We are family – A Dementia Action Week blog

With over 200 blogs on D4Dementia now, some of them approaching 7 years old this month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, for Dementia Action Week (DAW2019) I want to highlight a previous DAW blog and tell you Hazel and Bill’s* story.

For DAW2017, I wrote a blog entitled ‘Five things I wish I’d known before my dad’s dementia’. In that blog I said:

"It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much."

Those words are as true today as they were two years ago, and for DAW2019 I want to share a particularly striking example of how dementia has changed one couple’s life, leaving them on the periphery of society.

---

A few weeks ago I had a chance encounter with a lady, Hazel, who had been diagnosed with dementia just over a year ago, and her husband Bill, in a cafe. We got chatting as they watched our 3-year-old playing and we ended up having a long conversation. 

Hazel and Bill told me they’d never had any children and were only children themselves, with no extended family. They said they went to the cafe once a month because it was somewhere they could ‘watch the world go by’. They have their groceries delivered, because supermarkets are too noisy and chaotic, and trips to their GP practice are daunting as it’s so big and impersonal with its electronic check-in system. 

Hazel and Bill live in a rural location, and said their main company comes from the birds who visit their garden and a neighbouring cat who also takes an interest in the birds! They said they’d never met the owners of the cat - new people had moved into their neighbourhood a few months ago but ‘kept themselves to themselves’.

Reading Hazel and Bill's story, it would be tempting to think that their circumstances are unique. After all, most people have some family and go out more than once a month. Except I don't believe Hazel and Bill's circumstances are unique. If you've never discovered Ageing Well Without Children I urge you to have a look. Their stats tell us that the number of people over 65 without adult children is currently in excess of 1.2 million, and is set to rise to 2 million by 2030. Moreover, in these days where you can order online and get just about every conceivable item delivered to your home, you don't need to go out. I certainly avoid the shops with our toddler!

For people like Hazel and Bill, being so isolated can have some undesirable consequences. It’s known that social interaction is a key component in reducing dementia risk, and if a person has already developed dementia, social interaction can help to improve their quality of life and wellbeing.

Then of course there is the impact on Hazel and Bill’s relationship. As Hazel built a lego castle with our daughter, Bill said to me quietly that he wonders how he will cope as Hazel’s dementia progresses. He says he’s keeping their heads above water for now, but feels lonely and worries about what the future might hold. 

Hazel and Bill left the cafe when more customers arrived and it became too noisy for Hazel. Bill said it was best to embark upon the drive home before Hazel became too restless, as she struggles with the movement in the car and it’s getting harder and harder to persuade Hazel to even get into the car now.

They both said that watching our daughter had been a joy, and they hoped to see us again. I made some suggestions of support mechanisms that Hazel and Bill might want to access, including the Admiral Nurse Dementia Helpline, the Dementia Engagement and Empowerment Project (DEEP), Dementia Carers Count and Together in Dementia Everyday (TIDE), but I’m not sure they will ever make those connections. Perhaps most tellingly of all though, when I asked Hazel and Bill if they had ever attended any local support groups, or accessed any dementia friendly services, Hazel replied and said: “We used to go out more, but we don’t fit in now I’ve got this” (and pointed to her head).

The sadness I felt at that last comment has stayed with me, driving my desire to improve the lives of people living with dementia. I hope it might have the same impact upon you too.

So, how do we reach out to people like Hazel and Bill? They rarely have contact with any services, so opportunities are few and far between. That busy GP surgery is one contact point, and their Memory Clinic appointment(s) would have been another. Then there is the cafe - the one place Hazel and Bill go to of their own free will. I asked the waitress who came to clear our table if it was a particular goal of theirs to be welcoming to people with dementia. She said no, adding with a smile: “Our customers are our family.”

As individuals we can all do our bit to make people with dementia feel included and welcome, no matter who we are or what our service is. We don’t have to do it in a formal way - every way helps! And I don’t believe that it requires any particularly special skills - offering a safe space, a friendly smile and a simple enquiry about how someone is, or asking if you can help.

We can all be people of action this and every week of the year, adopting that motto from the café – ‘We are family’. 

(*Names changed to protect identity)
Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Resolve to tackle loneliness

“It’ll be lonely this Christmas

Without you to hold

It'll be lonely this Christmas

Lonely and cold.”

So sang English glam rock band Mud (in the style of Elvis Presley) to top the UK singles chart in 1974, selling over 750,000 copies and reaching Christmas number one.

44 years later, and as this song joins the throngs of Christmas music on the airwaves for another year, I’ve found myself wondering if we might ever reduce the estimated 9 million+ people in the UK who are said to be ‘always or often lonely’ to closer to the number of copies this song sold back in 1974. If we could, that would mean 8,250,000 less lonely people.

The 9 million+ statistic came from research by The British Red Cross earlier this year. They described the figure as representing ‘epidemic levels of loneliness and social isolation’, and few could argue with that assessment. It’s a hugely negative reflection on our modern-day society, and ironically comes in an age where we’ve never had so much connectivity through technology and yet so many of us feel more isolated than ever before.

The reasons for loneliness in the UK are many and varied, with commentators sighting everything from social media use to poor work-life cultures. I personally feel that the English 'stiff upper lip' culture also plays a role - not wanting to admit you feel lonely or isolated, fear of being rejected if you do seek help or support or even just reach out to someone you know who may themselves be too caught up in life to respond to you in the way you hope they might, and feeling compelled to hold all of your feelings and worries within you.

Amongst those most vulnerable to isolation and loneliness are older people, those living with long-term health conditions, including dementia, and those who provide care and support for a loved one. The very nature of ageing means you lose friends and family as your peers pass away, and of course living with dementia can pose such significant challenges with social interaction that many people would rather avoid it, particularly if they haven't managed to connect with like-minded individuals through peer support (examples of peer-support groups for people with dementia include DEEP and DAI).

Indeed, such is the risk of isolation and loneliness for people with dementia that the Dementia Action Alliance 'Dementia Statements' (that I wrote about in August 2017) specifically say, "We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness." 

It’s also worth remembering that social isolation is thought to increase a person’s risk of developing dementia, hence why the importance of social interaction is highlighted as a potential preventative measure. With this in mind, in my training for care providers I talk to social care staff about the dangers of isolation and loneliness amongst the people they support and we discuss ways this can be combatted.

While staff who provide support to people in their own homes are often much more aware of the risks posed by isolation and loneliness, as many of their clients live alone, care home staff often haven’t considered that loneliness might be a significant factor in the lives of the people that they are supporting, simply because they assume that if a person is living in a communal environment they won’t be lonely. Yet quite the opposite is true - some of the loneliest people in the world are those in a room full of other people, and a bedroom can be a very isolating place if you don’t feel able, or cannot through physical or mental health issues, come out of that room to socialise with your peers.

With the festive season seen as a particularly isolating time of year, many charities and organisation are again voicing their concerns about loneliness. Last week Age UK published analysis that said 1.7 million older people in England can go for a month without meeting up with a friend, and that 300,000 over 65s have not had a conversation with family or friends over the same period. They also said that half a million older people across the UK are likely to feel lonely this Christmas, with more than 230,000 older people expected to be on their own for at least one day over the Christmas period (from Christmas Eve to New Year’s Day).

After Christmas, I predict that there will be more reports of helplines receiving record numbers of calls over the festive period. Last Christmas, The Silver Line – the only free, 24-hour, national helpline for lonely and isolated older people open all year round – reported that Christmas 2017 was their busiest ever, with over 14000 calls made to their helpline, around 1000 more than during Christmas 2016. Their greatest spike in calls was on New Year’s Day, with 1773 callers – up 14% on January 1st 2017. 

So how is loneliness being tackled? The response ranges from the Campaign to End Loneliness to the legacy work in memory of Jo Cox MP, alongside the UK government appointing the world’s first Minister for Loneliness (Tracey Crouch, who later resigned her position over an unrelated matter), and the publication of England’s first Loneliness Strategy.

But despite all of this, loneliness remains a huge issue. In the run up to Christmas 2015, I wrote for the UK Huffington Post about a campaign Friends of the Elderly were running about loneliness, and now here we are in 2018 and I have even more campaigns I could write about, which suggests we aren’t really making significant progress.

Why? Because to tackle loneliness we all have to do our bit. High profile initiatives, whilst very welcome and often packing a significant punch, can’t on their own make any individual feel less lonely, or persuade each of us to do something to help combat loneliness amongst our family members, friends, neighbours and acquaintances.

That ‘something’ doesn't have to be a huge action, it can be really small. At this time of year, just sending a Christmas card to someone you know says “I’m thinking of you.” If that person is older, not local to you, not on email and you don’t have an up-to-date phone number for them, a card is a simple way to reach out. Or for people who don’t want to write Christmas cards, donate to one of the charities that help to support people who are at risk of isolation and loneliness.

Of course there is no simple fix to the UK’s loneliness problem - a cuppa with your neighbour or having a festive clear-out and donating your unwanted items to a charity that supports people who are isolated and lonely won’t banish loneliness for every isolated person. But as you think of your New Year’s resolutions, bear in mind that a resolution to do your bit to tackle the UK’s loneliness epidemic is something that is achievable for all of us and might just make someone’s day (as well as yours).

Thank you for all your support in 2018. Until 2019...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Bringing the generations together

There have been few documentaries I’ve enjoyed as much as Channel 4’s ‘Old People’s Home for 4 Year Olds’. For me it ticked every box - it featured some amazing older people (the oldest was 102) and pre-school children (the youngest was 3), it looked at ageing, social care, healthcare, education and child development, it demonstrated innovation combined with scientific rigour, and best of all, it featured some really positive outcomes for the older people and the children involved.

It’s no surprised I loved the programme given the 9 years my dad spent in care homes, the work I do now with older people and those who provide care and support for them, and as a mum to a preschooler, my current immersion in the world of early years education. 

The seed for my enthusiasm for intergenerational work was sown watching my dad light up whenever children visited other residents in his care home. Sadly though, the time many of these children spent in the home was brief and their visits sporadic, so my dad never really had the chance to fully benefit from their presence, unlike the 10 older people featured in Old People’s Home for 4 Year Olds.

In our household, this documentary was particularly timely - in the weeks it aired we were settling our daughter into pre-school. It hasn’t been the easiest transition for her, but I am absolutely certain given her relationship with my mum (who is 79), that had she had the option to go into an early-years educational establishment that meant she shared her pre-school time with older people she would have settled a lot quicker.

The synergies for me don’t end there either. In an attempt to help our daughter settle into pre-school life I made her a memory book, which I’m gradually filling up with photos of all the adventures that we’ve had this year. A memory book for an (almost) 3-year-old - They are for older people (and people living with dementia) right? Wrong! They are amazing at every age and stage of life, and the book has been phenomenal for our daughter. It's given her pages of lovely familiar photos to comfort her and prompt her to talk about her adventures, and it's enabled her teachers to get to know her so much quicker and easier.

In essence, we are actually informally running our own mini intergenerational experiment in our house. My mum lives with us, and although I don't have scientists or experts measuring the effects of this for our daughter and my mum, I can informally categorically say that our daughter’s communication, reading, interactions and skills-set have benefitted so much from extensive time with her Granny, and for my mum, our daughter has physically and mentally challenged her, kept her going and brought so much joy, excitement and unpredictability into her life.

If my mum was living alone she would have had none of this, and would have been much more isolated and potentially lonely, as many of her peers sadly are. Meanwhile for our daughter, with the best will in the world, she would never have had as many books read to her or enjoyed so many other little learning experiences without Granny around every day. 

So, what do we learn from Old People’s Home for 4 Year Olds and my own domestic life? For me it’s that keeping generations in silos is so outdated. I’m not saying that arrangements like those shown on Old People’s Home for 4 Year Olds would work for every older person or indeed every preschooler. Some older people wouldn't want that level of noise, interaction and energy around them. Equally, some preschoolers may prefer to only be with their peers or adults of their parent’s age.

But there needs to be much more choice for everyone who would benefit. Older people who would like to interact with preschoolers could find a new purpose in life, teaching and supporting children to learn, and keeping themselves physically and mentally active into the bargain. Meanwhile preschoolers, who may have busy working parents and live long distances from their own grandparents, could benefit from the patience and time less hurried older people may be able to provide. And that, of course, is to say nothing of the exchange of wisdom that would be happening. 

For those with a less practical, romantic vision who are only interested in hard facts, muse on this. Old People’s Home for 4 Year Olds showed significant physical and mental improvements in the older people over the 3-months of this experiment, all of which could potentially cut the costs associated with their health and care needs. Examples included:

• 102-year-old Sylvia going from being classed as frail at the beginning of the experiment to being no longer classed as frail at the end of the 3-months. Sylvia's cognitive health tests also improved by +3 points.
• 97-year-old Victor improved his depression score by +3.
• 81-year-old Lavinia went from taking 495 steps per day to 1750 later in the experiment, and this despite a fall during the 3-months.

And overall amongst the older participants:

• 5/10 improved their balance.
• 9/10 improved their grip strength (an indicator of overall health).
• Almost half of the volunteers reduced their risk of falling.

The children also showed improvements, including the youngest child, Zach, improving his personal and social interactions and use of language, and Mason improving his sense of what it means to be an older person and developing his ability to nurture and be empathetic. Indeed, such is the impact of this experiment that The ExtraCare Charitable Trust, who run Lark Hill Retirement Village where Old People’s Home for 4 Year Olds was filmed, have committed to a lasting legacy for the project that will see a rolling six week intergenerational activity programme for Lark Hill residents and children from its neighbouring nurseries.

I can see so many positives in intergenerational approaches, and in the 6+ years I’ve done the work I do now I don’t think anything has excited me as much as the potential for bringing the older and younger generations together. The possibilities seem almost endless to my eager brain which is desperate to see new initiatives for the youngest and oldest in our society.

I feel we have become very stale, very staid, in our approaches to supporting people at the polar opposites of the age spectrum and it saddens me. For older people, they don’t necessarily have years to wait to get the care and support that they need, to alleviate their loneliness, to give them purpose and a reason to live the best life that they can. And for our youngest citizens, their brains are alive with possibility and opportunity, just waiting for us to ignite their imagination and feed them with the facts about anything and everything that makes up the world we live in.

For me there is no time to waste. No ifs, no buts. I’m proud that in our own little way through our domestic life that we are doing this as a family, but I would love to hear from any individuals or organisations who want to do intergenerational work like that shown on Old People’s Home for 4 Year Olds at scale. For our older and younger citizens, let’s make this happen!

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Supporting LGBT people with dementia

Almost a year ago (September 2017) 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. I wrote about BAME communities in my October 2017 blog, my March 2018 blog was all about rural communities, and last month I told Kathy’s story, about living with a learning disability and dementia.

For this post, I want to think about the challenges for people with dementia who are lesbian, gay, bisexual or transgender (LGBT+). Of the six groups the DAA campaign focuses on, LGBT people with dementia are the most hidden of all in my opinion and arguably the most stigmatised, coping with societal attitudes towards their age, sexuality and dementia at the same time.

Many older lesbian, gay, bisexual or transgender people have led a life that's been all about hiding away, characterised by fear and intimidation. Historically as a nation we haven’t been welcoming to LGBT people with layer upon layer of discrimination and ostracisation, not to mention violence and criminalisation. Indeed, homosexuality was illegal in the UK until 1967 and was classified as a mental illness until 1973. 

Since then, the immense changes that have happened legally and societally will have brought a huge amount of relief and joy for many LGBT people, but it's important that my generation - who see PRIDE marches and same-sex couples marrying - don't forget the struggles that remain vivid in the minds of some LGBT people who are now ageing. Examples like this, of a care provider celebrating with their own PRIDE event are still few and far between. No aged-care client that I work with has done anything like this to my knowledge, and I know from quizzing learners at my training sessions about how we meet the needs of people from different communities, including LGBT, that I usually get blank looks.

One of the big motivators for writing this blog came from what a learner said to me a few weeks ago, echoing others in the past: “We don’t have anyone living in our care home who’s gay!” It’s an interesting assertion that many staff struggle to quantify since they have to admit that they don’t know the full life history of every person they provide care and support for, and that which they do know may be the ‘acceptable’ front that so many LGBT people in their 70’s, 80’s and 90’s have cultured from a young age to protect themselves from the worse of what society would have thrown at them over their lifetimes.

With the development of dementia, however, that carefully protected private life can become extremely vulnerable to intrusion in so many different ways. Contact with health and social care services may be something that a lesbian, gay, bi or trans person actively avoids due to fears from their earlier life of medical professionals who tried to ‘cure’ them through ‘conversion’ therapy, much of which would have come under the umbrella of old-style psychiatric services, and of course modern-day psychiatry is a key part of dementia care now.

If an LGBT person has a partner, that person may be assumed to be a relative or friend rather than a partner simply because they are the same sex, and difficulties around a homosexual partner having the same rights as a heterosexual partner remain commonplace. The disadvantage doesn’t end if the person is single either – a person with dementia who doesn’t have a partner, children or other loved ones to advocate for them is likely to have poorer experiences of health and social care services, and due to their sexuality, many older LGBT people may have become estranged from their family.

Life can feel very exposed for a person with dementia, and exposure may be the very last thing someone who’s never come out, or who struggled to come out many years ago, wants. A person may feel the need to come out repeatedly as they meet with the numerous different professionals that characterise most people’s experiences of health and social care services. Working out when it is ‘safe’ to disclose your sexual or gender identify can be difficult enough without the added complication of dementia affecting your cognition and decision-making abilities.

Issues around trust can be hugely challenging, not least since the person may be terrified of people who are effectively strangers providing care and support or any peers that they are living with in a care home environment making hurtful judgements should they learn the person’s sexuality or gender identity. Problems around personal care can be particularly acute, since the person may worry about being punished for their sexuality, or may be fearful of any scars from gender reassignment being noticed, commented on, discussed by colleagues or documented in a care plan.

We talk a lot in social care about supporting people to feel engaged and to express themselves, but if you’ve been born male and feel most comfortable identifying as a woman and dressing accordingly (or vice versa), trying to be yourself whilst living in a communal environment may feel impossible. For that person the risk of isolation and loneliness, and potentially more rapid progression of their dementia as a result, is a very real possibility.

So how do we overcome these challenges? I’m not naive enough to believe that care homes or other social care environments can universally become places that are welcoming and inclusive for LGBT people overnight. But while we cannot necessarily influence the viewpoints of the person’s peers, I believe that progress can be made in educating the workforce.

When I first designed my training modules a few years ago, I will admit I didn’t include education about any seldom heard groups. Now, I talk about LGBT, BAME, and LD communities routinely, as well as younger people living with dementia. Presenting the idea that staff may be supporting a person from the LGBT community and questioning assumptions is a first step towards improving inclusion. 

Importantly, it also ties in with everything I teach in relation to life story work. The idea that not everyone wants to share their life story, or that they may share what they believe are the ‘acceptable’ details, rather than those they fear are ‘unacceptable’, are some of the biggest challenges in how we understand the person’s past to improve their support today.

Acknowledging where difficulties like these lie, and pooling our knowledge to improve how we meet the needs of our ageing LGBT population, is so important if we are to make services more responsive to lesbian, gay, bisexual or transgender people who are living with dementia and need, more than anything, to feel less stigmatised… not more.

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Living with dementia in a rural community

September 2017 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. I wrote about BAME communities in my October 2017 blog, and for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

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

LIKE D4Dementia on Facebook