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An interpretive perspective

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Isabella LuthraDuring my first two years as a medical student, if I had been asked to write a piece about women and dementia, I would have probably felt it necessary to write about the anatomy and physiology behind the disease process, the risk factors affecting women and treatment options. However, having just completed a social science degree in Gerontology, I now realise that having this strictly biomedical approach is somewhat (if not totally) naïve.

When thinking about women and dementia, medical students and professionals should also appreciate their lived experiences. This is often overlooked, even in terms of research which tends to prioritise biomedical aspects of the disease. Exploring, and acting upon, an 'interpretive' way of thinking about dementia would lead to better patient-centred care, as this paradigm acknowledges the sociocultural and emotional aspects of living with the condition.

As women with dementia age, various biological processes cause physical disintegration of the seen body (in the form of various physical impairments) and unseen body (the brain and mind). Therefore, women must deal with the loss of physical and mental ability. However, if we look beyond this, it becomes apparent that these are not the only forms of loss that women with dementia must live with. Dementia threatens one's sense of self because it affects both long-term and more recent memories, and makes people increasingly reliant on others to remind them of their former selves. However, this increasing reliance is often not sufficiently matched by the amount of support women receive, chiefly because many women have outlived their peers, including their spouses. The removal of societal roles (such as a wife, carer, friend or sister) further threatens this sense of stability and in turn the preservation of personhood for women with dementia.

Despite women having to live with these losses, academics have argued whether the loss of cognition in dementia is synonymous with loss of selfhood. Even in severe cases of dementia, it has been suggested that selfhood can be preserved because it is not purely cognitive. Selfhood can also be expressed through the 'embodied self,' meaning the body's natural power of expression through basic bodily movements. Therefore, less attention should be paid to cognition and language as primary forms of communication. Socialisation which makes use of this alternative type of communication would be useful in severe cases of dementia when verbal communication is not possible, as women could express themselves and their wishes through the body.

Although this notion of the embodied self appears promising, we live in a 'hyper-cognitive' society where people are very much defined by their minds. This creates the worrying prospect that many women still face the possibility of losing their sense of personhood following the onset of dementia.

Researchers should prioritise gaining first-hand accounts from women with dementia, so that more can be understood about what governs their ability to maintain their personhood. Maintaining personhood should also be better acknowledged in the medical field, as it would allow for optimisation of patient-centred care in dementia.

Isabella Luthra is a third year medical student at King's College London, working as a researcher at the International Longevity Centre.

Tags: embodied self, female roles, research, women with dementia Written 2014-07-10

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