Current Government recommendations in England suggest a national approach to risk management but, in an increasingly litigious society, how do professional carers balance risk management with the promotion of a person-centred approach in dementia care? Wandering behaviour can be both beneficial and harmful to a person with dementia and generate considerable emotional distress in their carers. This study combined a systematic review and qualitative research methods to explore the perspectives of different stakeholders in the management of wandering in dementia. A major theme for carers was the conflict between the prevention of harm and the facilitation of a person's right to autonomy. Such tensions also impacted on carers' abilities to provide person-centred care. This dilemma was highlighted through the use of assistive technologies such as electronic tracking devices. Interestingly, people with dementia felt that the use of such technology placed them at greater risk, i.e. as a target to theft, than the process of wandering itself. They spoke of their need for independence and their concern over carer surveillance and the identity of 'big brother.' There is a need to develop practical tools for managing risk within dementia care which allow all perspectives to be captured and risk management to be negotiated.
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The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.
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