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 c… Show more
“…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.…”
“…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.…”
“…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.…”
Section: Discussionmentioning
confidence: 95%
“…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].…”
Section: Behavioral Variant Frontotemporal Dementia and Social Cognitionmentioning
confidence: 99%
“…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].…”
Background: One of the core symptoms of behavioural variant frontotemporal dementia (bvFTD) is the early loss of social cognitive abilities, which has a deteriorating impact on everyday interaction and the quality of dyadic relationships. Marte Meo® (MM) counselling is a video-based intervention that aims to maintain or improve the quality of dyadic relationships. This non-randomized mixed-method study aimed to evaluate the feasibility of the intervention in practice with primary carers of persons with bvFTD as well as the feasibility of a future confirmatory trial. Methods: A pilot effect study with a quasi-experimental, one-group, pre-post design and double pre-measurement was conducted. Data were collected at three time points (t0, t1 after 2 weeks, and t2 after 6 weeks) using videography and several measurement instruments. Between t1 and t2, each primary carer received five MM counselling sessions. The outcomes included positive and negative affect, behavioural and psychological symptoms in dementia (BPSD), the interpersonal abilities of the person with dementia, the sensitivity and distress of the primary carers due to BPSD, the manageability of BPSD, the personal goal attainment by means of MM counselling, and the quality of the dyadic relationships. The pilot process evaluation focused on the primary carers' and the interventionist's perceived benefits and perceptions of the intervention process using questionnaires and interviews. Results: Five dyads were enrolled. Regarding the feasibility of the intervention, MM counselling seems to be appropriate and useful for the target group. Although the recruitment of persons with reliable bvFTD diagnoses was very time consuming and complex, the intervention was well accepted by the dyads, and regarding goal attainment, all carers benefited as much or even more than they expected. The study also showed that the benefits of MM counselling depend on whether the primary carer has accepted his/her relative's dementia. Regarding the feasibility of a future confirmatory trial, certain outcomes, particularly positive affect, distress due to BPSD, and the quality of the dyadic relationship, seem to be appropriate for describing possible effects. Conclusion: Overall, the intervention seems feasible for this target group. A future confirmatory trial should be planned as a multicentre pilot trial with an extension option.
“…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.…”
Studies on caregiver burden in patients with frontotemporal lobar degeneration are rare, differ methodologically and show variable results. Single center longitudinal pilot study on caregiver burden and potential risk factors in patients with behavioural variant frontotemporal dementia (bvFTD) and semantic (svPPA) and non-fluent variants (nfvPPA) primary progressive aphasia. Forty-six bvFTD, nine svPPA, and six nfvPPA patients and caring relatives were analysed for up to 2 years using the Mini-Mental State Examination as global measure for cognitive performance, Frontal Assessment Battery (frontal lobe functions), Frontal Behavioural Inventory (personality and behaviour), Neuropsychiatric Inventory (dementia-related neuropsychiatric symptoms), Barthel Index and Lawton IADL Scale (basic and instrumental activities of daily living), the Caregiver Strain Index (CSI), and in most participants also the Zarit Burden Interview (ZBI). CSI baseline sum scores were highest in bvFTD (mean ± SD 5.5 ± 3.4, median 5, IQR 6), intermediate in svPPA (2.9 ± 2.3; 3; 3.5) and low in nfvPPA (1.6 ± 2.1; 1; 2). Similar differences of caregiver burden were found using the ZBI. During follow-up, CSI and ZBI sum scores deteriorated in svPPA, not in bvFTD and nfvPPA, and correlated significantly with personality and behaviour, neuropsychiatric symptoms, caregiver age, and instrumental, but not basic activities of daily living, Mini-Mental State Examination scores or frontal lobe functions. This study reveals differences in caregiver burden in variants of frontotemporal lobar degeneration. Caregivers should be systematically asked for caregiver burden from the time of the diagnosis to provide comprehensive support in time.
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