Uncommon dementia and the carer's perspective

LoGiudice, Dina; Hassett, Anne

doi:10.1017/s1041610205002048

Cited by 25 publications

(25 citation statements)

References 24 publications

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“…In contrast, behavioural management strategies for the patients themselves have thus far proven less effective (especially in FTLD) [36]. Our results indicate that interventions to address problems in anterograde memory and emotion recognition have the potential to be particularly helpful in reducing carer burden.…”

Section: Discussionmentioning

confidence: 89%

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

Miller

Mioshi

Savage³

et al. 2013

Dement Geriatr Cogn Disord

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Background/Aims: Carer burden has been associated with other carer-reported factors (e.g. depression), but less is known about the influence of more independent variables. We aimed to determine the impact of cognitive deficits, demographic variables and dementia subtype on carer burden. Methods: Patients with Alzheimer's dementia (n = 35) or frontotemporal lobar degeneration (n = 61) underwent assessment of anterograde memory, word generation, impulse control and emotion recognition. Age, sex, relationship type, disease duration and diagnosis were also considered. Carers completed the Zarit Burden Interview. Results: In bivariate regression analyses, carer burden was related to age, diagnosis, memory, impulse control and emotion recognition. Stepwise multivariate regression revealed independent contributions by patient age, memory and emotion recognition, explaining 23% of the variance. Conclusion: The findings could help refine interventions and carer support.

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Section: Discussionmentioning

confidence: 89%

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

Miller

Mioshi

Savage³

et al. 2013

Dement Geriatr Cogn Disord

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“…BvFTD patients have unique caregiver needs compared to other dementias (LoGiudice and Hassett, 2005; Nunnemann et al , 2012). For example, caregivers can anticipate social intrusions in more enclosed or smaller spaces, whereas they must anticipate wandering and difficulty maintaining physical interpersonal proximity in more open spaces.…”

Section: Discussionmentioning

confidence: 99%

Observational themes of social behavioral disturbances in frontotemporal dementia

Barsuglia

Nedjat-Haiem

Shapira

et al. 2014

Int. Psychogeriatr.

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Background Caregivers report early disturbances in social behavior among patients with behavioral variant frontotemporal dementia (bvFTD); however, there are few direct observational studies of these social behavioral disturbances. This study aimed to identify social behavioral themes in bvFTD by direct observation in naturalistic interactions. The identification of these themes can help caregivers and clinicians manage the social behavioral disturbances of this disease. Methods Researchers observed 13 bvFTD patients in their homes and community-based settings and recorded field notes on their interpersonal interactions. A qualitative analysis of their social behavior was then conducted using ATLAS.ti application and a constant comparison method. Results Qualitative analysis revealed the following themes: (1) diminished relational interest and initiation, indicating failure to seek social interactions; (2) lack of social synchrony/intersubjectivity, indicating an inability to establish and maintain interpersonal relationships; and (3) poor awareness and adherence to social boundaries and norms. These themes corresponded with changes from caregiver reports and behavioral scales. Conclusion This analysis indicates that real-world observation validates the diagnostic criteria for bvFTD and increases understanding of social behavioral disturbances in this disorder. The results of this and future observational studies can highlight key areas for clinical assessment, caregiver education, and targeted interventions that enhance the management of social behavioral disturbances in bvFTD.

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“…The early onset of disease may have financial implications if the person is still working, or if the carer also needs to stop work in order to take on an assistive role. This change of roles from spouse to carer at an earlier life stage, while in some cases dependent children are still living at home (LoGiudice & Hassett, 2005), can understandably lead to great levels of burden.…”

Section: Impact Of Functional Disability and Disease Progression On Fmentioning

confidence: 99%

“…We will also combine elements of published studies (Diehl, Mayer, Förstl, & Kurz, 2003;Grinberg et al, 2008;Merrilees & Ketelle, 2010; into the examples. The primary stage of any management plan in PPA should involve education to both formal and family carers about the disease process and resulting clinical manifestations of symptoms and behaviours (LoGiudice & Hassett, 2005). When carers lack clear understanding of the cause of behaviours, frustration, stress, and depression tend to arise.…”

Section: Improving Functional Abilities In the Ppas-therapeutic Recommentioning

confidence: 99%

Functional disability in primary progressive aphasia

2014

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Background: In primary progressive aphasia (PPA), assessment of language predominates over assessment of functional impairment in activities of daily living (ADLs) in clinical and research environments. Most of the knowledge on functional disability in PPA relies largely on anecdotal experience and limited numbers of studies published to date. Aims: (1) To describe the different patterns of ADL functional disability in the main PPA variants: semantic variant, nonfluent aphasia, and the more recently defined logopenic variant; (2) to draw relations between functional disability, cognitive, and behavioural symptoms in the PPAs; (3) to examine the impact of functional disability on carer burden, and (4) to provide specific strategies to address the described problems. Main Contribution: Profiles of disease progression are described from a functional perspective, as well as the relationship (or lack thereof) between functional disability and cognitive and behavioural symptoms. Dementia-management strategies for carers and professionals in overcoming day-to-day difficulties are provided, and the impact of functional deficits on those around the patient, including their spouses and children, are discussed. Conclusions: Patterns of ADL functional disability and their progression vary between PPA subtypes. Understanding these different profiles of impairment is critical to the development of tailored interventions. There is a range of therapeutic strategies which can be trialled to promote improved ADL functioning, which in turn may also help in reducing levels of carer burden in PPA.

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Uncommon dementia and the carer's perspective

Cited by 25 publications

References 24 publications

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

Observational themes of social behavioral disturbances in frontotemporal dementia

Functional disability in primary progressive aphasia

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