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Living with dementia: evidence from research and implications for policy

22 Mar 2016, 12.00PM–4.30PM
Conference Room (Level 0) Edinburgh Centre for Carbon Innovation University of Edinburgh
Julian C. Hughes, David Berry, Rosalie Ashworth, Anne MacDonald and Dr Barbara Sharp

Living with dementia: evidence from research and implications for policy

The British Society of Gerontology Scotland Group networking seminar entitled Living with dementia: evidence from research and implications for policy will be of interest to researchers, educators and practitioners in health and social care. 

Julian C. Hughes

Julian is a Consultant in Psychiatry of Old Age and Honorary Professor of Philosophy of Ageing

Northumbria Healthcare, NHS Foundation Trust and PEALS Research Centre, Newcastle University. He has edited, co-edited or co-authored books including: Dementia: Mind, Meaning, and the Person (OUP 2006), Palliative Care in Severe Dementia (Quay Books 2006), Ethical Issues in Dementia Care: Making Difficult Decisions (Jessica Kingsley 2006) and Supportive Care for the Person with Dementia (OUP 2010). His single-author books are Thinking Through Dementia (OUP 2011), Alzheimer’s and Other Dementias (OUP 2011) and How We Think About Dementia (Jessica Kingsley 2014). In 2013, he was appointed a member of the Nuffield Council on Bioethics having served on the working party in 2009 which produced the report Dementia: Ethical Issues. In 2015, Julian was appointed Deputy Chair of the Council.

David Berry

Policy Officer, Dementia Innovations Unit, Scottish Government

Overview of current and anticipated future dementia policy landscape in Scotland, including: diagnosis and post-diagnostic support; integrated home care; acute and specialist NHS care; palliative and end of life and residential care. How clinical, social and other research and data inform and influence policy and practice.

Rosalie Ashworth

Research Fellow at the University of Stirling and a Clinical Studies Officer for the Scottish Dementia Clinical Research Network

Rosie’s research background focuses on people’s experiences of living with dementia. She has a particular interest in how a biopsychosocial perspective can enhance our understanding of the condition, and how people learn to live well with dementia. She recently completed a mixed-method PhD exploring how people with Alzheimer’s disease perceive stigma and look to the future. People with early and late-onset Alzheimer’s disease participated to explore how age influenced experiences. The key findings of the PhD highlight that across participants there was a shared focus on remaining positive and managing one day at a time. She is currently working on a project exploring carers’ time use among people supporting older adults with care needs. In addition, she works for the Scottish Dementia Clinical Research Network to assist in the uptake and delivery of clinical research studies for dementia and other neurodegenerative conditions.

Anne MacDonald

Anne has been a member of Scottish Dementia Working Group (SDWG) since November 2014. She was elected as Vice Chair January 2016 and is also vice –chair of research sub-group of SDWG and is a reporter on Dementia Diaries funded by The Dementia Engagement and Empowerment Project (DEEP)   

Anne realised something was not right at the age of 51.  After a long journey she was diagnosed with Posterior Cortical Atrophy in 2014.  She was pointed in the direction of the SDWG, which was a lifeline.  She has met a great group of friends campaigning for things to be better for people coming after them.  She realised she was still herself and able to do many things; particularly challenge assumptions about dementia, pro-actively.  She believes passionately that people with dementia can educate others and should be heard as the expert voice of living with dementia.

Dr Barbara Sharp

Barbara is a member of Alzheimer Scotland’s public policy team and is seconded to the Alzheimer Scotland Centre for Policy and Practice at University of the West of Scotland for two days per week where she participates in Centre projects and teaching. Her recently completed doctorate was an interpretive phenomenological analysis responding to the need for a better understanding of stress as experienced by people with dementia.  In partnership with the University of the West of Scotland (UWS), Barbara is part of the teaching team who train Scotland’s national dementia champions and she supports Alzheimer Scotland’s network of Dementia Nurse Consultants in the NHS.  Barbara has led delivery of a range of programmes for NHS Education for Scotland and the Scottish Social Services Council as part of the national dementia strategic objectives.

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