Situating support for people living with rarer forms of dementia
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ABSTRACT:
SUBMITTER: Sullivan M
PROVIDER: S-EPMC10557369 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundProviding a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains.MethodsAn anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care.ResultsOf 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines.ConclusionsGeriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines.
| S-EPMC8858511 | biostudies-literature
Project description:This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people's experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals' responses reinforced poetry's capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.
| S-EPMC10887667 | biostudies-literature
Project description:ObjectivesThe aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia.DesignA literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library.ResultsThe eleven papers that met the inclusion criteria spanned eighteen years and from five countries. Studies reported on peer support programs that were either hospital-based (n = 6) or community-based (n = 4), and were predominantly led by disciplines in the health sciences. Only one study did not involve delivering services. There was a range of methodological quality within the studies included in the review. Further analysis and synthesis led to the identification of three overarching peer support themes. These included: (1) peers as necessarily part of social support interventions; (2) a theoretical portmanteau; and (3) dementia spaces and relationality.ConclusionConsistent with a much larger body of work examining peer involvement in social interventions, this review reinforced the valuable contribution of peers. A full understanding of the mechanisms of change was not achieved. Notwithstanding, the issue of studies neglecting to sufficiently conceptualize and describe interventions is an important one - drawing attention to the need to continue to explore varied delivery, including co-produced models, and more effective evaluation strategies to inform the dementia care sector.
| S-EPMC9583292 | biostudies-literature
Project description:BackgroundEstimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers.ObjectiveThe aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design.MethodsA moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation.ResultsQuantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors.ConclusionsCtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.
| S-EPMC9067568 | biostudies-literature
Project description:BackgroundPeople living with dementia should be at the center of decision-making regarding their plans and goals for daily living and meaningful activities that help promote health and mental well-being. The human-computer interaction community has recently begun to recognize the need to design technologies where the person living with dementia is an active rather than a passive user of technology in the management of their care.MethodsData collection comprised semi-structured interviews and focus groups held with dyads of people with early-stage dementia (n = 5) and their informal carers (n = 4), as well as health professionals (n = 5). This article discusses findings from the thematic analysis of this qualitative data.ResultsAnalysis resulted in the construction of three main themes: (1) maintaining a sense of purpose and identity, (2) learning helplessness and (3) shared decision-making and collaboration. Within each of the three main themes, related sub-themes were also constructed.DiscussionThere is a need to design technologies for persons living with dementia/carer dyads that can support collaborative care planning and engagement in meaningful activities while also balancing persons living with dementia empowerment and active engagement in self-management with carer support.
| S-EPMC10793193 | biostudies-literature
Project description:Social work assessments underpin support plans for many people living with dementia in their own homes in England, but it is unclear how they acknowledge that dementia places people at greater risk of mouth and dental problems affecting their wellbeing. We explored if and how dental needs are addressed during care assessments and social workers' perceptions of this aspect of personal care. This study analysed (a) semi-structured interviews with 14 social workers providing support to people living with dementia in their own homes, (b) data from 39 care assessments and support plans from two English local authorities. Interviews were recorded online, transcribed, and thematically analysed. Documents were analysed descriptively and presented visually. Participants acknowledged that oral care may be overlooked during assessments and reflected on various reasons, including assumptions of responsibility and role restrictions, limited training, and poor links with dental services. This was further evident in the analysis of assessment documentation. Participants identified potential strategies and practice changes to better integrate oral care in social work practice. These included increased awareness and more discussions around dental needs, skills training and streamlining of support. The findings have implications for social workers, educators, and commissioners or funders engaging with people affected by dementia in social work and beyond.
| S-EPMC11780968 | biostudies-literature
Project description:Background and Objectives:Dementia is accompanied by increasing need for support in activities of daily living (ADLs). This brief report/literature review summarizes the practices to care for early stage, middle stage, and late stage ADL needs (dressing, toileting, and eating/nutrition), and examines commonalities across ADL needs and the extent to which practices are reflected in guidelines and/or evidence. Research Design and Methods:A review of the grey and peer-reviewed literature, using some but not all procedures of a systematic review. Key terms were identified for ADLs overall and for each of the 3 ADLs, and a search was conducted using these words in combination with (a) dementia, Alzheimer's disease, and similar terms, and (b) practices, interventions, guidelines, recommendations, and similar terms. Searches were conducted using databases of peer-reviewed literature as well as the Grey Literature Reports and Google search engine. Sources were included if they provided evidence or recommendations on interventions to address ADL functioning for dressing, toileting, and feeding for persons living with dementia. Results:As cognitive and functional impairment increases, the number of care practices and themes that embody care practices increases. The majority of practices are evidence-based, and most evidence is incorporated into guidelines. Discussion and Implications:Virtually all practices reflect person-centered care principles. Five recommendations summarize the evidence and recommendations related to providing support to persons living with dementia in relation to dressing, toileting, and eating/nutrition.
| S-EPMC5881654 | biostudies-literature
Project description:There is a lack of intervention promoting physical activity targeted toward people living with dementia because their input has not been prioritized in the development of exercise programs. The aim of this study is to investigate motivators and barriers concerning physical activity in people living with dementia in care homes and to give recommendations for intervention development. Qualitative semi-structured interviews were conducted; transcripts were analyzed using qualitative content analysis. Following a tailored procedural model, inductive and deductive category development was applied. The value of Cohen's κ = .94 indicates the high intercoder reliability of the category system developed. Ten interviewees reported 24 different barriers and 12 motivators concerning physical activity in the context of the social-ecological model. The strong impact of intrapersonal factors and the living environment became apparent. Points of reference for how people living with dementia can overcome barriers and activate their motivators to achieve more physical activity are provided.
| S-EPMC8182331 | biostudies-literature
Project description:Hearing impairment commonly co-occurs with dementia. Audiologists, therefore, need to be prepared to address the specific needs of people living with dementia (PwD). PwD have needs in terms of dementia-friendly clinical settings, assessments, and rehabilitation strategies tailored to support individual requirements that depend on social context, personality, background, and health-related factors, as well as audiometric HL and experience with hearing assistance. Audiologists typically receive limited specialist training in assisting PwD and professional guidance for audiologists is scarce. The aim of this review was to outline best practice recommendations for the assessment and rehabilitation of hearing impairment for PwD with reference to the current evidence base. These recommendations, written by audiology, psychology, speech-language, and dementia nursing professionals, also highlight areas of research need. The review is aimed at hearing care professionals and includes practical recommendations for adapting audiological procedures and processes for the needs of PwD.
| S-EPMC9197139 | biostudies-literature
Project description:Understanding how to improve the physical and cognitive accessibility of visitor economy businesses and organisations wanting to offer nature-based outdoor pursuits for people with dementia is key to supporting their inclusion and agency. The aim of this qualitative study was to understand the experiences, needs and preferences of people with dementia participating in nature-based outdoor pursuits in their leisure time. Semi-structured interviews were conducted with 15 people with dementia and 15 family members and subjected to thematic analysis. Four themes related to inclusion for people with dementia and their family members reflected diversity in individual needs and preferences for engaging with nature-based outdoor pursuits, their own adaptations to maintain access including accommodating risk, how cognitive and physical accessibility can be supported by businesses, and which practical and psychosocial barriers prevent inclusion. Learning from people with dementia and their family members has helped bridge the gap to their inclusion in nature-based outdoor pursuits. Their insights will inform the development of such pursuits by businesses and organisations as well as future work into risk decision-making.
| S-EPMC7617443 | biostudies-literature