Caregiver Burden and Needs in Frontotemporal Dementia

Diehl‐Schmid, Janine; Schmidt, Eva-Maria; Nunnemann, Sabine; Riedl, Lina; Kurz, Alexander; Förstl, Hans; Wagenpfeil, Stefan; Cramer, B.

doi:10.1177/0891988713498467

Cited by 85 publications

(115 citation statements)

References 15 publications

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“…The diagnosis of bvFTD relies upon subjective behavioral features, including behavioral disinhibition, apathy or loss of interest, loss of sympathy or empathy, compulsive stereotypic behavior and dietary changes [2]. An accurate diagnosis is important because bvFTD affects patients’ lives and has profound implications for their families and communities [3]. Burden and stress are higher among bvFTD caregivers than those of patients with AD or other dementias [4–6].…”

Section: Introductionmentioning

confidence: 99%

When a Little Knowledge Can Be Dangerous: False-Positive Diagnosis of Behavioral Variant Frontotemporal Dementia among Community Clinicians

Shinagawa¹,

Catindig²,

Block³

et al. 2016

Dement Geriatr Cogn Disord

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Background: Accurate diagnosis of behavioral variant frontotemporal dementia (bvFTD) is important as patients' behavioral symptoms have profound implications for their families and communities. Since the diagnosis of bvFTD derives from behavioral features, accurate identification of patients can be difficult for non-specialists. Concrete rates of diagnostic accuracy among non-specialists are unavailable. Methods: To examine the accuracy of community clinicians' diagnoses of bvFTD and to identify patient characteristics leading to misdiagnosis, we reviewed the charts and referral letters of 3,578 patients who were seen at our specialized center. Referral diagnosis and reasons, manifesting symptoms, demographic data, Mini-Mental State Examination score, Clinical Dementia Rating score and Neuropsychiatric Inventory score were extracted. Results: 60% of patients assigned a single diagnosis of bvFTD by community clinicians did not have bvFTD according to specialists. Compared to specialist-confirmed bvFTD patients, false bvFTD patients were more likely to be depressed and to be non-Caucasian, showed less euphoria, apathy, disinhibition and abnormal eating behaviors, had milder disease severity and better overall cognition. bvFTD was mentioned by referring clinicians in 86% of specialist-confirmed bvFTD cases, but missed cases were called Alzheimer's, Parkinson's or Huntington's disease, or progressive aphasia. Conclusion: These results revealed a widespread lack of familiarity with core diagnostic symptoms among non-specialists and suggest that community clinicians require specialized diagnostic support before providing a definitive diagnosis of bvFTD.

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Section: Introductionmentioning

confidence: 99%

When a Little Knowledge Can Be Dangerous: False-Positive Diagnosis of Behavioral Variant Frontotemporal Dementia among Community Clinicians

Shinagawa¹,

Catindig²,

Block³

et al. 2016

Dement Geriatr Cogn Disord

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show abstract

“…BvFTD is associated with reduced life expectancy. Caregiver burden is high and studies have shown that many caregivers suffer from clinically significant depression (Diehl-Schmid et al, 2013). While cognitive impairment might be mild in early stages of bvFTD there is a progressive cognitive decline during the later stages of the disease that eventually leads to an increasing impairment of the activities of daily living (Hsieh et al, 2012).…”

Section: Introductionmentioning

confidence: 99%

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

Diehl‐Schmid

Richard‐Devantoy

Grimmer

et al. 2016

Int J Geriatr Psychiatry

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“…Individuals with bvFTD commonly violate social or moral norms and fail to appreciate the impact of their actions on others (Mendez and Shapira, 2011). For the family members and caregivers of bvFTD patients, disturbances in social behavior are associated with significant caregiver burden and depression (Diehl-Schmid et al , 2013; Passant et al , 2005). …”

Section: Introductionmentioning

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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Caregiver Burden and Needs in Frontotemporal Dementia

Abstract: Support strategies should focus on information and psychosocial support. Given the low prevalence of FTD, internet- and telephone-based strategies appear suitable.

Cited by 85 publications

References 15 publications

When a Little Knowledge Can Be Dangerous: False-Positive Diagnosis of Behavioral Variant Frontotemporal Dementia among Community Clinicians

When a Little Knowledge Can Be Dangerous: False-Positive Diagnosis of Behavioral Variant Frontotemporal Dementia among Community Clinicians

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

Observational themes of social behavioral disturbances in frontotemporal dementia

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