National University of Ireland, Galway
Exploring personhood in dementia and its importance for care relationships, service delivery and regulatory instruments.
Irish Research Council
As the population ages, the number of people with dementia will increase significantly. By 2030, there will be approximately 75 million people with dementia globally and 103,279 in Ireland (Cahill et al., 2014, Prince et al., 2015). The WHO (2012) and the OECD (2015) have acknowledged this potential growth and argue for the prioritisation of dementia as a public health concern. A key issue facing policy-makers is recalibrating the locus of care in dementia from a medical-based model towards more social models of health production.
Person-centred dementia care focuses on the treatment of the person with dementia, not merely the disease, and is anchored in the concept of personhood. The socially constructed stigma of dementia denies the personhood of the person with dementia and creates additional impairment beyond solely the physical manifestations of the disease (Sabat, 2011). This can have important implications for the quality of life and well-being of the person with dementia. Very often, it is through the medium of social relationships, that people with dementia preserve connections to the self and others. Supporting this enhancement of self as the disease progresses is vital, particularly in the context of care relationships, service delivery and regulatory instruments that measure quality of care and quality of life.
This research will explore how people with dementia define, understand and interpret personhood through the lens of their interactions and relationships with their family carers and formal care providers. Qualitative interviews with people with dementia and their family carers will be conducted in two sites in Ireland, supported by interviews with formal care providers. The results will be refined into an instrument for use in regulatory frameworks for dementia care to ensure personhood is embedded in person-centred care processes. Ensuing recommendations will advise on incorporating this personhood measurement instrument in dementia care policy.