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.

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.

Zusammenfassung Hintergrund In der ersten Pandemiewelle im Frühjahr 2020 sind in den stationären Langzeitpflegeeinrichtungen überproportional viele Bewohner*innen und Mitarbeiter*innen an COVID-19 erkrankt und hatten den höchsten Anteil im Ausbruchsgeschehen. Leitungspersonen stationärer Altenpflegeeinrichtungen mussten pandemiebedingt teilweise täglich neue eigene Entscheidungen treffen sowie Entscheidungen übergeordneter Stellen interpretieren und integrieren. Ziel der Arbeit Ziel war es zu beschreiben, welche Entscheidungen im Umgang mit der COVID-19-Pandemie von Leitungspersonen stationärer Altenpflegeeinrichtungen zu treffen waren, und welche Konsequenzen sich daraus ergaben. Material und Methoden Es wurde ein qualitatives multizentrisches Querschnittdesign gewählt. Die Datenerhebung fand mittels semistrukturierter Telefoninterviews statt. Die aufgezeichneten Audiodaten wurden transkribiert, mittels Framework Analysis analysiert und in „peer debriefings“ reflektiert. Ergebnisse Es konnten 78 Interviews in 43 Pflegeeinrichtungen geführt werden. Es wurden 3 Hauptthemen mit 10 Subthemen identifiziert: Entscheidungen zu sozialer Teilhabe; Entscheidungen zu Quarantäne und Isolation und Anpassen des Personaleinsatzes. Diskussion Gebraucht werden klarere Information und Anordnungen zur Umsetzung von Maßnahmen, z. B. durch bundesweit einheitliche Vorgaben. In der Informationspolitik werden auch die Gesundheitsämter in der Pflicht gesehen. Konsequenzen ihrer Entscheidungen waren für die Leitungspersonen kaum absehbar und von Unsicherheit geprägt. Verantwortlichkeiten für und Konsequenzen von Entscheidungen in der Pandemie sollten weiter evaluiert werden, um Leitungspersonen für Krisenzeiten zu stärken.