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Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.
Pre–post interventional mixed methods study.
Online videoconference group program for carers across the UK held in 2021.
Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators.
The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions.
We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.
Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.
The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.
Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.
This chapter examines one particular neurological syndrome, semantic refractory access dysphasia, and demonstrates that patients with this disorder can provide a window on the organization of conceptual knowledge. The first attempt to give a principled account of semantic category dissociations was by the contrast of sensory and functional attributes within the domain of animate and inanimate stimuli. The evidence of categorical dissociations derived from refractory access patients must be interpreted with caution. The chapter also examines whether semantic relatedness constitutes a general property of the organization of conceptual space or whether this property is restricted to certain semantic domains. Neuropsychological studies of the nature and organization of conceptual knowledge have tended to concentrate upon certain semantic domains more than for others. Repetitive probe experiments have also led to the proposal of information within conceptual knowledge which is spatially encoded rather than verbally or visually encoded to support geographical knowledge.
We describe the standardization of three new tests of knowledge
of quantity facts, number operations and multiplication facts.
We also report a validation study in which a group of 50 patients
with cortical degenerative disorders were tested on these three
new tests of number processing. Our results show that the quantity
facts and number operations tests are sensitive measures of
number processing abilities. Performance on the three new tests
and the Graded Difficulty Arithmetic (GDA) test were found to
be significantly impaired in the Alzheimer's Disease (AD)
group. The frontotemporal dementia (FTD) group was subdivided
into those with a semantic dementia (SD) and those with prominent
frontal features (Non-SD). The semantic dementia subgroup was
more impaired than both the AD patient group and the nonsemantic
FTD subgroup on the quantity facts test. A more fine grained
analysis reveals several interesting patterns of performance,
including a dissociation between impaired performance on the
quantity facts and number operations tests and preserved
performance on the GDA. The findings attest the value of comparing
performance on the GDA and our new tests in delineating the
nature of an individual's number processing deficits.
Implications for the relation between simple arithmetic fact
knowledge and higher level number processing are discussed.
(JINS, 2001, 7, 825–834.)
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