4,605 research outputs found

    Appropriate disclosure of a diagnosis of dementia : identifying the key behaviours of 'best practice'

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    Background: Despite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours. Methods: To identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out. Results: Interviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively. Conclusion: This exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.This project is funded by UK Medical Research Council, Grant reference number G0300999

    Managing behavioural and psychological symptoms in community dwelling older people with dementia:1. A systematic review of the effectiveness of interventions

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    © 2018 The Author(s) This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence CC BY 4.0 (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.Background: Two-thirds of people living with dementia live at home in the UK and many experience distressing behavioural and psychological symptoms. This systematic review evaluates the effectiveness of non-pharmacological interventions for behavioural and psychological symptoms among community-dwelling people living with dementia. Methods: This two-stage review undertook an initial mapping of the literature followed by a systematic review of relevant randomised controlled trials. We searched electronic databases for pertinent studies reporting outcomes from interventions from January 2000 to March 2015 and updated searches in October 2016. We included studies that considered behavioural and psychological symptom management for older people living with dementia who live at home and excluded studies conducted in long-term care settings. This paper presents findings from a narrative synthesis of 48 randomised controlled trials evaluating interventions for people living with dementia alone, family carers alone and patient-carer dyads. Results: We retrieved 17,871 de-duplicated records and screened them for potential inclusion. Evidence from 48 randomised controlled trials suggests that family carer training and educational programmes that target problem behaviours and potential triggers can improve outcomes. Nurses and occupational therapists appear to help people with dementia with behavioural and psychological symptoms, but professional comparisons are lacking and there is no shared language about or understanding of behavioural and psychological symptoms amongst professionals, or between professionals and family carers. Conclusions: Future research should focus on the effectiveness of components of multi-faceted programmes and their cost effectiveness and include qualitative data to better target interventions for behavioural and psychological symptoms. It is important to consider family carer readiness to use non-pharmacological strategies and to develop a shared language about the inherent needs and communications of behavioural and psychological symptoms.Peer reviewe

    An evaluation of the role of the Admiral Nurse : a systematic evidence synthesis to inform service delivery and research

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    Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. There are currently around 100 Admiral Nurses employed in England. In addition the charity has a national helpline provided by experienced Admiral Nurses. The evidence synthesis presented here was commissioned by Dementia UK in order to establish what is currently known about the scope, nature and effectiveness of Admiral Nurse

    Role of Artificial Intelligence (AI) art in care of ageing society: focus on dementia

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    open access articleBackground: Art enhances both physical and mental health wellbeing. The health benefits include reduction in blood pressure, heart rate, pain perception and briefer inpatient stays, as well as improvement of communication skills and self-esteem. In addition to these, people living with dementia benefit from reduction of their noncognitive, behavioural changes, enhancement of their cognitive capacities and being socially active. Methods: The current study represents a narrative general literature review on available studies and knowledge about contribution of Artificial Intelligence (AI) in creative arts. Results: We review AI visual arts technologies, and their potential for use among people with dementia and care, drawing on similar experiences to date from traditional art in dementia care. Conclusion: The virtual reality, installations and the psychedelic properties of the AI created art provide a new venue for more detailed research about its therapeutic use in dementia

    Factors influencing palliative care in advanced dementia : A systematic review

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    © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs. Aim: To investigate the factors influencing provision of PC services for people with advanced dementia. Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data. Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning. Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.Peer reviewe

    Factors related to the quality of life in family carers of people with dementia: a meta- analysis

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    Objectives: This meta-analysis aimed to (1) quantitatively synthesize evidence of factors related to the quality of life (QoL) of family carers of people with dementia and (2) explore moderating factors that may influence the strength of the relationship between such potential predictive factors and carer QoL.  Methods: Studies that investigated correlations between patient/carer factors and QoL in unpaid family carers of people with dementia and were published in English, Spanish, Portuguese, or Japanese were included.  Results: Thirty-three studies were identified. The pooled correlations with carer QoL (effect size) were significantly large for depression (−0.58), significantly moderate for subjective burden (−0.47), and significantly small for people with dementia’s neuropsychiatric symptoms (−0.24). These results indicated to be robust in the context of publication bias. The results of subgroup analyses demonstrated the social and economic development status of the country where study participants resided did not moderate these effects.  Conclusion: Carer depression, subjective burden, and people with dementia’s neuropsychiatric symptoms may play a critical role in maintaining QoL of family carers regardless of the social and economic circumstances

    Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis

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    Introduction: Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers’physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Method: Concept analysis. Results: Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. Discussion: YOD affects caregiver’s health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Implications for Practice: Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD

    Managing behavioural and psychological symptoms in people with dementia and their carers living at home/community- A mixed methods evidence synthesis for non-pharmacological interventions

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    Plain English Summary Background Two-thirds of people with dementia live at home and many experience distressing symptoms such as aggression, wandering, agitation, emotional problems, known as behavioural and psychological symptoms of dementia (BPSD), which result in poor outcomes. We aimed to combine evidence from various sources to find out what types of non-drug based interventions might be helpful for people with dementia and their carers. We also conducted focus groups (FG) and interviews with service users and providers around managing BPSD
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