseddu, Federica Biddau, Alessandro Introna, Rosa Capozzo, Stefania Tagliente, Alessandro Padovani, Pietro Fiore, and Petronilla Battista have nothing to disclose.

Ethical Approval

All procedures were performed according to the Declaration of Helsinki. Informed written consent was collected from all participants. The study protocol was approved by the Institutional Review Board of the IRCCS Giovanni Paolo II Hospital (No. Prot. n. 1767/CEL; Prot. n. 80/CE Maugeri).