Dementia (London, England)最新文献

Caregiver-assisted cognitive training (CA-CT) delivered through videoconferencing presents a promising strategy for individuals with mild dementia. This study aimed to evaluate the experiences of persons with mild dementia, their caregivers, and professional trainers with a videoconference-based CA-CT program. A qualitative study was conducted using semi-structured interviews with five individuals with mild dementia, their five family caregivers, and four professional trainers. Interviews were transcribed verbatim and analyzed via inductive content analysis. Five themes emerged: (1) feedback on training scheme and delivery format, (2) transformation of caregiver roles and interaction patterns, (3) factors supporting cognitive training for persons with mild dementia, (4) benefits of training for persons with mild dementia, and (5) challenges influencing training efficacy for persons with mild dementia. The persons with mild dementia-caregiver dyads were generally satisfied with the training scheme and online training format, but older caregivers faced technological barriers. Caregivers served as supervisors, facilitators, and emotional supporters, leading to positive shifts in their attitudes, enhanced empowerment, and strengthened dyadic relationships. Emotional bonding and personalized care, along with emotional support and external supervision from trainers, facilitated the training of persons with mild dementia. Benefits for these individuals included improved cognitive engagement, task performance, mood, self-confidence, and cognitive function in daily life. However, training efficacy was affected by difficulties in task customization, low interest in certain tasks, and caregiver emotional and time burden. In conclusion, the CA-CT program was acceptable and beneficial, but technical barriers, personalizing tasks, and supporting caregivers must be addressed for optimization. Future interventions should incorporate personalized task design, multimodal technological support, and a hybrid approach to enhance the efficacy and sustainability of the interventions.

ObjectivesThis study aims to explore dementia knowledge and public stigma toward people with dementia (PWD) upheld by Vietnamese adults in their regular metropolitan sociocultural contexts, and their individual and contextual associated factors.MethodsA total of 720 adult participants, aged from 18 to 59, 43.47% of them resided in Northern Vietnam (Hanoi), and 56.53% in Southern Vietnam (Ho Chi Minh city) completed a face-to-face interview with research assistants using a printed survey. They were asked to openly report their language use of local terms and illness labels to address two typical dementia symptom scenarios. Their open-responses were noted verbatim for being coded and grouped into categories of folk and biomedical terms. They also completed other standard measures of dementia knowledge and public stigma toward PWD.ResultsParticipants reported a moderate level of standard dementia knowledge, while combining the folk and biomedical belief models with preference given to the folk beliefs in approaching dementia. Multivariate regression analyses show that education was significantly associated with dementia knowledge, both as a standard scale and open, subjective measures, and dementia stigma. Other individual factors, including anxiety about aging, age, income, exposure to dementia, as well as the contextual factor of region showed their role in predicting dementia knowledge and stigma.DiscussionResults call for future studies with more contextual factors, such as regional sub-cultures, cultural beliefs, and health policy, and imply the need for culturally tailored dementia educational program for groups of publics with diverse backgrounds, as well as advocacy campaigns of positive aging to ease destructive anxiety about aging and increase the willingness to learn about dementia.

Objective: The GreenConnect Dementia Respite Project is an innovative, nature-based (green care) initiative aimed at enhancing the quality of life for people living with dementia and reducing caregiver burden in rural/regional Victoria, Australia. After funding success for the project concept, a co-design approach was employed to inform the implementation foundations of the project. This paper presents the co-design process undertaken to inform the development of the project's model of care and implementation. Methods: A participatory co-design approach was employed (November 2023-January 2024), involving two focus groups with caregivers and individuals living with dementia, and a consultation workshop with diverse stakeholders, including service providers, community representatives, advocacy groups and others. The thematic analysis guided by the socio-ecological framework was applied to the workshop notes and focus group transcripts. Results: The findings led to the development of an inclusive and culturally appropriate, person- and family-centred model of care. This model includes personnel and stakeholder education, screening and assessment/diagnosis, person-centred care planning, diverse green care-themed respite settings, activities, and accommodation to address the unique needs of persons living with dementia and caregivers. Findings also contributed to shaping the implementation roadmap, stakeholder engagement strategies and a mixed method evaluation framework. Conclusion: Co-designing the GreenConnect Dementia Respite Project with end-users and stakeholders ensured the model of care was contextually relevant, inclusive, and responsive to the lived experiences of rural dementia dyads. The findings provide a foundation for implementing sustainable, person-centred respite services that promote autonomy, well-being, and social connection with the view to improve dyad quality of life and reduce caregiver burden.

In this study we investigate day-care centres as a form of community-based support designed to facilitate ageing in place for individuals with dementia, with the goal of delaying or preventing their transition to institutional care. Day-care centres provide structured activities designed to alleviate loneliness and isolation, affirm personal identity, and offer respite for family caregivers. In Sweden - the context of this research - some 16,000 older adults with dementia attend day-care centres. Our aim is to explore how individuals with dementia experience day-care centres, and to examine the types of identities that are made possible and enacted within this setting. The empirical material consists of 14 qualitative interviews conducted across six day-care centres located in two Swedish cities. The participants were 8 women and 6 men, aged between 60 and 90. Thematic analysis was used to analyse the data. The findings showed that participants viewed the day-care centres as accepting, non-demanding environments, in contrast to the more problematic identities they encountered in ordinary life. While participants acknowledged dementia as a shared condition and expressed their appreciation that they were part of a community where others also experienced memory difficulties, there was little effort to cultivate a collective identity centred on dementia. Participants seldom shared personal information with one another and generally deferred to staff to decide about group activities. Although their limited self-disclosure might suggest a lack of opportunity for deeper engagement, an alternative interpretation is that the group setting enabled participants to maintain an identity as competent social actors - individuals capable of navigating and adapting to the social expectations of the group. We thus highlight the nuanced ways in which day-care centres can support personhood and social participation among people living with dementia.

Caring for a family member with dementia is highly challenging. Many family caregivers rely on spirituality and religion to cope, particularly in Palestine, where health and social support services are severely limited. This study aimed to explore how spirituality is used by Muslim family caregivers of people with dementia in Palestine. A qualitative exploratory design was employed. Semi-structured in-depth interviews were conducted with a convenience sample of 21 participants from January to March 2025. Data were analyzed using content analysis. Participants had a mean age of 47.4 (±5.8) years, were all adult children of their care recipients, and were predominantly female (90.5%). The analysis revealed several interconnected spiritual coping strategies, categorized into four major themes: "blessing in disguise", focusing on the afterlife, stoicism, and intermissions. Spirituality is vital for supporting Muslim family caregivers of people with dementia. The findings can inform the development of high-quality, tailored, and culturally sensitive spiritual care interventions.

This article reports the findings of a study into how people who lived and died with dementia are remembered and memorialised. The case study - 'Celebrating the Life? The hidden face of dementia' - comprised one strand of a 10-strand interdisciplinary study, funded by the UK Arts and Humanities Research Council, which investigated memorialisation practices across time and place and in different socio-cultural contexts. It was hypothesised that exploring memorialisation and dementia might illuminate one of the key tensions of contemporary memorialisation, that of ambivalence and ambiguity. This article focuses on data collected in phase 1 from in-depth interviews with persons bereaved of a relative who had lived and died with dementia. Two categories of remembering are discussed and linked to the relative's outlook on dementia: (i) Remembering the person before dementia (ii) Remembering the whole life. Problematic memories which lead to a degree of ambivalence and ambiguity are also identified. The ongoing process of memorialisation emerges as a healing process; being able to remember and celebrate the whole life, with dementia as the final part of the person's journey, emerges as key to this process. It is suggested that the laying down of a repository of positive memories during the period with dementia is therapeutic both for subsequent grieving and for the relationship during the life and that this is an area in which care workers from health and social care services can make a significant contribution.

Background: People with dementia experience discrimination and treatment that contravenes their human rights in health and social care settings. Human Rights law is complex, and real-world application can be confusing. Researchers used the FREDA (Fairness, Respect, Equality, Dignity, Autonomy) framework to provide context to focus group discussions that explored the research question: 'What are the barriers and facilitators to upholding human rights for people living with dementia in care homes?'. Method: Seven focus groups of 90 minutes were conducted. Vignettes and open questions guided discussion. Groups consisted of 7-9 people of heterogenous backgrounds including care home staff (N = 35 from 20 care homes), people with dementia (N = 5), family members of someone with dementia (N = 5), and student nurses (N = 7). Thematic analysis was completed using the Braun and Clarke (2006) inaugural framework with the 6-phase analytical process and reflexive approach. Results: Three overall themes were elicited through this study, including: 1. Personal/individual attributes including subthemes: emotional intelligence, cognitive flexibility and education & experience. 2. Organisational culture including subthemes: care home ethos, organisational flexibility, and staff morale. 3. External influences including subthemes: family and visitors, and social care funding and support. The largest barrier to supporting human rights principles reflected care home ethos, followed by organisational flexibility. The greatest facilitator was emotional intelligence, then cognitive flexibility. Conclusions: This study responds to some of the recommendations from previous research that considered Human Rights approaches to people living with dementia in care homes. It addresses the specific suggestion to identify staff attitudes and understandings that might translate to meaningful enhancements in care relating to FREDA principles of human rights. This is the first study to determine that emotional intelligence and cognitive flexibility are key influences in enabling care home staff to uphold values of human rights for people living with dementia in homes.

Polypharmacy (taking five or more regular medications) is common in people with dementia or mild cognitive impairment (MCI) and is associated with poor outcomes such as decline in cognitive and physical functioning, falls and hospital admission. Reducing or stopping unnecessary medications (deprescribing) can help improve outcomes but limited research has been undertaken with people with dementia or MCI, especially in primary care. This study explored the perspectives and experiences of people with dementia or MCI, informal carers and healthcare professionals on deprescribing decision-making in this setting. Seven people with dementia, two people with MCI and nine informal carers took part in photo elicitation and an in-person interview. They took photographs of their day-to-day management of medication, which were used during the interview to probe the conversation. Sixteen healthcare professionals, including general practitioners, pharmacists, nurses, social prescribers and National Health Service memory clinic professionals, participated in individual online interviews. Data was analysed using inductive thematic analysis. Findings suggest the need to navigate 'patient vs carer vs professional voices' in the deprescribing process to ensure everyone's voice is included. It should take into account patient cognitive abilities, autonomy and independence, as well as carer experiences and the need for a written summary of what has been discussed and agreed. Flexible, tailored, cross-system medication management processes are needed to support effective deprescribing, including proactive follow-up. To facilitate deprescribing discussions, factors such as professional knowledge, safe environment, and sufficient time should be considered. Finally, careful consideration should be given to the potential impact of deprescribing decisions on day-to-day medication management and carer burden. These findings provide novel insights that demonstrate the need for a relationship-centred approach for deprescribing for people with dementia or MCI, which should inform future research on development of a primary care deprescribing intervention for this group of people.

The prevalence of dementia among Black families of African descent in Canada is projected to rise by 507%, according to The Many Faces of Dementia in Canada report. Despite this forecast, there remains a significant empirical gap regarding the lived realities of Black individuals with dementia and their care partners. This study addresses that gap by exploring the everyday realities of dementia care within Black communities in the Greater Toronto and Hamilton Area, particularly during the COVID-19 pandemic. Utilizing a qualitative interpretive lens, the study purposively sampled 24 participants (12 older adults with moderate dementia and their 12 care partners) for in-depth, dyadic interviews. Data were analyzed thematically using a reflexive lens. Findings indicate that care partners, whether care partners or healthcare professionals, take on extensive responsibilities in decision-making, daily care provision, and emotional support, which are shaped by pre-existing systemic inequities, including exposure to racial discrimination, and inadequate access to culturally responsive services. The pandemic further intensified these stressors, yet participants demonstrated resilience by drawing on communal resources and informal networks. The findings revealed that care-partners of people with dementia operate within a system that both relies on and marginalizes their labour. Yet, care-partners resisted these exclusions through collective resilience and community-based strategies. This study advocates for improving equitable access to services, reducing systemic barriers that delay recognision, and acknowledging the essential contributions of Black care-partners in Canadian caregiving framework.

Dementia causes conversational difficulties for the person and those close to them due to the ubiquity of language and cognitive problems. Little is known about the experience of conversations from the perspective of people with dementia and their conversation partners (CPs). This study aims to understand experiences of conversations through consultation with people with dementia, those close to them, and dementia professionals, and how people are supported when they experience difficulties communicating. Nine people with a range of dementia diagnoses and six CPs (spouses), all community-dwelling, attended an in-person focus group in one of two locations. Sixteen dementia professionals attended online focus groups. Focus groups were recorded and analysed using reflexive thematic analysis. Four themes were identified: the impact of conversation changes for the person with dementia and CP, conversation and dementia identity, support for conversation, and conversation and person-centred care. Language and memory changes impacted conversations and relationships. Societal stigma also affected conversations. Support for conversation was perceived to be scarce. The need for education and training to equip families to maintain conversation was emphasised. Supporting conversation was seen as fundamental to maintaining relationships and as a mechanism for professionals to deliver person-centred care.