584 research outputs found
Discourse and Dementia:Using positioning theory to explore whether an Appreciative Inquiry approach supports people living with dementia to challenge discourse
Dementia care from behind the mask? Maintaining well-being during COVID-19 pandemic restrictions: Observations from Dementia Care Mapping on NHS mental health hospital wards in Wales
Establishing authentic partnerships with people living with dementia as educators within a university curriculum
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The diagnostic pathway experiences of people living with rare dementia and their family caregivers: A cross-sectional mixed methods study using qualitative and economic analyses
YesThe pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.This work is part of the Rare Dementia Support Impact project (The impact of multicomponent support groups for those living with rare dementia, (ES/S010467/1)) and is funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/ (accessed on 1 December 2023)). The work is also funded by the Wales Centre of Ageing and Dementia Research (CADR), a collaboration between Bangor, Swansea, and Aberystwyth universities funded by Health and Care Research Wales
The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers:Protocol for a 3-Phase Support Group Evaluation
BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. CONCLUSIONS: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/3537
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Establishing tephrostratigraphic frameworks to aid the study of abrupt climatic and glacial transitions: a case study of the Last Glacial-Interglacial Transition in the British Isles (c. 16-8 ka BP)
Distally dispersed tephra layers have become an important tool in the investigation of palaeoenvironmental and
archaeological records across the globe. They offer possibilities for the synchronisation and improved chronological
control in those records to which they can be traced and hence contribute to an improved understanding of the pattern
and timing of environmental and archaeological change during periods of rapid climatic adjustment. However, their use
as robust isochronous markers for synchronising records is frequently compromised by uncertainties relating to
stratigraphical context, precise chronology and chemical composition. Here we collate and review the
tephrostratigraphical information dating to the Last Glacial-Interglacial Transition (LGIT; c. 16-8 ka BP) in the British
Isles based on published and unpublished records obtained from 54 sites. Based on details of their stratigraphic
position, chronology and chemical composition, we propose that 26 individual eruption events may be represented in
this collective record which spans the LGIT. The great majority of these eruptives can be traced in origin to Iceland, but
we also report on the recent discoveries of ultra-distal tephra from the North American Cascades range, including for
the first time the Mount St Helens J Tephra at a site in southern Ireland. These particular ultra-distal discoveries have
resulted from a reinterpretation of older data, demonstrating the potential importance of ‘unknown’ analyses in older
tephra datasets. The outcome of this review is a comprehensive but provisional tephrostratigraphic framework for the
LGIT in the British Isles, which helps to focus future research on parts of the scheme that are in need of further
development or testing. The results, therefore, make an important contribution to the wider European
tephrostratigraphic framework, while adding new discoveries of transcontinental isochronous tephra markers
The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation
BACKGROUND:
People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic.
OBJECTIVE:
We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups.
METHODS:
We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed.
RESULTS:
The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions.
CONCLUSIONS:
The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population
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