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.

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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
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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
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Kathy’s story - Living with a learning disability and dementia

Imagine reaching your 40’s or 50’s having lived your whole life in the shadows of discrimination, exclusion, social stigma and poor treatment within many health and social care services... and then developing dementia. You’re younger than the majority of people who live with dementia and your dementia is likely (either through our perceptions or the circumstances of your health) to progress more rapidly. You are now part of one of the most seldom heard groups in society** - People living with a learning disability and dementia.

This is an issue close to my heart: My longest serving consultancy client of nearly 5 years are learning disability provider MacIntyre. I count many of the amazing people they support and their awesome staff as both colleagues and friends, but it wasn’t MacIntyre who originally introduced me to what life can be like when you’re a younger person with a learning disability and dementia.

On the day my dad moved into the care home that he would go on to spend over 8 years in, we met Kathy*. She was a bubbly, smiley, caring lady, clearly much younger than my dad and every other resident in the care home. She loved to ask questions and talk to anyone who would spend time with her.

Kathy wasn’t living with Down’s Syndrome, which is the learning disability most people associate with the development of Alzheimer’s Disease. Her only visitor was her sister, an older lady, devoted to her younger sibling and fiercely protective of her. Kathy’s sister was one of the most active and vocal contributors to resident’s meetings, making her a firm ally of ours. I’m sure she told me more about the disabilities and health issues that had dominated Kathy’s earlier life on one of our numerous chats over a cuppa, but I don’t recall the details.

Kathy’s room was in the corner at the end of the corridor, almost as if she was somehow set apart from the other residents - I never knew if that was deliberate or not. Kathy spent a lot of time in her room, making multiple clothing changes in a day and immersed with her toys and dolls. It was one of the most cosy rooms in the care home with every spare space filled, including having a bird feeder outside and plants on the windowsill that Kathy tended every day.

It’s been over 6 years since my dad died, but I still remember Kathy. She had a sparkle, but also a sadness. To be in a care home, surrounded by people significantly older than her, with staff who were mostly wonderful but without much time to spend with her (and the time they did spend with her was very much about tasks and functions) didn’t seem like the right environment for Kathy. She needed interaction, occupation (as did everyone!) and to socialise with her peers. 

Without her sister Kathy’s life would have been almost nondescript. Just another learning disability statistic, put into an aged care home that in the local area had a reputation for taking people other care homes wouldn’t take. Kathy’s sister was the person who had filled Kathy’s room with the things she loved, bought the clothes Kathy loved to keep changing into and the foodie treats that brightened up the long days.

Granted, the care home was better than Kathy living in one of the infamous long-stay hospitals, but that is a comparison that only looks favourable because long-stay hospitals really are the lowest dominator in terms of care and support provision for people with a learning disability. Back when my dad was alive I thought that was all Kathy could hope for, then in 2013 I began working with MacIntyre and was introduced to supported living, lifelong learning, person-centred approaches, Great Interactions, and the gold-standard of involving people in their care and support. The rest, as they say, is history.

I wish Kathy had known MacIntyre. I wish every person living with a learning disability, and especially people with LD who are developing dementia, could know MacIntyre. I’ll admit I’m bias; I’ve been heavily involved in their dementia work so of course I’m a huge supporter, but it really is groundbreaking as I wrote about here: ‘Watch And Learn: People With Learning Disabilities Leading The Way’ and here: ‘A Marriage Of Learning Disabilities And Dementia’.

But why does it matter you might wonder? Surely people like Kathy are few and far between? In fact, quite the opposite is true. People with a learning disability are living longer than ever before, but have a greater chance of developing dementia, with the link between Down’s Syndrome and Alzheimer’s Disease that I mentioned earlier being the biggest-known risk factor. Research and knowledge about LD and dementia remains patchy though, in common with so much about how as a society we view the importance of people with learning disabilities within our communities. 

Things are changing and heading in a more positive direction, but it shames us all that statistics like those calculated by the LeDeR (Learning Disabilities Mortality Review) programme tell us that a man with a learning disability dies 23 years younger than men in the general population, and that a woman with a learning disability dies 29 years younger than women in the general population. The median (when collecting data, this is the middle value, obtained from separating the higher half of the data sample from the lower half) age of death for a man with LD is 59 and for a woman is 56.

Those ages of course mean that if a person with a learning disability is going to develop dementia the majority will do so as a younger person, and in addition will likely face barriers in:

• Identifying their dementia (including diagnostic overshadowing, where a person’s dementia symptoms are written off as learning disability ‘behaviours’)
• Receiving a timely diagnosis (including difficulty accessing memory clinics and other specialist dementia services).
• Being offered treatments (including non-pharmacological interventions, like music therapy and life story work, which a person with a learning disability may never experience).
• Accessing age-appropriate, specialised care and support. 

I don’t know what happened to Kathy. My dad left the care home they shared on a cold March night by ambulance with an aspiration pneumonia that he never recovered from. He became a subject of safeguarding, and we went to clear his room shortly afterwards, the last time I saw Kathy. Her health, like my dad’s and everyone else’s, had deteriorated, she’d been hospitalised for bowel blockages and other stomach related issues, was immobile, and much of her spirit and communication abilities had become lost in the constant upheavals that characterised her life. The care home went on to be rated inadequate by CQC and has now closed.

Kathy had a life, but not the life she could or should have had, something far too many people with a learning disability experience. I’ve seen both sides of how we support people with a learning disability and dementia, and my appeal to anyone designing care and support services for our ageing learning disability population is to utalise best practice - it’s out there, shared by MacIntyre and others for all to learn from. It’s replicable, it’s achievable, and most of all it’s inspirational, because if we can get support for a person with a learning disability and dementia right, we can improve how everyone lives with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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*Name changed to protect identity.

**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 utilising 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 people who are living in rural communities in my March 2018 blog.

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
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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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