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Monday, 5 February 2018

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 15 January 2018

Delivering a dementia diagnosis

There are many times in a person’s life with dementia that are described as pivotal. Often these are the difficult, crisis occasions that create the negative narrative that is so commonly associated with dementia. But after my recent personal experiences of dementia in my wider family, I’ve found myself reflecting on what I feel is arguably one of the most, if not THE most pivotal moment in a person’s life with dementia - their diagnosis.

As I’ve written about many times, my dad’s diagnosis took ten years, involved a catalogue of missed opportunities, a crisis that could have killed him, and ultimately when we finally heard the words that he’d been formally diagnosed with dementia, they came when we visited him in hospital and found his bed empty. The nurse said he’d been moved to the Elderly Mentally Infirm (EMI) Unit having been diagnosed with dementia.

Fast forward 14.5 years and for most people in the UK things have improved. We now have memory clinics, and the voluntary Memory Services National Accreditation Programme (MSNAP) from the Royal College of Psychiatrists that involves regular peer reviews (I am an MSNAP Peer Reviewer). Multidisciplinary teams staff these clinics, bringing a wealth of different skills and experiences that are vital in giving patients the very best diagnostic experience.

But not everyone has the type of experience I’ve seen in some of the best memory clinics in England, and when the experience isn’t good the effects last long after the doctor has delivered their clinical judgement. Listening to the diagnostic experience one of my in-laws had in South Africa last year left me with a mixture of sadness and anger - no person should have such a poor experience given all of the best practice examples available from many different countries (including the UK), and bear in mind that we are talking about private healthcare here, where the person is the very definition of a consumer.

My feelings left me reflecting on what a good experience really looks like from the person’s perspective, and I want to share those thoughts with you for this, my first D4Dementia blog of 2018. Whether you are a person concerned you may be developing dementia and could be seeking an explanation for your symptoms in the coming months, a relative worried about a loved one who you may go on to accompany to diagnostic appointments, or a clinician responsible for any part of the diagnostic pathway, I hope this list will help you.

1)     The person must own their diagnosis

This is the singularly most important aspect of diagnosis. Dementia remains stigmatised, particularly amongst older generations who still remember the asylums and labels of ‘madness’ that may have formed their viewpoint of dementia many years ago. The person needs to be personally involved and addressed at every point in the diagnostic process, and when the final verdict is delivered, it has to be communicated to the person first and foremost, in the most appropriate way for that person and by the most appropriate clinician. Anything less than this and the risk of the person not believing or trusting in the diagnostic process and the outcome of it will massively increase, which in turn can have long-term ramifications.

2)     Family can help... and hinder

It’s often said that a dementia diagnosis isn’t just given to the person, but to their whole family and wider network. Whilst as a daughter whose father lived with dementia I would agree with that, there is always a temptation to involve family members in the diagnostic process more than the person themselves, sidelining the very individual who is potentially living with dementia. Clinicians often choose to speak to family members because it’s perceived as easier and the information being gathered is seen as more reliable. At best that’s insulting. At worst it pits family members against their loved one with dementia. Marginalising the person is likely to leave that individual feeling that everyone is ganging up against them, which is a recipe for destroying relationships at the very time when they need to be at their strongest.

3)     The diagnostic process must be fair and thorough

For a person to believe and trust in their diagnosis, the process must be comprehensive, transparent, never rushed and totally individualised. Attempting even preliminary investigations when the person is unwell with another condition or infection is, in my view, utterly unacceptable. The person must be at their best to know in their own mind that they are able to give of their best in tests. Equally from a clinical perspective, you want an accurate measurement of the person’s baseline or, if you are tracking from a baseline, an accurate picture of where the person is now. Diagnosing just to tick a box, earn a financial reward (as has been available in the past in England) or prescribe certain drugs is never, ever justifiable.

4) A few words that change a person’s life

I’ve been very lucky in my work with MSNAP to hear from many people living with dementia and their family members who’ve had nothing but praise for the doctors, nurses, therapists and advisors who they’ve encountered during their diagnostic experience. How the diagnosis is delivered is a key marker we look for during MSNAP peer reviews and with good reason. An empathetic clinician who delivers the news of a dementia diagnosis with kindness and clarity, tailoring the level of information to the person, understanding what a momentous moment it is for the person, and allowing time and space for their carefully-chosen words to sink in is a clinician others less adept in these situations could learn a huge amount from.

5) Don’t abandon the person and their family

I couldn’t write a blog about diagnosis and not touch on one of the aspects of dementia care and support that I am most passionate about - post-diagnostic support. Even when a diagnostic process has fulfilled all of the aspects I’ve outlined above, the weeks and months after the person’s diagnosis can leave the individual and their family feeling abandoned and having to cope alone. This is when the risk of depression for all concerned can exponentially increase, and life can begin to unravel pretty rapidly and most definitely not in the direction of ‘living well’. Accessing peer support (including through DEEP and DAI), carer support, making environmental modifications, exploring rehabilitation, reablement and therapies to combat distressing symptoms are just a few ways to ensure that a good diagnostic experience is followed by an equally positive post-diagnostic experience.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 4 December 2017

Resolve to embrace human rights

(A note before I begin this blog post: You should not consider anything written in this blog as legal advice for you or anyone you care for).

During my dementia training for social care professionals, I ask participants:

“Do you think people with dementia have human rights?”

Most participants, keen to say the right thing, murmur, “Of course.”

Which naturally leads me onto the next question:

“So what are these human rights then? Name me some...”

And the silence that follows is usually defending.

When the silence is broken, it’s been broken by some really ‘interesting’ contributions. The right to "a cup of tea" and a "clean bum" are two notable examples.

I talk about human rights during my training on living well, or living better, with dementia. Although human rights fit into every aspect of living with dementia, I think presenting them in the context of 'living well' sends an important message that human rights are vital to the person’s quality of life.

Human rights and people with dementia

There has been a very powerful movement towards thinking about the support of people with dementia in a human rights context, led by many important voices including Dementia Alliance International. The disability sector really pioneered human rights work in relation to people with various disabilities, and leading advocates for people living with dementia do, quite correctly, feel that the same rights should be afforded to people with dementia. Legally that is certainly true, but in practice it happens sporadically at best.
Human Rights law encompasses many different aspects of life. To pick out some of the Rights that are particularly relevant in the context of health, social care and dementia, I often think about:
    The Right to life
    The Right to freedom from torture and inhuman or degrading treatment
    The Right to liberty and security
    The Right to respect for your private and family life, home and correspondence
    The Right to freedom of thought, belief and religion
    The Right to freedom of expression
    The Right to protection from discrimination in respect of these rights and freedoms
    The Right to peaceful enjoyment of your property
Historically, the most common barrier to the application of a person’s human rights has been the assumption that all people with dementia are incapable of self-determination (autonomy) simply because they have dementia. Of course, with the introduction in the UK of the Mental Capacity Act (My blog post on MCA is here), that assumption could no longer, legally, be made.
Yet, such is the lack of understanding about MCA, and the often poor practical application of its 5 main principles, the MCA is frequently as misunderstood as human rights legislation. Even more alarmingly, whilst most social care staff when questioned will say they’ve had some basic training in the Mental Capacity Act and Deprivation of Liberty Safeguards (DoLS), the majority of staff I see have never even been asked to consider their care and support practices in the context of the person’s human rights.
Simplifying legal complexities
Human rights is a huge topic that I do not profess to be an expert in. But even for a lay person such as myself, there are important aspects that I feel anyone can and should grasp to augment their understanding.
Firstly, the framework for making decisions is an approach based on asking yourself:
    Is it lawful?
    Is it a legitimate aim?
    Is it necessary in a democratic society?
Three fairly simple questions. And of course the ‘it’ could be anything, from a daily care and support issue around personal care or medication right through to locking doors.
Secondly, the principles of a human rights based approach are:
    Least restrictive option
    Balancing rights and risks
    Proactive strategies
All of those 4 principles draw me in, much like the principle in the Mental Capacity Act that allows for a person to make an ‘unwise’ decision. The concepts of balancing rights and risks, being proportional, and taking the least restrictive option always spark interesting conversations. 
Practicing a human rights based approach
In one recent example, I asked a group of care workers what they would do if the person they supported wanted to take a walk outside:
Care staff: “Our residents often go outside onto the patio in the summer.”
Me: “Ok, I was thinking a bit further than your patio area. And I’m talking about right now. Late November, 4pm.”
Care staff: “Ah well that would be dangerous so we’d keep them in.”
Me: “But what about the person’s right to liberty and security? If we say we are respecting the person’s rights, are we only doing that between May and September?”
Care staff: “But we have to keep them safe - it’s getting dark.”
Me: “It is, so if we are taking a human right’s approach, respecting the person’s right to LIBERTY and SECURITY, let’s ensure the person is wrapped up in warm clothes and non-slip shoes, dress ourselves similarly, take a torch (and we have lighting around the building) and go for a walk outside with the person. That way we are supporting the person’s right to liberty, doing our best to keep the person safe by keeping them warm and going with them, and being proportional by supporting what the person wants but keeping to areas that are well-lit and won’t involve us getting lost. We have balanced the person’s rights with the risks and found a less restrictive option (than keeping the person locked up inside). We could also add being proactive in our approach if the person wants to regularly go for a walk at this time and we anticipate and support that. And as a plus point, can anyone think of any other benefits?
Me: “The person will hopefully get a bit of an appetite for their supper, enjoy some exercise, and potentially stave off any sundowning symptoms by being occupied and engaged. Best of all, we will have empowered that person.”
Empowerment - the very best example of living well
That, for me, is ultimately what a human rights based approach is all about - empowerment. Losing rights and freedoms is very disempowering. Being told "no" constantly. Being locked up like a prisoner. Feeling your needs and wants don’t matter. Anyone in that position might just give up.
But when we find a way by being proactive, even if logistically we have to make some compromises, we transform the person’s experience. Being told "yes" is a positive feeling. When the doors open, the sense of freedom is exhilarating. Having our needs and wants met validates those needs and wants. You are living, not just existing, because you feel like a worthwhile and empowered human being.
My challenge to you
Many individuals and organisations would benefit from enhancing their understanding and revolutionising their approach to human rights to protect people living with dementia from, at best, misguided care and support and at worst, abuse. So, as 2017 draws to a close (this post marks my last D4Dementia blog of the year), my challenge to everyone involved in the care and support of people with dementia is to make 2018 the year you resolve to embrace a human rights based approach. And to support you, this won’t be my last blog on the topic.

Thank you for all your support in 2017. Until 2018...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 13 November 2017

Home sweet home

I seem to have found myself quoting a particular statistic so much in the last few weeks that it is now imprinted in my mind:

I include this stat in my dementia training for health and social care professionals, which might seem strange since many social care staff that I train and mentor are working in care home environments, but this one statistical sentence opens up so many extremely interesting discussions about the role of ‘home’ in our lives, the links to independence, choice and control, and the feelings and emotions evoked by ‘home’.

The role of ‘home’ in our lives

Why such an overwhelming number of people would want to remain at home is unsurprising. Our homes are meant to be our place of safety and security, places we personalise, feel comfortable, where we can truly be ourselves and do as we want.

So what about the 15% of people who don’t necessarily want to remain at home - do they not have all of those feelings about their home? They may well do, but those feelings are possibly tempered by concerns about family members providing care and support, or the person is living alone and considering a communal home due to fears about isolation and loneliness.

‘Home’ is a really interesting concept in dementia care. As a person’s dementia develops, the role of the person’s home can change: The person may form an attachment to their home that becomes overwhelming to the point that they won’t venture out, if the person does venture out they may not be able to find their way home again (even if they’ve lived in the same neighbourhood for many years), and sometimes home can become an alien place that the person no longer recognises, even though nothing has changed in numerous years.

Home, in the person’s mind, may become somewhere they lived in their childhood or earlier life, which could lead the person to go out to try and find that home again. “Please take me home,” may also be a frequently used phrase if the person is somewhere they don’t recognise, like a hospital, care home, or their own home that simply doesn’t feel like theirs any longer.

When ‘home’ is the problem

Often we assume that so long as the person remains at home, being part of that 85%, they will cope fairly well with their dementia. Yet the person’s home, for all its perceived familiarity and comfort, can sometimes unwittingly contribute to symptoms like disorientation and frustration.

Environmental changes are rarely high on the priority list when families are caught up in thinking about the person’s immediate care and support needs. Sadly, the knock-on effect of this lack of environmental awareness is family members, friends or neighbours gradually doing more and more for the person (and/or a crisis occurring), which can negatively impact upon those providing unpaid care and is even worse for the person with dementia.

In that utopian world where everyone has good post-diagnostic support - which I would argue is a human right - the person and their support network would be assisted to look at how the home is working for the person, with the end result being the creation of a more enabling environment (using the world-leading research from the University of Stirling as a benchmark), where the person’s independence could be preserved for as long as possible and their need for care and support reduced.

The home might be modified to include:

   Word and picture signage to help the person navigate around their home, and instructions to enable the person to operate household items (or even just to be able to make THEIR guests a cup of tea rather than the guests taking over and doing it themselves).
   Clear door and drawer fronts so that the person can see what is inside a cupboard or drawer.
   Colour contrasts across the home but particularly in the bathroom so everything isn’t white.
   A layout that reflects how the person currently moves around their home, and changes as the person’s needs change - for example, you might remove internal doors to avoid the appearance of barriers or the fear of what is behind a door when it's shut.
   Lighting that supports understanding of daytime (especially when it’s really dull outside) and nighttime.
   Technology that helps to support the person’s independence - a dementia clock, for example, could help the person know what the day/time is so that they can orientate themselves.
   Accessible and enjoyable outside space - for many people, this aspect of ‘home’ is more important than the building.

When ‘home’ moves

So what happens if there is no option and ‘home’ has to change? Care homes are often seen as prisons, but your own home can equally become a place of confinement, which has led me firmly to the belief that what imprisons people with dementia isn’t necessarily buildings, but the attitudes of those around them.

That really gets to the heart of why I talk about that Alzheimer’s Society statistic so much. I want staff to be challenged to think about what home really means for each person they are supporting, and to think about anything and everything that we can do to make the person’s current circumstances, which may not be of their choosing (my dad certainly wouldn’t have chosen to go into a care home) the very best they can be.

This can happen in a variety of different ways, but broadly speaking it’s about maximising the person’s choice and control all day every day, promoting and nurturing their independence, understanding and really embracing the person’s life story in a myriad of guises, and perhaps most significantly of all, validating the person’s sense of what their home is, why it’s important to them, and getting as close as possible to providing the happy feelings they associate with their concept of home.

The ultimate interpretation of ‘home’

That last point is vital, because for everything that I’ve said about the building and contents that we call ‘home’, it’s the feelings and emotions that come from the people a home is shared with (a childhood with parents and maybe siblings, a young adult life as a newlywed, or the home where a person brought up their children) that make up the ‘sweetness’ in the title of this blog.

In those bygone days the building itself wasn’t necessarily the safety and security, that came from the person’s mum and dad, husband or wife. The comfort came from the cuddles and love that was shared. The fun came from the laughter and mess of a young family. The personalisation came from choosing furnishings and decorating as a young couple, and the freedom to be ourselves came from being completely at ease with those the home was shared with.

Whilst that ‘sweetness’ may be associated with many years ago, we can ensure it is never airbrushed out of the person’s life today. After all, would you want your ‘home’ lost forever?

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Thursday, 19 October 2017

Why culture matters in dementia care

Last month saw the launch of the Dementia Action Alliance’s (DAA) ‘Seldom Heard Groups’ Campaign. The groups the campaign is focusing on are 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 Nijjarrecalling 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...
Beth x

You can follow me on Twitter: @bethyb1886