What if it was a ‘Big D’?

Sat on the plane headed home after a very positive (and a little information overload) dementia conference.  I’m thinking about the type of people that were there and what their respective interests might have been.  I’m reflecting on the fantastic work that was presented and showcased from work being done across Europe.  But I can’t help but wonder where ‘back home’, is with the concept of providing intercultural care for the diverse communities in the UK.

Now if I was to tell you that there is to be a seven to eight fold increase in cancer over the next 30 years or so, you would be shocked – and rightly so!  So why is it that when it comes to the BAME communities in the UK there is no outcry on the expected seven to eight fold increase in the dementia rates amongst the BAME communities?

At the end of the last century the Department of Health worked on the National Service Framework for Older People and one of the sections in there was mental health.  We have moved on from seeing dementia as a mental condition to one where there is a wider consensus that is it should be referred to as a physical condition. After all it affects cognition and daily functions. There is still an awful lot of work to do in raising the awareness amongst communities that have no word for dementia.  Not having a word for dementia has meant that educational endeavours have not always been successful without some prior work to create an awareness of the condition.

Raising awareness of dementia hasn’t been easy because those very communities can not see the condition as a physical state, rather still a mental affliction.  To some extent it is understandable that ‘they’ look at the cognitive impact on their relative instead of the physical impact or symptoms.  Minority ethnic communities will often have a different social construct because they will have brought with them the values, expectations and norms from their place of origin.  As such, when there is no word for dementia, coupled with the societal stigma attached to mental ill heath, it becomes difficult for family carers to tackle the social pressures restricting them from accessing information and support services.

Not only is there a problem in accessing appropriate information and culturally competent services, but where health practitioners ‘fob’ them off saying this comes with the normal ageing process, it exacerbates the difficulties and the barriers preventing assessment, a diagnose, information and support.  ‘But they look after their own!’ is what we often hear.  But do they? On what basis is this substantiated?  Well, what doesn’t help is when a health minister in the UK holds a view that we should be learning from the BAME communities because ‘they look after their own’.  This is something that I came across 18 years ago and have been trying to speak up against. Why? Well if we accept the concept, it tells us that we do not need to reach out to help make a difference to these communities.  Evidence suggests that there are a number of factors that influence the ability to look after our own – for ALL of us. And ALL of us are impacted by the difficult decisions on when, where and how we decide when we need to move the care for a member of the family to institutionalised care.

Whether minority ethnic or majority (yes we are all an ethnic – either from the minority communities or from the majority community), there are factors such as decrease in extended family homes, young chasing an education and jobs elsewhere, societal pressures to manage our own household matters rather than also take on matters relating to extended family members.  But more so than that I would ask – would you not want to look after your older mum or dad if you could? Is it easy to put them in longterm care or does it create stress and anxiety for you when you are compelled to have to make such a decision?  In the same way we all want the best for our elders.  But why then might it be difficult to have BAME family caregivers struggle to think of respite, sheltered housing schemes, residential care and ultimately nursing care for their older relatives?

Well again this isn’t as easy to answer as some might tell you.  Social constructs of health, of care, duty and expectation all contribute to social stresses and stigma challenging family caregivers.  Religious influence and obligations might add to the burden of caregiving – ‘I must care for my mum because my faith says I should look after my parents’.  Others see this as a test from God in that they are being tested for their deeds and attitude towards looking after their relatives. This can however be both positive or negative. Positive in the sense that some carers might see this as a ‘tool’ to help them cope with the caregiving; whilst others might feel burdened or trapped from being able to break away from this responsibility.

Another influencing factor is the actual or perceived prejudice – will they understand my diet, language, likes and dislikes in music or art?  What if I can’t explain the what and the why?  People are often worried that the ‘difference’ may be misunderstood or simply avoided.  You might relate to the fact that we tend to say our services are open for all to access and then wonder why ‘they’ are not using our services when we have no concept or awareness of cultural competency.  Having a service offering equality in access is not the same as a service offering equity to get to equality in access – and trust me you don’t need a PhD to access some training and awareness (though a new endeavour now offers this – hint hint!!).

So I come back to the point – if cancer was to increase seven or eight fold, would you be alarmed? If so, should we be alarmed that there is a projected increase of this magnitude for dementia in BAME communities in the next few decades?

Should we therefore not seek expertise from those with some qualification to make sure that we support individuals, families, carers? And if this doesn’t help sway the argument, surely it also costs the state less to support families and individuals, to live and to be care for at home for longer.

The sands of time stop for no (wo)man

Sat in Palma, Majorca, on holiday with my kids, it’s hard not to reflect on a couple of things that have brought together a number of factors over the last few days. Don’t get me wrong, it’s still dementia on my mind even though the point of the holiday was to get away from work and University – letting my own mind relax a little.

Anyway, catching up with my beautiful friend Julie in Palma and calling her an ‘immigrant’ in jest – lucky Julie gets to spent most of the year in Palma – reminded me of what it must have been like for mum and dad when they migrated to England.

Dad (may he be resting in peace) used to talk about the difficult days of migrant labour and the desire to create a better life for his family. The English didn’t want the jobs in the textile mills and so South Asians (and others) were invited to come and work to rescue the British economy. Britain not only became home for almost all of his adult life, but it also became his ultimate resting place… so it’s home!!

Trying to keep a connection with the other ‘home’ dad would go visit every so often and on most occassions take the family too. Now and again he’d be able to convince our gran to come and visit too -but she didn’t like the cold, grey and often wet weather of our Isles – choosing instead the dry heat, the monsoon and the humidity of Pakistan. “We’re made of the soil of Pakistan” she wold say.

Well that brings me to another issue – the independence of Pakistan and India from the over 200 years of colonial rule by the powers that be of the country of my birth and that of my children – England. We are indeed proud Brits, but this in our view should not prevent us from talking about the horrors that were inflicted on around 15 million Indo-Pak citizens.

I was lucky enough to share a morning celebrating Pakistan Independence Day in Bradford on the morning of 14th August with Pakistani elderly men and women  – marking 70 years of Pakistan. The evening was another highlight in the shape of a celebratory dinner – this time joined with my kids, again marking the Pakistan Idependence Day in Rochdale organised by my good friend Shahid – who also happens to be an ‘Expert by Experience’ when it comes to BME dementia and carers. Another surprise of the evening was to meet up with the Manchester based Consul General of Pakistan – the honourable Dr Zahoor Ahmed, who has worked tirelessly on community cohesion.

Getting back to the point I was trying to make – India and Pakistan celebrate the independence of their transition from British rule to that of self determination. But I wonder if the experiences of partition will ever truly remove the reality of 14 million displaced and 1 million murdered during those awful months around August 1947.

The sands of time as the title suggests stop for no one. Whether we leave our ‘home’ for a better life for our families and children or we seek the sun and sea for a better quality of life. It is never an easy transition, needing to get used to a new culture, a new language, perhaps sometimes being under the spotlight or even a microscope for the way you eat, dress or worship.

Our elders need to be supported through their dementia as do the carers that look after them. Having died and been buried in the beautiful county of Yorkshire – both of them –  I can’t help but think about gran’s dementia and dad’s difficulty in trying to connect gran’s dementia back to her life in Pakistan.

So the mixture of people, languages and history of Majorca -Roman, Muslim and Christian rule has left a mark of their time – did you know that the beautiful Cathedral here in Palma faces Makkah? I’m pleased Julie is enjoying Palma and often plays host to her friends from back home. Julie’s Spanish classes are paying dividends – the proof of the pudding is in her hubby Peter’s delight in saying he has a PA when he is out and about in Majorca.

Here’s to Julie and Peter – stay blessed beautiful people and thank you for making it a possibility for the kids and I to have an especially wonderful this beautiful historical city.

The mark of history on and of the UK has also been recorded -even if from an imperilist viewpoint. It’s just another phase that we too are currently going through and  learning how best to support those who chose to make the British Isles their home from home. History will judge us for how we continue to treat individuals and communities; but also for our part in being an equal and not superior to the other.

Until next time…