Abstract:Behavioural-variant frontotemporal dementia (bvFTD) is characterised by insidious
changes in personality and interpersonal conduct that reflect progressive
disintegration of the neural circuits involved in social cognition, emotion
regulation, motivation and decision making. The underlying pathology is
heterogeneous and classified according to the presence of intraneuronal
inclusions of tau, TDP-43 or occasionally FUS. Biomarkers to detect these
histopathological changes in life are increasingly important with… Show more
“…Frontotemporal lobar degeneration (FTLD) is a neurodegenerative disorder resulting from brain atrophy in the frontal and temporal lobes, leading to changes in personality, behavior, language skills and forward planning (Piguet and Hodges, 2013). A systematic review conducted in 2016 estimated that FTLD cases constitute 15% of all cases of dementia in individuals younger than 65 or 70 years (different cut-offs were used in the reviewed studies), making it the second-most common form of presenile dementia after Alzheimer's Disease (AD) (Hogan et al, 2016).…”
Section: Introductionmentioning
confidence: 99%
“…There is a lack of information as well as appropriate care facilities. Caregiver depression and reduced caregiver wellbeing can occur as a result of neglecting one's own needs (Piguet and Hodges, 2013).…”
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.
“…Frontotemporal lobar degeneration (FTLD) is a neurodegenerative disorder resulting from brain atrophy in the frontal and temporal lobes, leading to changes in personality, behavior, language skills and forward planning (Piguet and Hodges, 2013). A systematic review conducted in 2016 estimated that FTLD cases constitute 15% of all cases of dementia in individuals younger than 65 or 70 years (different cut-offs were used in the reviewed studies), making it the second-most common form of presenile dementia after Alzheimer's Disease (AD) (Hogan et al, 2016).…”
Section: Introductionmentioning
confidence: 99%
“…There is a lack of information as well as appropriate care facilities. Caregiver depression and reduced caregiver wellbeing can occur as a result of neglecting one's own needs (Piguet and Hodges, 2013).…”
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.
“…The early stage of the disease is associated less with impairment of memory and more with various strong changes in judgement, behaviour, personality and emotions (Rankin et al . , Piguet & Hodges ). The disease tends to affect individuals at a time of life when they have a job and/or a family to attend to (Mendez ), and the neuropsychological and functional abilities in people with FTD are more severely affected than in individuals with other types of dementia (Piguet et al .…”
Behavioural variant frontotemporal dementia (bvFTD) is an early-onset and progressive neurodegenerative disease associated with strong changes in judgement, behaviour, personality and emotions. These changes can cause significant problems in everyday life for people with bvFTD and their families, and have implications for health and society. Currently, there are no suitable evidence-based specific interventions for people with bvFTD. This scoping review aims to identify the self-expressed needs, demands and coping strategies of people with bvFTD. Identifying these issues is the first step towards the development of need-based psycho-social interventions for people with bvFTD. A comprehensive literature research was conducted of German and English scientific articles published between January 2000 and October 2014 using the databases MEDLINE, CINAHL, PsycINFO, PSYNDEX, SocINDEX, GeroLit, the Cochrane Library, ProQuest, the German National Library and additional search strategies in terms of a scoping review. Articles were identified by combining search terms related to 'frontotemporal dementia' with terms related to 'self-expressions', 'needs/demands' and 'coping'. After excluding duplicates, two independent reviewers screened the titles and abstracts of 2317 records for eligibility. Because eligibility could not be assessed from the titles or abstracts of 28 articles, those articles were assessed using the full text. One poster abstract met our research question and a few articles were related, but no article met all of the inclusion criteria. This lack of scientifically based knowledge concerning the perspective of people with bvFTD is discussed with reference to the search strategy and the research questions, disease-related aspects such as changes in behaviour or language and emotions and the difficulties in researching this topic. Recommendations are formulated for future research considering the perspective of people with bvFTD and that will involve the development of appropriate data collection methods. Subsequently, specialised interventions must be developed.
“…La apatía es un síntoma temprano muy común de DFTvc; sin embargo, suele ser catalogado erróneamente como depresión. Se manifiesta como inercia, escasa motivación, falta de interés por las actividades de entretenimientos previos y aislamiento social progresivo (8)(9)(10). Puede coexistir desinhibición, la cual suele ser confundida con un episodio maniaco, trastorno obsesivo-compulsivo o un trastorno de la personalidad.…”
Section: Introductionunclassified
“…Esta lleva a acciones impulsivas, manifestadas como falta de tacto o sutileza para hacer o decir lo que realmente se piensa, excesos en sus gastos, actos con contenido sexual inapropiado y un amplio rango de conductas socialmente embarazosas (comportamientos pueriles, excesiva e inapropiada familiaridad con extraños, desobediencia a las normas, entre otros). En ocasiones, es posible que el síntoma inicial se manifieste como juego patológico o en otros casos, como hiper-religiosidad (9,10). Por otro lado, los pacientes presentan conductas estereotipadas, las que pueden ir desde rutinas motoras repetitivas hasta complejas obsesiones.…”
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