Table 2.

Experiences of Living With PPA From the Perspective of Family Members.

Author(s) (Location)	Qualitative Study Aim(s)	Research Methodology/Qualitative Data Collection Method(s)/Qualitative Data Analysis Method(s)	Participant(s)	Key Qualitative Findings Related to the Scoping Review Question
Kindell et al 25 (United Kingdom)	To describe the experiences of a wife and son caring for a husband/father with svPPA	Qualitative case study/individual semistructured interviews/thematic narrative analysis	71-year-old wife and adult son of individual with svPPA 4-5 years post-diagnosis	Themes: (1) Living with routines—“Doug had developed a number of complex routines since the start of his semantic dementia…Over time, Karina and Stuart had become accustomed to these routines and rather than try to change Doug’s behaviour, their caring now took account of them” (p. 404); (2) Policing and protecting—“Karina and Stuart reported a need to monitor, or ‘police,’ Doug’s behavior, constantly having to be vigilant and keep an eye on what he was doing” (p. 404); (3) Making connections—“There was…a sense that the deeper, more emotional levels of making connections were missing. Despite this, both Karina and Stuart continued to make attempts to include Doug in conversation and encourage him to talk” (p. 405); (4) Being adaptive and flexible—“There had been a change in Doug’s personality, his style of talking, the people and situations he engaged with, his interests, and the topics he talked about…To maintain a caring and family identity, Karina and Stuart had to be flexible and adapt to these changes while still preserving Doug’s roles as husband and father”(p406)
Nichols et al 26 (Canada and United States)	To learn more about the needs and experiences of young carers for patients with frontotemporal dementia in order to create a relevant support web site for young caregivers to patients with dementia	Not specified/focus groups/thematic analysis	16-year-old son of man with PPA (subtype unspecified; time post-diagnosis not specified). The study also included 13 other children/stepchildren/ grandchildren of individuals with FTD, but not PPA	Symptoms of frontotemporal dementia: “Primary Progressive Aphasia—many doctors have no idea even what it is…a ton of other people think that since it’s called ‘aphasia’ that the person can’t really speak and it doesn’t relate to behavioral changes, and it absolutely does”
Pozzebon, et al 27 (Australia)	To understand how a spouse dealt with and negotiated the ongoing relational changes and psychosocial challenges of living with a partner through the course of svPPA	Qualitative instrumental case study/in-depth interview/thematic narrative analysis	Wife of man with svPPA who was died at the time of interview, age not stated	Themes: (1) Us—“Their close emotional bond was forged over 40 years prior to the onset of svPPA”(p379); (2) The way he was…The way he is now—“Mary gave a detailed account about how the insidious onset and progression of svPPA dramatically changed her husband’s personality and his interactions with her”(p380); (3) Floundering with unpredictability—“Particularly during the pre-diagnostic period, Mary had no feasible explanations to account for Geoff’s personality changes”(p381); (4) Adjusting and accepting support—“Over time,…[Mary] learnt to adjust and accommodate Geoff’s unpredictability and declining cognitive communication abilities…Mary only accessed help when she was desperate…Immediately after this event [a critical incident] Mary accepted whatever help and assistant was available”(p382); (5) Taking control—“For most of their married life and into the mid-phases of the svPPA, Geoff took the lead in decision-making, but this was not viable as he deteriorated. It was the critical event of selling their home that compelled Mary to turn the corner and take control”(p383); (6) Back to floundering with grief—“Mary’s previous feelings of floundering resurfaced immediately following Geoff’s death…For Mary, dealing with loss characterized her entire journey with svPPA”(p384)
Pozzebon et al 28 (Australia)	To explore the spousal recollections that for them signalled the earliest signs of PPA	Constructivist grounded theory/in-depth interviews/Initial open coding of “Initial/early signs”; quotes coded to most suitable DSM-5 neurocognitive domain 29	12 wives and 1 husband of 6 individuals with svPPA, 5 with lvPPA, and 2 with nfvPPA (1-7 years post-diagnosis) aged 54-82 years; mean = 70.9 years	(1) Earliest signs of svPPA: “[C]hanges in social cognition presenting concurrently with language difficulties…signalled the start of illness onset.”(p286) (2) Earliest signs of lvPPA: “Changes in social cognition as the earliest presenting symptoms preced[ed] the language difficulties…Reduced talking and cessation of emotional intimacy [were] the most prominent earliest signs of lvPPA, especially obvious in a social group setting.”(p288) (3) Earliest signs of nfvPPA: “Speech-language difficulties as the earliest presenting sign…[S]ubtle social cognition issues emerged about 1-2 years post-diagnosis”(p290)
Purves 30 (Canada)	To describe how the husband of a woman with nfvPPA and their adult children experienced and interpreted his ways of speaking for hera	Qualitative case study/semistructured interviews; audiorecordings of natural conversations involving the individual with nfvPPA and at least 2 other participants/thematic analysis and conversation analysis	63-year-old female with nfvPPA (6 months post-diagnosis), her husband, 2 adult daughters, and 2 adult sons	The husband used 3 different patterns of “speaking-for” behaviors with his wife: (1) speaking in support of; (2) speaking on behalf of; and (3) speaking instead of. Themes related to these “speaking for” behaviors: (1) Historically familiar—“It represented a long-standing pattern in their relationship”(p917); (2) Interactionally problematic—“Margaret’s increasing difficulties in speaking for herself made this long-established pattern problematic”(p917); (3) Strategically compensatory—“Family members also recognized the different ways in which those behaviors supported interactions”(p918)

Abbreviations: DSM-5, Diagnostic and Statistical Manual of Mental Disorders, 5th Edition; FTD, frontotemporal dementia; PPA, primary progressive aphasia; svPPA, semantic variant PPA; nfvPPA, nonfluent variant PPA; lvPPA, logopenic variant PPA.

^a Qualitative results reported in the study only drawn from experiences of family.