Longitudinal change in everyday function and behavioral symptoms in frontotemporal dementia
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BACKGROUND: The relationship between behavioral changes and functional decline in frontotemporal dementia (FTD) is not well understood. METHODS: Thirty-nine patients (21 behavioral variant FTD [bvFTD], 18 semantic variant primary progressive aphasia [svPPA]) were followed up longitudinally (2-4 years follow-up). Functional (Disability Assessment for Dementia) and behavioral (Cambridge Behavioural Inventory Revised) assessments were included for between-group (pairwise comparisons, mixed model analysis) and within-group analyses (bivariate correlations). RESULTS: Functionally, patients with bvFTD were more impaired than patients with svPPA at baseline and continued to be at follow-up, despite similar disease duration. By contrast, behavioral impairments differed between patient groups at baseline and at follow-up. At baseline, patients with bvFTD exhibited higher levels of apathy and changes in eating than patients with svPPA; disinhibited and stereotypical behaviors were similar. Over the years, patients with bvFTD showed reduction in disinhibition and stereotypical behavior while apathy and eating changes increased. By contrast, all measured behaviors increased in patients with svPPA over time. Finally, only apathy made longitudinal contributions to functional disability in patients with svPPA, whereas apathy and stereotypical behavior were associated with increased disability in patients with bvFTD. CONCLUSIONS: Despite shared overlapping baseline behavioral symptoms, patients with bvFTD are more functionally impaired than patients with svPPA. Apathy has a strong role in disability for both bvFTD and svPPA, but stereotypical behaviors only contributed to functional deficits in patients with bvFTD. Our findings suggest that rigid/compulsive behaviors may in fact support activity engagement in patients with svPPA. Taken together, our results indicate that interventions to reduce disability in the FTD spectrum require an alternative rationale in comparison to Alzheimer disease dementia, and should carefully weigh the interaction of behavioral symptoms and functional status.
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ADL deficits do not always show association with cognitive scores in various dementia subtypes.
“Moreover, ADL deficits do not always show association with cognitive scores in various dementia subtypes (Mioshi et al., 2007; O'Connor, Clemson, Flanagan, et al., 2016; O'Connor, Clemson, Hornberger, et al., 2016), highlighting the importance of including ADL scores in studies investigating wellbeing of carers of people with dementia.”
From Exploring the impact of carer stressors and psychological inflexibility on depression and anxiety in family carers of people with dementia (2020) · cites this paper as O'Connor, Clemson, Hornberger, et al., 2016
The Results (Demographics and Longitudinal changes; pages unavailable) show that bvFTD patients scored higher on the cognitive test than svPPA patients, yet had worse ADL function. This supports the point that cognitive scores do not necessarily track ADL deficits across these two subtypes. The paper does not, however, report a direct test of the association between cognitive and ADL scores. (LLM, conf=0.78)
Experimental — accuracy not yet measuredLiterature demonstrated that BADL, IADL, DAD and FAQ can detect functional decline in bvFTD over extensive follow-up time (1-7 years).
“Overall, literature demonstrated these measures can detect functional decline in bvFTD over extensive follow-up time (1–7 years) (Knopman et al., 2008; Mioshi and Hodges, 2009; O’Connor et al., 2016; Staffaroni et al., 2019b; Giebel et al., 2021).”
From The pursuit for markers of disease progression in behavioral variant frontotemporal dementia: a scoping review to optimize outcome measures for clinical trials (2024) · cites this paper as O’Connor et al., 2016
The majority of longitudinal studies supported a crescendo-decrescendo trajectory of behavior in bvFTD, in which progressive and diverse behavioral disturbances were followed by dominating apathy.
“The majority of longitudinal studies (including a clinico-pathological study) supported a crescendo-decrescendo trajectory of behavior in bvFTD, in which progressive and diverse behavioral disturbances were followed by dominating apathy (Chow et al., 2012; O’Connor et al., 2016; Borges et al., 2019; Cosseddu et al., 2019).”
From The pursuit for markers of disease progression in behavioral variant frontotemporal dementia: a scoping review to optimize outcome measures for clinical trials (2024) · cites this paper as O’Connor et al., 2016
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- Authors
- O'Connor, C. M., Clemson, L., Hornberger, M., Leyton, C. E., Hodges, J. R., Piguet, O., & Mioshi, E.
- Affiliations
- Ageing, Work & Health Research Unit (CMO, LC) and Speech Pathology (CEL), Faculty of Health Sciences, University of Sydney, Australia; Faculty of Medicine and Health Sciences (MH, EM), University of East Anglia, UK; Neuroscience Research Australia (CEL, JRH, OP); and ARC Centre of Excellence in Cognition and its Disorders (JRH, OP) and School of Medical Sciences (JRH, OP), University of New South Wales, Australia.
- University of East Anglia (GB)
- Corresponding author
- Mioshi, Eneida
- ORCID
- Venue
- Neurology Clinical Practice
- Published
- 2016-10
- Volume
- 6
- Issue
- 5
- Pages
- 419-428
- ISSN
- 2163-0402 (ISSN-L)
- 2163-0933
- PMC
- PMC5100706
- OpenAlex
- W2443158049
- Cited by
- 73
- References
- 46
- Citations by year
- 2026: 7 · 2025: 6 · 2024: 8 · 2023: 7 · 2022: 5 · 2021: 9 · 2020: 15 · 2019: 4 · 2018: 6 · 2017: 5 · 2016: 1
- FWCI
- 4.74
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- cc-by-nc-nd
- Locations
- Neurology Clinical Practice (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- UEA Digital Repository (University of East Anglia) (acceptedVersion)
- ePrints Soton (University of Southampton) (acceptedVersion)
- Funders
- Alzheimer's Association
- National Health and Medical Research Council (1037746)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Psychology › Clinical Psychology › Historical and Modern Theater Studies
- Keywords
- frontotemporal dementia, behavioral variant frontotemporal dementia, semantic dementia, functional disability, behavioral symptoms, apathy, stereotypy, disinhibition, longitudinal change, disability assessment
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