An Investigation of the Wishes, Needs, Opportunities and Challenges of Accessing Meaningful Activities for People Living with Mild to Moderate Dementia

Many people are keen to be actively involved in social life and activities, but even at an early stage, dementia can have a negative impact on social participation and access to leisure activities. As part of the IDoService project, this study has investigated people’s needs and wishes, barriers and facilitators to identify opportunities for improving access to meaningful activities. Individual and focus group interviews were conducted with 5 people living with mild to moderate dementia, 2 familial and 2 professional care partners, as well as 12 people working in the field of dementia and/or community activities. Thematic analysis has highlighted the benefits of participating in meaningful activities, such as empowerment and pride, social contacts, and feeling useful to others. A number of barriers to participation relating to individual and environmental factors were reported. Even where participants praised dementia-friendly activities and facilities, they advocated activities inclusive for all and mentioned that some people might be reluctant to participate in dementia-labelled activities because they may not be suitable for their needs. These results indicate the need for developing tailored opportunities for people with mild to moderate dementia and provide valuable insights for researchers, service providers, policymakers and charities wanting to improve access

What is needed to obtain informed consent and monitor capacity for a successful study involving people with mild dementia? Our experience in a multi-centre study

This chapter originally appeared as a paper at the International MinD Conference 2019 http://designingfordementia.eu/news/mind-events/mind-conference-2019Strategies on informed consent process and capacity monitoring for mild dementia research are at developing state. We reflected on our experience and found that the successful collection of informed consent and full participation of PwD required the involvement of familiar healthcare professionals/care workers/staff at the recruitment and data collection stages and this needs to occur in an active support environment. Time is another important factor affecting the success of the study

Living Well with Dementia: Feeling Empowered through Interaction with Their Social Environment

This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. A qualitative thematic content analysis was performed to elicit the key features of the experience reported by the interviewees. Three overarching categories were identified: the first category ‘experiencing changes in personal life and coping with changes in life’ covered losses and coping strategies; the second category ‘retaining a sense of usefulness‘ included social participation and the need for activities with others; the third category ‘feeling empowered’ covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants placed a strong emphasis on continuity and on the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity

Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living. Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia

This is me: Evaluation of a boardgame to promote social engagement, wellbeing and agency in people with dementia through mindful life-storytelling

© 2021 The Authors. Published by Elsevier. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1016/j.jaging.2021.100995Receiving a dementia diagnosis is a difficult experience for most people and often affects their wellbeing negatively. To support people's wellbeing, in a therapeutic context, life-storytelling, reminiscence and mindfulness are used with people with dementia. In an everyday context, traditional games are used as a resource for stimulating memory, cognition and social activity. While an increasing number of creative strategies are available to support people with dementia, the area of board games design and their effect on wellbeing is underexplored. This paper reports on the evaluation of the This is Me (TIM) mindful life-storytelling board game by the European project MinD. Using a co-design methodology, TIM was developed with and for people with mild to moderate dementia to support their wellbeing by enhancing self-empowerment and social engagement. A focus group methodology was used to evaluate TIM with 50 people with dementia and 19 carers across four countries. TIM was evaluated with regard to the usability and experience of the design as well as people's emotional wellbeing, social engagement and agency. The thematic analysis demonstrated that the combination of life-storytelling and mindfulness allowed players to engage in meaningful social interaction and, as a result, they reported enjoyment, learning, more acceptance of the past and present situation, and that they perceived looking forward into the future together with others as helpful. The study demonstrates that design can be a useful means to support people with dementia in aspects of emotional wellbeing, social engagement and a sense of agency.The ‘MinD - Designing for People with Dementia’ project has received funding from the European Union's Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie grant agreement No 691001.Accepted versio

Health-related quality of life in elderly, multimorbid individuals with and without depression and/or mild cognitive impairment using a telemonitoring application

Multimorbidity leads to decreasing health-related quality of life (HRQoL). Telemedicine may help to improve HRQoL. The present study was conducted to show (I) differences in HRQoL and changes in HRQoL over time in elderly, multimorbid individuals with and without depression and/or mild cognitive impairment (MCI) using a telemonitoring application (TMA) and (II) associations between engagement with measurements by study participants using a TMA and changes in their HRQoL. The present feasibility study was part of a longitudinal intervention study. Recruited general practitioners (GPs) enrolled individuals and assigned them to risk groups according to absence/presence of depression and/or MCI. Depression was assessed using the Geriatric Depression Scale (GDS-15), MCI using the Mini-Mental State Examination (MMSE), and HRQoL using the SF-12. The TMA consisted of tablets, software, and measuring devices. Measured vital data were transferred to a care and case manager for monitoring and possible intervention. Nine GPs recruited 177 individuals, 97 of whom were included in the HRQoL analysis. Significantly lower physical and mental component summary (PCS/MCS) scores were revealed in study participants with depression, and with both depression and MCI, compared to participants with no mental disorders. PCS scores did not differ between study dates, but MCS scores had significantly increased over time. Participants' engagement with measurements was significantly associated with an increased MCS score, but not with the PCS score. Depression and/or MCI are negatively associated with the HRQoL of elderly, multimorbid people using a TMA. Engagement of individuals with vital data measurements via a TMA may increase their mental HRQoL. Mentally impaired people should be closely involved as co-designers and experts in development processes of TMAs to benefit from tailored solutions. An individual's increased mental HRQoL can be a decisive factor in their engagement with a GP treatment regimen and telemonitoring processes

What is needed to obtain informed consent and monitor capacity for a successful study involving People with Mild Dementia?: Our experience in a multi-centre study

Strategies on informed consent process and capacity monitoring for mild dementia research are at developing state. We reflected on our experience and found that the successful collection of informed consent and full participation of PwD required the involvement of familiar healthcare professionals/care workers/staff at the recruitment and data collection stages and this needs to occur in an active support environment. Time is another important factor affecting the success of the study

I Indeed Consider it to be a Temporary Solution - A Qualitative Analysis of the Conditions and Obstacles to Implementation of Psychiatric Home-Treatment in Berlin and Brandenburg

Zusammenfassung Ziel Untersucht werden die Bedingungen und Hurden der Einfuhrung von Stationsaquivalenter Behandlung nach 115d SGB V (StaB). Methode Qualitative Analyse von Interviews und Fokusgruppen mit Mitarbeitenden (n=43) an 11 psychiatrischen Kliniken in Berlin/Brandenburg. Ergebnisse Auf Systemebene wird die Implementierung u.a. durch eine inadaquate Leistungsdefinition, fehlende Vorgaben auf Landesebene, Personalmangel und MDK-Prufungen erschwert. Dies fuhrt bei Kliniken zu zuruckhaltender Umsetzung mit teilweise unzureichender personeller Ausstattung der StaB-Teams. Weitere Barrieren betreffen das Fehlen mobiler Losungen zur Dokumentation und Teamkommunikation. Auf Ebene der Mitarbeitenden wirken sich ein Mangel an Information und Kooperation sowie unklare Aufgaben und Rollen hinderlich aus. Schlussfolgerungen Fur eine bedurfnisorientierte, flexible und flachendeckende Einfuhrung von StaB sind Nachbesserungen an den Rahmenbedingungen sowie weitere Forschung zur Wirksamkeit und Implementierung notwendig. Abstract Objective The obstacles to implementation of a German variation of psychiatric Home-Treatment (HT), called Inpatient Equivalent Home-Treatment (IEHT) are examined. Method 43 employees from 11 psychiatric hospitals in the federal states of Berlin and Brandenburg were questioned using interviews and focus groups. A thematic analysis was conducted using the socio-institutional theoretical model. Results At system-level, implementation is hampered by an inadequate service definition, staff shortages, as well as performance assessments by health insurances. This leads to reluctant implementation at hospital-level with insufficient staffing of the teams. Other barriers include a lack of mobile devices for documentation and team communication. At the level of employees, poor information, and cooperation as well as unclear assignment of tasks are impeding factors. Conclusion For a more needs-oriented, flexible, and nationwide introduction of HT according to IEHT, improvements to the underlying framework conditions and further research addressing efficacy, effectiveness and implementation are necessary