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Counted but not counting? Women's experience of dementia

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Jo MoriartyAnna placed the peeled boiled egg on a napkin in front of the woman and said, 'You must be hungry. Eat!' The woman looked up at Anna and a faint smile appeared beneath the deep creases of her face. She took hold of the egg, and continuing to gaze into Anna's eyes, her head fell forward gently, then back, blinking her eyes slowly. Anna nodded in approval and smiled proudly.

I find this extract from Pia Kontos's http://dem.sagepub.com/content/11/3/329.abstract ethnographic study of Canadian residents in long term care almost unbearably moving. Anna has dementia, is aged 97, and walks with a Zimmer frame. Anna has been diverted from her journey from the breakfast table to the hallway ('no doubt to see if by chance the door to the exit had been left open', p334) by noticing the expression on the face of one of her fellow residents who is sitting at the table with her breakfast in front of her. This resident is unable to eat without assistance and she is sitting with a 'withdrawn and remote expression' (p335) waiting for a care worker to come and help her. Despite struggling to stand and peel at the same time, Anna removes the shell from the egg and offers it to the other woman.

We are told very little about Anna's personal details (her name is of course a pseudonym). We know that she lives in an Orthodox Jewish long-term care facility, that she must be older than most of the other people living there because residents have an average age of 88, and that she would be described as having moderate cognitive impairment because she scores 16/30 on the Mini Mental State Examination. We can also assume that Anna was probably not born in Canada as most of the residents are described as being of Eastern European descent. Anna was aged 97 when the study took place in 2001-2002 so it is possible that she and her family were among the many people forced to emigrate during the pogroms that took place in Eastern Europe in the early years of the 20th century.

However, other than knowing that Anna is a woman, we can only guess how her gender has influenced her experience of dementia. Anna becomes irritated by another resident (a man) who belches loudly in her hearing. She also shakes her head in disapproval at another unnamed woman whose skirt has become hitched up revealing her bottom. Anna's actions are very consistent with what would have been deemed suitable attitudes for a woman born over a century ago. She shows a nurturing side in her tender concern for the woman who cannot eat her breakfast without help. However, she is less tolerant of belching and hitched up skirts!

Women's experience of dementia is almost always discussed in terms of numbers ('Two thirds of people with dementia in the United Kingdom are women' http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=341) and in terms of those providing paid (women make up about 60 per cent of those caring for someone with dementia http://www.alz.org/alzheimers_disease_facts_and_figures.asp#impact) and unpaid care (almost ninety per cent of the dementia care workforce working in care homes and providing support in the home are women www.tandfonline.com/doi/abs/10.1080/13607863.2011.596808).

However, it is much rarer to see discussions about how dementia might impact upon how we see ourselves as women, which is why I welcome this project so much.

I remember interviewing a man who cared for his wife. With a sad irony, he told me that before she developed dementia she had 'been the memory in our house'. She had organised their calendar, writing down the social events they were due to attend, and booking dental appointments and visits to the opticians. She had also chosen, bought, and posted the cards and presents they sent for birthdays and Christmas, signing them all as coming from both of them. As she gradually became unable to do these tasks, he had taken over. His wife was no longer able to understand much of what he said to her and he added ruefully, 'I wish she knew how much I now appreciate what she did over the years.' Neither was she able to speak so I did not have the chance to ask her how she felt about having to give up something that she had done for so many years. Had she begrudged the time they had taken or had she enjoyed being the one making decisions, free of endless discussions about what another family member would really like for his or her birthday?

As we become increasingly aware of the multiple aspects of our lives that shape our experience of dementia, so we should not forget that many of them will have been profoundly influenced by our gender. We need to work together to ensure that we no longer have to rely on guess work, as we do in the examples presented here.

Jo Moriarty, is King's College London, Social Care Workforce Research Unit

Tags: female roles, women with dementia Written 2014-10-20

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