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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The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

You can follow me on Twitter: @bethyb1886

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Doll therapy - Disrespectful or comforting?

One of the most controversial non-drug therapies for people with dementia is doll therapy.

Before the work I do now, I knew this not as a 'therapy' but as the lady in my dad's care home who occupied the room opposite him having dolls she would cradle, talk to, dress, put to bed and at times cuddle as if her life depended upon it. To a lesser extent my dad also found comfort within the principles of this therapy - not with dolls but with life-like soft toy farmyard animals that he would stroke and cuddle.

Back then I thought nothing of the ethical arguments around introducing items most closely associated with childhood into the world of people at the other end of life's spectrum. All I knew was that my dad had extremely restless hands that needed something to hold onto, and he seemed to draw a lot of comfort from stroking these animals and looking at them.

Likewise the lady in the room opposite had her dolls brought in by her daughter who would talk to her about them, and leave her to hold them and 'care' for them when it was time for the daughter to go home. From what I observed, the lady found a great deal of pleasure in these dolls, and seemed to have a far more creative interaction with them than she did with the daytime TV programmes that would often blare out from the corner of her room.

Looking at the use of these dolls and toys now with my more objective hat on poses an interesting dilemma for me. In my work I am a staunch advocate of ensuring that we never infantilise people with dementia. A dementia diagnosis doesn't mean you stop being an adult. Everything about dementia care should be dignified and respectful, and never treat people in any way whatsoever that belittles or demeans them.

On the flip side, do I really have any right to deprive someone who is living with dementia from finding comfort, enjoyment or familiarity from participating, of their own volition, in doll therapy? I saw first-hand how my dad's soft toys benefited him - they were our idea as a family, we bought them, we gave them to him, and we facilitated his use of them (at the time dad had these soft toys he was immobile, so he couldn't walk across the room to pick them up himself). He didn't ask for them, but he actively participated in handling them.

I didn't see his affiliation with these items as something that made him less of an adult, but arguably someone walking into his room seeing a grown man in a chair with a soft toy lamb on his lap might have thought very differently, and then treated dad as less of an adult as a result. Whilst I wouldn't have wanted to be responsible for anything that stripped away dad's status as an adult, I would have done anything that gave him comfort and pleasure.

In essence, this sums ups the complexities of the arguments around doll therapy. Such arguments polarise opinions and leave people like me - who pride themselves on offering balanced views, thoughtful commentary and helpful advice - with a real dilemma. I've never openly advocated for the use of dolls in dementia care in the way that fans of this therapy have, but equally I could never go into a care home, see dolls being used and honestly object, provided it was clearly in the best interests of the person with the dolls and something they were participating in willingly.

That last point gets to the heart of the arguments around doll therapy. The willingness of the person with the dolls is, for me, the deciding factor. If the person with dementia really takes to a doll in the way that someone else might find comfort in any other object, then that is their choice. We may present items other than a doll in the hope that they might prove more appealing, but if the doll remains the item of choice then that must be respected.

The argument about infantilisation in relation to dolls has much merit, but I think infantilisation can be avoided if the attitudes of those around the person remain respectful and adult. For most people with dementia who find comfort in having a doll, the doll is merely the physical manifestation of the person's need to care for something, and for that something to be familiar.

We know that as dementia advances a person often retreats to memories of their early life, which may involve childhood or early adulthood, marriage and starting a family. In the present day, a doll could easily be a reminder of childhood or of starting a family. Dogs and cats could also remind a person of those landmark childhood and early adulthood years, but many care homes (not all) won’t allow animals to live within their homes unless they are of the soft toy variety.

If dolls, and indeed soft toys, are seen as props to facilitate reminiscence then they take on a different significance. The ability to reminisce is considered the mark of a life lived with all the memories and events along the way that come with adulthood. Reminiscence also draws on the wisdom and experience that is the landmark of ageing. Therefore in that context dolls could be the spark to unlock knowledge, for example about parenting, for some people.

Ultimately, whatever your views on doll therapy - and incidentally I remain largely on the fence -  I suspect that being judgmental does more harm than the therapy itself. Yes, it has the potential to be disrespectful. It also has the potential to be comforting. The key to unlocking both the value of this therapy and combatting the negatives associated with it seems to be more about how those supporting the person with dementia facilitate it and react to it.

Until next time...

You can follow me on Twitter: @bethyb1886

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