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Muslim experiences of dementia – practitioner perspective

Mohammed Akhlak Rauf responds to the following question: how do Muslims experience dementia distinctively?
Asma: How do Muslims experience dementia distinctively, if they do? I think the first thing to think about when we talk about Muslims is that they are not just one homogenous group. So the social construct that people would have, by that I mean their education, the way they’re brought up, their whole society, their norms, will dictate to some extent what’s their norm, what’s valid.
So we work with people who may have a migratory kind of background coming from villages in South Asia, their take will be very different to somebody, you know, who might have had a good education, you know, has worked in a professional capacity, and we get that full breadth of different, you know, different types of Muslims that we work with. And in terms of thinking about how are people affected by dementia, living with dementia or their carer, is affected.
I think the thing that I would probably say is that carers often feel that there’s a sense of duty and obligation and that sense of duty and obligation to make people feel they have to undertake something that they don’t really know how to do. So for example, somebody who was a was a carer, so it’s a lady who’s a carer for her mother in law, won’t have training on how to feed her, manage, you know, aggression, moving and handling you know, as formal carers or supporters might do. But that feeling of duty to care might mean that even if she’s not willing to care, she’s carrying this burden of care.
So if we talk about it as a burden, that burden then impacts their thinking of can they get help, should they get help, who do they go to help? You know, does that lady speak to her husband and say I can’t cope with your mum’s dementia, you know, during the day, you just don’t understand the difficulty, or does she quietly get on with things? And if she’s trying to quietly get on with things, where do we pick up the mental pressures, if you like? So as mental ill health starts to come in, where does she go?
And equally, I think if we talk about people who are affected by dementia to start with, that sense which isn’t just about faith really, but it’s what is happening to me. You know, I’m I’m losing my sense. You know, I’m very forgetful. I don’t recognise faces or did I leave the gas on and things. And I think so there’s something here about mental health which cuts across all communities. When we start to think about faith, then we bring in issues such as that is this person being punished? So is God punishing them for maybe having been a bad person and I’m having to be that carer?
Is it the fact that I’m being punished to have to care for somebody that’s got really aggressive behaviours that may be difficult to care for? You know, somebody who doesn’t want to get dressed, doesn’t want to have a shower, has just eaten and they’re diabetic but they’re demanding you know, they need to be given their dinner. And the other aspect that I really want to talk about Muslim families is that young people may have a different approach to the older community.
So obviously we know for a second, third, fourth generations is that some people may feel that they’ve got to go to like a faith healer, somebody that might be an imam or somebody is going to give them some, you know, a drink or whatever that they’ve read something over. And our view is that they may feel that they’ve got to go down one route rather than the other.
So, for example, somebody might say, I’m not going to go to the GP because the GP won’t understand, as you know, as Muslims and you know, this dementia has come from God and I have to manage it and you know, the verse that says no soul is burdened with more than it can carry but that doesn’t mean to say that we can’t go out and get some help. There’s a, there’s another verse in the Quran that recognises dementia by saying it’s a longer verse, but you know, the crux of it is that some people get to live to a longer age. So in their old age some of those people then become forgetful.
And what we tend to say to some of our carers is that rather than sit at home and get stressed and worried and not cope with managing dementia, go get services, get help, get help for yourself, recognise you’re a carer because otherwise, like everybody else, it’s just on your mind. And then we also see some things which in some families we’ve seen where perhaps somebody isn’t reading their prayers right, or they’re constantly doing their wudu and they’re being corrected. So the family carers don’t understand dementia. They say, oh you’ve just read that, you’re reading it wrong, you’ve just done this, you don’t do it this way. And I think that starts to bring frustrations into families.

This step, and those that follow in this activity, include excerpts from an interview with Mohammed Akhlak Rauf MBE.

Akhlak is founder and director of Meri Yaadain Community Interest Company (CiC). He is also a PhD student at the University of Bradford, researching how South Asian carers manage care transitions for family members with dementia. In these steps, Akhlak shares his experience and expertise on dementia in Muslim communities.

Meri Yaadain (My Memories) CiC is a charitable initiative that supports ethnic minority people who live with dementia and the people who care for them. Meri Yaadain CiC also works to raise awareness of dementia in ethnic minority communities, and of ethnic minority experiences of dementia among statutory and voluntary community organisations. You can find a link to the Meri Yaadain CiC website below.

In this step, Akhlak responds to the following question: how do Muslims experience dementia distinctively?

Akhlak begins by reminding us of the contextual factors that lead to diversity among Muslims. Muslims with dementia, and people around them, may see dementia and experiences of caring as a punishment from God. Muslims who understand dementia from a religious framework may be more likely to seek guidance from an imam than from a mental health professional.

Akhlak also speaks about a religiously-informed sense of duty of care among Muslim carers. Muslims may feel obliged to care because of their religious beliefs around patience and forbearance, and therefore may not recognise seeking support for themselves, and for the person living with dementia as an option for them.

In this video at 03:44 Akhlaq says: “No soul is burdened with more than he can carry.” The quotation from the Qur’an referred to reads:

On no soul doth Allah Place a burden greater than it can bear. (Qur’an 2:286)
At 03:56 Akhlaq refers to a verse in the Qur’an the verse reads:
It is Allah who creates you and takes your souls at death; and of you there are some who are sent back to a feeble age, so that they know nothing after having known (much): for Allah is all-Knowing, all-Powerful. (Qur’an 16:70)


For dementia support, contact Meri Yaadain

Over to you

Considering the information shared in this step so far, do you think that Muslim people living with dementia, and their carers, experience mental health problems in distinctive ways? Can you name one (or more) reasons why?

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Understanding Mental Health in Muslim Communities

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