Quality of Life Ratings and Proxy Bias in Primary Progressive Aphasia: Two Sides to the Story?

Ruggero, Leanne; Croot, Karen; Nickels, Lyndsey

doi:10.1177/15333175231177668

Cited by 7 publications

(4 citation statements)

References 51 publications

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“…2 This approach would include cultural awareness to build resilience in the GBA as the papers in this Special Collection have confirmed. [3][4][5][6][7][8]…”

Section: Discussionmentioning

confidence: 99%

“…All papers converge on the same view: culture specific awareness is vital. [1][2][3][4][5][6][7][8][9] The Special Collection begins with a review of the work of Brayne and Wu 2 who conclude that awareness of cultural contexts in which assessment and treatment occur is often absent or at least not reported, in large population based studies of aging and dementia. They describe the variation they observe within a country (UK) among aging populations by comparing the changes in health conditions across time and place using examples from population-based studies in England and Wales.…”

Section: Introductionmentioning

confidence: 99%

“…Dementia is not only caused by Alzheimer’s disease. Ruggero and colleagues 8 return to QoL by reporting their research on patients who have Primary Progressive Aphasia (PPA), a dementia that begins with loss of language and progresses to cognitive impairments. They look at dementia from a Whole of Life perspective taking into account communication skills within the carer network, another cultural difference across the world of research in dementia.…”

Section: Introductionmentioning

confidence: 99%

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Intervention and Prevention of Dementia in the Greater Bay Area (GBA) of China

Weekes,

Carthery-Goulart

2023

Am J Alzheimers Dis Other Demen

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Reserve and resilience are recognized as essential for effective intervention and prevention of dementia. However, it is not known if these factors also protect against risk for dementia in the Greater Bay Area (GBA) of Mainland China. Studies of risk factors across regions of China provide an evidence base for future research in the GBA. However, population-based studies are rare and do not account for the cultural differences in levels of education, income, literacy and modifiable lifestyle factors. Critically, extant studies do not allow for differences in languages spoken across the region, which will bias results and potentially minimize true prevalence. Based on the conclusions reported in this Special Collection, research in the GBA should focus on resilience and reserve using preserved native language communication skills.

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“…2 This approach would include cultural awareness to build resilience in the GBA as the papers in this Special Collection have confirmed. [3][4][5][6][7][8]…”

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Intervention and Prevention of Dementia in the Greater Bay Area (GBA) of China

Weekes,

Carthery-Goulart

2023

Am J Alzheimers Dis Other Demen

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“…Far from the stereotype of dementia with confusion and lack of insight, an individual in the early stages of PPA may live a relatively normal life, experiencing difficulty mainly when having to translate thoughts through the filter of language. Having said that, the everyday experiences and quality of life vary widely across individuals with PPA ( Davies & Howe, 2020 ; Ruggero et al, 2019 , 2023 ).…”

Section: Media Misrepresentation Of Mr Willis’ Ftd Diagnosismentioning

confidence: 99%

The Media Coverage of Bruce Willis Reveals Unfamiliarity With Frontotemporal Degeneration

Hurley,

Pillai,

Leverenz

2023

Innovation in Aging

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In 2022, Bruce Willis’ family released a statement saying that he had been diagnosed with aphasia (an acquired language impairment) and would no longer be acting. Ten months later, the Willis family released another statement indicating that he received a more specific diagnosis of frontotemporal degeneration (FTD). This resulted in an explosion of media coverage, as prominent news outlets scrambled to produce stories describing FTD to a public largely unfamiliar with the disease. The quality of these stories varied widely, and in many cases the relationship between aphasia and FTD was misrepresented, as were basic descriptions and facts about FTD. FTD refers to a class of protein-misfolding diseases that are a common cause of aphasias due to neurodegeneration, or primary progressive aphasias (PPA). Rather than describing how FTD was discovered to be the underlying source of Mr. Willis’ aphasia, many reports described his aphasia as “progressing into” FTD, implying they are two different disorders. Furthermore, these reports used the terminology of frontotemporal “dementia” rather than frontotemporal degeneration, a term that invokes many stereotypes in the public imagination and may have contributed to misrepresentations in coverage. Instead of focusing on the language symptoms of PPA, reports often emphasized the personality and behavioral changes more closely associated with other variants of FTD. The substance of various facts, such as how common FTD is and how it can be treated, varied widely across reports. In sum, the media coverage of Mr. Willis’ diagnosis reveals the extent to which the media and general public are uninformed about FTD and PPA. The remedy for this problem is to promote greater awareness of FTD, in both the public and the medical provider class. The Willis family’s disclosure was a courageous act that helped bring much needed attention to this disease.

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Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia

Hopkins,

Kwon,

Lapins

et al. 2024

A&D Transl Res & Clin Interv

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INTRODUCTIONMeasurements of health‐related quality of life (HRQoL) are important for capturing disease impact beyond physical health and relative to other diseases but have rarely been assessed in primary progressive aphasia (PPA).METHODSHRQoL was characterized overall, by sex and subtype in PPA (n = 118) using the Health Utilities Index‐2/3 (HUI2/3). Multiple linear regression assessed associations between HRQoL and language severity.RESULTSMulti‐attribute HUI2/3 summary scores indicated moderate to severe impairment. Scores did not differ by sex and were more severe for semantic than non‐semantic PPA. Language severity scores showed significant associations with HUI multi‐attribute scores and select single‐attribute measures (hearing, sensation, cognition, and speech) with less language impairment associated with better functional capacity related to HRQoL.DISCUSSIONThis study identified poor HRQoL in a relatively large PPA cohort. HRQoL measures aid in determining patient perspective, policy decision making, and resource allocation. Results may be used to advocate for PPA support.Highlights Primary progressive aphasia (PPA) negatively impacts health‐related quality of life. Health utilities index scores are associated with Western Aphasia Battery performance in PPA. Severity of language impairment in PPA is associated with poorer quality of life.

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Quality of Life Ratings and Proxy Bias in Primary Progressive Aphasia: Two Sides to the Story?

Cited by 7 publications

References 51 publications

Intervention and Prevention of Dementia in the Greater Bay Area (GBA) of China

Intervention and Prevention of Dementia in the Greater Bay Area (GBA) of China

The Media Coverage of Bruce Willis Reveals Unfamiliarity With Frontotemporal Degeneration

Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia

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