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Title: The nature of autonomy when living with dementia
Author: Wolfe, S. E.
ISNI:       0000 0004 7428 4202
Awarding Body: University of Liverpool
Current Institution: University of Liverpool
Date of Award: 2017
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Dementia is a cluster of symptoms for which there is no cure and which features in several neurodegenerative illnesses, most commonly Alzheimer's disease (Hoang, Crouch, Knifton & Brayne, 2015). In the United Kingdom, the need to improve public awareness of dementia has been highlighted (Alzheimer's Society, 2009, p.8). Whilst calls have been made for increased funding towards researching a cure, the increasing population of people living with dementia demands that further efforts also be made to enhance quality of life. Not only is this relevant to individuals with a diagnosis of dementia, but also the people providing informal care for their loved ones, who share experiences of distress, exhaustion and stigma (Cuijpers, 2005; Stirling, Andrews, Croft et al., 2010). As a group made vulnerable by deterioration in memory, comprehension and communication skills over time, people with a diagnosis of dementia have been subjected to stigma and mistreatment which has denied them their human rights (Cooney & Wrigley, 1996; Alzheimer's Society, 2009; Tronetti, 2014). One of the ways in which services can be shaped to support higher quality of life among people living with dementia is training and service development informed by rights-based approaches to healthcare. Making rights easier to understand and claim involves operationalising the Human Rights Act (Butchard & Greenhill, 2015). Some general agreement about the pillars of human rights based approaches to health is evident in the PANEL (Participation, Accountability, Non-discrimination, Empowerment and Legality) (British Institute of Human Rights, 2013) and FREDA (Fairness, Respect, Equality, Dignity and Autonomy) principles (Curtice & Exworthy, 2010). However, it is recognised that rights and rights based approaches are 'sites of struggle over meaning' (Yamin & Cantor, 2014). How rights are conceptualised will impact upon how well rights based approaches are understood, implemented and measured, and ultimately how effective they are at countering harmful power imbalances. Not only are clinical psychologists well-placed to influence organisational change through training and consultation (Butchard & Greenhill, 2015), it is increasingly being recognised that protecting and promoting rights is fundamental to mental health care (Kinderman, 2007). The Health and Care Professions Council (HCPC) embed this in the Standards of Proficiency for Practitioner Psychologists calling upon them to 'understand the need to respect and uphold the rights, dignity, values and autonomy of service users including their role in maintaining health and wellbeing' (HCPC, 2015 p.7). The following thesis explores constructions concerning 'autonomy' from the perspective of people living with dementia and their family carers.
Supervisor: Greenhill, E. ; Butchard, S. ; Day, J. Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral