High Caregiver Burden in Young Onset Dementia: What Factors Need Attention?

Lim, Linda Lay Hoon; Zhang, Angeline; Lim, Levinia; Choong, Tanya-Marie Yuen Oi; Silva, Eveline; Ng, Adeline Su Lyn; Kandiah, Nagaendran

doi:10.3233/jad-170409

Cited by 27 publications

(43 citation statements)

References 30 publications

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“…The young-onset nature of the illness and family heritability in HD may account for the higher baseline of caregiver burden. 25 The development, time-dependency, and physical health dimensions of burden on CBI were specifically increased in the anosognosia group. These dimensions correspond, respectively, to the negative feeling from the deviation from expected caregiver's life development (eg "missing out on life," "expected that things would be different at this point in my life"), the restriction on time, and the physical impact as a consequence of caregiving.…”

Section: Discussionmentioning

confidence: 92%

Anosognosia Is Associated With Greater Caregiver Burden and Poorer Executive Function in Huntington Disease

Wibawa

Zombor

Dragović

et al. 2019

J Geriatr Psychiatry Neurol

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Background: Anosognosia, or unawareness of one’s deficits, is estimated to occur in 25% to 50% of Huntington disease (HD). The relationship between anosognosia and increased caregiver burden found in other dementias has not been determined in HD. Methods: Patient–caregiver dyads presenting to a statewide HD clinic were assessed using the Anosognosia Scale and grouped into “anosognosia” and “no anosognosia.” Caregiver burden, measured by Zarit Burden Interview (ZBI) and Caregiver Burden Inventory (CBI), demographic data, and Unified Huntington’s Disease Rating Scale, including Mini-Mental State Examination, Stroop, Trail Making, Verbal Fluency, and Symbol Digit Modalities Tests, were compared between groups. Results: Of the 38 patients recruited, 10 (26.3%) met criteria for anosognosia. Patients with anosognosia elicited higher caregiver burden ratings on both the ZBI (mean difference 16.4 [12.1], P < .001) and CBI (16.7 [15.0], P < .005) while also demonstrating poorer executive function. Except for CAG burden score, between-group characteristics did not differ significantly. Stroop Interference predicted both anosognosia and caregiver burden. Conclusions: In HD, anosognosia is associated with greater caregiver burden and executive deficits. Its occurrence should prompt further patient assessment and increased caregiver support.

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Section: Discussionmentioning

confidence: 92%

Anosognosia Is Associated With Greater Caregiver Burden and Poorer Executive Function in Huntington Disease

Wibawa

Zombor

Dragović

et al. 2019

J Geriatr Psychiatry Neurol

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“…Other studies have found that caregiver burden is higher in YOD patients. 11,47 Spouses of YOD patients tend to experience a high level of distress, stress, caregiver burden, depression and coping difficulties. 6,11,15,47 Increased caregiver psychological distress can be due to a variety of reasons.…”

Section: Caregiver Distress and Burdenmentioning

confidence: 99%

“…11,47 Spouses of YOD patients tend to experience a high level of distress, stress, caregiver burden, depression and coping difficulties. 6,11,15,47 Increased caregiver psychological distress can be due to a variety of reasons. Spouses of YOD patients often assume additional responsibilities such as caring for children and the patient, becoming the breadwinner, and making important financial and social decisions.…”

Section: Caregiver Distress and Burdenmentioning

confidence: 99%

Characteristics of Young-Onset and Late-Onset Dementia Patients at a Remote Memory Clinic

Wong

Kirk

Perlett

et al. 2020

Can. J. Neurol. Sci.

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ABSTRACT:Background:Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2–8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada.Methods:A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests.Results:YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver’s licence.Conclusions:Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.

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“…DRP has consistently been associated with greater caregiver burden and more rapid progression to severe dementia, institutionalization, and death. [34][35][36][37][38] Many forms of dementia, aside from VaD, result from neurodegenerative disease and are associated with various proteinopathies characterized by protein misfolding and aggregation. Aberrant aggregated proteins in AD produce β-amyloid plaques and neurofibrillary tangles (hyperphosphorylated tau aggregates).…”

Section: Introductionmentioning

confidence: 99%

Dementia-related psychosis and the potential role for pimavanserin

2020

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Dementia-related psychosis (DRP) is prevalent across dementias and typically manifests as delusions and/or hallucinations. The mechanisms underlying psychosis in dementia are unknown; however, neurobiological and pharmacological evidence has implicated multiple signaling pathways and brain regions. Despite differences in dementia pathology, the neurobiology underlying psychosis appears to involve dysregulation of a cortical and limbic pathway involving serotonergic, gamma-aminobutyric acid ergic, glutamatergic, and dopaminergic signaling. Thus, an imbalance in cortical and mesolimbic excitatory tone may drive symptoms of psychosis. Delusions and hallucinations may result from (1) hyperactivation of pyramidal neurons within the visual cortex, causing visual hallucinations and (2) hyperactivation of the mesolimbic pathway, causing both delusions and hallucinations. Modulation of the 5-HT2A receptor may mitigate hyperactivity at both psychosis-associated pathways. Pimavanserin, an atypical antipsychotic, is a selective serotonin inverse agonist/antagonist at 5-HT2A receptors. Pimavanserin may prove beneficial in treating the hallucinations and delusions of DRP without worsening cognitive or motor function.

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High Caregiver Burden in Young Onset Dementia: What Factors Need Attention?

Abstract: Targeted support for caregivers of patients with YOD is needed to address the higher CB in this group.

Cited by 27 publications

References 30 publications

Anosognosia Is Associated With Greater Caregiver Burden and Poorer Executive Function in Huntington Disease

Anosognosia Is Associated With Greater Caregiver Burden and Poorer Executive Function in Huntington Disease

Characteristics of Young-Onset and Late-Onset Dementia Patients at a Remote Memory Clinic

Dementia-related psychosis and the potential role for pimavanserin

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