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Mental health support needs of Muslim dementia carers

Akhlak describes the mental health support needs of those caring for their elderly relatives who live with dementia.
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So about carers, couples, when I’ve spoken to them that have said, well, we care for my mother or mother-in-law, depending which one says it, as a couple, because today we care for her, tomorrow our kids will care for us. So they bring their faith element into that, that actually I’m doing a good deed now, so there’s a good return for me when I’m older, when I have a need or the fact that when I die, then I’ve got a reward. So, you know, I’m a good son because I’ll be looking after my parent. And we try to say to them, yeah that’s great, but actually, what are you doing to help yourself?
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What are you doing to get some help and some resources, some services that help you to be a better carer? So a better, so to me, a Muslim who is better informed or educated about care is a better carer than a Muslim
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who just feels that actually it’s my religious duty to care for my mum, 00:01:09.840 –> 00:01:12.200 but without knowing how best to care for my mum, you know,
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how do I feed her, how do I know socially engage with her, what kind of activities can I do? So for us to say to a Muslim family, for example, you know, so we say give grandma some tasks to do in the house to keep her busy and engaged. They say no actually the way we respect the elders, is to say you sit there, you know, don’t to do anything. So actually we, we kind of disable them from any activity, any engagement, so we deskill people. But if you were to say that to a generation above me, probably some people of my generation as well, they’ll say no no we can’t do that, that’s disrespectful.
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And yet what we’re trying to say that, you know, if they use their hands, eyes, brain function, that kind of coordination will keep them going for longer. So we may not do crosswords but we might be able to jigsaws, or look old pictures or, you know, get a tablet out and look at, from a Muslim perspective, the journey of Hajj. So for them to be able to reminisce about, oh, I went there, oh, I remember seeing this or actually that’s the Prophet’s mosque [peace and blessings upon him], you know, that’s the Kaaba. So we can always adapt the conversations so it just takes somebody to think outside the box a little bit.
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Asma: So that sense of obligation to care and duty is very much religiously informed isn’t it? It’s related to reward and punishment? And yeah, can you say a bit more about that? Yeah, I think the Muslim community in particular, but I think across South Asia, I think our culture is fairly similar about the way we might respect our elders or it’s our duty to care for our elders. But from a Muslim perspective, you know, Hadith is very strong. I was reading something that says, you know, that you can go to Hajj, for example, and do all the things that you need to do but there’s no guarantee that your Hajj is accepted.
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But Hadith tells you, so the Prophet [peace and blessings upon him] tells you that you go happy with a smile on your face, and you go see your parents and you’re happy to see your parents that, you know, you’re guaranteed the reward of a Hajj or an Umrah. So I think for us, Islam is built in into our culture as Muslims, that we care for our parents because we want to, choose to, and not necessarily that we’re obliged to, have to. But I think the way things have changed is that our housing structure is such that we don’t necessarily live very close. We’re not an extended family, you know, maybe overcrowding the family.
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It might be that kids have got good education, their jobs are elsewhere. You know, the daughter-in-law of the family has got to, you know, make her husband’s lunch, get her kids to school, get home, feed mother-in-law or father-in-law or whatever it might be, and then lunchtime and whatever. So where does she fit that time in to provide that care? So I think for me, reward and punishment is something that comes partly because of our mental health issues, I would say. And that is that if I feel good in myself and, you know, Mum’s looking well, or Dad, whoever she’s looking after, then actually it’s rewarding. There’s a sense of achievement, duty, reward, God’s happy, I’m happy, she’s happy.
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But if that care becomes difficult. So as dementia progresses and those behaviours become much more challenging, frustration kicks in. You’re not able to cope, you can’t manage. What does that individual do? So then they might turn to to saying things like that you know, why is God punishing me to have to look after her and I can’t manage these behaviours. And yet we might not know of the services that exist. We might have somebody else that says, Actually, I’ve just got to bear this, you know, hassle and difficulty and not think about getting the services, because I think, well, actually, you know, God’s chosen for me to, you know, live through this and experience this.
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We’re trying to say to people actually, your mental health is really important. Your mental wellbeing will ensure that if you’re comfortable, you’re happy, you’re managing, then you’re able to manage the, you know, the conditions and the symptoms that you’re trying to cope with.

In this video, Akhlak describes the mental health support needs of those caring for their elderly relatives who live with dementia. Muslim carers need to be better-informed about dementia care.

Culturally, Muslims do not expect the elderly, particularly those with mental and physical health problems, to participate in daily household tasks – carrying out these tasks for them is seen as a sign of respect. However, carrying out these routine tasks can be a helpful form of physical and mental activity for people living with dementia.

Hadith relating to the care of parents are “very strong”. Caring for those with dementia can be positive for the mental and spiritual health of carers, it can give them a sense of achievement and make them feel like they are fulfilling their religious and family obligations. However, as dementia progresses, and behaviours become more challenging, caring responsibilities can be seen as a punishment from God.

Akhlak tells us that Muslim families in Britian, and in other minority contexts, do not necessarily live as extended families in the same household – this can make traditional expectations around the care of elderly parents more challenging to achieve.

In his work at Meri Yaadain CiC, Akhlak encourages carers to be mindful of their own mental health, and to seek support when needed. He advises them that by taking care of their own mental health, they will be better able to provide care for the person who is living with dementia. This may mean accessing external support services.

Signposting

Caregiver experience: A Fragmented Pathway: Experiences of the South Asian Community and the Dementia Care Pathway: A Care Giver’s Journey. Shahid Mohammed 2017

Dementia Dekh Bhaal Project by Together In Dementia Everday (tide)

Over to you

In this video, Akhlak mentions that activities recommended for people living with dementia such as crosswords, may not be culturally relevant for Muslims.

Using the video and your knowledge from other areas of this course (and perhaps more widely), can you suggest a culturally appropriate activity for Muslim people who are living with dementia?

Share your suggestions below.

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Understanding Muslim Mental Health

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