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.
You can follow me on Twitter: @bethyb1886
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