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Mental health support for Muslims with dementia and their carers: practitioner perspective

Akhlak shares case studies of Muslim experiences of dementia
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Asma: Can you think about a case study or an example of somebody that you’ve supported where it helped them to understand their problem from an Islamic or Muslim perspective and how you understood their experience from an Islamic or Muslim perspective as well? I think sometimes it’s difficult to think of just one set case. So I’ll try and talk about one situation, but it will probably deviate to the other because I think they all kind of interconnect. So the first thing is, why would somebody approach Meri Yaadain? I think there’s something here about trust that you go and speak to somebody who may look like you, sound like you, has the same kind of lived experience as you.
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So it might be that, you know, as a Pakistani heritage Muslim man, that somebody might feel comfortable to talk to me and say, well, actually you understand where I’m coming from. I can’t say I’m not going to look after my dad. And it’s my duty to care for my dad. English isn’t a problem for me. Why aren’t I getting services? Or is it the fact that I have expectations? So I think the first point is people will approach services where they have respect and they feel that they can be listened to and, you know, to be non-judgmental. So I often ask carers, why choose Meri Yaadain?
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And many of them actually say to us, because you’ll understand where we are coming from. And that understanding is about bringing together the fact that they may be living here in the UK, they may be born here, the fact that as Muslims we think about how does faith play a role in our day to day families. Do we bring faith and everyday living together, or can we pull the two aside? So thinking of a particular case, this chap and his family were looking after his mother and the situation is quite difficult you know, Mum’s dementia was kind of like unmanageable really at home.
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And the crux of their situation was that they ended up going to a Mufti, asking Mufti [scholar]for a fatwa [religious ruling] so that they can get some respite. And the family themselves, so, you know, the extended family felt that this household, this family where Mum was living, it was their duty to care for Mum, they should be managing it, we don’t need to have respite for Mum. So nobody’s willing to come in and support the family. So this family had to go to a Mufti, to get a fatwa, to get respite.
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And when they did try respite, those services were saying to them that actually, but your community doesn’t do this, you know, your mum wouldn’t fit here because you look after your own. And I think that creates lots of issues for us, which is both around do services understand where we come from, do they understand our cultural needs, do they really actually even understand the fact that we’re not all the same? And then other families that come to mind.
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So again, when we’re thinking about the difference that we can make is that for some people, we talk about faith and like I mentioned, an ayat in the Quran, the verse that says no soul is burdened with more than it can carry. So when we have carers, they’ll come to us almost at their wit’s end, I don’t know who to go to. I have Twitter messages, sometimes really late at night, they’ll say, I don’t know who to turn to. And because I tend to work late quite often, if I see a message, I’ll respond. And that is about trying to say to that carer, look, inshallah [God willing] things will be fine.
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You know, Allah is watching, Allah knows what you’re trying to do, your intention is good, you know. So we try and give some, I mean I’m no scholar in any way, shape or form, but to try and give that example that no soul is burdened with more than you can carry. So therefore, the issues that you have, we can work through those. It might mean that, you know, you need to ring your GP in the morning. It might mean that actually you ring social services and you ask for an assessment. It might mean that we talk to them about Alzheimer’s Society, we talk to them about carers resource and that they should be supporting the carer to get an assessment.
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Often I think the difficulty is people don’t know what services are available. If they don’t know what services are there and we kind of like, to use the expression, clutch at straws that anybody that we think that we can turn to can give us some help and support. So one particular case that comes to mind is of a lady who came to me
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you know, hijab wearing lady, middle aged, and she says, can I have a conversation with you? I said, yes you can. So she says, my So it was about safeguarding, really. So she said, my brother is responsible to look after my mum. He takes no interest. He manages all her finances. And so he says it’s his duty to care, but actually he doesn’t care. I go to care for my mum, even when he is away, you know, he still has access to mum. But as a Muslim family, they’re a Pakistani heritage family, as a Muslim family we don’t want to create hassle for the family.
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So I talked to her about safeguarding and I said, if that’s something you see, you hear, you need to raise this. You know, you’re the one that’s got the evidence. Nobody’s going to come and knock on your door and make an accusation without having somebody to say, you know, you’re witness to that. And she felt that it’s not her responsibility or it’s not her role because it will create havoc in the family. So my conversation with her then was, as a Muslim, if you see an injustice, is that right? You know, if somebody is managing somebody’s money without their permission, is that right?
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If somebody is not getting the care that they should have, that’s their right to be treated well. Is that right? So. So I think it’s sometimes using faith to support people that things will be okay. And sometimes it’s about using faith with Muslim communites to say, well, if the Quran recognises dementia, then why are you worried about stigma? Why are you worried about families? Why are you worried about what people will think? And of course, we also have I’m sorry, it gets longer and longer, is that if we think about our first generation that came to this country and helped set up masjids [mosques].
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So when you go into the mosque in the congregation, the elderly people sit at the front often. Along comes dementia. What support do they have? You know, who supports them? Is the imam confident enough to say to the congregation, actually it’s okay, he’s got dementia, you know, his behaviour might be a bit strange because of dementia. Does the congregation understand? So practice wise, we tend to say people Actually if you go to a masjid to take them, because that’s the norm that they’ll have you know, that’s part and parcel of what they’re used to. But if the congregation or the mosque doesn’t understand that this person has dementia, well, actually in a way that individual or that family is ostracised.
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And that stigma for the carers is that, well actually I can’t take my dad back to the masjid or it could be a community group. So if that starts to happen, where does that care to go? Where do they take that person affected by dementia?

In this video, Akhlak shares case studies of Muslim experiences of dementia.

Firstly, Akhlak explains why people approach Meri Yaadain for support. He tells us that shared lived experiences of ethnicity, culture and religion are important, and that people appreciate services that are respectful and non-judgmental.

Akhlak then presents a case study of a family he had supported. There was an expectation from the extended family that the family were solely responsible for providing care. The family approached a mufti (Islamic scholar) to ask for an Islamically-informed opinion, known as a fatwa, on whether they could receive respite care. When the family did find a respite service, they were told by the service that the care provided wouldn’t be appropriate because their mother “wouldn’t fit in”.

Carers who approach Meri Yaadain are often “at their wit’s end”. Akhlak says that he is not an (Islamic) scholar, but he does try to reassure carers from a religious perspective and advises them to seek support by accessing mainstream services by, for example, contacting their GP, Alzheimer’s Society or Carers’ Resource (links below).

Akhlak provides another case study of a daughter who was concerned about her brother’s care of their mother, she was concerned about interfering when it wasn’t her place. Akhlak used Islamic reasoning to encourage the daughter to be more involved in her care, telling her that as a Muslim she was responsible to speak out against an injustice.

Akhlak suggests that Muslim communities and mosques need to be better informed about dementia so that those living with dementia, and their carers, can be supported by their faith community.

Signposting

Visit the Alzheimer’s Society website for support and advice

Carers’ Resource You are entitled to a Carer’s Assessment if you look after a relative, friend or disabled child who needs your support to live at home.

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