Over samosas and mithai, for a standard case study, an elderly South Asian woman narrated her experience as sole carer for her husband who had dementia. Her story was rife with cultural abuse that is mitigated under the guise of cultural sensitivity, while culture is ignored where it’s truly needed. I’ve spoken about culture and how it’s caused harm in previous clinical work but I still advocate for cultural sensitivity in healthcare, accommodating cultural beliefs even when they seem antiquated. Why should anyone endure shame, offense or distress to access services? Cultural sensitivity ensures they don’t and improves lives. But can it also hurt them?
Faiza* was married to a man with an aggressive streak. Urged by their families she learnt to live with it and love him, and they migrated to the UK, settling down with three sons. She had a simple life, as the primary child minder and not allowed to leave home, but she didn’t question the norm all those decades ago. The “little” physical abuse he dished out was compensated by other qualities and couldn’t be curbed in South Asian communities that preferred to brush it under the rug. After all, “we can’t say it in our culture. He is the husband”
However, in his 50s she noticed he was far more violent and easily provoked. When he didn’t recognise a contract she showed him he flew into a rage. He hid things and grew jealous of their sons, trying to ban them from the house. Concerned, Faiza took him to their GP and with difficulty, ashamed of the truth and not fluent in English, she detailed her husband’s increased physical abuse and irrational actions. Hoping for a solution Faiza was instead turned away, with the GP saying her husband “was a good gentleman” and wasn’t him hitting her a symptom of their heritage?
From thereon, it spiralled. The word dementia was creeping into conversations and then being hastily dismissed. Faiza had seen others’ “strange behaviour” and memories fading. “The way we lose teeth, lose eyesight, lose hearing, we lose mind” she said, and people were attributing it to normal ageing. “The brain is a 100 lights but with dementia some of the lights are off so there is less brightness” Faiza recognised this in her husband and attempted to find answers. She felt “my doctor needs to know he has dementia” so they would tell her what she could do for him. “How can I change? Because the person with dementia can’t”
They were in and out of the hospital for her husband’s diabetes and heart condition and she recalls “for 15 years running around no one picked up on it”. When she requested a cognitive assessment or listed what she’d noticed, all health professionals latched on to the domestic violence and said “Isn’t that how it is in your culture?” Her husband was typecast as a typical South Asian male, Faiza the complicit sacrificial lamb, and they refused to venture beyond these boxed stereotypes. Thus, Faiza continued to care for him in distress, unsure how to give them both peace.
In a time before Google, she attended to his needs while struggling to find out about dementia and what her options were as all the information was rare and in English. Their local libraries, community centres and charities held no answers, unsure themselves of what could be done about dementia. Any suggestions she understood were Westernised, focused on individualistic cultures that seemed to throw family values out the window and had no room for prayer. There were no friends or family available for long term support and stigma prevailed all around. Faiza was also under financial constraints, unable to leave her husband alone, with no skills to work out of the home, having never been permitted to leave it. She was exhausted, saying “the man is the roof and if the roof collapses what is left?”
In that time her culture believed this is what women were expected to do. “Wife as a carer cannot meet all needs but wives are the sole and primary carer majority of the time”. She was disparaged for thinking of bringing in outside help, with people saying “right now is the time to care and you want to give up”. When her husband was finally diagnosed she was still not provided with information on looking after her husband, carers or services, nor signposted to help for herself. She could see the toll it was exercising on her and felt, without another carer “there will be a second patient”. Her doctors, her community, and her culture had failed her.
With no choice she overcame her guilt and put her husband in a care home. “People didn’t think it was good but if I’m happy I don’t give a toss. If I suffered I should be happy” Ironically, some berated her for not availing the care home sooner, accusing her of deprioritising her husband’s wellbeing. “The lady is the black sheep. Always her fault” When he passed away she was grief stricken and she remembers him affectionately, of times he was good to her. She knows it’s strange but she understands they were both victims of their cultural upbringing.
Though times have changed considerably aspects of Faiza’s story still ring true. Whether it be domestic violence that is accepted in the growing South Asian diaspora or that even those that never hurt a fly suffer when attempting to access healthcare in a system that does not account for them. After being her husband’s carer and fighting to inform herself we discussed the need for raising awareness of dementia within South Asian communities, including how to support carers, who are often women.
There were proposals of culturally adapting leaflets, distributing educational DVDs and promoting talks on South Asian radio. She insisted there be community meetings discussing dementia that dispel stigma against it, challenge damaging mentalities and highlight the need and acceptability of outsider intervention and aid. Most importantly, we reflected on how crucial it is to account for culture in the healthcare system to allow information and resources to be accessible for South Asian carers, just like her, while also ensuring culture is not used to excuse the abuse of South Asian women. Just like her.
*Name changed to protect identity