Dementia is a progressive condition that can profoundly affect the lives of individuals and their families. With no known cure for the disease, the focus has shifted towards promoting well-being and enabling individuals to maintain an optimum quality of life. Understanding of the perspectives of both people with dementia and their carers in this area will provide greater insight into to the provision of dementia care services. The first paper systematically reviewed the literature exploring the level of agreement between self and family-proxy ratings of patient quality of life. Twenty-six studies were identified for review. The overall level of agreement between ratings was low. Patients were found to consistently rate their quality of life as higher, compared to family-proxy ratings. A range of factors influencing this discrepancy were identified: neuropsychiatric symptoms, cognition, awareness of disease, caregiver burden and stress, relationship factors, activities of daily living and sociodemographic characteristics. The need for further interventions to address these factors is highlighted, as well as implications for future research. The second paper aimed to explore people with dementia and their carers lived experience of social interaction and communication after attending a Cognitive Stimulation Therapy (CST) group. Interpretative Phenomenological Analysis revealed six superordinate themes. These captured the difficulties faced by people with dementia in accessing social opportunities and the positive experience of being in the CST group. Several challenges experienced by carers were highlighted and the subsequent impact this had on their emotional well-being. Improvements for people with dementia were noticed in areas of social communication, confidence and emotional wellbeing, with no noticeable change in memory. Carers expressed a desire for on-going support and intervention following the group. These findings have important implications for future research, dementia care and increased carer support.

Background: Group Cognitive Stimulation Therapy (CST) has been found to be effective in improving cognitive functioning and quality of life in people with dementia. However, little is known about whether it would be effective if delivered in an individual format. Design: A small n within-subjects, repeated measures design was used, with participants acting as their own control, to assess whether Individual CST was beneficial for people with vascular dementia. Method: 27 research packs were distributed, 12 returned the opt-in slip, eight completed the therapy and five participants (with a diagnosis of vascular dementia) were included in this study. Participants completed a four-week baseline period, seven-weeks of Individual CST, followed by a four-week follow up period. Outcome variables were cognitive functioning (assessed at start of baseline and end of intervention), quality of life and self efficacy (assessed at start of baseline, start of intervention, end of intervention and end of follow up) and anxiety and depression (assessed weekly). Results: Cognitive functioning was maintained or improved in four out of five participants. Improvements tended to be in the memory and language domains but declined in the attention domain. Participant quality of life and anxiety and depression ratings were also maintained or improved following the intervention. Conclusion: This research suggests that Individual CST may be beneficial for people with vascular dementia in terms of maintaining or improving cognitive function, improving quality of life and mood. This has implications for the provision of future interventions for dementia. Further research is required to further build on these findings in addition to assessing cost-effectiveness before Individual CST is offered as a therapeutic option.

[pt] No Brasil, há uma falta de investimento em tratamentos psicossociais para demência. A Terapia de Estimulação Cognitiva (CST) é uma intervenção psicossocial baseada em evidências para pessoas que vivem com demência (PvcD) que foi adaptada e validada para vários países. Desenvolvida no Reino Unido, a CST envolve 14 sessões que acontecem ao longo de sete semanas. Seu objetivo é melhorar a função cognitiva por meio de atividades em grupo temáticas, que estimulam implicitamente as habilidades, incluindo memória, função executiva e linguagem. As sessões seguem um conjunto de princípios básicos que incluem estimulação mental, novas ideias, pensamentos e associações e opiniões em vez de fatos. Estudos sugerem que a CST pode melhorar a cognição, o humor, a qualidade de vida e as atividades de vida diária em PvcD leve a moderada. No Brasil, um ensaio controlado randomizado (RCT) buscou investigar a viabilidade da CST no país. Os resultados sugerem que aqueles que participaram dos grupos da CST apresentaram melhora significativa nas medidas relativas ao humor e às atividades de vida diária. Devido à pandemia COVID-19, foram feitas adaptações para que a CST pudesse ser oferecida virtualmente (vCST). O primeiro estudo foi realizado juntamente com o RCT para acessar a perspectiva dos participantes do grupo e explorar os efeitos da CST. Foram realizadas entrevistas individuais semiestruturadas com as PvcD que participaram dos grupos e seus cuidadores (n = 23). As transcrições das entrevistas foram analisadas por meio da Framework Analysis. A partir da análise, dois temas gerais, Benefícios pessoais de fazer parte do grupo e Mudanças na vida diária e sete subtemas, Benefícios para cuidadores, Benefícios para pessoas com demência, Memória, Sociabilidade, Linguagem, Humor, Orientação, Atividades cotidianas e Sintomas comportamentais e psicológicos. Os resultados indicam que a CST traz benefícios pessoais percebidos às PvcD e aos cuidadores, e há muitas melhorias percebidas, que são consistentes com achados qualitativos anteriores e apoiadas por achados empíricos de ensaios da CST. O segundo estudo teve como objetivo acessar a experiência e as perspectivas das PvcD que participaram de grupos da vCST e seus cuidadores (n =25), durante a pandemia do COVID-19. As informações qualitativas que surgiram da análise serão comparadas com dados quantitativos para entender a eficácia e a viabilidade do vCST. As transcrições das entrevistas foram analisadas por meio daFramework Analysis. A partir da análise, dois temas gerais, Benefícios pessoais defazer parte do grupo e Design da vCST e 12 subtemas, Prazer, Estimulação mental, Estimulação contínua, Ocupação, Cognição, Humor, Sociabilidade, On-line, Duração, Estrutura de sessões, Centrada na pessoa e Baseada em evidências. Os achados indicam que a VCST levou a melhorias percebidas para a PvcD e trouxe benefícios pessoais para aqueles que participaram dos grupos. Resultados semelhantes são encontrados em estudos da CST, que sugerem que a vCST é viável, como a intervenção presencial. / [en] In Brazil, there is a lack of investment in psychosocial treatments for dementia. Cognitive Stimulation Therapy (CST) is an evidence-based psychosocial intervention for people living with dementia (PlwD) that has been adapted and validated to several countries. Developed in the UK, it involves 14 sessions over seven weeks. It aims to improve cognitive function through themed group activities, which implicitly stimulate skills including memory, executive function and language. Sessions follow a set of guiding principles which include mental stimulation, new ideas, thoughts and associations and opinions rather than facts. Studies suggest that CST can improve cognition, mood, quality of life and activities of daily living in mild to moderate dementia. In Brazil, a randomized controlled trial (RCT) sought to investigate the feasibility of CST in the country. The results suggest that those who took part in the CST groups had a significant improvement in measures relative to mood and activities of daily living. Due to the COVID-19 pandemic, adaptations were made for virtual delivery, and virtual CST (vCST) groups are being conducted. The first study was conducted alongside the randomized RCT to explore the real-life effectiveness of CST and to access the perspective of group participants. Individual semi-structured interviews were applied to PlwD who took part in the groups and their care partners (n = 23). The transcripts of interviews were analysed using Framework Analysis. From the analysis, two general themes, Personal benefits of being part of the group and Changes to daily living and 7 subthemes, Benefits for caregivers, Benefits por people with dementia, Memory, Sociability, Language, Mood, Orientation, Everyday activities and Behavioural and psychological symptoms have emerged. Results indicate that CST brings perceived personal benefits to PlwD and caregivers, and there are many perceived improvements, which are consistent with previous qualitative findings and supported by empirical findings from CST trials. The second study aimed to access the experience and perspectives of Plwd who have participated in vCST groups and their care partners (n = 25), during the COVID-19 pandemic. Qualitative information that has emerged from the analysis will be compared with quantitative data to understand the effectiveness and feasibility of vCST. The transcripts of interviews were analysed using Framework Analysis. From the analysis, two general themes, Personal benefits of being part of the group and Design of vCST and 12 subthemes, Enjoyment, Mental stimulation, Continued stimulation, Occupation, Cognition, Mood, Sociability, Online, Duration, Structure of sessions, Person-centred and Evidence-based have emerged. The findings indicate that vCST led to perceived improvements for PlwD and personal benefits for those who took part in the groups. Similar results are found in CST studies, which suggest that vCST is viable as studies have suggested with the face-to-face intervention.