Interprofessional Needs Analysis and User-Centred Prototype Evaluation as a Foundation for Building Individualized Digital Education in Dementia Healthcare Supported by Artificial Intelligence: A Study Protocol.

Continuous profession-specific training is necessary to provide high-quality care for people with dementia. Research shows the need for more educational programmes that are personalized and responsive to the learning needs and preferences of staff. Digital solutions supported by artificial intelligence (AI) may be a means of making these improvements. There is a lack of formats that support learners in selecting the right content according to their learning needs and preferences. The project "My INdividual Digital EDucation.RUHR" (MINDED.RUHR) addresses this problem and seeks to develop an automatized delivery system for individual learning content using AI. The sub-project presented here aims to achieve the following: (a) explore learning needs and preferences regarding behavioural changes in people with dementia, (b) develop learning nuggets, (c) evaluate the feasibility of the digital learning platform, and (d) identify optimization criteria. Following the first phase of the framework for the design and evaluation of digital health interventions (DEDHI), we use a qualitative approach with focus group interviews for exploration and development, and co-design workshops and expert audits to evaluate the developed learning nuggets. The developed e-learning tool is the first step in supporting the digital training of healthcare professionals in the context of caring for people with dementia, individualized through AI.

Perspectives on sleep of people living with dementia in nursing homes: a qualitative interview study.

BACKGROUND: Disturbed sleep among people living with dementia in nursing homes is widespread and is associated with diseases and all-cause mortality. This study examined the sleep of people living with dementia from their perspectives in nursing homes and that of the nurses who care for people living with dementia. METHODS: A qualitative cross-sectional study was conducted. A total of 15 people living with dementia and 15 nurses in 11 German nursing homes were enrolled in this study. Data was collected between February and August 2021 through semistructured interviews, which were audio recorded and transcribed. Thematic analyses were performed by three independent researchers. Thematic mind maps and controversial findings were discussed with the Research Working Group of People with Dementia of the German Alzheimer Association. RESULTS: Thematic analysis identified five overarching themes from the nursing home participants regarding sleep patterns: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences of people living with dementia on sleep, (4) environmental factors on sleep, and (5) sleep strategies of people living with dementia. Analysis also identified five overarching themes from the nurses participants: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences on sleep, (4) environmental factors on sleep, and (5) interventions for sleep promotion. CONCLUSIONS: The thematic analyses demonstrated that the perspectives of people living with dementia and nurses indicate the need to give more consideration to psychosocial factors and individual aspects of sleep in clinical practice. The results could also be helpful for the development of targeted assessment instruments and complex non-pharmacological interventions to promote sleep.

Challenges, strategies and consequences from the perspective of German nursing home managers during the first wave of the COVID-19 pandemic - a qualitative interview study.

BACKGROUND: The first wave of the COVID-19 pandemic reached Germany between March and May 2020. In order to contain the spread of the virus and particularly protect vulnerable people, the government imposed a lockdown in March 2020. In addition to infection control measures, such as hygiene and social distancing requirements, a general ban on access to nursing homes for relatives and external service providers was issued. METHODS: To investigate the challenges and consequences of the enacted infection prevention measures and specific strategies for nursing homes in Germany, a multicentre cross-sectional qualitative interview study with nursing home managers and ward managers was conducted. Recorded audio data were transcribed, analysed using thematic framework analysis and reflected in peer debriefings. RESULTS: Seventy-eight interviews with 40 nursing home managers and 38 ward managers from 43 German nursing homes were conducted. At organisational level, the following six themes were identified: Appointing a multi-professional crisis task force, reorganizing the use of building and spatial structures, continuous adaption and implementation of hygiene plans, adapting staff deployment to dynamically changing demands, managing additional communicative demands and relying on and resorting to informal networks. To deal with the pandemic challenges also six themes can be described for the direct care level: Changed routines, taking over non-nursing tasks, increased medical responsibility, increased documentation demands, promoting social participation and increased communication demands. Also various negative consequences were identified (four themes): Psychological stress, negative emotional consequences, permanent feeling of responsibility and increased potential for conflicts. Positive emotional consequences were also reported (two themes): resources for the challenges and positive emotional consequences for home managers and staff. CONCLUSIONS: The results of the described challenges, strategies and consequences allow recommendations as basis for possible approaches and successful adaptation processes in nursing home care in the future. In particular, there is a need for local networks to act in a coordinated way and a need for quantitative and qualitative support for nurses, such as staff support as well as advanced nursing practice, to cope with the challenges of the pandemic.

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.

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. TRIAL REGISTRATION: DRKS00014377. Registered retrospectively on April 11, 2018.

What is known about the subjective needs of people with behavioural variant frontotemporal dementia? A scoping review.

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.