Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions

Nunnemann, Sabine; Kurz, Alexander; Leucht, Stefan; Diehl‐Schmid, Janine

doi:10.1017/s104161021200035x

Cited by 60 publications

(82 citation statements)

References 44 publications

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“…In fact, caregivers of AD patients reported higher levels of burden in the current sample, however, without statistical significance. These findings were unexpected, as they differ from previous findings [6,8,10] and may be due to differences in sample characteristics and the instruments used. For instance, in the present study, the diagnostic groups were paired by CDR level (CDR = 1), whereas in the study by Mioshi et al [26], the bvFTD group was described as severely demented, and in the study by Riedijk et al [4], the duration of dementia was significantly longer in bvFTD patients than in AD patients.…”

Section: Discussioncontrasting

confidence: 99%

“…Therefore, the aims of the present investigation were: (1) to compare caregiver burden and distress in bvFTD and AD and (2) to investigate the association between patients' cognitive, functional and behavioral disturbances and bvFTD and AD caregivers' burden and distress. New knowledge about these associations, especially originating from a developing nation, with a different cultural background and different access to services, may be crucial for the development of effective caregiver interventions that might be suitable across nations [7,10]. Based on previous studies, we hypothesized that bvFTD patients would present higher behavioral disturbances, that their caregivers would report higher levels of burden and distress and that functional and neuropsychiatric symptoms would be more robustly associated with caregiver strain in bvFTD than in AD.…”

Section: Introductionmentioning

confidence: 99%

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Neuropsychiatric Symptoms, Caregiver Burden and Distress in Behavioral-Variant Frontotemporal Dementia and Alzheimer's Disease

Lima-Silva¹,

Bahia²,

Carvalho

et al. 2015

Dement Geriatr Cogn Disord

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Background/Aims: We aimed to compare caregiver burden and distress in behavioral-variant frontotemporal dementia (bvFTD) and Alzheimer's disease (AD) and to investigate which factors contribute to caregivers' burden and distress. Methods: Fifty patients and their caregivers were invited to participate. Among the patients, 20 had a diagnosis of bvFTD and 30 had AD. Caregivers and patients were statistically equivalent for age, sex, education and dementia severity according to Clinical Dementia Rating. The protocol included the Short Zarit Burden Inventory, the Neuropsychiatric Inventory (NPI), Disability Assessment for Dementia (DAD), the Cornell Scale for Depression in Dementia (CSDD), Addenbrooke's Cognitive Examination-Revised, the Executive Interview with 25 Items, Direct Assessment of Functional Status and the Geriatric Anxiety Inventory (GAI). Results: In the NPI, caregivers of bvFTD patients reported a higher presence and severity of neuropsychiatric symptoms and caregiver distress compared to caregivers of AD patients. There was no significant difference in the perceived burden. In bvFTD, DAD and GAI scores were significantly correlated with burden, whereas in AD, burden was correlated with CSDD and NPI scores. Psychiatric symptoms were associated with distress in both groups. Conclusions: Caregivers of bvFTD patients experienced higher levels of distress than caregivers of AD patients. Patients' functional limitations were associated with burden of caregivers of bvFTD patients, whereas neuropsychiatric symptoms were associated with caregiver strain in both groups.

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Section: Discussioncontrasting

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Neuropsychiatric Symptoms, Caregiver Burden and Distress in Behavioral-Variant Frontotemporal Dementia and Alzheimer's Disease

Lima-Silva¹,

Bahia²,

Carvalho

et al. 2015

Dement Geriatr Cogn Disord

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“…[3][4][5] Specific problems of FTD caregivers include delayed diagnosis, young age of patients, behavioral problems, depression, lack of information, lack of suitable care facilities, and poor self-care. 6 As the clinical picture of FTD is distinct from the most common form of dementia, AD, interventions for caregivers, including self-help groups and educational programs, which are usually tailored to the needs of patients with AD, are often not suitable for FTD caregivers. Most care facilities, nursing homes or day centers, are also tailored to older clients, and staff are often unable to cope with the problems that occur in FTD.…”

Section: Introductionmentioning

confidence: 99%

Caregiver Burden and Needs in Frontotemporal Dementia

Diehl‐Schmid

Schmidt

Nunnemann

et al. 2013

J Geriatr Psychiatry Neurol

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103

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“…[73][74][75][76][77][78][79][80][81] Six of these focused on carers of people with dementia, [73][74][75][76][77][78] two focused on carers of people with mental health problems 79,80 and one focused on carers of people with multiple conditions. 81 In terms of types of interventions and outcomes, the literature appeared broadly similar to that covered in medium-and high-quality reviews.…”

Section: Overview Of the Medium-quality Reviewsmentioning

confidence: 99%

Updated meta-review of evidence on support for carers

Thomas

Dalton

Harden

et al. 2017

Health Serv Deliv Res

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BackgroundPolicy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parkeret al.(Parker G, Arksey H, Harden M.Meta-review of International Evidence on Interventions to Support Carers. York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs.ObjectiveTo update what is known about effective interventions to support carers of ill, disabled or older adults.DesignRapid meta-review.SettingAny relevant to the UK health and social care system.ParticipantsCarers (who provide support on an unpaid basis) of adults who are ill, disabled or older.InterventionsAny intervention primarily aimed at carers.Main outcome measuresAny direct outcome for carers.Data sourcesDatabase searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016.Review methodsWe used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel®2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review.ResultsSixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews.LimitationsThe nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary.ConclusionsThere is no ‘one size fits all’ intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers.Future workMore good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation.Study registrationThis study is registered as PROSPERO CRD42016033367.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions

Abstract: More research and funding are needed to elucidate the complex construct of burden of FTLD caregivers to identify and quantify their problems and needs in order to develop helpful interventions and services.

Cited by 60 publications

References 44 publications

Neuropsychiatric Symptoms, Caregiver Burden and Distress in Behavioral-Variant Frontotemporal Dementia and Alzheimer's Disease

Neuropsychiatric Symptoms, Caregiver Burden and Distress in Behavioral-Variant Frontotemporal Dementia and Alzheimer's Disease

Caregiver Burden and Needs in Frontotemporal Dementia

Updated meta-review of evidence on support for carers

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