The Impact of Dementia Severity on Caregiver Burden in Frontotemporal Dementia and Alzheimer Disease

2013 ◽  
Vol 27 (1) ◽  
pp. 68-73 ◽  
Author(s):  
Eneida Mioshi ◽  
David Foxe ◽  
Felicity Leslie ◽  
Sharon Savage ◽  
Sharpley Hsieh ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Caregiver Burden ◽  
Dementia Severity ◽  
The Impact

scholarly journals Impact of Confinement on the Burden of Caregivers of Patients with the Behavioral Variant of Frontotemporal Dementia and Alzheimer Disease during the COVID-19 Crisis in France

2020 ◽  
pp. 127-134
Author(s):  
Claire Boutoleau-Bretonnière ◽  
Hélène Pouclet-Courtemanche ◽  
Aurélie Gillet ◽  
Amélie Bernard ◽  
Anne-Laure Deruet ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Caregiver Burden ◽  
Behavioral Change ◽  
Clinical Presentation ◽  
Neuropsychiatric Symptoms ◽  
Behavioral Changes ◽  
Behavioral Disturbances ◽  
The Impact

<b><i>Introduction:</i></b> The clinical presentation of the behavioral variant of frontotemporal dementia (bvFTD) differs from that of Alzheimer disease (AD), with major impairments in behavioral functions in bvFTD and cognitive impairment in AD. Both behavioral disturbances in bvFTD and cognitive impairment in AD contribute to caregiver burden. <b><i>Objective:</i></b> To investigate the impact of home confinement during the COVID-19 crisis on the burden of caregivers of bvFTD or AD patients. <b><i>Methods:</i></b> During the COVID-19 lockdown in France, neurologists and neuropsychologists from the Memory Center of Nantes Hospital conducted teleconsultations for 38 AD patients and 38 bvFTD patients as well as for their caregivers. During these consultations, caregivers were invited to rate the change in their burden during home confinement. They were also invited to rate behavioral or emotional changes in the patients during, compared with before, the confinement. <b><i>Results:</i></b> Twenty-two bvFTD caregivers and 14 AD caregivers experienced an increase in burden. For bvFTD caregivers, this increased burden occurred regardless of behavioral changes, while AD caregivers experienced an increased burden related to changes in patients’ neuropsychiatric symptoms. Among the whole cohort, 2 factors were associated with increased caregiver burden: behavioral change and bvFTD. <b><i>Conclusion:</i></b> The results demonstrate that during home confinement in the COVID-19 crisis, neuropsychiatric symptoms were the core factor that impacted caregiver burden in different ways depending on the disease.

scholarly journals Disease Progression in Mild Dementia due to Alzheimer Disease in an 18-Month Observational Study (GERAS): The Impact on Costs and Caregiver Outcomes

2017 ◽  
Vol 7 (1) ◽  
pp. 87-100 ◽  
Author(s):  
Roy W. Jones ◽  
Jeremie Lebrec ◽  
Kristin Kahle-Wrobleski ◽  
Grazia Dell’Agnello ◽  
Giuseppe Bruno ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Cognitive Decline ◽  
Caregiver Burden ◽  
Functional Decline ◽  
Community Dwelling ◽  
Societal Costs ◽  
Point Reduction ◽  
Number Of Patients ◽  
Monthly Total ◽  
The Impact

Background/Aims: We assessed whether cognitive and functional decline in community-dwelling patients with mild Alzheimer disease (AD) dementia were associated with increased societal costs and caregiver burden and time outcomes. Methods: Cognitive decline was defined as a ≥3-point reduction in the Mini-Mental State Examination and functional decline as a decrease in the ability to perform one or more basic items of the Alzheimer’s Disease Cooperative Study Activities of Daily Living Inventory (ADCS-ADL) or ≥20% of instrumental ADL items. Total societal costs were estimated from resource use and caregiver hours using 2010 costs. Caregiver burden was assessed using the Zarit Burden Interview (ZBI); caregiver supervision and total hours were collected. Results: Of 566 patients with mild AD enrolled in the GERAS study, 494 were suitable for the current analysis. Mean monthly total societal costs were greater for patients showing functional (+61%) or cognitive decline (+27%) compared with those without decline. In relation to a typical mean monthly cost of approximately EUR 1,400 at baseline, this translated into increases over 18 months to EUR 2,254 and 1,778 for patients with functional and cognitive decline, respectively. The number of patients requiring supervision doubled among patients showing functional or cognitive decline compared with those not showing decline, while caregiver total time increased by 70 and 33%, respectively and ZBI total score by 5.3 and 3.4 points, respectively. Conclusion: Cognitive and, more notably, functional decline were associated with increases in costs and caregiver outcomes in patients with mild AD dementia.

scholarly journals Are we comparing frontotemporal dementia and Alzheimer disease patients with the right measures?

2016 ◽  
Vol 28 (9) ◽  
pp. 1481-1485 ◽  
Author(s):  
Mariel B. Deutsch ◽  
Li-Jung Liang ◽  
Elvira E. Jimenez ◽  
Michelle J. Mather ◽  
Mario F. Mendez
Keyword(s):  
Cognitive Function ◽  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Rating Scales ◽  
Neuropsychiatric Symptoms ◽  
Clinical Manifestations ◽  
Clinical Dementia Rating ◽  
Dementia Severity ◽  
The Right ◽  
And Behavior

ABSTRACTBackground:Clinical research studies of behavioral variant frontotemporal dementia (bvFTD) often use Alzheimer disease (AD) as a comparison group for control of dementia variables, using tests of cognitive function to match the groups. These two dementia syndromes, however, are very different in clinical manifestations, and the comparable severity of these dementias may not be reflected by commonly used cognitive scales such as the Mini-Mental State Examination (MMSE).Methods:We evaluated different measures of dementia severity and symptoms among 20 people with bvFTD compared to 24 with early-onset AD.Results:Despite similar ages, disease-duration, education, and cognitive performance on two tests of cognitive function, the MMSE and the Montreal Cognitive Assessment (MoCA), the bvFTD participants, compared to the AD participants, were significantly more impaired on other measures of disease severity, including function (Functional Assessment Questionnaire (FAQ)), neuropsychiatric symptoms (Neuropsychiatric Inventory (NPI)), and global dementia stage (Clinical Dementia Rating Scales (CDRs)). However, when we adjusted for the frontotemporal lobar degeneration-CDR (FTLD-CDR) in the analyses, the two dementia groups were comparable across all measures despite significant differences on the cognitive scales.Conclusion:We found tests of cognitive functions (MMSE and MoCA) to be insufficient measures for ensuring comparability between bvFTD and AD groups. In clinical studies, the FTLD-CDR, which includes additional language and behavior items, may be a better overall way to match bvFTD and AD groups on dementia severity.

scholarly journals Apathy and Disinhibition Related to Neuropathology in Amnestic Versus Behavioral Dementias

2019 ◽  
Vol 34 (5) ◽  
pp. 337-343 ◽  
Author(s):  
Letizia G. Borges ◽  
Alfred W. Rademaker ◽  
Eileen H. Bigio ◽  
M-Marsel Mesulam ◽  
Sandra Weintraub
Keyword(s):  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Frontotemporal Lobar Degeneration ◽  
Neuropsychiatric Symptom ◽  
Retrospective Data ◽  
Alzheimer Type ◽  
Behavioral Variant Frontotemporal Dementia ◽  
Dementia Severity ◽  
Over Time

Objectives: Investigating the frequency of apathy and disinhibition in patients clinically diagnosed with dementia of the Alzheimer type (DAT) or behavioral variant frontotemporal dementia (bvFTD) with neuropathology of either Alzheimer disease (AD) or frontotemporal lobar degeneration (FTLD). Methods: Retrospective data from 887 cases were analyzed, and the frequencies of apathy and disinhibition were compared at baseline and longitudinally in 4 groups: DAT/AD, DAT/FTLD, bvFTD/FTLD, and bvFTD/AD. Results: Apathy alone was more common in AD (33%) than FTLD (25%), and the combination of apathy and disinhibition was more common in FTLD (43%) than AD (14%; P < .0001). Over time, apathy became more frequent in AD with increasing dementia severity (33%-41%; P < .006). Conclusions: Alzheimer disease neuropathology had the closest association with the neuropsychiatric symptom of apathy, while FTLD was most associated with the combination of apathy and disinhibition. Over time, the frequency of those with apathy increased in both AD and FTLD neuropathology.

Caregiver Burden in Prion Disease as Compared to Frontotemporal Dementia and Alzheimer Disease

2015 ◽  
Vol 23 (3) ◽  
pp. S141-S142
Author(s):  
Alice Uflacker ◽  
Mary Edmondson ◽  
Chiadi Onyike ◽  
Brian Appleby
Keyword(s):  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Caregiver Burden ◽  
Prion Disease

P2-333: THE CAREGIVER BURDEN AND WEAR IN BEHAVIORAL VARIANT FRONTOTEMPORAL DEMENTIA AND ALZHEIMER DISEASE

2014 ◽  
Vol 10 ◽  
pp. P601-P601
Author(s):  
Thais Bento Lima-Silva ◽  
Valéria Bahia ◽  
Henrique Cerqueira Guimarães ◽  
Viviane Amaral Carvalho ◽  
Paulo Caramelli ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Caregiver Burden ◽  
Behavioral Variant Frontotemporal Dementia

scholarly journals Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic

2021 ◽  
pp. 088307382110012
Author(s):  
Michelle Kowanda ◽  
Lindsey Cartner ◽  
Catherine Kentros ◽  
Alexa R. Geltzeiler ◽  
Kaitlyn E. Singer ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Educational Programs ◽  
Medical Systems ◽  
Medical Needs ◽  
Neurodevelopmental Disabilities ◽  
Delivery Of Services ◽  
The Impact ◽  
The Relationship

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

O4-06-08 Behavioral disturbance in frontotemporal dementia and frontal variant Alzheimer disease

2004 ◽  
Vol 25 ◽  
pp. S87
Author(s):  
Julene K. Johnson ◽  
Anne Lipton ◽  
Stephen Allison ◽  
Kristin Martin-Cook ◽  
Jennifer Merrilees ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Frontotemporal Dementia ◽  
Behavioral Disturbance

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

scholarly journals Disease Progression in Frontotemporal Dementia and Alzheimer Disease: The Contribution of Staging Scales

2020 ◽  
pp. 089198872094423
Author(s):  
Thaís Bento Lima-Silva ◽  
Eneida Mioshi ◽  
Valéria Santoro Bahia ◽  
Mário Amore Cecchini ◽  
Luciana Cassimiro ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Disease Progression ◽  
Frontotemporal Dementia ◽  
Rating Scale ◽  
Severe Disease ◽  
Primary Progressive Aphasia ◽  
Behavioral Changes ◽  
Clinical Dementia Rating ◽  
Dementia Rating Scale ◽  
Disease Stages

Introduction: There is a shortage of validated instruments to estimate disease progression in frontotemporal dementia (FTD). Objectives: To evaluate the ability of the FTD Rating Scale (FTD-FRS) to detect functional and behavioral changes in patients diagnosed with the behavioral variant of FTD (bvFTD), primary progressive aphasia (PPA), and Alzheimer disease (AD) after 12 months of the initial evaluation, compared to the Clinical Dementia Rating scale−frontotemporal lobar degeneration (CDR-FTLD) and the original Clinical Dementia Rating scale (CDR). Methods: The sample consisted of 70 individuals, aged 40+ years, with at least 2 years of schooling, 31 with the diagnosis of bvFTD, 12 with PPA (8 with semantic variant and 4 with non-fluent variant), and 27 with AD. The FTD-FRS, the CDR, and the 2 additional CDR-FTLD items were completed by a clinician, based on the information provided by the caregiver with frequent contact with the patient. The Addenbrooke Cognitive Examination-Revised was completed by patients. After 12 months, the same protocol was applied. Results: The FTD-FRS, CDR-FTLD, and CDR detected significant decline after 12 months in the 3 clinical groups (exception: FTD-FRS for PPA). The CDR was less sensitive to severe disease stages. Conclusions: The FTD-FRS and the CDR-FTLD are especially useful tools for dementia staging in AD and in the FTD spectrum.

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