Burden of caregivers of patients with frontotemporal lobar degeneration – a scoping review

Abstract

Background: Frontotemporal lobar degeneration (FTLD) is the second-most common cause of young-onset dementia. Personality and behavior changes lead to high caregiver stress and burden, but little support is available. Our aim is to present the evidence on the characteristics, challenges and unmet needs of caregivers as well as on possible interventions. Methods: We conducted a scoping review on caregiver burden using PubMed, Web of Science and ScienceDirect. A total of 69 articles were considered eligible and were analyzed in the present study. Results: Through the analysis of 69 empirical articles, our results show that caregivers of patients with FTLD are often younger in age, have children and find behavioral disturbances to be the most burdensome. Nine studies assessed the needs of and support for caregivers. Ten studies compared the burden in different forms of FTLD, 19 compared FTLD to other types of dementia, and one compared the caregiver burden between two countries. Eight studies reported on interventions for caregivers or interventions taking burden into account. One study assessed the support structure for caregivers of FTLD patients. Five case reports, eight research overviews and three reviews addressed specific needs and challenges. Conclusions: Further research should reproduce and validate efficacious interventions and focus on underage children of FTLD patients and findings from non-Western countries. Additionally, support structures for FTLD caregivers should be assessed and extended. Awareness both in the wider population and among healthcare professionals is an urgent need for the future.

‘They simply do not understand’: a focus group study exploring the lived experiences of family caregivers of people with frontotemporal dementia

“…Both changes in behavior and difficulties with communicating are known to be challenging and burdensome for caregivers (Caceres et al, 2016;Diehl-Schmid et al, 2013). While the wide variety of symptoms poses unique challenges for caregivers, there seems to be a knowledge gap regarding effective support for caregivers of persons with FTD (Gossink et al, 2018a;Karnatz et al, 2019). Therefore, this study aims to explore the lived experiences and needs of spouses and other family caregivers of persons with FTD to facilitate the development of support strategies and interventions.…”

Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) – a non-randomized mixed-method feasibility study

“…Regarding the sample characteristics, some corresponds approximately to the general distribution like the mean age about 62 years of the person with bvFTD at disease onset. Although current studies show that men and women are nearly equally affected by the disease [4] and the majority of carers of people with FTLD are women [7], only female primary carers and one female person of bvFTD were willing to take part in the study. This is therefore important to look carefully at whether the finding would have been different in terms of the perceptions of male carers and more women with bvFTD.…”

“…The affected persons themselves often do not notice that they react differently to their environments than before and often do not have insight into their illness [10,18]. Due to severely impaired emotional connections and interactions (quality of relationship), family carers of people with bvFTD are also more burdened by providing care and support and coping with everyday life than carers of people with Alzheimer's disease [3,7]. In addition, there is a lack of adequate support systems for the early phase of life [19][20][21][22].…”

“…Life expectancy after diagnosis is short and ranges from 1.3 to 6.5 years [6]. Most of them are living at home, cared for by a relative [7].…”

Caregiver burden in patients with behavioural variant frontotemporal dementia and non-fluent variant and semantic variant primary progressive aphasia

“…Prevailing symptoms in bvFTD are early disinhibition, apathy, loss of sympathy and empathy. Similar behavioural changes may also occur in svPPA and in advanced phases of nfvPPA (Hsieh et al 2016;Liu et al 2017Liu et al , 2018Karnatz et al 2019;Besser and Galvin 2019). The question arises whether impairments of behaviour and personality and neuropsychiatric symptoms contribute to caregiver burden also in bvFTD, svPPA and nfvPPA.…”