Abstract
BackgroundOne 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.MethodsA 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.ResultsFive 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.ConclusionOverall, the intervention seems feasible for this target group. A future confirmatory trial should be planned as a multicentre pilot trial with an extension option.Trial registrationDRKS00014377. Registered retrospectively on April 11, 2018.
Highlights
One of the core symptoms of behavioural variant frontotemporal dementia is the early loss of social cognitive abilities, which has a deteriorating impact on everyday interaction and the quality of dyadic relationships
Altogether, five dyads were enrolled in the study over the course of 10 months
Person with behavioural variant frontotemporal dementia (bvFTD) Age Sex, male:female bvFTD confirmed by research staff, yes:no Frontotemporal Dementia Rating Scale (FRS) stages, very mild:mild:moderate:severe:very severe:profound Care level, I:II:III
Summary
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. Frontotemporal dementia belongs to a group of neurodegenerative changes caused by various protein deposits in the region of the frontal and temporal lobes [1, 2]. These changes are referred to as frontotemporal lobar degeneration (FTLD). It can affect men and women [4] from the age of 30 but is especially frequent beginning in the sixth decade of life [5]. Most of them are living at home, cared for by a relative [7]
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