scholarly journals Virtual day center for people with dementia and their caregivers during the COVID-19 pandemic

2021 ◽  
Vol 15 (4) ◽  
pp. 440-447
Author(s):  
Virgínia Lúcia Reis Maffioletti ◽  
Maria Alice Tourinho Baptista ◽  
Bethânia Abranches ◽  
Gabriela Koatz ◽  
Valeska Marinho Rodrigues ◽  
...  

ABSTRACT The coronavirus disease 2019 (COVID-19) pandemic suspended face-to-face assistance offered by community spaces, such as day centers (DCs). People with dementia (PwD) and their families were faced with the risks posed by social detachment and suspension of treatments. Objective: This study aimed to present a virtual day center (VDC) program offered as a preventive strategy to reduce the damage caused by social isolation and interruption of treatment imposed by the pandemic. Methods: The experience report, describing the feasibility of a VDC program, offered to 26 PwD and their caregivers, during the first year of the pandemic. The VDC held individual and group meetings with PwD and their families and psychoeducational support groups for caregivers. Results: The attendance rate in group activities was 80%, and that in the caregiver group was 68%, showing a good virtual interaction. Throughout the year, three PwD interrupted the service due to difficulties of the caregivers to reconcile the schedules of the activities with their professional commitments and the absence of a support network, three others died, and two were institutionalized. PwD remained physically, socially, and cognitively active through daily virtual activities. Guidance and support for caregivers contributed to the organization of routines and adaptation to the isolation and maintenance of the bond. Family meetings made it possible to mediate conflicts and expand the support network. Conclusions: VDC is a promising modality to assist the needs and demands of PwD and their caregivers. VDC can contribute to the expansion of this intervention to individuals and families who do not have access to face-to-face treatment.

Author(s):  
Mônica Braúna Alencar Leão da Costa ◽  
Maria João Tinoco Azevedo ◽  
Maria Constança Paúl Torgal ◽  
José Carlos Rodrigues Gomes

A demência representa atualmente um grande problema de saúde e social na esfera mundial, ao qual Portugal não está alheio. Cuidar de uma pessoa com demência é uma tarefa muito exigente em que o cuidador, ao assumir este papel, deixa de desempenhar as suas atividades cotidianas, enfrentando muitos desafios. O grupo de ajuda mútua (GAM) é um modelo de cuidado fundamentado na partilha e ajuda mútua dentro de um contexto social, emocional e de educação. Desenhamos um estudo qualitativo, descritivo e exploratório, com o objetivo de explorar e descrever as experiências dos cuidadores informais após seis meses de participação no GAM. Para análise de conteúdo, recorremos ao software Web Qualitative Data Analysis (WebQDA) para a contagem de referências e categorização dos temas. Este estudo foi desenvolvido na zona Norte de Portugal, e integra parte do Projeto CuiDem- Cuidados para a Demência. Participaram nove cuidadores informais de pessoas com demência e três profissionais de saúde de GAM. Após codificação e contagem de referências, foram integradas quatro categorias para análise: i) enfrentamento e a visão prospectiva do futuro; ii) construção de uma rede de apoio; iii) o resgate do quotidiano e a importância da gestão do tempo; e iv) promoção da competência de cuidado.  Nossos resultados, confluem com os existentes na literatura e reforçam que os GAM para cuidadores informais de pessoas com demência aprimoram as competências pessoal e instrumental, incluindo o reconhecimento da importância do autocuidado e gestão do tempo, além de fomentar o empowerment no quotidiano do cuidado. AbstractDementia currently represents a major health and social problem worldwide, to which Portugal is not unaware. Caring for a person with dementia is a very demanding task for the caregiver, to take on this role, it ceases to perform its daily activities, facing many challenges. The Mutual Help Group (MHG) is a care model based on sharing and helping each other within a social, emotional and educational context. We designed a qualitative, descriptive and exploratory study to explore and describe the experiences of informal caregivers after six months of participation in GAM. For content analysis, we used the Web Qualitative Data Analysis software (WebQDA) for reference counting and categorization of themes. This study was developed in the northern area of Portugal and is part of the Projeto CuiDem- Cuidados para a Demência. Nine informal caregivers of people with dementia and three GAM health professionals (facilitators) participated in the study. After coding and reference counting, four categories were integrated for analysis: i) coping and the prospective view of future ii) construction of a support network; iii) the rescue of daily life and the importance of time management; and iv) promotion of care competence. Our findings converge with those in the literature and reinforce that mutual help groups for informal carers of people with dementia enhance personal and instrumental skills, including recognizing the importance of self-care and time management, and fostering empowerment in daily life.Key words: Caregivers; Dementia; Empowerment; Support Groups. ResumenLa demencia es actualmente un importante problema social y de salud en todo el mundo, del que Portugal no es ajeno. El cuidado de una persona con demencia es una tarea muy exigente para el cuidador, al asumir este rol, deja de realizar sus actividades diarias, frente a muchos desafíos. El Grupo de Ayuda Mutua (GAM) es un modelo de atención basado en compartir y ayudarse mutuamente dentro de un contexto social, emocional y educativo. Dibujamos un estudio cualitativo, descriptivo y exploratorio para explorar y describir las experiencias de los cuidadores informales después de seis meses de participación en GAM. Para el análisis de contenido, utilizamos el software Web Qualitative Data Analysis (WebQDA) para el recuento de referencia y la categorización de los temas. Este estudio se desarrolló en la zona norte de Portugal y forma parte del Projeto CuiDem- Cuidados para a Demência. Participarón nueve cuidadores informales de personas con demencia y tres profesionales de salud de GAM (facilitadores). Después de la codificación y el recuento de referencias, se integraron cuatro categorías para el análisis: i) afrontamiento y la visión prospectiva futuras; ii) construcción de una red de apoyo; iii) el rescate de la vida cotidiana y la importancia de la gestión del tiempo; y iv) promoción de la competencia asistencial. Nuestros hallazgos están en línea con los de la literatura y refuerzan que los grupos de ayuda mutua para cuidadores informales de personas con demencia mejoran las habilidades personales e instrumentales, incluido el reconocimiento de la importancia del autocuidado y la gestión del tiempo, así como el fomento del empoderamiento en la vida diaria.Palabras clave: Cuidadores; Demencia; Cuidadores; Empoderamiento; Grupos de apoyo. 


Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_4) ◽  
Author(s):  
Emily Earle

Abstract Background Peer support, which can take many forms, involves people sharing knowledge, experience and practical help. It is recognised as a useful mechanism for families living with children who have a long-term condition, such as juvenile idiopathic arthritis (JIA). It is often provided by voluntary organisations. While some forms of peer support were established for families living with JIA in the United Kingdom (UK), there were no local support groups in a number of locations. Given that over 12,000 families are living with JIA, the need for access to peer support for families became evident. Therefore, the aim was to establish one local support group for JIA families in London; while identifying whether any other families were organising similar activities elsewhere in England and Wales. Methods The initial concept was discussed and endorsed by a group of paediatric rheumatology clinicians and the British Society for Paediatric and Adolescent Rheumatology (BSPAR – part of the British Society for Rheumatology) Parent Group. Policies and guidelines for the network and local support groups were then created. The Juvenile Arthritis Parents and Families UK Facebook group were consulted via a parent-led request to identify who lived in the London area. Subsequently, a JIA Matters North and West London closed Facebook group was created, and families from the area were invited to join. Once several members had joined, the JIA Matters Co-ordinator arranged a local, face-to-face meet-up for families. Using this model, paediatric rheumatology centres across different counties in England and Wales were approached by JIA Matters to recommend parents/carers who could be suitable parent/carer representatives to lead on establishing local groups. Results Between July 2017 and March 2019, 36 JIA Matters groups were established across England and Wales. Some groups have rapidly developed, while others remain conservative. Attendance at local, face-to-face meet-ups have been variable, with some groups experiencing difficulties in encouraging people to attend. The first local, face-to-face meet up of the NW London group was attended by seven families. Some paediatric rheumatology centres have been responsive and proactive in using JIA Matters and have begun to engage with the JIA Matters Coordinator to help enhance family engagement within local activities. To aid the sustainability of the network across the country, JIA Matters was incorporated into the Children’s Chronic Arthritis Association (CCAA) in March 2019, strengthening the national reach of the network to help ensure families across the country have access to local peer support. Conclusion JIA Matters has demonstrated how parent-led initiatives on a local level can indeed influence activities on a national level. From modest aims, JIA Matters has evolved to connect families living in the same geographic area, while promoting family engagement in research, service development and activities within paediatric rheumatology centres. Conflicts of Interest The authors declare no conflicts of interest.


2020 ◽  
Author(s):  
Hannah Liane Christie ◽  
Lizzy Mitzy Maria Boots ◽  
Huibert Johannes Tange ◽  
Frans Rochus Josef Verhey ◽  
Marjolein Elizabeth de Vugt

BACKGROUND Very few evidence-based eHealth interventions for caregivers of people with dementia are implemented into practice. Municipalities are one promising context to implement these interventions, due to their available policy and innovation incentives regarding (dementia) caregiving and prevention. In this study, two evidence-based eHealth interventions for caregivers of people with dementia (Partner in Balance and Myinlife) were implemented in eight municipalities in the Euregion Meuse-Rhine. OBJECTIVE This study’s objectives were to (1.) evaluate this implementation and (2.) investigate determinants of successful implementation. METHODS This study collected eHealth usage data, Partner in Balance coach evaluation questionnaires, and information on implementation determinants. This was done by conducting interviews with the municipality officials, based on the Measurement Instrument for Determinants of Implementation (MIDI). This data from multiple sources and perspectives was integrated and analysed to form a total picture of the municipality implementation process. RESULTS The municipality implementation of Partner in Balance and Myinlife showed varying levels of success. In the end, three municipalities planned to continue the implementation of Partner in Balance, while none planned to continue the implementation of Myinlife. The two Partner in Balance municipalities that did not consider the implementation to be successful, viewed the implementation as an external project. For Myinlife, it was clear that more face-to-face contact was needed to engage the implementing municipality and the target groups. Successful implementations were linked to implementer self-efficacy CONCLUSIONS The experiences of implementing these interventions suggested that this implementation context was feasible regarding the required budget and infrastructure. The need to foster sense of ownership and self-efficacy in implementers will be integrated into future implementation protocols, as part of standard implementation materials for municipalities and organisations implementing Myinlife and Partner in Balance.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
S Čanković ◽  
D Čanković ◽  
I Radić ◽  
D Rakić ◽  
S Ukropina ◽  
...  

Abstract Background Some findings indicate that university students are at higher risk of depression despite being a socially advantaged population, showing that 15 to 25% of them develop some type of mental disorder during graduation, and depression is one of the most prevalent. The aim of this study was to investigate the prevalence of depressive symptoms and its association with gender, material status, social health, and behavioral factors among university students. Methods The research represents a cross-sectional study conducted at the University of Novi Sad, Serbia. The research involved 455 first-year students. The average age of participants was 19.3 years (72.1% girls and 27.9% boys). Patient Health Questionnaire (PHQ-9) was used to measure depressive symptoms (cut point for depressive episode ≥10). Additional questions were focused on self-assessed material status, social health, and behavioral factors (smoking and alcohol use). The binary logistic regression model was used to estimate the association between depression and observed independent variables. Results The prevalence of moderate to severe depressive episode among students was 18.0%, with no gender differences. Out of the total, 11.0% of students had suicidal thoughts or thoughts of hurting themselves. Multivariable logistic regression showed that self-assessed poor material status (OR = 2.04; 95%CI: 1.06-3.89), self-assessed poor social health (OR = 8.9; 95%CI:4.87-16.42) and smoking (OR = 2.18; 95%CI: 1.09-4.39) were significant predictors of depression among first-year university students. Conclusions High prevalence of depressive episode among university students call for the action for the promotion of mental health, particularly among those of lower socioeconomic status, and points out the importance of social health and social network in the prevention of mental disorders. Key messages Students on the first year of University should be screened for depressive symptoms. It is important to educate students on how to create a strong support network and to implement intervention programs for improving mental health through fostering healthy lifestyles change.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Julian Hirt ◽  
Melanie Karrer ◽  
Laura Adlbrecht ◽  
Susi Saxer ◽  
Adelheid Zeller

Abstract Background To support the implementation of nurse-led interventions in long-term dementia care, in-depth knowledge of specific supporting factors and barriers is required. Conditions and structures of caring for people with dementia differ widely, depending on the country and the care context. Our study aimed to describe the experiences and opinions of nursing experts and managers with regard to facilitators and barriers to the implementation of nurse-led interventions in long-term dementia care. Methods We conducted a qualitative descriptive study using individual interviews based on qualitative vignettes as a useful stimulus to generate narrations allowing to study peoples’ perceptions and beliefs. The study took place in nursing homes in the German-speaking part of Switzerland and in the Principality of Liechtenstein using purposive sampling. We intended to conduct the interviews face-to-face in a quiet room according to the participant’s choice. However, due to the lockdown of nursing homes during the COVID-19 pandemic in spring 2020, we performed interviews face-to-face and by video. We analysed data thematically following Braun and Clarke to achieve a detailed, nuanced description. To verify our interpretation and to ensure congruence with participants’ perspectives, we conducted member checks. The Standards for Reporting Qualitative Research (SRQR) served to structure our manuscript. Results Six dyads of nursing home managers and nursing experts from six nursing homes took part in our study (n = 12). Our thematic analysis yielded seven themes reflecting facilitators and barriers to implementing nurse-led interventions in long-term dementia care: «A common attitude and cohesion within the organization», «Commitment on several levels», «A needs-oriented implementation», «The effect and the public perception of the intervention», «A structured and guided implementation process», «Supporting knowledge and competencies», as well as «Resources for implementing the intervention». Conclusions To support the implementation of nurse-led interventions in long-term dementia care, active commitment-building seems essential. It is necessary that the value of the intervention is perceptible.Commitment-building is the precondition to reach the persons involved, such as nursing home managers, nursing staff, residents and relatives. Furthermore, nurses should precisely inform about the intervention. It is necessary that the value of the intervention is perceptible. In addition, nurses should adjust the interventions to the situational needs of people with dementia, thus. Therefore, it is important to support dementia-specific competencies in long-term care. Findings indicate that the barrier is determined by the intervention and its implementation – and not by the behaviour of the person with dementia.


Dementia ◽  
2016 ◽  
Vol 16 (8) ◽  
pp. 985-1003 ◽  
Author(s):  
Jan Bailey ◽  
Paul Kingston ◽  
Simon Alford ◽  
Louise Taylor ◽  
Edward Tolhurst

This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.


2018 ◽  
Author(s):  
Monica Strand ◽  
Deede Gammon ◽  
Lillian Sofie Eng ◽  
Cornelia Ruland

BACKGROUND Peer support groups for people with long-term mental health problems are at the heart of recovery-oriented approaches in mental health care. When conducted face-to-face (offline) or on the Internet (online), peer support groups have proven to have differing strengths and weaknesses. Little is known about the benefits and challenges of combining the two formats. OBJECTIVE The aim of this study was to gain insights into the benefits and challenges of combining online and offline peer support groups facilitated through an Internet intervention designed to support recovery processes. METHODS In this exploratory and descriptive study, an e-recovery portal called ReConnect was used by service users in two mental health communities in Norway for 6-12 months. The portal included an online peer support forum which also facilitated participation in local in-person ReConnect-cafés. Both formats of peer support were facilitated by an employed service user consultant with lived experience of mental health problems and with training in peer support. Qualitative data about service users’ experiences of using the portal were collected through focus groups and individual interviews and inductively analyzed thematically with focus on benefits and challenges of peer support online and offline. RESULTS A total of 14 service users 22-63 years of age with various diagnoses, receiving services at both primary and specialist levels of mental health care participated in three focus groups and 10 individual interviews. Two main themes were identified in the analysis: 1) balancing anonymity and openness, and 2) enabling connectedness. These themes are further illustrated with the subthemes: i) dilemmas of anonymity and confidentiality, ii) towards self-disclosure and openness, iii) new friendships, and iv) networks in the local community. Three of the subthemes mainly describe benefits. Challenges were more implicit and cut across the subthemes. Identified challenges were linked to transitions from anonymity to revealing one’s identity, how to protect confidentiality, or to participation at face-to-face meetings in the local community. CONCLUSIONS Our study suggests that online peer support groups and offline meetings complement each other, and the combination is mainly beneficial to users. The identified benefits appeared to arise from participants’ options of one format or the other, or that they could combine formats in ways that suited their individual values and comfort zones. We also identified challenges related to combination of formats, and both formats require appropriate facilitation of peer support. Combining online formats that enable anonymity, a non-judgmental atmosphere, and 24/7 accessibility regardless of location, with offline formats that foster local, in-person community ties, is a promising concept for facilitating recovery-oriented care, and warrants continued research.


2021 ◽  
Author(s):  
Yang-Hao Ou ◽  
Ming-Che Chang ◽  
Wen-Fu Wang ◽  
Kai-Ming Jhang

Abstract Background: There is an increasing awareness of caregiver's burden, especially in those caring for people with dementia. The caregiver burden has been studied extensively in Western countries; however, the interpretation of the results and replication of the intervention may deem unfit in the Chinese culture. Therefore, this study identifies the change in caregiver burden by interventional methods under current Taiwan's long-term care Act 2.0.Method: A total of 2,598 newly diagnosed dementia outpatients was evaluated by the Changhua Christian Hospital dementia care team. Eighty patients utilize one of the three care resources, including community-based services (n = 33), home-based services (n = 19), or taking care by foreign caregivers (n = 28). Participants in the control group were selected by matching their global CDR score, gender, age, and caregivers' age with a 1:4 ratio. All caregivers completed the Zarit Burden Interview (ZBI) questionnaires before and six months after utilizing the care resources. Results: The home-based and the foreign caregiver groups have the highest baseline ZBI scores with 37.63±16.14 and 36.57±17.14, respectively. The second ZBI score was assessed about six months after the baseline showing that the home-based group remained the highest caregiver burden (ZBI = 31.74±12.23) and the foreign caregiver group showed the lowest burden (ZBI = 25.68±12.09). The mean difference in the ZBI score confirmed that the foreign caregiver group had the most improvement, averaging a decrease of 17.99±31.08 points (adjust observation time). A linear regression model showed that home-based care and foreign caregiver contributes the most reduction in caregiver burden (-11.83 and -19,07 ZBI scores, respectively).Conclusion: Caring for people with dementia includes caring for their caregivers. Dementia care team should provide proper social resources, which are crucial in the alleviation of caregiver burden.


EAD em FOCO ◽  
2016 ◽  
Vol 6 (2) ◽  
Author(s):  
Adriano Theodoro ◽  
Gerlinde Agate Platais Brasil Teixeira ◽  
Claudia Marcia Borges Barreto

Descrevemos o processo de criação colaborativa de um ambiente virtual de aprendizagem (AVA) de acordo com os princípios das metodologias ativas de ensino e a sua avaliação. O ambiente virtual foi usado no apoio ao ensino presencial. Participaram dessa experiência híbrida de aprendizagem estudantes da disciplina Imunobiologia, oferecida no primeiro ano de um curso tradicional de graduação em Medicina. Ao término da disciplina, foi aplicado um questionário para avaliar a facilidade de uso e a percepção dos estudantes sobre a qualidade do aprendizado adquirido. A maioria dos estudantes que avaliaram a intervenção pedagógica afirmou que o ambiente foi fácil de usar, atendeu às expectativas de apoio ao ensino presencial e as atividades didáticas foram importantes para o aprendizado de habilidades como reflexão, pesquisa e discussão. Portanto, o ambiente virtual desenvolvido foi bem-sucedido e bem-aceito pelos estudantes.Palavras-chave: Educação a distância, Moodle; Ensino de Imunologia, Mapa conceitual.? Evaluation of a Virtual Learning Environment of ImmunologyAbstractWe herein describe the process of collaborative creation and evaluation of a Virtual Learning Environment of Immunology according to the principles of active learning. The Web-based platform was used in support of face to face classroom teaching. First year Medicine undergraduate students attending Immunobiology? course participated in this blended learning experience. At the end of the course, a questionnaire was applied to evaluate the ease of use and the students' perception of the quality of the acquired learning. Most students assessed the educational intervention said that the environment was easy to use, supports the classroom teaching and the educational activities were important for learning skills such as reflection, research and discussion. Therefore, the developed virtual environment was successful and well accepted by the students. Keywords: Distance learning, Moodle, Immunology teaching, Concept map.


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