Participatory approaches for developing a practical handbook integrating health information for supporting individuals with mild cognitive impairment and their families.

AIM: This study aimed to develop a patient-centred handbook that integrates information on lifestyle modifications and psychological support strategies for individuals with mild cognitive impairment (MCI). This article provides a comprehensive record of the development process. METHODS: We adopted a participatory research model for the methodology, which comprised five phases and involved an interdisciplinary team specializing in dementia and health literacy. Data were initially collected via interviews conducted among patients with MCI (n = 5) and their families (n = 5). Given the study's preliminary nature, depth and richness of the qualitative data were the key concerns for determining the sample size, rather than broad generalizability. We ensured the inclusion of diverse experiences and perspectives by facilitating the creation of patient questions (PQs) that merged scientific evidence with patient perspectives. To enhance the handbook's accessibility and utility, we continuously evaluated the same using patient interviews, health literacy tool assessments and team discussions. This comprehensive approach harmonized scientific knowledge and patient experience, leading to the development of a personalized MCI management guide. RESULTS: The handbook comprises nine domains, encompassing 38 selected PQs: MCI, lifestyle, lifestyle-related diseases, exercise, nutrition, social participation, cognitive training, psychological care and family support. The health literacy handbook was evaluated based on Clear Communication Index scores. The results revealed that 73.7% of the PQs were deemed difficult prerevision, whereas only 5.3% remained challenging postrevision. The formative evaluation underscored the need for more detailed explanations prerevision, whereas postrevision comments focused primarily on editorial suggestions. CONCLUSION: The inclusion of patients' perspectives right from the outset ensured that the handbook met their specific needs. The final version, which reflects all stakeholders' inputs, is now slated for imminent publication. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public participated extensively throughout the project, from initial interviews to material evaluation and refinement.

[How can the well-being of family caregivers of people with dementia be identified?]

This paper discusses what well-being means to caregivers and how it can be measured to confirm its acquisition by using previous research on theoretical and practical aspects.Within the field of psychology, the two types of well-being (subjective and psychological well-being) are combined to form "feeling good and functioning well", which refers to "pleasant subjective experiences, meaningful activities and the realization of human potential in an individual's life".On the other hands, a review study reported on the Global Measure of well-being, that is, depressive symptoms, mental health, QOL, satisfaction with life and health, also on caregiver-specific well-being measures that are burden, role strain, personal strain, stress, competence and self-efficacy. The majority of measures focused on the negative aspects of well-being.If there is no simple measurement tool that captures both the positive and negative aspects of well-being, a comprehensive and quantitative evaluation of dementia care, so for the present there is no alternative but to using multiple tools for evaluation.The Eco-map of the Ecological Social Work method, which was used in a psycho-educational intervention for caregivers, was shown to provide a hint as to how to take a macroscopic and comprehensive view of dementia care and how to easily grasp an understanding of the well-being of caregivers.

Extracting multiple layers of social networks through a 7-month survey using a wearable device: a case study from a farming community in Japan.

As individuals are susceptible to social influences from those to whom they are connected, structures of social networks have been an important research subject in social sciences. However, quantifying these structures in real life has been comparatively more difficult. One reason is data collection methods-how to assess elusive social contacts (e.g., unintended brief contacts in a coffee room); however, recent studies have overcome this difficulty using wearable devices. Another reason relates to the multi-layered nature of social relations-individuals are often embedded in multiple networks that are overlapping and complicatedly interwoven. A novel method to disentangle such complexity is needed. Here, we propose a new method to detect multiple latent subnetworks behind interpersonal contacts. We collected data of proximities among residents in a Japanese farming community for 7 months using wearable devices which detect other devices nearby via Bluetooth communication. We performed non-negative matrix factorization (NMF) on the proximity log sequences and extracted five latent subnetworks. One of the subnetworks represented social relations regarding farming activities, and another subnetwork captured the patterns of social contacts taking place in a community hall, which played the role of a "hub" of diverse residents within the community. We also found that the eigenvector centrality score in the farming-related network was positively associated with self-reported pro-community attitude, while the centrality score regarding the community hall was associated with increased self-reported health. Supplementary Information: The online version contains supplementary material available at 10.1007/s42001-022-00162-y.

Efficacy of group-based multi-component psycho-education for caregivers of people with dementia: A randomized controlled study.

AIM: The aim of this study was to examine the ability of a group-based multi-component psycho-educational intervention (GMC-PEI) to reduce depression, and improve caregiving appraisals, coping skills of informal caregivers and the condition of people with dementia. METHODS: In this randomized controlled and blinded trial, we enrolled 54 informal caregivers of people with dementia visiting the Japan National Center of Geriatrics and Gerontology, and divided them into GMC-PEI and control groups. The intervention group received a 12-week GMC-PEI program that included six 2-h structured sessions to enhance their knowledge of dementia, caregiving skills and coping skills. The control group received leaflets containing information about dementia. We evaluated caregivers' depression, caregiving time, subjective burden, caregiving appraisal and care coping skills. We also evaluated people with dementia at baseline and 12 weeks, and reassessed 20 participants from the intervention group at 24 and 48 weeks. RESULTS: The GMC-PEI significantly improved depression, positive appraisals of fulfillment in caregiving, affection for care recipients, self-growth and coping skills, such as seeking formal support. Depression, fulfillment and affection for people with dementia showed a peak improvement at 24 weeks; formal support-seeking showed a linear improvement throughout the 48-week follow-up period. CONCLUSIONS: The group-based multi-component psycho-educational intervention reduced depression, improved self-appraisal and enhanced coping skills in caregivers. However, emotional enhancements dissipated sooner than support-seeking skills, suggesting that caregivers should be reviewed every 12-24 weeks. Geriatr Gerontol Int 2021; 21: 561-567.

Developing an interdisciplinary program of educational support for early-stage dementia patients and their family members: an investigation based on learning needs and attitude changes.

AIM: The National Center for Geriatrics and Gerontology has begun to provide educational support for family caregivers through interdisciplinary programs focusing on patients in the early stage of dementia. These interdisciplinary programs have established two domains for the purpose of "educational support": cure domains (medical care, medication) and care domains (nursing care, welfare). In the present study, we examined the learning needs and post-learning attitude changes of patients and their families who participated in these programs in order to assess the effectiveness of an interdisciplinary program of educational support in each of these domains. METHODS: A total of 170 participants (51 dementia patients, 119 family members) were included in the study. Data were obtained from electronic health records, and through a written survey administered before and immediately after each program. RESULTS: A high percentage of patients and family members desired knowledge about the progression and symptoms of dementia, as well as measures to prevent progression, both of which fall under the medical care content. For patients, education in the medical care content increased their motivation to live. For families, education in the medical and nursing care contents promoted their understanding of dementia, while education in medication and welfare contents improved their skills for handling dementia patients and their symptoms. CONCLUSION: Both patients and family members expressed a need to learn medical care content, including the progression and disease symptoms of dementia, and methods to prevent the progression of dementia symptoms. Their responses showed that learning medical care was effective for understanding dementia. We suggested that medical care content was the core of interdisciplinary educational support for early-stage dementia patients and their family members.