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1.
Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.  相似文献   

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Objectives: Research suggests that the use of lies and deception are prevalent in dementia care settings. This issue has been explored from the view point of carers and professionals, and the acceptability and ethicality of deception in dementia care remains an area of heated debate. This article explored the issue of lies and deception in dementia care from the unique perspective of the people being lied to: People with Dementia.

Method: This study used a qualitative methodology, specifically, Grounded Theory (GT). The study used a two-phased design. Phase one involved a series of one-to-one interviews with People with Dementia. During phase two, the participants were re-interviewed in order to develop the emerging theory.

Results: Lies were considered to be acceptable if told in People with Dementia's best interest. This best interest decision was complex, and influenced by factors such as the person with dementia's awareness of the lie, and the carer's motivation for lying. A model depicting these factors is discussed.

Conclusion: This study enables the perspective of People with Dementia to be considered, therefore providing a more complete understanding of the use of deceptive practices in dementia care settings. This study suggests that the use of lies and deception in dementia care warrants further investigation.  相似文献   


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The aim of this study is to analyze parent–child agreement in the Spanish version of the Screen for Anxiety Related Emotional Disorders and its relationship with the anxiety symptoms reported in a scheduled interview and the Mini-International Neuropsychiatric Interview for Children and Adolescents in order to establish the best informant and the degree of incremental validity when both sources of information are combined. Results indicated that, as in the original English version, parent–children agreement is low, with parents clearly tending to report fewer severe symptoms than children. When both parent and child versions were related to anxiety symptoms of the scheduled interview, children showed higher relationships than parents with all the anxiety categories reported by the scheduled interview. Children's scores were also the best predictors of anxiety symptoms, while incremental validity of parent's reports was quite low.  相似文献   

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Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers.

Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male).

Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision.

Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.  相似文献   


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Objective: To determine to what extent the care home environment met the requirements of residents with dementia in the context of the views of managers, family carers and staff, and a standard environmental assessment.

Methods: Sixty participants joined focus groups to give their views, and the managers of all five care homes were interviewed. An environmental assessment of each home was carried out using the Sheffield Care Environment Assessment Matrix (SCEAM).

Results: The most common themes identified from the residents and carers groups were the need for activities and outings, staffing levels, and staff training, attitudes and commitment. Managers felt comfort and homeliness were most important features whilst staff rated health and safety highest. Care homes scored well on the SCEAM for health and safety, and comfort, however key aspects such as activities and staff factors were not covered by the tool.

Conclusion: Care homes may be designed and organised according to the priorities of staff and managers rather than the needs of residents and family carers. Service planners need to be aware of this discrepancy and consider the views of residents.  相似文献   


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Objectives: This paper examined the psychological factors that influence the well-being of health professionals who work with people with dementia and the types of care (person-centred or task-oriented) provided to these patients.

Methods: The literature was reviewed to identify the factors influencing the well-being of, and types of care provided by, health professionals working with people experiencing dementia.

Results: Based on our review of the literature, we propose that approaches to care and the well-being of health professionals working with dementia patients are influenced by the characterisation of dementia as a terminal illness that typically occurs in older people. Drawing upon terror management theory, we argue that exposure to dementia patients is likely to promote awareness of one's own mortality and death-related anxiety. A theoretical model is presented which posits that health professionals working in dementia care draw on experiential avoidance to manage this anxiety. Both death anxiety, and coping strategies, such as experiential avoidance, used to manage this anxiety may influence health professionals' approaches to care of, and attitudes towards, dementia patients. We also suggest a bi-directional relationship between health professionals' approaches to care and well-being.

Conclusion: Recommendations are made regarding future directions for research and implications for training of health professionals providing direct service or consultation in dementia care.  相似文献   


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Agitation and aggression are among the most challenging symptoms of dementia. Agitated persons with dementia can harm themselves, their caregivers, or other patients in a care facility. Automatic detection of agitation would be useful to alert caregivers so that appropriate interventions can be performed. The building blocks in the automatic detection of agitation and aggression are appropriate sensing platforms and generalized predictive models. In this article, we perform a systematic review of studies that use different types of sensors to detect agitation and aggression in persons with dementia. We conclude that actigraphy shows some evidence of correlation with incidences of agitation and aggression; however, multimodal sensing has not been fully evaluated for this purpose. Based on this systematic review, we provide guidelines and recommendations for future research directions in this field.  相似文献   

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People with dementia of the Alzheimer-type (DAT) have difficulties with performing everyday tasks, and error awareness is poor. Here we investigate whether recall of actions and error monitoring in everyday task performance improved when they instructed another person on how to make tea. In this situation, both visual and motor cues are present, and attention is sustained by the requirement to keep instructing. The data were drawn from a longitudinal study recording performance in four participants with DAT, filmed regularly for five years in their own homes, completing three tea-making conditions: performed-recall (they made tea themselves); instructed-recall (they instructed the experimenter on how to make tea); and verbal-recall (they described how to make tea). Accomplishment scores (percentage of task they correctly recalled), errors and error-monitoring were coded. Task accomplishment was comparable in the performed-recall and instructed-recall conditions, but both were significantly better than task accomplishment in the verbal-recall condition. Third person instruction did not improve error-monitoring. This study has implications for everyday task rehabilitation for people with DAT.  相似文献   

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The diagnosis of Parkinson's disease with dementia (PDD) or dementia with Lewy bodies (DLB) is based on an arbitary distinction between the time of onset of motor and cognitive symptoms. These syndromes share many neurobiological similarities, but there are also differences. Deposition of beta-amyloid protein is more marked and more closely related to cognitive impairment in DLB than PDD, possibly contributing to dementia at onset. The relatively more severe executive impairment in DLB than PDD may relate to the loss of frontohippocampal projections in DLB. Visual hallucinations and delusions associate with more abundant Lewy body pathology in temporal cortex in DLB. The differential involvement of pathology in the striatum may account for the differences in parkinsonism. Longitudinal studies with neuropathological and neurochemical evaluations will be essential to enable more robust comparisons and determine pathological substrates contributing to the differences in cognitive, motor, and psychiatric symptoms.  相似文献   

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A significant amount of children and adolescents consider themselves as lonely because their essential social needs are not sufficiently met. The present study analyzes the contributions of group acceptance reflected by the social status, of social behaviors, reciprocal friendships, and family climate to the frequency and intensity of loneliness. About 1200 students of 6th and 8th grade of secondary school in Vienna were asked about their social experiences in school. Peers filled up questionnaires about the behavior of these students. A major part of the 11- and 13-year-old students had negative social experiences in school and about 15% were suffering from these experiences and considered themselves as lonely. Lack of acceptance in the group contributed to this self appraisal as well as a lack of friends and (according to the students) little support by the family. Social behavior of lonely students was remarkable for frequent victimizations and a low level of prosocial behavior. The impact of poor group acceptance on the feeling of loneliness was transmitted by these two features of social behavior.  相似文献   

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Similar to Alzheimer’s disease (AD), dementia with Lewy bodies (DLB) is characterized by a profound degeneration of cortically-projecting cholinergic neurons of the basal forebrain (BF) and associated depletion of cortical cholinergic activity. We aimed to investigate subregional atrophy of the BF in DLB in vivo and compare it to the pattern of BF atrophy in AD. Structural MRI scans of 11 patients with DLB, 11 patients with Alzheimer’s disease, and 22 healthy controls were analysed using a recently developed technique for automated BF morphometry based on high-dimensional image warping and cytoarchitectonic maps of BF cholinergic nuclei. For comparison, hippocampus volume was assessed within the same morphometric framework using recently published consensus criteria for the definition of hippocampus outlines on MRI. The DLB group demonstrated pronounced and subregion-specific atrophy of the BF which was comparable to BF atrophy in AD: volume of the nucleus basalis Meynert was significantly reduced by 20–25 %, whereas rostral BF nuclei were only marginally affected. By contrast, hippocampus volume was markedly less affected in DLB compared to AD. Global cognition as determined by MMSE score was associated with BF volume in AD, but not in DLB, whereas visuoperceptual function as determined by the trail making test was associated with BF volume in DLB, but not in AD. DLB may be characterized by a more selective degeneration of the cholinergic BF compared to AD, which may be related to the differential cognitive profiles in both conditions.  相似文献   

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