Centre for Research on Personhood in Dementia Care

This unit is studying the effectiveness of a “personhood-centred” approach to the care of people with dementia. Unit researchers are examining whether focusing on the individual and their social interactions rather than the disease process can reduce disability, lessen the agitation associated with dementia, help people better maintain their sense of personal identity, and improve quality of life.

This unit is studying the effectiveness of a “personhood-centred” approach to the care of people with dementia. Unit researchers are examining whether focusing on the individual and their social interactions rather than the disease process can reduce disability, lessen the agitation associated with dementia, help people better maintain their sense of personal identity, and improve quality of life.

Dementia has been considered a biomedical condition that causes an irreversible decline in brain function. This model is now being challenged by research that suggests personal history, interactions with others, and how people with dementia are perceived within their social circle can also affect their behaviour and quality of life, not just their level of neurological functioning.

While a biomedical approach to dementia care prevails, growing evidence indicates a different approach may prevent or delay at least some of the negative consequences of dementia. This approach to care shifts attention from a primary focus on the biomedical disease process to a focus on “personhood” in and throughout the course of the disease. Personhood is used in this context to refer to the status bestowed on people with dementia in social relationships. For example, care that is focused on support for individual personhood, rather than the labeling of dementia patients, can help people better maintain their personal and social identities.

There is also early research suggesting that a focus on personhood benefits both the family and formal caregivers; also important considerations, given fiscal constraints on the health care system and the increasing emphasis on family care.

The Centre for Research on Personhood in Dementia Care at the University of British Columbia will conduct multidisciplinary research to increase our understanding and use of this emerging model for dementia care. Traditional views suggest personhood requires high-level abilities such as consciousness, rationality, memory, reciprocity and the ability to communicate. Because dementia causes a progressive decline in these cognitive functions, it’s assumed the disease strips people of their personhood status. Caregivers who share this belief are likely to engage in activities that further undermine or negate a patient’s autonomy, dignity and competency. A focus on personhood recognizes that each person is a unique individual with competencies and strengths, despite brain deterioration. While brain function may not be modified by this approach, social interventions may help lessen the disability and reduce the agitation and disruptive behaviours associated with dementia that can make providing care difficult, and improve quality of life as a result. The research unit will focus its research in four areas:

• Exploring the relationship between a focus on personhood and the course of the illness in a variety of settings.
• Examining how the social, cultural, familial and physical environment can support or impede the maintenance of personhood in individuals with dementia.
• Developing interventions that promote increased functional capabilities and quality of life in persons with dementia.
• Developing policies and practice guidelines that will improve service quality for people with dementia, their families and formal caregivers, and ensuring these guidelines are translated into care practices, through clinical and teaching partnerships.

Personhood-centred care holds promise for BC’s culturally diverse and aging population, because this model also recognizes the importance of socio-cultural contexts for understanding the dementia experience.

Award term completed September 2009.