Virtual day center for people with dementia and their caregivers during the COVID-19 pandemic / Centro dia virtual para pessoas com demência e seus cuidadores durante a pandemia COVID-19

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.

RESUMO A pandemia da COVID-19 impôs a suspensão da assistência presencial oferecida por espaços comunitários, como centros dias. Pessoas com demência (PcD) e seus familiares enfrentam os riscos do distanciamento social e da suspensão dos tratamentos. Objetivos: Apresentar um programa de centro dia virtual (CDV) oferecido como estratégia preventiva para reduzir os danos causados pelo isolamento social e interrupção do tratamento impostos pela pandemia. Métodos: Relato de experiência, descrevendo a viabilidade de um programa VDC, oferecido a 26 PcD e seus cuidadores, durante o primeiro ano da pandemia. O CDV realizou reuniões individuais e em grupo com PcD e seus familiares e grupos de apoio psicoeducacional para cuidadores. Resultados: A taxa de comparecimento nas atividades em grupo foi de 80% e nos grupos de cuidadores foi 68%, demonstrando uma boa interação virtual. Ao longo do ano, três PcD interromperam o atendimento por dificuldade dos cuidadores em conciliar os horários das atividades com seus compromissos profissionais e ausência de rede de apoio, outros três faleceram e dois foram institucionalizados. PcD mantiveram-se física, social e cognitivamente ativas por meio de atividades virtuais diárias. A orientação e o apoio aos cuidadores contribuíram para a organização das rotinas, a adaptação ao isolamento e manutenção do vínculo. As reuniões familiares possibilitaram mediar conflitos e ampliar a rede de apoio. Conclusões: o CDV é uma modalidade promissora para atender às necessidades e demandas de PcD e seus cuidadores. O CDV pode contribuir para a expansão dessa intervenção a indivíduos e famílias que não têm acesso ao tratamento presencial.

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

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.

A pandemia da COVID-19 impôs a suspensão da assistência presencial oferecida por espaços comunitários, como centros dias. Pessoas com demência (PcD) e seus familiares enfrentam os riscos do distanciamento social e da suspensão dos tratamentos. Objetivos: Apresentar um programa de centro dia virtual (CDV) oferecido como estratégia preventiva para reduzir os danos causados pelo isolamento social e interrupção do tratamento impostos pela pandemia. Métodos: Relato de experiência, descrevendo a viabilidade de um programa VDC, oferecido a 26 PcD e seus cuidadores, durante o primeiro ano da pandemia. O CDV realizou reuniões individuais e em grupo com PcD e seus familiares e grupos de apoio psicoeducacional para cuidadores. Resultados: A taxa de comparecimento nas atividades em grupo foi de 80% e nos grupos de cuidadores foi 68%, demonstrando uma boa interação virtual. Ao longo do ano, três PcD interromperam o atendimento por dificuldade dos cuidadores em conciliar os horários das atividades com seus compromissos profissionais e ausência de rede de apoio, outros três faleceram e dois foram institucionalizados. PcD mantiveram-se física, social e cognitivamente ativas por meio de atividades virtuais diárias. A orientação e o apoio aos cuidadores contribuíram para a organização das rotinas, a adaptação ao isolamento e manutenção do vínculo. As reuniões familiares possibilitaram mediar conflitos e ampliar a rede de apoio. Conclusões: o CDV é uma modalidade promissora para atender às necessidades e demandas de PcD e seus cuidadores. O CDV pode contribuir para a expansão dessa intervenção a indivíduos e famílias que não têm acesso ao tratamento presencial.

Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers.

OBJECTIVE: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). METHODS: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers' quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. RESULTS: A significant difference was found in caregivers' burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers' quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers' perspective of quality of life of care recipient and caregivers' hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers' burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers' burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers' depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers' depressive symptoms in both the groups. CONCLUSION: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

A Systematic Review of Home-Setting Psychoeducation Interventions for Behavioral Changes in Dementia: Some Lessons for the COVID-19 Pandemic and Post-Pandemic Assistance.

BACKGROUND: Impacts of social isolation measures imposed by COVID-19 Pandemic on mental health and quality of life of older adults living with dementia and their caregivers remain unexplored. Studies have shown that psychoeducational and psychosocial interventions can manage behavioral and psychological symptoms in dementia (BPSD) and reduce the emotional burden on family members when applied in home-setting scenarios. METHOD: a comprehensive systematic review of useful interventions for easing the BPSD burden in patients with dementia (PwD) and their caregivers in the context of COVID-19 quarantine was performed from January 2010 to March 2020. RESULTS: From a total of 187 articles retrieved from electronic databases (MEDLINE, LILACS, Cochrane and SCOPUS), 43 studies were eligible for this review. Most of the psychosocial and psychoeducational interventions described were person-centered strategies based on the cognitive-behavioral approach or informational tools to enhance care providers' knowledge of dementia. Most studies achieved successful results in handling BPSD and mood-anxiety symptoms of care providers, contributing to an overall improvement in dyad life quality. CONCLUSION: Evidence from the last few years suggest that low-cost techniques, tailored to the dyad well-being, with increasing use of technology through friendly online platforms and application robots, can be an alternative to conventional assistance during COVID-19 Pandemic. Nevertheless, the world's current experience regarding the duration of the COVID-19 Pandemic and its effects on the cognition, behavior, and life quality of PwD will demand research on preventive and protective factors of dementia and the pursue of efficient interventions in different scenarios.

Effectiveness of day care in supporting family caregivers of people with dementia: A systematic review.

Day care (DC) provides a break in daily care as a support strategy for family caregivers (FC) of people with dementia (PwD). OBJECTIVE: to analyze the support strategies used by the DC for FC, their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life. METHODS: a systematic review following the Prisma methodology was performed on PubMed, PsycInfo, Scopus and SciELO electronic databases in August, 2018. The search keywords were "day care", "dementia" or Alzheimer disease, "caregiver", "quality of life" and "psychological adaptation". RESULTS: twenty-one studies were included. No randomized controlled trials were found. The provision of education, counseling and support, access to information, the professionals' expertise and the quality of their relationship with DC users were highlighted by caregivers. Compared to standard programs centering on PwD, the integrated program focused on PwD and FC activities showed increased feelings of competence and self-confidence of FC to postpone institutionalization. Heterogeneity in the structure and organization of the DC programs, intervention strategies and theoretical basis was observed. CONCLUSION: Integrated programs are a promising approach that addresses the needs and demands of PwD and their FC in a multidimensional manner.

O centro-dia (CD) permite uma pausa no cuidado diário como estratégia de apoio aos cuidadores familiares (CF) das pessoas com demência (PcD). OBJETIVO: analisar as estratégias de suporte aos CF oferecidas pelos CD, seus modelos metodológicos e teóricos, bem como os respectivos benefícios sobre sua sobrecarga, estratégias de enfrentamento e qualidade de vida. MÉTODOS: uma revisão sistemática utilizando a metodologia Prisma foi realizada nos bancos de dados eletrônicos PubMed, PsycInfo, Scopus e SciELO em agosto, 2018. As palavras chave da pesquisa foram "centro dia", "demência" ou doença de Alzheimer, "cuidador", "qualidade de vida" e "adaptação psicológica". RESULTADOS: vinte e um estudos foram incluídos. Não foram encontrados estudos randomizados. A oferta de educação, aconselhamento e apoio, o acesso a informações sobre a estrutura e o programa do CD, a expertise dos profissionais e a qualidade da relação destes com os usuários foram aspectos ressaltados pelos cuidadores. Comparados aos programas padrão centrados na PcD, estudos descrevendo o programa integrado, focado nas atividades para PcD e CF, mostraram um aumento no sentimento de competência e autoconfiança do CF e adiamento da institucionalização. Observou-se heterogeneidade na estrutura e organização dos programas de CD, nas estratégias de intervenção e nas bases teóricas. CONCLUSÃO: programas integrados são uma abordagem promissora que atende às necessidades e demandas das PcD e seus CF de forma multidimensional.

Effectiveness of day care in supporting family caregivers of people with dementia: A systematic review / Eficácia do centro dia no apoio a cuidadores familiares de pessoas com demência: uma revisão sistemática

ABSTRACT Day care (DC) provides a break in daily care as a support strategy for family caregivers (FC) of people with dementia (PwD). Objective: to analyze the support strategies used by the DC for FC, their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life. Methods: a systematic review following the Prisma methodology was performed on PubMed, PsycInfo, Scopus and SciELO electronic databases in August, 2018. The search keywords were "day care", "dementia" or Alzheimer disease, "caregiver", "quality of life" and "psychological adaptation". Results: twenty-one studies were included. No randomized controlled trials were found. The provision of education, counseling and support, access to information, the professionals' expertise and the quality of their relationship with DC users were highlighted by caregivers. Compared to standard programs centering on PwD, the integrated program focused on PwD and FC activities showed increased feelings of competence and self-confidence of FC to postpone institutionalization. Heterogeneity in the structure and organization of the DC programs, intervention strategies and theoretical basis was observed. Conclusion: Integrated programs are a promising approach that addresses the needs and demands of PwD and their FC in a multidimensional manner.

RESUMO O centro-dia (CD) permite uma pausa no cuidado diário como estratégia de apoio aos cuidadores familiares (CF) das pessoas com demência (PcD). Objetivo: analisar as estratégias de suporte aos CF oferecidas pelos CD, seus modelos metodológicos e teóricos, bem como os respectivos benefícios sobre sua sobrecarga, estratégias de enfrentamento e qualidade de vida. Métodos: uma revisão sistemática utilizando a metodologia Prisma foi realizada nos bancos de dados eletrônicos PubMed, PsycInfo, Scopus e SciELO em agosto, 2018. As palavras chave da pesquisa foram "centro dia", "demência" ou doença de Alzheimer, "cuidador", "qualidade de vida" e "adaptação psicológica". Resultados: vinte e um estudos foram incluídos. Não foram encontrados estudos randomizados. A oferta de educação, aconselhamento e apoio, o acesso a informações sobre a estrutura e o programa do CD, a expertise dos profissionais e a qualidade da relação destes com os usuários foram aspectos ressaltados pelos cuidadores. Comparados aos programas padrão centrados na PcD, estudos descrevendo o programa integrado, focado nas atividades para PcD e CF, mostraram um aumento no sentimento de competência e autoconfiança do CF e adiamento da institucionalização. Observou-se heterogeneidade na estrutura e organização dos programas de CD, nas estratégias de intervenção e nas bases teóricas. Conclusão: programas integrados são uma abordagem promissora que atende às necessidades e demandas das PcD e seus CF de forma multidimensional.

Resilience in Carers of People With Young-Onset Alzheimer Disease.

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.

Caregivers' Perspectives of Quality of Life of People With Young- and Late-Onset Alzheimer Disease.

BACKGROUND: Quality of life (QoL) is a growing area of interest in dementia research. This study aims to investigate the caregivers' perspective about the QoL of people with young-onset Alzheimer disease (YOAD) and late-onset Alzheimer disease (LOAD). We also aim to investigate factors that might be associated to caregivers' perspective in YOAD and LOAD. METHODS: We included 110 people with Alzheimer disease (PwAD; 53 YOAD) and their primary caregivers. The PwAD completed assessments about their QoL and cognition. The caregivers provided information about the PwAD (demographics, QoL, ability to perform activities of daily living, mood, and dementia severity) and had burden of care assessed. RESULTS: We did not find a difference in caregivers' perspectives of PwAD QoL according to the age at onset. However, the linear regression analysis indicated that caregivers' burden ( P < .01) and PwAD depressive symptoms ( P < .05) were significantly related to the caregivers' perspective of YOAD QoL. Caregivers' burden ( P < .01), years of education ( P < .05), and self-reported QoL ( P < .01) were significantly related to the caregivers' perspective of LOAD QoL. CONCLUSIONS: The factors that drive the perceptions of caregivers of PwAD QoL may vary according to the age at onset. The study provides basic information on caregivers' perspectives of PwAD QoL to create more effective interventions according to the age at onset.