Rights in mind: Thinking differently about dementia and disability

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

Research suggests that the grief experienced by the family members of persons with dementia has a distinctive nature that differentiates it from sorrow attendant on most other ill health causes. Over a variable period of time, the way in which dementia manifests in cognitive and physical changes tends to be experienced as a series of serious losses, each of which can be a source of grief leading to significant stress and emotional, mental, psychosocial and physical ill health. Research to date has focused on spouses and adult children: here we seek to add to the literature by re-presenting the grief-related perceptions and experiences of children and young people who have a parent with a young onset dementia. We draw on findings from a narrative auto/ biographical investigation to describe what dementia grief was like for study participants and to make suggestions for resources and support for those in this position

Care patterns of people with early onset dementia in Newcastle and the views of their carers

Available from British Library Document Supply Centre-DSC:m00/30827 / BLDSC - British Library Document Supply CentreSIGLEGBUnited Kingdo

Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence

BACKGROUND: Eighty per cent of care home residents in the UK are living with dementia. The prevalence of faecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. OBJECTIVE: To provide a theory-driven explanation of the effectiveness of programmes that aim to improve FI in people with advanced dementia in care homes. DESIGN: A realist synthesis. This was an iterative approach that involved scoping of the literature and consultation with five stakeholder groups, a systematic search and analysis of published and unpublished evidence, and a validation of programme theories with relevant stakeholders. DATA SOURCES: The databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, Scopus, SocAbs, Applied Social Sciences Index and Abstracts, BiblioMap, Sirius, OpenGrey, Social Care Online and the National Research Register. RESULTS: The scoping identified six programme theories with related context-mechanism-outcome configurations for testing. These addressed (1) clinician-led support, assessment and review, (2) the contribution of teaching and support for care home staff on how to reduce and manage FI, (3) the causes and prevention of constipation, (4) how the cognitive and physical capacity of the resident affect outcomes, (5) how the potential for recovery, reduction and management of FI is understood by those involved and (6) how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Data extraction was completed on 62 core papers with iterative searches of linked literature. Dementia was a known risk factor for FI, but its affect on the uptake of different interventions and the dementia-specific continence and toileting skills staff required was not addressed. Most care home residents with FI will be doubly incontinent and, therefore, there is limited value in focusing solely on FI or on single causes of FI such as constipation. Clinical assessment, knowledge of the causes of FI and strategies that recognise the individuals' preferences are necessary contextual factors. Valuing the intimate and personal care work that care home staff provide to people living with dementia and addressing the dementia-related challenges when providing continence care within the daily work routines are key to helping to reduce and manage FI in this population. LIMITATIONS: The synthesis was constrained by limited evidence specific to FI and people with dementia in care homes and by the lack of dementia-specific evidence on continence aids. CONCLUSIONS: This realist synthesis provides a theory-driven understanding of the conditions under which improvement in care for care home residents living with dementia and FI is likely to be successful. FUTURE WORK: Future multicomponent interventions need to take account of how the presence of dementia affects the behaviours and choices of those delivering and receiving continence care within a care home environment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42014009902. FUNDING: The National Institute for Health Research Health Technology Assessment programme