“Nowadays it’s all person centred, yet is it really “Nowadays it’s all person centred, yet is it really?” From wrongs to rights Global Director of Dementia Care, Bupa Visiting Professor of Person-Centred Dementia Care, University of Bradford

Person-centred care – the risk is wrongs not rights! Origins go back over 25 years “.. ‘know the person’ ...” (1990) ‘Person first, dementia second’ (1995) Tom Kitwood (1997) – “the person comes first” “should no longer be person – with – DEMENTIA, but PERSON – with – dementia.” Yet 30 years on it is too often either - a misunderstood concept – reduced to the status of an intervention invariably predicated on a shallow understanding of what it means to be a person, or a misused concept – degraded to a marketing strap line.

What it means to work person-centred Tom Kitwood (1997) Personhood is bestowed upon one human being, by others, in the context of relationship Malignant social psychology (1990) – insensitive, unthinking and depersonalising tendencies. No evil intent but is part of our cultural inheritance. Dawn Brooker (2004) There is a difference between person-centred care (PCC) and an intervention •PCC it is not an intervention •Person centred care provides a set of guiding principles for our actions that enable people with dementia to maintain their personhood. V = Values people I = Individual’s needs P = Perspective of service user S = Supportive social psychology

Person First, dementia second Person First, dementia second is Bupa’s approach to person centred dementia care. We put the person, their experiences, well-being, needs and feelings at the centre of the caring process and have empathy for their daily experience. Person First is Understanding the uniqueness of the person with dementia. We learn about the person’s life, their family, their values and beliefs, and how they like things to be done. Appreciating that we share more in common with a person living with dementia than what separates us. Being there as they live their life in a world of not knowing, mystery and insecurity - a world that we can barely comprehend. Person First uses the knowledge of the person to inform “how” we care for the person; this means means listening to and thinking about the person and who they are first, to ensure we meet their needs in keeping with the way they like things done and how they want things to be. Person First is about ensuring that the care provided is always focussed on the person and not on the fact that they have dementia.

What it means to be Mrs S – A micro story

Broadening our Horizons Person-centred principles cannot be confined to care homes and the world of care. In high income countries 55% of people with dementia are at the beginnings, living with mild impairments and do not require ‘care’ People with dementia and their family carers have the same human rights as every other citizen. However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these. The need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support People with disabilities must be guaranteed the fullest possible realisation of their human rights including an opportunity to participate in and contribute to society, and where necessary, with the highest attainable standard of care Discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person

Bupa – Alzheimer’s Disease International Global Charter First Global Dementia Charter of its kind, focusing on the person, not the condition What we created A joint 10 point Global Dementia Charter, called ‘I can live well with dementia’, that sets out the rights of people with dementia and what they should be able to expect from society Why we have done it Sets out core fundamentals of high quality person- centred dementia care and support for people living with the condition.

A rights-based approach Dementia is a progressive intellectual disability No person is all disability Shifting the paradigm, changing the language Viewing dementia as a disability enables disability and human rights laws to be used to address the rights issues that people with dementia are facing – a means to an end, not a pejorative or stigmatising label (Mental Health Foundation, 2015) People with dementia have the same civil and legal rights as everyone else A human-rights based approach applies across the whole journey of dementia Participation- everyone has the right to participate in decisions that affect their lives The Mental Health Foundation Truth Inquiry (Dementia Truth Report, 2016)