Coronavirus and being isolated from a loved one

Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: How do we hand-wash more and how do we self-isolate?

For families who aren’t in the same household, however, they are living through many weeks, which may potentially become months, without physically seeing their loved ones. If a family member is in a care home that isolation period may be the longest any of us experience, since care homes are - as we have seen - incredibly vulnerable to coronavirus outbreaks. 

Indeed, the impact of coronavirus on care homes and the devastation being wreaked in terms of illness and death amongst residents (as well as the huge risks many staff are taking if they don’t have adequate personal protective equipment) is on a scale that even on the current estimations is truly horrific.

Fears for a loved one in a care home

For numerous families, reading these stories will only magnify their own immense fears for the health of their loved ones in care homes, and many will feel utterly powerless and dreading every ring on their phone. Although we never lived through anything like this with my dad, there is no doubt that I know the fear of illness well, since dad was hospitalised numerous times in the last nine years of his life. 

For us, the dreaded phone calls would often come in the middle of the night and would usually be because dad had a worsening chest or bladder infection. Time after time dad pulled through until the last, catastrophic bout of pneumonia that eventually overwhelmed him.

With care homes currently in strict lockdowns, the ban on visiting has both emotional and practical ramifications. The longest I ever went without seeing my dad during his nine years in care homes would have been around three weeks when one of his care homes had a norovirus outbreak, and it was characterised by constant worry.

The pain of separation 

Fast forward to 2020, and most families are faced with being apart for far longer. The pain this separation will be causing many people was something I thought about whilst reflecting on my dad’s 93rd birthday earlier this month. We were lucky to be able to spend every birthday with my dad, but so many people will be unable to do that during this pandemic. 

The stark feeling facing many families will be the anxiety that it could be their loved one’s last birthday and they won’t have those memories of being together. Whilst this may sound trivial to some in the face of the threat of coronavirus, the loss of the celebration of these milestones together only enforces the painful separation. And of course if a loved one is approaching the end of their life and you aren’t able to see them, the effect on grieving families is immense. We can buy many things and do a huge amount as 21st century citizens, but we cannot buy time, nor replace the physical touch of hand in hand or cheek on cheek.

Ways to keep in touch with your loved one when you are apart

Much has been said about the power of the digital world to bridge the yawning chasm many families are feeling, and it is undoubtedly the best option for at least seeing each other’s faces and hearing each other’s voices through mediums like Skype, FaceTime and Zoom.

More traditional options like sending letters, cards and photographs might seem less appealing, but for the older generation and particularly if someone’s dementia is advancing, these might be more understandable and recognisable than digital options. 

Bear in mind too that as someone’s dementia progresses, a phone call may be incredibly difficult for them to contribute to as it contains none of the visual clues, like mouth movements and body language, that can help the person to understand what you are staying. And of course they cannot see you, so simply saying who you are may not be enough of a reminder.

Practical things you can do for your loved one

If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:

• Make a life story resource. It may be that one of your lockdown projects is to sort through old photographs or memorabilia at home, or do some family tree research. Commit to creating a life story resource from items you may have at home, or things you can find online about your loved one’s life. You could turn these items (using copies of any precious originals) into a life story book, box, collage for a wall or other resource. You could be more creative too, as this care worker was when she had a cushion created for a gentleman who was missing his late wife. And don’t wait until you see your loved one to give them your life story gifts - research an affordable door-to-door courier (examples here) and make it a lovely surprise for your relative to open during this lockdown.

• Make a playlist. If you know the music your loved one enjoys, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three-way remote project between yourself, your loved one and the care worker(s) supporting them.

• Send a food parcel, or package up favourite cosmetics, clothing, books, magazines, cd’s, dvd’s, hobby materials or other things your loved one will enjoy receiving. There are lots of things you can order online and have them delivered straight to your loved one, or get some extra items with your grocery shop, package them up and send them via a door-to-door courier. Again, this will make a lovely surprise.

All of these ideas, of course, won’t ever replace that personal contact, but in the face of the current restrictions I hope families will find comfort in being able to do something practical to feel more useful and to ease those long days until they meet again.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
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Without a song or dance, what are we?

One of the first blogs I ever wrote on D4Dementia, back in May 2012, was about music for people with dementia. It charted my dad’s love of music, how it became a vital communication tool in the latter years of dad’s dementia, and how I’d been so inspired by the effect music had on my dad that I trained to become a professional singer and completed 35 gigs in care homes.

I guess back when I was doing those gigs, I was effectively part of what a recently launched report on dementia and music calls “a multitude of different individuals and organisations” delivering live music in care homes. The patchwork picture painted by that phrase is very apt given the findings of the aforementioned report - from the Commission on Dementia and Music set up by the International Longevity Centre and supported by The Utley Foundation - that music for people with dementia is, “Defined by sporadic provision which is currently delivered only to the few.”

But why does that matter? Evidence has emerged over the last few years that shows a multitude of benefits associated with music for people with dementia, including:

• A positive effect on the brain by potentially helping with the recall of information
• Minimising distressing symptoms
• Tacking anxiety and depression
• Retaining speech and language
• Enhancing quality of life (through social interaction, improved wellbeing and decreased stress hormones)
• Having a positive impact on the person’s relatives, friends and care workers when they join the person in music-based activity
• Minimising anxiety and discomfort in end-of-life care

I recognise so many of these benefits from my personal experiences. Music gave my dad so much joy, satisfaction and pride. He would sing his favourite songs from beginning to end, word perfect and with precise rhythm and timing. Most tellingly of all, as I recounted in my 2014 Huffington Post blog 'The Power of Music Therapy', when dad could no longer hold a conversation, he could still sing a song.

For us as a family, singing dad’s favourite songs with him or humming or tapping out a treasured melody gave us a priceless connection with him. It was something we could all join in with (once I’d printed lyric sheets for those of us less well-versed with the songs!), smiling, laughing and sometimes shedding a tear together so bound up were we with the emotions of the music.

Indeed, it was the amazing effect music had on my dad during his years with dementia that contributed to the inspiration I had to begin D4Dementia. I wanted to share some of the positive aspects of my dad’s life, and music is right up there on the positive list. In the nearly 6 years since my dad died, I’ve urged everyone I’ve met who’s involved in dementia care and support to give music a try, and it has undoubtedly become easier to do that.

Initiatives like Playlist for Life have come to the fore, and with internet access improving yearly, being able to utilise digital music archives, watch music performances on YouTube, or obtain lyrics to support communal singing of favourite songs has made music more accessible than ever before.

It is extremely sad then that the Commission on Dementia and Music concluded that:

"Educated estimates suggest that high quality arts and music provision may currently only be available in just 5% of care homes." And, "There may be as many as 320,000 people with dementia in residential settings who do not have access to meaningful arts provision."

There is SO much more that needs to be done to support people who are newly diagnosed with dementia, all the way through to people being supported in end-of-life care, to access the musical intervention that is right for them. It could be anything from informally listening to CD’s or the radio, to playing an instrument, formalised music therapy sessions, live music performances designed for people with dementia, or groups like Alzheimer's Society's 'Singing for the Brain'. 

The report gives a list of recommendations which provide all of us with a focus for raising awareness of the benefits of music for people with dementia, or becoming actively involved in its provision. Indeed, friend and fellow writer, Pippa Kelly, has already blogged about a fantastic idea from soprano Lesley Garrett for the BBC to reintroduce ‘Singing Together’, a programme that once brought young people together around their radios and could now do the same for older people.

I for one wholeheartedly support this idea and hope it is just the start of many more innovative musical initiatives, simply because, as the report says:

“A life without music is unimaginable for many and yet for some people with dementia, opportunities to access music can be few and far between.”

Let’s all be part of changing this current reality so that no one who could benefit from a song or dance in their life is left without it.

Until next time...

You can follow me on Twitter: @bethyb1886
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Do something new... with entertainment

Welcome to the fifth of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special. 

Day 5: Entertainment

Following on from yesterday’s blog post on learning and education in care homes, I wanted to pick up the specific themes around entertainment and expand on those. So much of ‘entertainment’ in care homes is a blaring TV (or many blaring TV’s), often with people sat in front of them who honestly look like they would rather be anywhere else than in that chair watching daytime TV.

Yet entertainment can be so much more than the bog-standard. Box sets of favourite films can recreate a movie theatre experience, book clubs and storytelling can enliven the creative juices, drama and theatre groups (either external local groups or a group made up of residents, relatives, friends and staff) can bring stories to life, visiting instrumentalists can provide evocative memories of learning to play an instrument, big sporting events can join people with different allegiances together in friendly banter, board games and other traditional forms of entertainment can be wonderful for reminiscence, and a visiting choir, or indeed a choir made up of people who live and work at a care home, can not only make beautiful music but help to form bonds and friendships over music. Some care homes have even successfully integrated video game consoles into the options they offer their residents.

If you are going to invite people into your care home to provide entertainment, first of all find out if they are offering something that no one else you know does (there will be lots of untapped talent amongst residents, relatives and staff!), and secondly think broadly. Singers of different genres (not just an Elvis impersonator), circus entertainers, dog show demonstrators, the list is a long one, and don’t forget to make enquires amongst different cultural leaders in your community – the UK is very diverse and there are some fantastic forms of entertainment specific to different cultures that you would otherwise need to travel to far away lands to experience. 

And remember, the only limit to doing something new with entertainment is your imagination.

More information, tips and advice on entertainment can be found in the following D4Dementia blog posts:

Singing from the same hymn sheet: http://d4dementia.blogspot.co.uk/2012/05/singing-from-same-hymn-sheet.html

Remember, remember: http://d4dementia.blogspot.co.uk/2012/10/remember-remember.html

Next post on 22 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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Reflections on 2013

Reflecting on a whole year is never an easy task. So many different events, milestones, and most importantly people have contributed to the last 12 months, each leaving me with that most precious gift – a memory.

My collection of memories for 2013 is fairly eclectic – I’ve spoken at conferences, run workshops, taken part in debates and appeared on radio and TV. I’ve become a Dementia Friends Champion and a member of the Dementia Action Alliance, as well as fundraising for Dementia UK and Alzheimer’s Society. I’ve become an Ambassador for BRACE, won ‘Best Independent Voice on Older People’s Issues’ at the Older People in the Media Awards, and made a film that was shown at the first ever G8 Dementia Summit.

Attending the Summit, and having tea with the Prime Minister afterwards, is arguably the most high-profile memory of 2013, but could it also be the one that has the most impact in the years ahead? I was asked after the Summit whether I thought the G8 would stick to their commitment to, “Find a cure or disease-altering therapy by 2025.” My answer is that it is up to all of us who are passionate about dementia to ensure that they do.

But for this, my last D4Dementia blog post of 2013, I want to share some memories with you that aren’t going to make huge headlines but will live in my heart and mind for a long time. So, in no particular order:

Meeting Kate Swaffer: Arguably the greatest privilege of the year, and certainly one that I’ve spoken about extensively since, was meeting Kate, an online friend who became a real life friend over a #dementiachallengers lunch in London. Kate’s grace, poise, humour, kindness and wisdom is inspirational - she also happens to be living with dementia. Kate, along with the lovely people who featured in the G8 films (Hilary, Trevor and Peter), are shining a vital light into what living with dementia REALLY means.

Moral of the story: Think myths and stigma about dementia and then think again.

Our Memory Café:  It’s been a tough year for dementia services in my area. Our Singing for the Brain (SFTB) closed down, and our Memory Café is mostly being propped up by people attending from the local care home. Alongside the sadness of hearing about the deterioration of some of our friends from SFTB, came the joy of seeing ladies from the local care home singing along to some of their favourite tunes at our impromptu music group at the Café. As one of the ladies said, “I thought I was only going to get a cup of tea. I didn’t know we would have singing too. Thank you so much.”

Moral of the story: Sometimes the small things in life bring the most pleasure (and don’t require huge sums of money to deliver).

My dad’s last care home: I’m somewhat ashamed to admit that since we cleared out my dad’s room following his death in April 2012, we hadn’t been back to the care home that looked after him in the last two weeks of his life. That isn’t because we didn’t want to, but despite the loveliness of the home I still picture answering the door to the undertakers and seeing dad being wheeled out of the home on their trolley. However, when I was asked if I could show a colleague from NHSIQ around a good care home, there was nowhere else I could have taken her. It was emotional to be back there again, but the huge smiles, hugs and warm welcome from the amazing people working at the care home reminded me yet again what a special place it is.

Moral of the story: For all the negative reports you hear about social care, there are far more good places and people that are never spoken about.

Finally…

People: I’ve met such a huge array of people this year – politicians, health and social care professionals, managers, civil servants, business owners, academics, families from all walks of life, and many inspirational people who are living with dementia. From the youngest to the oldest, from those who are extremely knowledgeable about dementia to those who feel completely baffled and are desperately seeking help, it’s fair to say that each and every person has managed to inform and educate me in some way.

Moral of the story:  We all have something to offer, and to dismiss others is to do ourselves a great disservice.

So, it is with my precious collection of memories from 2013 that I close this blog post by wishing you all a very happy Christmas and a peaceful, healthy and fulfilling 2014. My next D4Dementia blog will be in January, and I’ve taken the difficult decision that D4Dementia will become fortnightly from next year, so suffice to say it will take me somewhat longer to reach my next century of blog posts. What won't change, however, is my passion for raising awareness of dementia, tackling 'difficult' topics, and providing positive and practical advice.

Thank you all for your amazing support over the last 12 months.

Until 2014...

You can follow me on Twitter: @bethyb1886

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Talking the talk

Through my work I often encounter people who say that they cannot talk to someone who has dementia. They are scared to talk to them (as I wrote about here), don’t know what to say, are unsure of how they will respond, or simply can’t see the point. Many times I’ve heard, “Well it’s not like they are going to remember what you say is it?”

I would argue, however, that these attitudes reflect far more negatively on the people expressing them, than they do on the communication skills of the person with dementia who they are seeking to avoid a conversation with. It is a very sad indictment on our own abilities if we cannot find the time, make the effort, and actually learn how to have a meaningful conversation with a person who has dementia.

It doesn’t need to be a full-on debate, a few words can provide immense insight, but how, you might ask, are you going to do that when someone’s dementia is advanced to a point where they are constantly repeating themselves, speak words that you cannot understand or make noises that don’t even represent words? In the last few years of my dad’s life, his noises became more and more dominant in his communication armoury until they were the only sound that he would make, unless of course we put a song on that he loved, then whole words that were perfectly timed with the music would flow from his lips.

So much about communication with someone who has dementia, especially in the more advanced stages, is about the approach that you take. You can assess a situation and decide that you can’t work it out so you won’t bother. Or you can adapt (try singing your conversation rather than speaking it), learn to listen carefully, and choose topics that might spark your loved one’s interest or engage in activities with them that could naturally promote conversation. Often once a song had reminded dad of his vocabulary, the noises he previously communicated with would be temporally shelved in favour of clearly articulated words that, due to their rarity, brought such joy and happiness to everyone around dad, and seemingly to him too.

Those moments were the bright spots in what were often long days of effectively a monologue from us, but it wasn’t always like that. Earlier in dad’s dementia he went through a stage of constant repetition, and I have met many other people with dementia who similarly feel the need to say the same things over and over. Thinking about this logically, it’s not entirely unexpected. If someone cannot remember what they have just said but still have the thought in their head, they are likely to repeat it. Equally, if they feel that they are not being listened to or acknowledged, they may seek to constantly reaffirm what they want you to hear. It can also be a symptom of boredom, a lack of engagement in their surroundings, or a need to break out from their environment to experience new sensations.

Frustrating though constant repetition might be, the worst thing you can do is try to fight against it. Getting angry, being dismissive or rude won’t help anyone, and it’s unlikely to stop the repetition that you are finding so irritating. Learning to go along with it, rather than seeking to correct it, will be a lot less stressful in the long run, and will also avoid that terrible guilt every carer has felt when their exasperation has led them to say something that they never meant, but that may potentially have hurt the person that they love and care for.

Dealing with misunderstanding, as a result of muddled words or words that you cannot fathom, can be equally challenging and lead to very similar emotional fallout. For a long time my dad kept saying something that sounded remarkably like ‘Obama’. Bizarrely he was doing this long before Barack Obama became US president, leading me to wonder if dad actually had a sixth sense about the result of the 2008 American election!

I never did work out what he was trying to tell us, and sometimes guessing can lead you down a path that is even more baffling than when you originally heard your loved one say the word(s) that you cannot understand. I eventually came to the conclusion that dementia can produce a language all of its own, related perhaps to the world that the person with dementia is living in, or possibly entirely unconnected – like an involuntary reaction that has no foundation or meaning and cannot be controlled.

So how do you cope with all the vagaries that come from communicating with someone who is in the more advanced stages of their dementia? My advice would be to apply the 3 golden rules:

1) Don’t ask questions

2) Don’t contradict the person

3) Learn to love their repetition

Of course like all rules you will break them, we did on countless occasions, but never intentionally – it isn’t only people with dementia who can have an involuntary reaction to a situation. We tried to make up for our shortcomings by allowing time, showing patience, keeping our expectations in check and our minds open to what we were hearing, remembering that if something left us bemused, frustrated or hurt, that what the mouth may say wasn’t necessarily a reflection of how the heart was feeling.

Until next time...

You can follow me on Twitter: @bethyb1886

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Singing from the same hymn sheet

Me singing to my dad, July 2011

Improving the quality of life for people with dementia, especially in the more advanced stages of the disease when they may have very limited communication or ability to do anything for themselves, is one of my biggest passions.

Over the many years of my father’s dementia we tried numerous different therapies to improve his wellbeing and engagement, and by far the most successful was music. It helped that he had adored music his whole life, right from when he was a chorister at Cathedral School through to my childhood when his strong, perfectly tuned voice would rise above everyone else’s at Sunday church services. For a family so vociferously against chemical cosh drugs, music was the naturally therapeutic choice for my dad.

When my father went into his first care home, like most families we got him a TV for his room, but very soon afterwards it was broken, a godsend for dad as he no longer had to sit and watch mind-numbing rubbish that he had no concept of. He still watched his favourite sports and old films on the big screen in the communal lounge, but his room became a haven of music thanks to his CD player and all the albums he amassed via Christmas and birthday presents.

Our approach wasn’t without its teething problems. We went through a phase of having to continually remind the staff not to put the radio on, as the CD player was there for dad to listen to his music, not for the younger generation to enjoy the local station blaring out modern pop tunes, but otherwise I can honestly say that the CD player was pretty much the finest thing we ever bought dad. In fact it was used so much that we actually went through three machines in the eight and a half years dad was in care.

When my father’s dementia progressed to the point where he had very little conversational ability, and latterly could say no more than a word or two, he would still listen to songs and say the lyrics at precisely the right time, proving that not only did he still know the words but he knew exactly where they fitted within the song. Dad’s expressions and reactions showed how much joy, comfort and pleasure music brought him, and you cannot ask for more than that when you are caring for someone with dementia.

Seeing the effect music had on dad persuaded me to use my singing training to go into other homes, and in 2011 I did 35 gigs in care homes, all of which had at least some audience members living with dementia. My experiences paint a very mixed picture of how different homes and providers approach music therapy sessions. Some welcomed me with open arms, their staff engaged with my show and as a result supported audience members to gain the maximum from having me there. Others used my arrival to simply dump their residents in chairs around the edge of a dimly lit room, with the hardest of hearing placed the furthest away from me, close the door, and leave me with my audience while they went to have a coffee break.

Despite most relatives wanting extensive activities programmes for their loved ones in care homes, and the availability of external entertainers and specialists to come in and supplement that, sadly it is often an under-funded area. The experience I had is that whilst my shows were very well received, activities organisers were unable to re-book me, or indeed anyone else, as either their budget had been cut or they had to fundraise.

Activities like music, art, exercise and reminiscence are vital for people with dementia, and yet they are neither valued nor supported by many care home operators, including some of the biggest companies in the country. It is often seen as easier to just sit residents in front of a TV and leave them there.

There is also a huge lack of understanding about how something as simple as putting appropriate music on can change the atmosphere amongst residents. It infuriates me when care homes play modern pop music to their residents when they could be playing music that will offer residents the chance to reminisce. Hospitals with agitated patients could use less chemical coshes if they were more innovative with music therapies. On one of my father’s hospital admissions we were fortunate enough to be given a side room with a CD player, and having brought in some of his favourite music, the change in his mood was phenomenal.

Music therapy isn’t just for people in the latter stages of dementia either. I am now involved with the Alzheimer’s Society ‘Singing for the brain’ programme, which is a fantastic initiative that provides a supportive and sociable group where people living with dementia can come with their carer and ‘sing to express, not to impress’. The focus is on joining in, feeling engaged and improving wellbeing, not on auditioning for X Factor!

Seeing the faces of everyone in the group light up with different songs and styles of singing is hugely rewarding. It reminds me so much of the work I did last year, and how groups of sleepy, agitated or incoherent residents were transformed into mini choirs when I started singing songs they loved. Some people even got up and danced, and in one home a relative told me that she had never seen such an amazing atmosphere.

In my view all care homes should provide ‘Singing for the Brain’ type sessions as a mandatory service, and the huge availability of digital music and MP3 players should promote further, more personalised, engagement for residents. I have read really interesting stories of iPod’s being used very successfully in care communities in America, and the UK needs to catch up with these technological advances. Given the fees being paid by care home residents across the country, this should be just the tip of the iceberg in terms of innovation in how therapeutic dementia care is provided.

Until next time...

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