Global Perspectives on the Management of Primary Progressive Aphasia.

Speech-language therapists/pathologists (SLT/Ps) are key professionals in the management and treatment of primary progressive aphasia (PPA), however, there are gaps in education and training within the discipline, with implications for skills, confidence, and clinical decision-making. This survey aimed to explore the areas of need amongst SLT/Ps working with people living with PPA (PwPPA) internationally to upskill the current and future workforce working with progressive communication disorders. One hundred eighty-five SLT/Ps from 27 countries who work with PwPPA participated in an anonymous online survey about their educational and clinical experiences, clinical decision-making, and self-reported areas of need when working with this population. Best practice principles for SLT/Ps working with PwPPA were used to frame the latter two sections of this survey. Only 40.7% of respondents indicated that their university education prepared them for their current work with PwPPA. Competency areas of "Knowing people deeply," "Practical issues," "Connectedness," and "Preventing disasters" were identified as the basic areas of priority and need. Respondents identified instructional online courses (92.5%), sample tools and activities for interventions (64.8%), and concrete training on providing care for advanced stages and end of life (58.3%) as central areas of need in their current work. This is the first international survey to comprehensively explore the perspectives of SLT/Ps working with PwPPA. Based on survey outcomes, there is a pressing need to enhance current educational and ongoing training opportunities to better promote the well-being of PwPPA and their families, and to ensure appropriate preparation of the current and future SLT/P workforce.

Facing the Challenges of Primary Progressive Aphasia: The Spousal Perspective.

Purpose: Primary progressive aphasia (PPA) is a cognitive-neurodegenerative disorder. Little is known about the personal impact PPA has on those living with this condition, particularly from a spousal perspective. The aim of this qualitative study was to gain an understanding of the personal experiences of spouses living with a partner diagnosed with variant forms of PPA. Method: Thirteen spouses whose partners were diagnosed with PPA participated in 1:1 semistructured, in-depth interviews to explore their lived experiences of this illness. Using a constructivist grounded theory approach, analysis moved through a process of data-driven open and focused coding for the identification of emergent categories, themes, and subthemes that captured the challenges faced by spouses while supporting their partners. Results: A constructivist grounded theory analysis of the interview data revealed an overarching theme of "facing the challenges of PPA" that captured the experience spouses encountered when living with a partner diagnosed with PPA. Four interdependent and overlapping themes that sat within this overarching theme included acknowledging disconnect in the spousal relationship, living the decline, readjusting sense of self, and getting on with living. Each of these core themes revealed how spouses dealt with the ongoing and evolving challenges of PPA, particularly concerning changing relational dynamics with their partner and adjusting their own self-conceptualization. Conclusions: Greater understanding of the spousal experiences of PPA is crucial to the development of intervention to help sustain spouses' emotional and relational connections with their partner.

Spousal recollections of early signs of primary progressive aphasia.

BACKGROUND: Although primary progressive aphasia (PPA) is characterized by progressive loss of language and communication skills, knowledge about the earliest emerging signs announcing the onset of this condition is limited. AIMS: To explore spousal recollections regarding the earliest signs of PPA and to compare the nature of the earliest perceived symptoms across the three PPA variants. METHODS & PROCEDURES: In-depth interviews focusing on the earliest signs of illness onset were conducted with 13 spouses whose partners were diagnosed with PPA. The earliest recollections and observations described by the spouses were analyzed and coded according to the DSM-5 criteria for a mild neurocognitive disorder. These data were then compared across and within each of the three PPA variants. OUTCOMES & RESULTS: Spousal retrospective accounts indicated the three PPA variants (semantic, logopenic and non-fluent) had a signature profile announcing illness onset. Changes in social cognition presented in all three variants of PPA, but at different points in the illness trajectory. In particular, the findings suggest the possibility that PPA initially presents as subtle changes in social cognition for semantic variant PPA (svPPA) and logopenic variant PPA (IvPPA) rather than overt language impairments as defined in the current diagnostic criteria. CONCLUSIONS & IMPLICATIONS: Understanding the nature of symptoms perceived in the earliest stages of PPA has potential to inform earlier and accurate diagnosis and interventions to assist those living with the illness.

Spouses' experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.

BACKGROUND: The majority of people diagnosed with a dementia live at home with the support of their spouse. While this situation has advantages, it brings many challenges for the spouse, particularly dealing with the emotional impact of the behavioral changes associated with the dementia. A growing body of qualitative research has focused on understanding the spousal caregiver perspective of living with a partner diagnosed with dementia. The aim of this study was to complete a synthesis of the results of published qualitative studies that have explored the spousal experience. METHOD: An electronic database search of Ovid Medline, CINAHL, EMBASE, and PsychINFO from January 1980 to September 2014 was conducted. Sixteen studies met the inclusion criteria. Verbatim quotes of the participant interview data derived from these studies were collated and a thematic analysis was conducted. RESULTS: Synthesis of the published data revealed five major themes. The theme of "loss of partner" was central, and around this central experience spouses described various processes: acknowledging change, being in crisis, adapting and adjusting, accepting and moving forward. CONCLUSIONS: These findings provide insights into the day-to-day adjustments and experiences of spousal caregivers whilst highlighting the importance of considering the impact of cognitive decline and dementia in a social-relational context.