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...

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Keep the faith

One of the first things to become bypassed in someone’s life as their dementia progresses and they become more reliant on social care can be their faith, beliefs or spirituality. This is often as a result of professionals caring for them feeling very uncomfortable about anything religious or spiritual and dismissing it, actions that echo the words of a famous adviser to a former UK Prime Minister who once said, “We don’t do God”.

It is, however, vital to recognise that many people actively want to ‘do God’ or indeed follow any other religion or belief structure, and it is absolutely their right to do so. This is particularly true when someone’s health deteriorates, or they have been diagnosed with a terminal illness. In those times many people draw strength from their faith, and no one should deny them that or say that they cannot, least of all those who are charged with their care.

Whilst you can exercise your right to follow your chosen path of belief or spirituality in almost every situation life can throw at you, living with dementia has a tendency to gradually remove that autonomy. If you actively practice a faith, you will then potentially need support to fulfil that calling in your life, and understanding from those around you who may come from different backgrounds and cultures.

I have seen both the positive and negative approaches to supporting someone who is living with dementia within the context of their religious beliefs. The positives were largely in relation to my father, who received regular pastoral support, particularly during the last few years of his life and during his end-of-life. This was largely due to good fortune, however, as another relative in his care home happened to be a practicing clergyman who visited his mother daily, and was happy to provide pastoral support in his professional capacity to anyone else in the home. There were also monthly services that residents could attend, and the hymn singing was always a particular favourite with dad.

Sadly a Muslim lady had a far more negative experience when she moved into the home. Despite requiring a strict Halal diet, some carers were caught feeding this lady non-Halal meat. When these carers were questioned about the food, they said that this lady’s dementia was so severe she wouldn’t know what she was being given, and had been willing to eat it so it made no difference. Moreover, with the exception of one carer who was from the same cultural background as this lady, no others were able to correctly assist her to dress in a manner befitting her cultural and religious heritage.

Clearly the experiences this lady had did not represent good care, but they do perhaps give an insight into how easy it is considered to be to bypass that vital role of supporting someone to maintain their religious and cultural beliefs. Often a person with dementia cannot fight back against this, demand better or indeed remove themselves from what has to be considered a form of abuse, hence why we need a far greater emphasis on these elements of care.

Advocacy can help, as I discussed here, but fundamentally we need to ensure that care in the UK exists within the context of being person-centred, and doesn’t take the ‘easy’ route of ignoring someone’s faith or beliefs. Exploring the whole person means looking not just at the physical things like possessions and tangible choices that are often much easier to acknowledge, but also accounting for the things that don’t exist in a physical form and represent the spiritual.

For anyone who has a faith or belief structure, that spiritual side of their life is often far more important than the physical things that they are surrounded with. Yes a cross, beads, items of clothing or symbols associated with particular customs or festivals can bring incredible comfort, familiarity, joy and peace, and hymns, songs, chants and readings can provide fantastic therapy, but it will often be about the unspoken or otherwise untouchable things that their faith brings them that lie at the heart of their life.

Care plans include the opportunity to describe someone’s religion, but as we all know these are documents that are largely completed purely for regulatory purposes. To be blunt, questions about my dad’s religious beliefs were directly linked to the questions about the sort of funeral he would want when the time came. For the most part, the pastoral care that my dad had was due to the arrangements we made as a family, which begs the question, what happens to everyone else?

Routinely ignoring the spiritual needs of people with dementia is never going to represent good care. Where someone has a faith that they have previously actively pursued and wish to continue with, they must be supported to do that whether they are living in their own home and relying on regular visits from a faith leader or support to attend an act of worship, or are living in a care home, whose remit as a caring community should always include opportunities for regular worship and one-to-one pastoral care. Without these structures, there is a danger that the only spiritual support someone with dementia experiences will come from a hospital chaplain at a point of severe crisis, if indeed they have any support at all.

Engaging faith leaders in increasing their knowledge and understanding of dementia is an important step to ensuring that everyone who needs their support has it, but without social care embracing this key aspect of many people’s lives appropriate pastoral care for all will still be a long way off. Care is not about our own personal views; it’s about walking into someone else’s world and embracing everything about them, be it seen or unseen, and ensuring that all who want to have the opportunity to keep their faith alive can do so.

Until next time...

You can follow me on Twitter: @bethyb1886

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Christmases past and present

Christmas with dad

I think for most people Christmas is about the many traditions we each have for celebrating the festive season. For the last nine years our family traditions were modified to fit in with my dad’s life in care – this year will be our first Christmas without him, and to be perfectly honest I am really not quite sure what to expect.

Many people assume that visiting a loved one in a care home is hardly the ideal way to spend Christmas. I would admit it does take some adapting to – modifying your established routine can be a bit of an organisational and diplomatic challenge, eating two Christmas lunches (a small one with dad and then our main one with the wider family later in the day) is not ideal for the waistline, and you are in danger of spending the entire day rushing around to such an extent that you feel Christmas has totally passed you by, but I would not have missed those precious moments with dad for anything.

Our last Christmas with him came amidst the backdrop of huge problems within his nursing home (that I wrote about here), and dad himself was not at his best as he battled yet another chest infection. He struggled to eat much of his Christmas lunch and was entirely disinterested in his presents – in contrast to previous years when he demolished extensive 3-course meals and complained that he did not like his presents!

Our approach to Christmas for dad was always to make it as happy and festive as possible. We would decorate his room with traditional items that he was familiar with, fix his cards to the side of the wardrobe so that they did not mysteriously disappear, buy and wrap lots of presents (new clothes - since clothing wears out so quickly in care homes - and CD’s of much loved music were all staple presents), and arrive on Christmas morning, me resplendent in my Santa hat, with the camera and lots of festive cheer.

Our challenges were minimal, however, in comparison to the difficulties many family carers face when they are looking after a loved one with dementia at home over Christmas. For many carers Christmas is a time of isolation, and while their neighbours celebrate around them, 25th December will be just another day of relentless struggle and ultimately exhaustion. With so many services shut down for the holiday, Christmas can also be a nightmare time for getting help should your loved one become ill, or indeed be very frail and nearing the end of their life.

Even for carers who are more supported, many of the Christmas traditions can present challenges. For example some decorations can be dangerous if the person with dementia does not understand what they are, certain colours or flashing lights can cause upset, an excessively decorated or crowded dining table could lead to confusion, and even your menu may need to be adapted to take into account a loved one’s changing eating habits.

For most family carers, however, I think one of the greatest concerns can come from how visiting friends or relatives may react to your loved one’s dementia. Be mindful that they may need guidance to understand and support the person you are caring for appropriately. For example, it is not uncommon for people with dementia to forget how to open cards or presents – we coped with this by gently helping dad, rather than just waiting, or demanding, that he manage alone.

Of course whilst so many of us are focused on Christmas, is it also important to remember those people with dementia, particularly in care homes, for whom Christmas is not part of their tradition or religious beliefs. Their wishes can often be forgotten amidst the celebrations, and they can become even more confused or disorientated by Christmas paraphernalia that is alien to them.

Looking back now over those many Christmas with my dad during his years with dementia, I would advise anyone in the position that we were to make the most of those special times together. They do not last forever, and Christmas is overwhelmingly a time to embrace our families, particularly the most vulnerable amongst us. Sadly this year I will be putting my dad’s Christmas card on his grave, but memories of Christmases past (and particularly this one that I contributed to the Prime Minister’s Christmas dementia campaign ‘Xmas to Remember’) will warm my heart and hopefully ease the pain.

As this will be my last blog post of 2012, I will sign off by thanking you all for your support since I launched D4Dementia back in May. I am very proud of the way the blog has grown, the feedback from people of all backgrounds to say how much they have enjoyed reading it, and the recognition it received by being shortlisted for a Roses Media Award. My next blog post will be in January 2013, so until then keep warm, well and happy.

Merry Christmas, and may 2013 be the best year yet for improving the lives of people living with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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Keeping it relevant

Having enjoyed our summer, or perhaps endured it as many UK readers may prefer to recall our latest disappointing attempt at warm, sunny weather, autumn is now well and truly upon us, and with it many sights and sensations that pose both opportunities but also problems for people with dementia.

Aside from the seasonal onslaught of coughs and colds, which any carer will know can not only create far more confusion in a person with dementia but can also be difficult to treat and may lead to secondary complications, the changes in the weather, the clocks going back in the UK (which means we now have lighter mornings but our evenings begin in late afternoon) and the arrival of some particularly noisy and colourful celebrations all create challenges in dementia care.

On the plus side, crisp mornings and carpets of leaves are wonderfully nostalgic for many of us, and for my father autumn always represented a magical season. The autumn of 2011 has particularly fond memories for us as a family – we had our last outing with dad before his health declined towards the latter part of 2011, and we were fortunate to have the most perfect weather for it. A cold, dry, sunny morning that saw us wrap up against the chill (dad looked a bit like the Michelin man with all his layers on) and venture out of his nursing home to the local woods.

There we pushed dad around in his wheelchair, admiring the trees, smelling the clean, fresh air and listening to the leaves crushing under the wheels and our feet, before sitting outside and having hot tea and treats from the café. It was a very special and happy day that gave us some lovely pictures to cherish and memories that will last forever - proof that autumn is a great time of year to get out and about with your loved ones and enjoy the simple pleasures that life has to offer.

October and November also bring with them Halloween and in the UK, Guy Fawkes night, an annual excuse to light bonfires and let off fireworks. Many care homes mark these events, but there are important issues to consider when bringing scary faces, ghosts and ghouls, explosions and flashing lights into the lives of people who may have a very limited understanding of what is going on around them.

Luckily my father always took everything in his stride, such was his nature, but there were some residents who were terrified by fireworks and would cry uncontrollably, whilst others found the flashing lights very disturbing. In a communal setting, balancing the desire to provide fun for some with the need not to distress or frighten others is difficult, but it is a vital part of respecting and understanding each individual. Halloween, for example, is a phenomena that many older people in the UK have little affection for or interest in, which often contrasts starkly with the experiences of the younger people looking after them who may have grown up trick-or-treating, making masks, costumes and having parties to mark 31 October.

During my time singing in care homes in 2011 (which you can read more about here), I was booked to do Halloween shows, Bonfire night celebrations and Remembrance Day events. Halloween involved a room full of residents most of whom had hats, masks or other costumes on, and all of whom completely lacked engagement with the staff who were dressed in full Halloween regalia – indeed even the Halloween inspired food did not interest the residents, with many of them struggling to understand what the buffet items actually were!

The bonfire gig had a better atmosphere, but some residents were upset by the fireworks whilst others were worried that the bonfire could engulf the building. By far the most successful events were those held to mark Remembrance Day. The residents loved being dressed up, enjoyed the decorations in the home, interacted very well with the staff (who were all in costumes), joined in the singing and flag waving and some even danced.

There is a legitimate argument that says you need to be careful with wartime reminiscence since it can bring back very painful memories of suffering and loss, but my experience was that it brought a very positive blitz-like spirit to the homes I visited, with everyone entertaining each other, smiling, laughing, reminiscing and for people with particularly advanced dementia, interacting in a way that they never normally did.

For me the lesson here is about keeping celebrations relevant. Not celebrating what we as people in our 20’s, 30’s, 40’s or 50’s may be interested in, but what people in their 60’s, 70’s, 80’s, 90’s and beyond remember and identify with in a positive way. Of course what for one person is a cause for celebration is, for another, something to dread (a bit like Christmas, which I will write about nearer the time). Equally there are also many cultural and religious reasons why people may not wish to celebrate certain festivals, but they may be unable to express that due to their dementia, or express it in a way that does not make the source of their discomfort clear.

However, it is often possible to think your way around these problems. For example, I recently read an interesting comment from an Activities Co-ordinator who said that instead of celebrating Halloween with her residents, she would be involving them in lots of harvest-related activities. Back when our parents and grandparents were young, harvest was a very important time in the calendar as they stored up the food that would see them through the winter (before the days of supermarkets!), so celebrating that is a great example of thinking about what older people with dementia would understand and feel motivated to engage with.

Sadly for those caring for people with dementia, this disease does not come with a rule book. One of the most important assets anyone caring for someone with dementia can have is common sense, which is often more likely to be found in the way we look after children or animals than it is when caring for people with dementia. So my advice when planning celebrations – be sensitive, be thoughtful, and most of all remember that people with dementia have very acute feelings and emotions. Our job is to enhance their quality of life, not diminish it.

Until next time...

You can follow me on Twitter: @bethyb1886

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