Seeing the bigger picture: Using the ‘Pictor’ visual elicitation method to explore roles and relationships in palliative care
Nigel King, Prof. in Applied Psychology; University of Huddersfield
Supporting decisions at the end of life: Relationality, care and choice
Rosie Harding, Prof. of Law and Society, Birmingham Law School
Dementia and Alzheimer’s disease has been the leading recorded cause of death in England and Wales since 2015. It was the third highest cause of death in Finland in 2017, and is the fifth leading cause of death globally. Finding ways to plan for dying with and of dementia is therefore an important dimension of both living with a dementia, and caring for a person with dementia. Yet talking about death and dying can be difficult, and the experience of cognitive impairment and declining capacity, makes it even more difficult. Building on my contributions to relational theory in Duties to Care (2017, Cambridge University Press), I will explore the challenge of supporting end of life decision-making by people with dementia and other cognitive impairments in the context of mental capacity law. I will draw on socio-legal empirical research from the Duties to Care project about the experience of caring for a person with dementia, and research from the Everyday Decisions project on how to support people with cognitive impairments to express their wishes, and make end of life choices about the social, medical and legal aspects of death and dying. I will argue that taking a relational approach to this challenging issue helps us to explore the multiple different levels of relationship and regulation that shape which choices about care at the end of life are available to people with impaired capacity. Through this analysis I will suggest social, interactional and legal strategies about how to ensure that everyone has the greatest opportunity to make choices that are meaningful to them, and to have these respected, at the end of life.
Making meaning in old age
Hans Stiffoss-Hanssen, Prof. at the Centre of Diaconia and Professional Practice, VID Specialized University, Oslo
I will depart from three research efforts that I have been involved in over the last years: 1. A study of the lived experience of dementia, as it is seen by some informal carers/spouses. I find it extremely important to see and study this situation from a psychosocial standpoint, with the aim to improve quality of care and quality of life. 2. A study of a somewhat similar group of carers, - the nearest persons of individuals suffering from terminal illness (cancer) – how their trajectory proceeds, and what kind of assistance they require. 3. A methodological study of the “Sources of meaning and meaning in life” methodology, developed by prof T Schnell. My colleagues and I find this instrument, and the knowledge and theory that comes with it, promising for the purpose of understanding and coming to grips with major existential challenges (like dementia, and terminal illness). Finally, a significant part of my research life has been dedicated to studies of the coping potential of ritualizing during crises, and I will conclude in pointing to examples of relevant ritualizing practices.