Exploring self-experience practices in dementia care: A scoping review.

BACKGROUND: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed. METHODS: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model. RESULTS: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings. CONCLUSIONS: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects. TRIAL REGISTRATION: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/).

The Implementation Success of Technology-Based Counseling in Dementia Care: Scoping Review.

BACKGROUND: Implementing technology-based counseling as a complex intervention in dementia care poses challenges such as adaptation to stakeholders' needs and limited resources. While studies have examined the effectiveness of technology-based counseling, its successful implementation remains largely unexplored. OBJECTIVE: We aimed to review the knowledge about the implementation success of technology-based counseling interventions for people with dementia and their informal caregivers. METHODS: We conducted a scoping review and systematically searched CINAHL, the Cochrane Library including the Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, and Web of Science Core Collection databases (April 2021) in combination with citation searching and web searching (November 2021). Studies reporting on technology-based counseling interventions for people with dementia or their informal caregivers were included, irrespective of the design. We used the conceptual framework for implementation outcomes to operationalize implementation success and applied the outcomes acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration, and sustainability as categories to inform data extraction. We identified dimensions within the categories and synthesized results narratively and graphically. RESULTS: We included 52 publications reporting on 27 technology-based counseling interventions. The studies were conducted in 9 countries and published between 1993 and 2021. As the design of the included studies varied, the number of participants and the type of data reported varied as well. The intervention programs were heterogeneous and ranged from single counseling interventions (such as helpline services) to counseling as part of a multicomponent program. Telephone, email, videoconferencing, social media (respectively chats), and web-based platforms were used for delivering counseling. We found data on appropriateness for all interventions and data on acceptability for most interventions, describing aspects such as consumer-perceived usefulness and helpfulness of services, as well as satisfaction. Information on the other categories of adoption, feasibility, fidelity, implementation cost, penetration, and sustainability was fragmented. CONCLUSIONS: The scope and depth of information on conceptual categories of the implementation success of technology-based counseling for people with dementia and informal caregivers varied. The data only partially covered the concept of implementation success, which highlights the need for a systematic evaluation accompanying the implementation. The application of theoretical approaches for implementation and adherence to the framework for developing and evaluating complex interventions are required to promote the implementation of complex interventions and to comprehensively assess implementation success. TRIAL REGISTRATION: PROSPERO CRD42021245473; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=245473.

Technology-Based Counselling for People with Dementia and Their Informal Carers: A Systematic Review and Meta-Analysis.

BACKGROUND: Information technology can enhance timely and individual support for people with Alzheimer's disease and other dementias and their informal carers. OBJECTIVE: To review the effectiveness of technology-based counselling interventions for people with dementia and informal carers. METHODS: Randomized controlled trials of remote dementia counselling interventions were included. We searched CINAHL, Cochrane Library, MEDLINE, PsycINFO, and the Web of Science Core Collection (April 2021) in combination with citation tracking and free web searching (October to November 2021). We provide meta-analyses for caregiver depression, burden, and self-efficacy/mastery and structured reporting for other outcomes. The Grading of Recommendations Assessment, Development and Evaluation approach and the Risk of Bias 2 tool were applied. RESULTS: We included five randomized controlled trials involving 880 participants. Interventions were provided for carers (four studies) or dyads (one study). Carers were predominantly women and were the spouses or children of people with dementia. Counselling was delivered via telephone or videoconference with two to 23 sessions over 1 to 12 months. Control groups received educational and resource materials only, standard (helpline) services, non-directive support, or home visits. Meta-analysis for our primary outcome, depressive symptoms in carers, revealed no statistically significant effect (SMD -0.15; 95% CI -0.40 to 0.10). There were also no significant effects on burden and self-efficacy/mastery. We rated the certainty of evidence as low to very low and all outcomes at an overall high risk of bias. CONCLUSION: The effectiveness of technology-based counselling interventions for people with dementia and informal carers remains uncertain. Theory-based approaches are needed for the development and evaluation of these interventions.

Technology-based counselling in dementia (TeCoDem): study protocol of a mixed-methods systematic review with qualitative comparative analysis and meta-analysis.

INTRODUCTION: Information technology can enhance timely and individual support for people with dementia and informal carers. There is some evidence that people with dementia and informal carers would benefit from technology-based counselling. However, it remains unclear which features of those interventions relate to beneficial outcomes and which aspects are necessary for a successful implementation. Therefore, the primary objectives are: (1) to identify conditions of successful implementation of technology-based counselling interventions in dementia and (2) to investigate the effectiveness of those interventions. METHODS AND ANALYSIS: We will conduct a mixed-methods systematic review. The first primary objective requires evidence from various study designs addressing aspects on effective and non-effective implementation of technology-based counselling. This could be telephone-based, web-based or mobile-based interventions for people with dementia and informal carers. For the second primary objective, randomised controlled trials (RCTs) dealing with any outcomes will be included. Year of publication and language will not be restricted. We will search CINAHL, Cochrane Library, MEDLINE, PsycINFO and Web of Science up to April 2021. Additionally, we will perform web searching and citation tracking. To achieve the first primary objective, a Qualitative Comparative Analysis (QCA) will be conducted. The QCA enables us to identify necessary or sufficient components for a successful implementation. To reach the second primary objective, a meta-analysis will be performed with respect to potential clinical and statistical heterogeneity of RCTs. The revised Risk of Bias tool 2.0 will be used to check the risk of bias in RCTs. For all other study designs, the Mixed Method Appraisal Tool will be used. ETHICS AND DISSEMINATION: Ethics approval is not required for this review. We will disseminate our findings through scientific and non-scientific journal articles and conference presentations as well as formats directed to the public and decision-makers in healthcare. PROSPERO REGISTRATION NUMBER: CRD42021245473.

[Employed persons caring simultaneously for children and care-dependent relatives - a scoping review]. / Berufstätige Personen mit gleichzeitiger Erziehungs- und Pflegeverantwortung.

Employed persons caring simultaneously for children and care-dependent relatives - a scoping review Abstract. Background: Due to the demographic changes with higher life expectancy, later childbirth, and an increasing number of working women, more middle-aged persons are confronted with the care needs of younger and older generations while they themselves are still employed. Aim: The objective of this manuscript is to review the body of knowledge about employed people caring simultaneously for underaged children and care-dependent relatives. Methods: The databases MEDLINE, CINAHL, Cochrane Library, GeroLit, CC Med, SOWIPORT Gesis, PsycINFO and BASE were searched without any time limitations. Publications in German and English were included into this scoping review regardless of the study design. Results: A total of 85 studies from Western countries were included. Research activity is centered in North America and there are only limited empirical findings from the German-speaking regions. Nearly 70 % of the studies used a quantitative design. Research questions address the consequences of adopting multiple roles and the compatibility of different areas of life. In total, role theoretical perspectives predominate. Conclusions: The findings show that little attention has been paid to this specific issue in German-speaking regions. The methodical limitations and inadequate theoretical differentiation of the studies led to partly contradictory results. Future research should take the complexity of this living situation into account while considering methodical approaches and theoretical foundations.

[Relatives or 'Zugehörige'? - An attempt to explore the meaning of terms]. / Angehörige oder Zugehörige? ­ Versuch einer Begriffsanalyse.

Relatives or 'Zugehörige'? - An attempt to explore the meaning of terms Abstract. BACKGROUND: Societal change has an impact on social coexistence and it is associated with pluralisation of family patterns, altered kinship relations and a greater significance of friendship relations. This is also reflected in familial situations with occurring care needs and the professional carers' perception of these developments has found its linguistic equivalent in terms like 'relatives' or 'Zugehörige'. These and further terms used in nursing communication will be explored in this article. AIM: The objective of this article is to determine the meanings of terms used in German-speaking nursing literature for close persons of care receivers. METHODS: For this purpose an explicating content analysis was conducted and etymological, juridical and social-scientific definitions were compared to the apprehension of professional care givers. RESULTS: The findings show a wide range of terminology combined with a varying comprehension of these terms challenging their appropriateness for professional nursing communication. CONCLUSIONS: Based on these findings a definition of the concept 'relatives' is brought up for discussion as an attempt to contribute to a more coherent intraprofessional comprehension.

[Men as caregivers for their wives - two phenomenological studies of the experiences of male primary caregivers in home care arrangements. Part II: men as caregivers for their wives suffering from dementia]. / Männer, die ihre Ehefrauen pjlegen - Zwei phänomemnologische Studies zum Erleben männlicher Hauptpflegepersonen in häuslichen Pflegearrangements. Teil II: Pflegende Männer demenziell erkrankter Ehefrauen.

BACKGROUND: In Germany, men participate more and more in the extensive process of caring for their relatives. AIM: Focus of the second study are husbands caring in home care for their wives suffering from dementia. Objective of the present study is to analyse the following questions, with focus on caring husbands: Firstly, how do caring husbands experience caring for their wives suffering from dementia? And secondly, how do they organise daily life? METHOD: Narrative interviews with ten caring husbands were conducted. Analysis was performed using a modified phenomenological-interpretative approach as described by Diekelmann (1992). RESULTS: Seven central issues evolved: "Dementia is a mischievous disease …" (disease as lingering crisis); "But there is a commitment …" (relationship); "Quarrel, that's not resolved without efforts …" (conflict); "Nothing's left from that …" (loss); "The amount of care, it didn't decrease, it's getting more …" (care); "The world's getting smaller …" (limitations); "I don't dislike it when someone's around supporting me …" (support). "Being bonded" emerged as a constitutive pattern, according to which caring husbands perceive their own life situation. CONCLUSIONS: Caring husbands perceive and organise their wives' care situation individually. This includes their evaluation of professional assistance offers. Our findings point out the clear need for different offers of professional care givers when collaborating with caring husbands. Further research should focus on individual (long-time) care courses as well as reasons for declining professional assistance offers.

[Men as caregivers for their wives - two phenomenological studies of the experiences of male primary caregivers in home arrangements. Part 1: men as caregivers for their wives after stroke]. / Männer, die ihre Ehefrauen pflegen - Zwei phänomenologische Studien zum Erleben männlicher Hauptpflegepersonen in häuslichen Pflegearrangements. Teil I: Pflegende Männer pflegebedürftiger Ehefrauen nach einem Schlaganfall.

BACKGROUND: In Germany, men participate more and more in the extensive process of caring for their relatives. The ongoing discourse in nursing sciences, however, reflects poorly on this increasing number of male principal caregivers. AIM: Objective of the present study is to analyse the following questions, with focus on caring husbands: Firstly, how do caring husbands experience caring for their wives after stroke? And secondly, how do they organise daily life? METHOD: Narrative interviews with ten caring husbands were conducted. Analysis was performed using a modified phenomenological-interpretative approach as described by Diekelmann (1992). RESULTS: Six central issues evolved: "I never thought something like that'd happen to us …" (disease as acute crisis); "I see her just the way she was when we first met …" (relationship); "… since then I got her in home care." (care); "… this work, it's never been easy" (work and burden); "This new situation, well, you've got to adapt …" (adaptation); "… because I do need some time for myself!" (support and relief). "Being responsible" emerged as a constitutive pattern, according to which caring husbands perceive their own life situation. CONCLUSION: Professional nurses should take this constitutive pattern seriously and should align their work to it when collaborating with male principal care givers. For this purpose, further research is needed to develop new approaches to this special situation and its implications.