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Improving support for Muslims with dementia and their carers

Does Akhlak feels comfortable and confident about signposting people living with dementia and their carers to mainstream support providers
Asma: It sounds like Mere Yaadain it’s almost like a point, you know, people come to you and they might not understand or be willing to access those other services that you refer on to, but you act as almost a gateway, a way of explaining the need and, and the availability of certain services for people with dementia and those who provide care as well. Are you comfortable when signposting onto these mainstream services, these national charities or the statutory services? Do you feel confident that they will be able to understand and support the people that you signpost on to them appropriately? I think I’m kind of smiling before I answer this question about, you know, how comfortable am I about those referrals.
I think there’s lots of gatekeeping and there’s lots of box ticking. Services don’t always understand what they need to do. And I think, you know, the more I think about this, the more I kind of talk about giving people the license to be able to say, I don’t know. So we, for example, have you know, a British-born articulate, you know, professional working chap who is a carer for his father. He came to us at Meri Yaadain. I asked him, why come to us and not, you know, not statutory services. And he said because they won’t understand our situation. So I asked him to ring the local council.
He rang the local council who told him to go to Age UK and he said, I’m baffled, I’m really confused that I’m wanting you to come and do an assessment. about my dad’s care needs, his dad has dementia, and you’re telling me to go to Age UK. And they said, well, actually you have to go to Age UK And they’ll tell you what services are available. So he then rang me back and it was a Pakistani Muslim heritage family. And I said, No, you need to pick up the phone again and go back to them and say no actually, you need to make sure you do an assessment.
And I think the strength for me is that I feel I’ve been in the system long enough to try and work out what’s happening. And, you know, the kind of organisations that fob you off and the kind of organizations that are really helpful. Sometimes out of ignorance people don’t know what to say. So they might say, well, I’m sure there’ll be a day centre or a community group you can go to. But where are they if they’re not commissioned, you know? So, you know, I can say at the moment Meri Yaadain is not a commissioned service, but we have social workers who refer to us, but then that referral is on our terms.
I’m not prepared for them to be ringing me up and say, And what have you done about this? Actually, we then switch our focus to say, how do we support the carer, but also how do we support the person affected by dementia? So we might say to them, you need to ring that organisation to get a carer’s assessment and you should go back to social care and say, well actually if you can’t provide that service for me, they need to think about direct payments. But if you think about from a Muslim perspective, is that we should be able to then think about what’s appropriate for us.
So if somebody says, you know, people might be living in, I don’t know any city in the country, but if, if, if you think of a city where perhaps there’s not a lot of services for like minority communities, you might say, well, we haven’t got anything. But there is direct payments that the social worker could work through to support that family that might find somebody in the community that can provide that service. But if you don’t know to ask and they choose not to tell you, well, who’s the gatekeeper? So I think the thing here is that services can do some fantastic work, but they can also become gatekeepers.
And as Muslims, I feel that we shouldn’t, you know, we shouldn’t disregard being able to try and access whatever is available to us. Sometimes things might be free, sometimes it might be that we pay for them. Sometimes it’s, you know, information that we pick off the Internet. Sometimes it might be that somebody can post you something, you know, things like counselling, for example. You know, So how do we build all that in? So Meri Yaadain does quite a lot of work. And we’ve got so much to do and we’ve been running since 2006.
And the other aspect perhaps I should include in that is that we take a holistic approach in that my own lived experience of work in public sector, I’ve always done volunteer work in the community sector, I’m about to finish my Ph.D. You know how I bring all these aspects together and to say, well, actually that’s not acceptable and that’s not doable. So being able to provide that challenge, you know, whether it’s Alzheimer’s UK or Alzheimer’s Scotland, or whether it’s a, you know, a local council to have the conversation to say, well, actually, what are you doing?
And if it means having things like freedom of information to say, well, where’s the equity or the equality in terms of what you should be providing? So to try and hold people to account, hopefully should then help organisations. But equally, I think what I should say is that there’s a duty on like our masjids, our mosques, you know, lots of cities of have an equivalent of a council of mosques. What are we doing, what are we doing as communities to make sure that our institutions can also support our families?
And if it means that we’ve got to think about setting up services or how we support carers, how we support people with dementia, then we don’t need to wait for somebody else to do that. We should, we have a responsibility to help ourselves.
Asma: So my final question for you would be what are your recommendations for best practice when working with Muslims who are experiencing mental health problems? So I think in terms of if we think of recommendations, how things can be improved, I think even if we said, you know, of three different types of people and one recommendation each would be that if you are a Muslim carer, so you know, you’re looking after somebody with dementia, then to get over this sense of stigma and judgment by communities for you to be, you know, a good carer, a good Muslim, is that get the services that can help you to care for your relative in the best way that you can.
That might mean, you know, getting information, it might be, you know, accessing services, it might be, you know, talking to organisations like Meri Yaadain and saying where do I go, who do I talk to? And then the, the second aspect is for organisations. So if you are providing services then come out of your box, so when people talk about how to reach, nobody’s hard to reach. If anything, I think it’s organisations. So to give people the permission or the license to say, actually, I don’t know. I don’t know what they need, I don’t know how they need. So let’s have conversations. How can we involve them? How can we, you know, adapt our services?
So let’s make services more appropriate and better. And the third aspect is that if you are feeling that you’re affected by dementia, people tend to say I forget, I forget. We often say that if you’re forgetting it might not be dementia. If other people are telling you that you’re forgetful, then maybe. And that’s don’t wait until crisis, go and have a chat with your GP. And you know, as you get older, you’re more likely to get dementia, but doesn’t mean to say that with age you are going to get dementia.
So if you are worried, have a conversation with the GP ask for an assessment and we talk about living well with dementia and managing and coping well with dementia, that can only happen if all three aspects come together.

In this video, Akhlak responds to a question that Asma puts to him about whether he feels comfortable and confident about signposting people living with dementia and their carers to mainstream support providers (national charities or statutory services).

Akhlak tells us that services should be knowledgeable about the structures of support available around dementia, and better informed about their statutory obligations. They should not signpost to other services without fully understanding what, and importantly whether, support is available.

Muslims in Britian need to be better informed about sources of support available to them, for example, direct payments to facilitate support that isn’t provided by mainstream services. You will find links to further information on direct payments below.

Muslim communities and institutions also have a part to play. Muslim support organisations should be well-informed on support structures so that they can challenge inequalities in mainstream service provision. Institutions, such as mosques, have a duty to ensure that religious communities are supporting families living with dementia.

Akhlak finishes by making some recommendations.

  • Muslim carers should seek support and overcome any associated stigma.
  • Organisations who provide support for dementia and dementia carers should not presume that Muslim communities are ‘hard to reach’ and find ways to collaborate with them, thinking creatively when needed.
  • Muslims experiencing symptoms of dementia should seek support and assessment sooner rather than later, perhaps via their GP.


Citizens Advice. Direct payments – what are they?

Carers UK. Direct payments

GOV.UK. Applying for direct payments

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