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

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

An elephant never forgets... but sometimes humans do…

So here we are in 2015, with all the usual hopes for improvements in services and support for people with dementia and their families. It's tempting to write my first blog of the year on what needs to happen to enable everyone with dementia in the UK to live well, but I want to kick off 2015 by transporting you to South Africa where I was incredibly fortunate to spend last Christmas and New Year.

I had never travelled so far before, or had such a long holiday - well, carers generally don't do they? The purpose wasn't primarily about sun, sea or sightseeing, but to spend time with my partner's family, particularly his parents - the other elements came as an added bonus.

Spotted on my Kruger Park Safari

Foremost in my mind was a plan to put my work to one side, leave my campaigning and awareness raising in the UK, and switch off from everything related to dementia. It's been such a huge part of my life, both personally and professionally, for as long as I can remember so a complete break seemed a great idea. What I discovered, however, is that it's amazing how the things you are really passionate about seem to find you, even in distant lands. 

There I was browsing in a shop in a rustic lifestyle centre near a rural African town when I discovered small purple packages bearing the message:

'An elephant never forgets... but sometimes humans do…'.

An elephant never forgets... but sometimes humans do...

Inside the packages were little necklaces and the following explanation: 

"Creating awareness for Alzheimer's and Dementia

An initiative by Red Bush Jewellery (www.redbushjewellery.co.za) to create awareness of Alzheimer's... the proceeds of the sale of these necklaces will go to The Living Cornerstone facility based in Sedgefield, Western Cape, South Africa, which specialises in the care of these people (www.thelivingcornerstone.co.za).

Alzheimer's disease damages the brain. It causes a steady loss of memory and how well you can think and do your daily activities.

It is a debilitating disease for the sufferer as well as for his or her family and caregiver. It is not easy to accept that your loved one will be there in body but not in mind. It is hard to think that someone you have known all your life will eventually not know who you are.

The Living Cornerstone is there to help families cope with the inevitable, to lighten the load and provide a secure environment where sufferers can be cared for in a loving, stimulating, homely atmosphere, a real home-from-home ambience."

My elephant necklace - Raising awareness of dementia in South Africa

Admittedly the language and in particular the use of the word 'sufferers' isn't reflective of current thinking, but putting that to one side, everything about this made me smile. There, in the heart of rural Africa, someone had decided to do their bit to raise awareness of dementia, and I can only imagine just how vast that task is.

Everything in South Africa feels huge - sweeping landscapes, lakes and rivers as far as the eye can see, towns and townships that spread out before you in what feels like a never-ending picture. And I only saw a tiny fraction of what this country, with a population of over 52 million people and a land area of over 1.2 million square kilometres, actually consists of. 

Seeing the way many of the poor people live my mind was inevitably draw into wondering how on earth you would begin to support a relative who is living with dementia when even getting clean water is a daily struggle. Awareness and understanding of the different forms of dementia, never mind accurate diagnosis, is likely to be alien to most people. The effect of that on a person with dementia, when they are unlikely to know what is happening to their brain and potentially are subjected to a lot of prejudice, misinformed beliefs and experimental ‘cures’ is likely to be about as far removed from ‘living well’ as we could possibly imagine.

That viewpoint was reinforced during a conversation I had with a lovely lady from Swaziland. She asked me what I did for work, and I began by telling her about my dad. Despite speaking perfect English she had never encountered the word ‘dementia’ and asked me what it was. In explaining to her I discovered that she didn’t know that a person’s brain could undergo these changes, or of any similar disease or condition going by a different native or traditional name.

All of this just reminded me that it's easy to live in our little bubble of heightened dementia awareness, diagnosis targets, battles over health and social care provision, and excitement at breakthroughs in research. We are informed (even if at times it doesn't feel like it), with treatments and therapies to fight for (albeit limited), and a standard of care that we expect (even if we don't always get it).

As the necklace packaging says, ‘An elephant never forgets… but sometimes humans do...’ Meant in the context of dementia awareness in a rural African area it is a priceless message. But it also has huge value in the UK too – as a reminder of how far we have come as an awareness-raising country, and how for so many other people around the world there is so much more that needs to be done if they are to ever live well with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Challenging stereotypes about families and care homes

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

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

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

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

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

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

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

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

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

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

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

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

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

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

LIKE D4Dementia on Facebook