Why culture matters in dementia care

Last month saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. For this blog post, however, I want to think about the BAME population, and with Brexit on the horizon, anyone born outside of the UK who is now ageing in the UK and living with dementia.

When I contributed to the Jessica Kingsley book ‘Culture, Dementia and Ethnicity’ I wrote about my experiences of my dad’s relationship with his Filipino key worker. Many others from BAME backgrounds wrote about their own experiences, some hugely challenging due to cultural differences, the expectations and assumptions that are made by different communities, and the sheer dearth of culturally-appropriate services.

In my dad’s 9 years in care homes, I only ever met one lady who was from a BAME background. Granted dad was living in the home counties rather than an inner city, but with a significant Asian population in the local town, it struck me as strange that more people with Indian or Pakistani heritage didn’t live there too, particularly as the staff team was very multicultural.

Of course when I began the work I do now, I heard all those stereotyped viewpoints that Asian families ‘look after their own’ - indeed, just nine days after I began my D4Dementia blog, I read a blog published on The Age Page by guest blogger Manjit Nijjar, recalling her experiences as a carer to her father. The blog completely drew me in as Manjit described the struggles she faced, and the prevalence of the notion that Asian families ‘look after their own’.

Keeping health problems ‘behind closed doors’ and ‘looking after your own’ are viewpoints that make dangerous assumptions that a family is able to cope – Manjit wasn’t coping, and in the 5+ years since her blog was published, I’m sure many other carers from BAME backgrounds have had similar experiences. Diagnosis rates within BAME communities don’t reflect the likely prevalence in the population, suggesting that many families either don’t want to seek help when they notice changes in a loved one’s health, or are believing stigmatised viewpoints about dementia ‘madness’ which leave them too ashamed to seek help.

Even with a large extended family, it isn’t a given that family carers will have the skills and abilities to care for a loved one with dementia, and if they aren’t accessing mainstream services, they may never receive any professional support. Package all of that up together and you are likely to find significant numbers of isolated BAME families struggling to cope against pressure from their community to just soldier on, despite limited or non-existent knowledge of dementia.

Then, of course, there are the challenges faced by the services people from BAME backgrounds do access. From the time I spent with the Asian lady in my dad’s care home, it was clear staff had little understanding of how to support her. She’d reverted to her childhood language that few people (including her family) understood, was disorientated in an unfamiliar, very British-style environment, and attitudes to supporting her cultural needs around food (Halal) were at times shocking.

We know that dementia care for those born in this country has many challenges. For those born overseas, however, whose early memories and emotions are attached to a different land, living in another culture greatly reduces the chances of living well unless services are very mindful of the needs of those individuals and their families, most notably:

Language: As with the Asian lady in my dad’s care home, many people from BAME backgrounds who develop dementia may revert to using a language they learnt in their childhood. As with all language challenges, however, it may not be a simple case of using different words - the words, letters and sounds can become muddled, no matter what the language is that the person is trying to communicate in. Looking beyond verbal communication to aspects like body language and gestures may be more helpful than trying to decipher words and phrases.

Environment: One of the most powerful recent testimonies I’ve heard regarding supporting a person from a BAME background who is living with dementia came on a BBC Radio 5 Live phone-in programme last month (sadly no longer available on iPlayer), where a gentleman described supporting his father during his years with dementia, and a particularly poignant trip to Pakistan to enable his father to see family and friends he’d grown up with and visit places that were important to him. He described his father’s joy, and listening to his story it was clear that for those few short weeks his father truly felt he’d returned home - he was living well.

The son went on to describe the great comfort those memories give him now his father has died, and although I’m not suggesting families or care providers can all facilitate holidays to homelands for every BAME person who is living with dementia, there is some really important learning here about recreating familiar environments (including colours and fabrics, and sensory elements like smells and sounds) maintaining connections with family members and friends (through technology like Skype), and really investing time and effort in life story work.

Customs: These can be anything, from religious practices to the way the person structures their day. Some elements, like prayer time, may be very important, and there may be sacred elements to the person’s life, and their end-of-life wishes, that need to be understood and carefully adhered to.

Preferences: Again, the spectrum here is huge, anything from the way the person dresses to the food they eat, the occupations and activities they wish to take part in, and potentially who they want to spend their time with. Whilst we may actively encourage multicultural living, it isn’t something everyone feels comfortable with, particularly when single men and women are mixing together in communal areas.

When thinking about both customs and preferences, it’s important to remember that for every custom or preference that is vital to one individual, another person living with dementia may wish to discard some or all of these through their own choice. Being non-judgmental and mindful of choice and control is vital in supporting the person effectively. Just because a person has dementia it doesn’t make their choices, whatever they may be, any less relevant.

If all health and care services can become more culturally aware, and in turn reap the benefits of that (both for the BAME individuals they support and for everyone else though learning about and celebrating other cultures) it will represent a really important step in improving the lives of people from BAME backgrounds who are living with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...

You can follow me on Twitter: @bethyb1886

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