Behavioral variant frontotemporal dementia: advanced disease stages and death. A step to palliative care

Diehl‐Schmid, Janine; Richard‐Devantoy, Stéphane; Grimmer, Timo; Förstl, Hans; Jox, Ralf J.

doi:10.1002/gps.4540

Cited by 11 publications

(5 citation statements)

References 23 publications

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“…The high frequency of acute myocardial infarction in FTLD found here differs from that of previous studies, where pneumonia was the leading cause of death [3]. FTLD is associated with cardiovascular comorbidities and patients are predisposed for respiratory diseases [25,26].…”

Section: Discussioncontrasting

confidence: 87%

Cause of death in autopsy‐confirmed dementia disorders

Degerskär

Englund

2020

Euro J of Neurology

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Background and purpose Dementia disorders predispose for lethal complications and decrease life expectancy. A more profound knowledge regarding end‐stage conditions in dementia could therefore ameliorate treatment and care of these patients. Methods Autopsy reports on 207 deceased individuals with clinically diagnosed neurocognitive disorder/dementia and on 200 neurocognitively healthy individuals of the same age range were studied. Autopsy results, especially cause of death, were compared between the dementia and the control groups. Results The two most frequent causes of death in the dementia population were pneumonia (34.3%) and acute myocardial infarction (30.4%). This result differed from that of the control group, in which acute myocardial infarction (42.5%) accounted for most events of deaths, followed by circulatory failure (12.5%). The leading cause of death varied amongst dementia subtypes. Further, in Alzheimer’s disease pneumonia was more frequent in severe/advanced cases whilst acute myocardial infarction was more common in milder cases. Conclusions Cause of death differed between the demented and the general population of the same age and between subtypes of dementia. Alzheimer’s disease severity was reflected in different final conditions. The findings have relevance for the final stage care and treatment in dementia disorders.

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Section: Discussioncontrasting

confidence: 87%

Cause of death in autopsy‐confirmed dementia disorders

Degerskär

Englund

2020

Euro J of Neurology

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“…Our result indicating admission to residential care 2.8 years after diagnosis aligns with a recent German study that reported a median of 2.0 ± 2.5 years between diagnosis and residential care admission for a bvFTD cohort. 31 Future studies should investigate time from diagnosis to residential care admission in a larger cohort of bvFTD phenotypes.…”

Section: Discussionmentioning

confidence: 99%

Behavioral-variant frontotemporal dementia

et al. 2017

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Objective:To identify distinct behavioral phenotypes of behavioral-variant frontotemporal dementia (bvFTD) and to elucidate differences in functional, neuroimaging, and progression to residential care placement.Methods:Eighty-eight patients with bvFTD were included in a cluster analysis applying levels of disinhibition and apathy (Cambridge Behavioural Inventory-Revised) to identify phenotypic subgroups. Between-group (Kruskal-Wallis, Mann-Whitney U) functional differences (Disability Assessment for Dementia) and time to residential care placement (survival analyses) were examined. Cortical thickness differences (whole-brain MRI) were analyzed in patients with bvFTD vs healthy controls (n = 30) and between phenotypic subgroups.Results:Four phenotypic subgroups were identified: primary severe apathy (n = 26), severe apathy and disinhibition (n = 26), mild apathy and disinhibition (n = 27), and primary severe disinhibition (n = 9). Patients with severely apathetic phenotypes were more functionally impaired and had more extensive brain atrophy than those with mild apathy or severe disinhibition alone. Further imaging analyses indicated that the right middle temporal region is critical for the development of disinhibition, an association that remains with disease progression and in the context of severe apathy. Finally, no difference in time to residential care admission was found between phenotypes.Conclusions:This study reveals that different clinical behavioral phenotypes of bvFTD have differing profiles of functional decline and distinct patterns of associated cortical changes. These findings emphasize the importance of apathy in functional impairment, highlight the role of the right temporal region in disinhibition, and suggest that disability may be a sensitive outcome measure for treatments targeting reduction of apathy. These phenotypes could also support understanding of prognosis and clinical management.

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“…(19) We also found five reports of caregivers mentioning distress regarding caring for someone with FTD or coping with life after FTD. Diehl-Schmid and colleagues (28) report that "patients with bvFTD are less likely to be cared for at home until death than patients with Late Onset Dementia (LOD). BvFTD caregivers are often faced with the double burden of providing care while performing other roles, such as parenting, working, and managing the household."…”

Section: Discussion Of Burdens In Healthcare Access and Caregiver Dis...mentioning

confidence: 99%

“…In the vast majority of patients, the course of bvFTD is characterized by a progressive disability. Patients lose the ability of self-care, most patients become unable to carry out even the basal activities of daily living and ultimately become dependent on long-term care (28). Recommendations Specifically, when older adults start displaying behaviours that are criminal and a change from their baseline behaviour, an evaluation for neurologic disorders and possibly neuropsychological testing, coupled with neuroimaging, is helpful in ruling out a neurodegenerative disease.…”

Section: Capacity or Autonomymentioning

confidence: 99%

A Scoping Review of Ethical and Legal Issues in Behavioural Variant Frontotemporal Dementia

2023

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Behavioural variant frontotemporal dementia (bvFTD) is a subtype of frontotemporal dementia characterized by changes in personality, social behaviour, and cognition. Although neural abnormalities cause bvFTD patients to struggle with inhibiting problematic behaviour, they are generally considered fully autonomous individuals. Subsequently, bvFTD patients demonstrate understanding of right and wrong but are unable to act in accordance with moral norms. To investigate the ethical, legal, and social issues associated with bvFTD, we conducted a scoping review of academic literature with inclusion & exclusion criteria and codes derived from our prior work. Among our final sample of fifty-six articles, four mentioned bvFTD patient-offenders as unfit to stand trial by insanity, and sixteen mentioned the use of dementia evidence in a court of law to better understand the autonomy of bvFTD patients. Additional emergent issues that were discovered include: training police officers to handle situations involving bvFTD patients and educating healthcare providers on how to help caregivers navigate bvFTD. The current literature highlights the inadequacy of traditional applications of medico-legal categories such as autonomy, capacity and competence, in informing cognitive capacity assessments in clinical and legal settings and deserves consideration by neuroethicists.

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Behavioral variant frontotemporal dementia: advanced disease stages and death. A step to palliative care

Cited by 11 publications

References 23 publications

Cause of death in autopsy‐confirmed dementia disorders

Cause of death in autopsy‐confirmed dementia disorders

Behavioral-variant frontotemporal dementia

A Scoping Review of Ethical and Legal Issues in Behavioural Variant Frontotemporal Dementia

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