Dementia (London, England)最新文献

Educational health promotion programs and resources support people to make informed decisions and change their behaviours. Dementia, a name for a group of degenerative brain diseases, affects over 55 million people across the globe. Currently, dementia risk reduction (DRR) is a global health priority as dementia has no known cure. Consequently, educational programs and resources that focus on DRR respond to the global health priority by targeting potentially modifiable risk factors. A project currently being undertaken by the research team is focussed on supporting DRR in Aboriginal and Torres Strait Islander Peoples' primary care settings in Queensland, Australia. One strategy adopted by the research team is to identify safe and appropriate DRR programs and resources that could be integrated into primary care settings. Consequently, the aim of this scoping review was to identify and determine the quality of DRR programs or resources that have been developed or used with Indigenous peoples of Canada, Aotearoa New Zealand, the United States of America, and Australia. The Joanna Briggs method for scoping reviews was used to identify programs and resources developed with, for and by Indigenous peoples of the target countries. Appropriate databases including CINAHL and Medline as well as Google searches for grey literature published in English since 2010 were used to identify sources. Eleven sources were identified. One source was a published article, the other ten resources were videos (n = 5), websites (n = 2) and electronic written resources (n = 3). Given the paucity of evidence of DRR programs and resources currently available for Indigenous peoples the following recommendations are made for future development. They need to: (1). Be firmly grounded in Indigenous health promotion principles and theoretical frameworks and co-designed with, by and for Indigenous peoples. (2). Provide information about how dementia risk can be reduced; and (3). Linked with chronic disease interventions.

Globally, 50 million people live with dementia and mostly receive care at home. Urinary, faecal and functional incontinence is common in this population and increases care demands. This study explores care partners' experiences managing continence care for people with dementia in Aotearoa New Zealand. The data are drawn from a cross-sectional qualitative study with 18 care partners of people with dementia and incontinence in mid and northern regions of Aotearoa New Zealand. Participants were interviewed face-to-face from June 2022 to April 2023. Data were analysed using Interpretive Phenomenological Analysis. Six Generalised Experiential Themes emerged. Care partners engaged in autobiographical and biographical meaning-making to interpret behaviours and maintain the personhood of people with dementia, focusing on dignity, identity, and social inclusion. However, caregiving often undermined care partners' personhood due to the physical and emotional demands of continence care. Access to resources was challenging, and healthcare support was often perceived as inadequate. Some care partners' strategies to find meaning and joy in everyday life contributed to resilience, while others experienced stress, fatigue, and burnout. Care partners used personal knowledge to support personhood, especially in social engagement. Uncertainty in managing incontinence led to self-doubt, exacerbated by the medicalised nature of continence care, which involves intimate attention beyond typical caregiving. Timely, credible advice could reduce uncertainty, but many found seeking resources overwhelming. Balancing their own well-being with caregiving highlights the need for support systems addressing the requirements of both care partners and people with dementia.

Care provided by family members is not always consistent with the principles of person-centred dementia care (PCDC) and interventions to improve the quality of care are needed. A good foundation for the development of such interventions is provided by an understanding of how good and poor care practices are manifested in everyday care, and of the challenges to providing good quality care. Thirty people providing care to a spouse or partner with dementia were interviewed, and asked to describe examples of the care they provided for activities of daily living and the challenges to providing good quality care. Framework analysis was used to guide and interpret the interviews. Interpretation was guided by the VIPS conceptualisation of PCDC which incorporates the principles of Valuing, Individual, Perspective, and Social. The quality of care varied, and examples of good and poor care practices are described. The principles of PCDC were sometimes in conflict with one another and with other considerations, such as personal safety and the wellbeing of the carer. Participants were often faced with challenging decisions in which they had to weigh up these different issues. To be credible, guidance for carers need to reflect the complexity of the issues they face.

Introduction: Informal carers face significant challenges related to care provision for people living with dementia. Participating in a mindfulness-based stress reduction program could improve the wellbeing of informal carers. However, engaging in these programs can be difficult for informal carers due to the needs of their care recipients. Purpose: This study aimed to co-design an online mindfulness program in collaboration with a range of stakeholders and those with lived experience as carers. Methods: This co-design study adopted an interpretive descriptive qualitative approach to the development of the program. The stakeholders (co-designers) included people with lived experience as informal carers and experts with experience in delivering mindfulness programs. The co-designers reviewed the program content which comprised a range of resources including a booklet, online content and audio recordings of mindfulness activities and provided feedback on the content and delivery methods, via one-to-one interviews. The data were synthesised via inductive content analysis. Findings: Two main categories were formulated: support for participants and program delivery and content. Sub categories for support for participants included, recognition of participants' roles, promoting self-care and acceptance through mindfulness, accounting for participants' limitations, developing a virtual social support network and providing support beyond the program. Sub-categories for program delivery and content included tailoring the program to the practical needs of the participants, providing options for program delivery and ensure a culturally safe program. Conclusion: Co-design approaches in collaboration with people with lived experience is essential for the successful adaptation of authentic and appropriate programs which account for carers' complex care demands and individual challenges. Co-design is an approach that can provide valuable insight about tailoring online programs for end-users to minimise implementation challenges and maximise the potential benefits.

There is increased recognition of the need to improve post-diagnostic pathways for people with dementia and their care partners living in the community to access rehabilitation services to support independence and wellbeing. However, there is minimal evidence on implementing rehabilitation services for this population. The study aimed to present the expectations and experiences of allied health staff involved in piloting the Sustainable Personalised Interventions for Cognition, Care and Engagement (SPICE) program based at an outpatient clinic of a public rehabilitation hospital. Over twelve weeks, the program combines small group and dyadic evidence-based interventions including cognitive stimulation therapy, occupational therapy, physical activity, care partner education, and dietetics. A qualitative exploratory methodology was used with pre- and post-program interviews conducted with ten allied health staff. Questions were designed to elicit the expected and actual benefits and challenges of the initial implementation of the multicomponent program. The multidisciplinary team were motivated by the potential for the SPICE program to meet an important service gap, and confident people with dementia and their care partners would benefit. Staff reported enjoyment, satisfaction, and confidence in delivering the program, and believed the multiple components had synergistic effects on participants, particularly regarding social connection and functional engagement. While staff had pre-program concerns regarding retention, participant fatigue, and managing challenging situations, these were not realised. At times, staff observed program intensity to cause unintended stress for some care partners. Resourcing and strategies to ensure sustainability were identified as important by staff, as well as the need for ongoing support to participants post-program. Overall, the SPICE program exceeded expectations and was rewarding for staff. Further work to refine and evaluate the program is necessary to support its potential to continue providing dementia rehabilitation to promote the independence and wellbeing of people with dementia and care partners living in the community.

Dementia is one of the fastest emerging global public health concerns today, as the World Health Organisation has predicted that the number of cases will triple from 55 million in 2023 to 152 million by 2050. Current evidence indicates that approximately 45% of dementia cases can be prevented or delayed by acting on potentially modifiable risk factors. However, public knowledge regarding this remains unknown in numerous poorly resourced countries, including Nepal, where the prevalence of dementia continues to increase. The lack of availability of dementia knowledge or risk-measuring tools in the native language may be accountable for this identified gap. Thus, our study aimed to translate and culturally adopt two significant measuring tools, KoDeRR, which measures the Knowledge of Dementia Risk Reduction and the DRP, which generates a Dementia Risk Profile focusing on 9 modifiable risk factors identified by WHO. KoDeRR and DRP have been translated and adapted into Nepali following the TRAPD protocol. Cognitive interviews were then conducted with five bilingual individuals to pre-test KoDeRR and DRP for cultural appropriateness, face validity, and appropriateness of language usage. Certain terms, including dementia, do not exist in Nepali, and some English words do not have direct translation. Similarly, some English words must be translated into multiple Nepali words to suit audiences from different literacy levels and various regions of Nepal. It is essential to be mindful of the choice of words used in the tools since intergenerational language disparities exist in Nepali-speaking communities, and the cultural appropriateness of the language used can vary from one language to another. Translating and adapting dementia survey tools into non-English languages is challenging and time-consuming. Despite these challenges, translating and adapting measuring tools such as KoDeRR and DRP in non-English languages will facilitate researchers' understanding of risk reduction knowledge and the risk profile of diverse communities.

A majority of persons living with dementia rely on informal family and friend caregivers. These caregivers shoulder immense responsibility while the person living with dementia is alive, and during bereavement are at risk for complicated grief or other psychobiological complications. Meaning making, the process of accommodating worldviews and beliefs to make meaning of a death, can mitigate the risk for complications of grief during bereavement. This meaning making can be facilitated by storytelling photo-elicitation interventions, which invite caregivers to narrate their experiences and emotions using images. Caregiver Speaks is one such photo-elicitation intervention. In this study, we sought to understand how caregivers of persons living with dementia who participated in Caregiver Speaks made meaning of their experiences. Researchers conducted a secondary qualitative analysis of text and image social media posts made by bereaved caregivers, employing a hybrid deductive-inductive approach. Six themes were identified: grieving, remembering, benefit finding, reconstructing identity, religious and spiritual coping, and connecting. These themes demonstrate that meaning making in caregivers of persons living with dementia was supported by Caregiver Speaks and expand on understanding of bereavement specific to caregivers of persons living with dementia. Our themes emphasize the significance of complete remembrance-of positive memories, but also of complex familial relationships and difficulties in caregiving and end of life. Additionally, we identified overwhelmingly positive religious coping, speaking to the role of faith in this population. Our theme of connecting also identified the novel ways in which caregivers might communicate through use of images, metaphors, and emojis to convey their emotions. Our findings support the use of storytelling, photo-elicitation interventions like Caregiver Speaks to prevent or mitigate grief complications in bereaved caregivers of persons living with dementia. They also suggest possible complementary interventions in bereavement support, such as facilitating remembrance or faith-based community outreach.

Background: The demand for long-term residential care for people with dementia is, especially for those in the moderate to severe stages, increasing. However, dementia care services within long-term care (LTC) settings remain underdeveloped in low- and middle-income countries (LMICs). Objectives: This qualitative evidence synthesis aimed to explore LTC staff's experiences of taking care of people with dementia in LTC facilities in LMICs. Methods: A comprehensive literature search was conducted of six databases in January 2023 and updated in August 2024 for qualitative studies of LTC staff's experience of caring for people with dementia. Thematic synthesis was utilised for data synthesis, and NVivo facilitated this process. Results: 8,565 studies were screened, and 11 articles were included in this review. The studies included were conducted in Brazil (n = 2), China (n = 5), India (n = 1), Iran (n = 1), Malaysia (n = 1) and South Africa (n = 1) between 2012 and 2024. An overarching theme was identified: We are an island: underdeveloped dementia care within the LTC settings in LMICs, and the following categories identified as (1) the development of care provided for people living with dementia within care home settings is in its infancy; (2) the positive and effective coping strategies that may help embrace a brighter future of dementia care; (3) the deficiencies in caregiving approaches that contributed to poor-quality care for people living with dementia. Conclusions: The development of dementia care services within LTC in LMICs is still in its early stages. The main concern is the lack of available support and training for care staff and their insufficient dementia knowledge and care competencies. We hope that this review will help to increase attention to this significant issue of long-term institutional care for people with dementia in LMICs and that further research could investigate and enhance potential improvements in the practical implementation of long-term residential dementia care.

Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. A tool for ACP that incorporates a range of outcomes that are most important to persons with cognitive impairment and their carers is needed. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. We conducted interviews with 17 persons with MCI or dementia and 15 caregivers of persons with MCI or dementia. Interviews explored participants' prior experiences with ACP and goals for care planning. Content analysis was used to generate a list of outcomes identified as most important to persons with MCI or dementia and their carers. The list of person-centered outcomes was refined/categorized by research team consensus. Most participants in the sample had not participated in a prior ACP conversation with a primary care provider. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific. The outcomes identified as most important to persons with MCI or dementia and their caregivers can be used as a foundation for future work focused on developing an ACP tool to guide shared decision-making about healthcare. This tool can facilitate prioritization of goals that are most meaningful to persons with cognitive impairment and their carers as opposed to focusing only on medical aspects of care.

Frontotemporal dementias (FTD) are a group of early-onset neurodegenerative disorders that primarily affect the frontal and temporal lobes, leading to changes in behavior, motor abilities, communication, and executive functions. Primary progressive aphasias (PPA), the language variant of FTD, specifically impair speech and language abilities. The heterogeneous presentation of FTD, particularly PPA, complicates differential diagnosis and treatment selection for healthcare professionals. These challenges are further exacerbated for patients in rural areas due to limited access to specialized healthcare services. This cross-sectional, descriptive case study examines a 76-year-old male patient diagnosed with agrammatic primary progressive aphasia (nfvPPA) living in a rural area in the U.S. We conducted a semi-structured interview with his caregiver to explore the lived experience of being diagnosed and treated for PPA in a rural setting and to identify challenges encountered during the diagnostic and therapeutic processes. Several critical barriers were identified, including poor interprofessional communication, inadequate practitioner-patient and caregiver communication, limited access to educational resources, inconsistent intervention and follow-ups, and restricted healthcare services. To improve the patient and caregiver experience, we propose a collaborative management model centered around speech-language pathologists with expertise in FTD/PPA. This model aims to facilitate smoother navigation of the healthcare system and improve patient outcomes. Effective care management requires clear and continuous communication among providers, patients, caregivers, and other professionals. Additionally, educating and supporting FTD/PPA patients and their families is essential. Research gaps in rural areas regarding diagnosis and treatment outcomes further hinder care, underscoring the need for targeted studies to enhance clinical practices and improve the quality of life for both patients and caregivers.