Terms of endearment – The ‘darling’ debate

A couple of months ago the Care Quality Commission (CQC) released a report detailing an inspection of a care home in Harrogate where the language used by staff when communicating with residents came under the spotlight. Care home staff had been using terms such as “sweetie”, “darling”, “handsome” and “love”, and the inspection team were concerned about these being “demeaning and patronising”.

Since then plenty of people have weighed in with their opinion on the use of terms of endearment in social care settings, and I’ve been fascinated at how polarised viewpoints have been on this issue. Some people feel such terms introduce welcome informality and infer kindness and compassion, whilst others have found them offensive and disrespectful.

Given that my dad spent the last nine years of his life in three different care homes, he and us as his family gathered plenty of experience in the different ways staff addressed dad. These ranged from the formal ‘Mr Britton’ and the less formal use of his forename, all the way through to calling him “uncle”, which was intended by staff as a term of endearment.

I can’t say what dad thought of the different ways in which he was addressed, since he never spoke to me about them or reacted differently depending on how he was addressed. I personally never had a particular issue with any of the ways in which he was addressed, which starkly contrasts with other usage of language that I really did have a massive problem with.

The term “change your nappy” when referring to changing dad’s incontinence pad was amongst the phrases I loathed the most, and something I touched on in my blog post R-E-S-P-E-C-T. This to me was a grossly inappropriate use of language, and interestingly given the largely overseas workforce was a phrase actually used by an English care worker, so it certainly wasn’t a case of inadvertently misunderstanding the meaning.

Ultimately of course, all use of language comes down to what the person being spoken to feels comfortable with. I can’t imagine many older people in a care home would want their incontinence pad to be described as a nappy, but I guess it’s possible that some people MIGHT find that phrase familiar to them and be comfortable with it. I just felt my dad would be extremely offended and it was entirely inappropriate for him.

The same of course is true with terms of endearment, and this was the point so clearly illustrated in the fallout from the CQC report. Whatever someone prefers to be called is what they should be called - individual preference should override any viewpoints staff or indeed inspectors have. But the key point here is choice. 

It’s vital to prominently document how someone likes to be addressed from the moment they enter any type of residential care. This should be known by all staff, including any agency staff from the beginning of their shift, and we should never make assumptions. Shortening forenames isn’t something everyone will like – a gentleman called Jonathan might not want to be called John. The formality of calling someone Mr or Mrs may make them feel uncomfortable… or it may be exactly how they want and expect to be addressed. A person may prefer the use of a middle name, or even prefer a name that isn’t associated with their given name at all.

Then of course there is this tricky area of terms of endearment. In some parts of the UK, especially more northern parts, terms of endearment are commonplace amongst the population and are likely to be heard everywhere from shops to hospitals, with many people finding them reassuring and comforting, like the familiar taste of regional foods or beverages.

But they will never be to everyone’s liking. I’ve been called “love” and “darling” before and not minded, but I wouldn’t appreciate being called “duck” for example. Care providers, no matter how heavy their workload, have to ensure that all individual preferences are catered for and not strayed from, no matter how easy it might be for staff members to revert to what is most familiar to them. In the end, it’s all about person-centred care and that begins from the very first interaction.

Of course staff will never get it right all of the time, that’s human nature and a rare slip of the tongue is forgivable, but it is perhaps worth reflecting on the following. Many people who move into residential care feel they lose a huge amount when they make that move, but to lose your right to be addressed as you would want to be is something no one should ever lose.

Until next time...

You can follow me on Twitter: @bethyb1886

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Caught on camera

CQC’s launch of their document ‘A fresh start for the regulation and inspection of adult social care’ has created a barrage of debate. Amongst the raft of changes and proposals to overhaul the inspection and regulation of care services for adults are some ideas that CQC want to discuss with the public, including the “Potential use of mystery shoppers and hidden cameras to monitor care”. Concerns have been raised about whether hidden cameras are ethical, if their use would be legal, and whether we even need them.

To begin to illustrate my views, I want to pose a scenario to you:

A man of 84 is living in a care home. He has advanced dementia, and requires all of his needs to be met by a skilled team of care professionals, assisted by his family. His family are not present 24 hours a day, so much of his care is provided by different care professionals. His family become concerned for his welfare when the ownership, management and staffing of the home changes . The home is frequently short-staffed and running on agency staff (who don’t even know who each resident is). The man becomes more frail, has more infections, begins to develop pressure sores and is being kept in bed more than normal. This is also true of other residents. The few remaining regular staff, including the man’s keyworker, express concerns about the way that they are being instructed to care for the man and how new staff are caring for him. The man is eventually admitted to hospital with pneumonia after aspirating on his own vomit five times. The hospital are so concerned about the condition of the man that they make him the subject of a safeguarding order. He never fully recovers from the pneumonia and passes away four weeks later, less than two weeks after his 85th birthday.

That man was my dad.

I repeatedly raised concerns about my father’s care with the care provider after the changes in ownership, management and staff. Eventually I had to resort to phoning CQC three times before they would take my complaint seriously. They inspected, but then took two months to produce a report. It was too late for my dad. His keyworker, a wonderful care professional who had diligently looked after my father for eight years, was as heartbroken by the way in which the care deteriorated as we were. Indeed that care professional, and his colleagues who had  assisted with looking after my dad for many years, found alternative employment and left the home: they simply could not stand to deliver care in the way that the management wanted it delivered.

On the night my father aspirated on his own vomit, we believe he was put to bed too early and given a milky drink in bed without being properly upright – all of those actions going directly against our wishes and the recommended advice for his care from doctors (the management made their own care plans without our consent). The doctors treating my father at the hospital didn’t believe he would pull through the night – aspirating on your own vomit is a bit like pouring acid into your lungs they said. Imagine how that felt.

We will never really know what happened that night, because despite asking the staff on duty, no one could explain. I dearly wish we had had a hidden camera in my father’s room that night, and indeed in the months leading up to that fatal incident. I know it would have proven the poor care my father was subjected to, and it would also have proven some of the good care people like his keyworker provided, often fighting against the management to do what was best for my dad.

Do I think cameras should be routinely installed into care homes? No I don’t. But potentially they do have a value in certain specific circumstances when there are grave concerns for a person’s welfare that only indisputable footage can prove. Currently surveillance is limited to the few families who have installed hidden cameras to prove that their relative is being abused, or places like Winterbourne View that needed Panorama cameras to expose the appalling treatment being meted out.

It must be remembered that some people don’t have a family to monitor their care. People with dementia, learning disabilities and other conditions cannot always articulate what is happening to them. Proving how injuries are sustained can sometimes be one person’s word against another’s. Poor care many only really come to light following a crisis point when a person is admitted to hospital in a condition that no amount of treatment can cure, or it many only become evident on investigation after death.

I want to pose another scenario to you:

A lady living with dementia in a care home, almost completely deaf and blind, begins to lose a dramatic amount of weight and is always thirsty when her family visit. The family suspect she isn’t being fed enough. They often find drinks that have been left out of her reach, and suspect that staff aren’t communicating with her appropriately. She eventually passes away at a weight that would be considered severely malnourished.

I knew this lady, and her family agonised over what happened to her – a camera would have given them answers, and potentially ensured she received better care.

Dignity, privacy and respect are all vital in any care setting, but there is nothing dignified or respectful about elder abuse or premature death from negligence that hides behind a veil of privacy. Such practices – that are in the minority - must be rooted out: they taint the vast majority of wonderful care that is being provided. A hidden camera can prove or disprove allegations and suspicions, and it could potentially work in many different ways. For example: It can prove that a care worker is acting inappropriately. It can prove when a provider is negligent in not giving their staff the equipment or training needed to perform a task or to keep a person safe. It can assist a care provider to root out poor practice that they suspect an individual employee of but need to prove. It can show if a person receiving care has had a harmless accident or is self-harming. It can provide evidence if a family are being abusive, either towards their own relative or towards staff (yes, it does happen).

Cameras could also be helpful in certain specific circumstances in people’s own homes, where they are receiving home care or care from a family member, friend or neighbour.

Consider this scenario:

Two elderly sisters live alone at home. A neighbour ‘befriends’ them. That neighbour manages to persuade them to sign a Power of Attorney and then gets control of all of their money. She tells them that they are now so poor they cannot afford heating. Professional carers often come in to find these ladies cold and hungry. One of the sisters develops hyperthermia. Eventually they end up in care, virtually penniless.

I knew these ladies – could a camera have helped them, and brought the person who prayed on them to justice?

Clearly there are huge ethical, moral and legal issues with the use of cameras in any setting, particularly if those cameras are hidden. Whether a policy allowing the use of hidden cameras in adult social care will ever be created and implemented isn’t yet decided – this is merely an idea that has been put into the public domain for debate. Personally I welcome healthy discussion on any proposal that could help to safeguard our most vulnerable people and stamp out elder abuse. I don’t believe sensitive use of such cameras in a minority of isolated cases would undermine the morale of social care professionals. In my mind, those who are providing good care have nothing to fear.

Until next time...

You can follow me on Twitter: @bethyb1886

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Why, oh why, oh why?

Incensed. Appalled. Outraged. Indeed there are a plethora of words to describe how I felt on hearing reports of a rise in suspected cases of elder abuse in England, but I’m not sure any of them accurately do my feelings justice.

What I cannot, have never been able to, and will never be able to comprehend is what motivates anyone to commit such abuse. Of course you could equally argue the case for the abuse of children, women, the disabled and indeed any person, or any animal, in a vulnerable position – it is never, ever justifiable, and the perpetrators should be held to account for their actions.

Why we have a rise in possible cases of elder abuse is, I fear, about more than just a growing older population or the opportunism some may see in that. I would suggest it has as much to do with the societal approach to ageing, mostly because I see and hear so much in everyday practice that constitutes the foundations of elder abuse. The demeaning of older people, the view that they are a drain on resources, complaints that they are a sector of society that doesn’t ‘contribute’ and that they are simply ‘in the way’.

One of the great arguments against legalising euthanasia is the concern that it would lead to many older people being pressured into ending their lives simply because they are at a stage of life when they need more from ‘the system’ than they are currently putting in. This of course conveniently ignores all the years they did ‘put in’, worked hard and contributed to the defence and prosperity of the nation, not to mention parenting and grand-parenting the younger generations we have now.

In our desire to measure so much in monetary terms, we lose sight of the priceless contribution that our older generations bring to their communities – their wisdom, their experiences, their link to our past, their guidance in the present, and their observations on our future. It may be really simple stuff, but it is incredibly important if we are ever to regain the community spirit that we’ve lost, and to teach our younger generations about humility and respect.

I was bought up within an environment that steadfastly instilled in me respect for my elders. Perhaps this was because my parents were older when they had me (my mum was 40), or because we had strong ties with older relatives throughout my childhood (including the great sadness of my grandmother passing away). Or maybe it’s a simple case of engendering a system of values – to speak when you are spoken to and for children to be seen and not heard (my dad’s favourite).

It probably sounds really old-fashioned, but it worked. Knowing your place as a child within your family means that as an adult you have a grounding that no amount of money can buy. I’m a staunch defender of our elders not because my dad lived with dementia for 19 years and became one of those very vulnerable older people, but because my mum and dad taught me about the value of generations and the place of each generation within the overall tapestry of life.

We will all be old one day if good health prevails upon us, and how do we hope to be treated? As a piece of dirt on a younger person’s shoe, or as a valued and respected member of the community? Moreover, for anyone with children, how do you want them to be treated when they get older? Would you be prepared to tolerate them being neglected or physically or mentally abused simple because they cannot fight back?

Ultimately the point about elder abuse is that it could happen to any of us. It isn’t something that only happens to other people. None of us know what care and support needs we may have as we grow older. We may hope to never rely on other people, either within our own family or professionals who are otherwise strangers, but we just don’t know.

Amongst the majority of wonderful care that my father received, he was subjected to treatment which in my mind was undoubtedly abusive, a view backed up by doctors when he was admitted to hospital with aspiration pneumonia (he had aspirated on his own vomit five times) and pressure sores. My dad became the subject of a safeguarding order, and that was despite having an actively involved family who tried to stop the dreadful treatment meted out to him. He never fully recovered and passed away four weeks later.

We know from the scandals at Mid Staffs and other hospital Trusts that abuse isn’t just confined to care homes, and the exposé TV documentaries on bad care only highlight certain individual organisations.  I don’t believe that the cases of abuse in people’s own homes that hit the headlines tell the whole story either. My greatest fear is the abuse we don’t hear about; the people who are in pain, soiled, sworn at, neglected or isolated. The people who are fearful of having enough money to pay their bills because someone has conned them. The people who are being told they are worthless and should just die.

Every single one of those people needs us. They need strong voices to highlight their plight, a person to talk to who will help them, effective whistleblowing procedures, a robust system of regulation from CQC to ensure that they are safe, well cared for and happy, and from everyone who lives in their community, respect. It costs nothing, but if it was engendered within all of us, elder abuse and indeed all forms of abuse would never exist.

Until next time...

You can follow me on Twitter: @bethyb1886

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UK readers can get more information on Elder Abuse from Action on Elder Abuse: http://www.elderabuse.org.uk/ or call the Age UK helpline: 0800 169 6565

A good end-of-life

Given our aversion to talking about death and dying, the idea of a good end-of-life isn't something that has been widely debated. Yet for people who are diagnosed with a terminal disease, like dementia, knowing what would represent a good end to their life, when that time naturally comes, is pivotal to providing the care that they and their family deserve.

To me, there are two key points. Firstly, the natural element. One of the many issues that has arisen from the use of the controversial Liverpool Care Pathway (LCP) in the UK is the fact that many families believe that their loved ones were put on this pathway before they were ready to die. Prior to my father’s end-of-life, I had fretted for years about how we would know when his time was coming and what it would be like. Having now lived through that experience, I understand the crucial differences in a person’s condition that can provide a clear indication that they will soon pass away.

Given how often care professionals see people in the last stages of life, it seems extraordinary that anyone would misjudge this situation. Of course as we now know, the LCP has become tainted by suggestions that it was actually used to hasten death, free up beds and save money. Indeed, with hospitals having been given financial incentives to put patients onto the LCP, it is clear that the whole premise of trying to do good for patients at the end of their life has become lost in favour of very dubious motivation.

Having established that someone is naturally dying before implementing any specific end-of-life care practices, the second most important element is ensuring that their end-of-life care is exactly what all of their previous care should have been – person-centred, compassionate, dignified and respectful. One of the reasons I wrote so candidly about my father’s end-of-life was precisely because I felt that he had what I would describe as a good death. The manner in which he was cared for, and we were cared for as his family, is I believe an example to everyone.

Clearly we were fortunate in being able to find my dad a bed in a care home that were prepared to look after him for however long he had left. It is likely to be far more difficult, and potentially impossible, to provide the same experience in a hospital. Hospices are wonderful, but many are not prepared to admit people who have dementia due to concerns about how they would manage the disease.

In truth, these concerns are generally not as great as hospices might imagine. Someone who is living with dementia and nearing the end of their life is unlikely to be disruptive, aggressive or exhibiting other behaviours that they could find difficult to cope with (for example walking). Communication difficulties are likely to be severe, but I would expect hospices to have extensive experience in coping with these given that medications and the effects of all kinds of terminal diseases are going to affect communication for many of their patients.

As we all know, however, even if more hospices were prepared to admit people with dementia at the end of their life, there aren’t enough hospice beds to cope with demand. This then only leaves someone’s own home, a care home or a hospital as options. I’m sure that most people would want to be in their own home, but often primary care, out-of-hours care and palliative care services are not able to provide the help and support required. Having a family who can care for you is an advantage, but they will undoubtedly need some help from health and social care professionals within the community, and most experts in palliative care are already overstretched.

Our experience of care homes is that most did not want to take my dad when he was languishing in a hospital bed with extensive needs, so I count our blessings that one home took a very different view. For people who are approaching the end of their life and currently living in a care home, the experience can often be that the home become fearful of providing palliative care, and will therefore call an ambulance to take the person to A&E when severe pneumonia, UTI’s or other grave health problems set in.

In theory, care homes should be well placed to provide end-of-life care in an environment that is far more homely than a hospital. To do this, however, requires liaison with other health professionals (GP’s, specialist palliative care nurses etc), on-going, honest and transparent discussions with families, and agreement from all parties on a way forward. I believe that this is achievable (my dad's end-of-life care being an excellent example), but it would require specific training across the board to empower the professionals charged with providing this care, and much greater understanding and knowledge on the part of families. The Gold Standards Framework is an excellent starting point, but it isn’t mandatory for care providers.

I am certain that most people living with dementia, and their families, would not want to be in a situation where the person with dementia is taking their last breaths on a trolley in a busy A&E department, just because our health and social care services cannot respond to their end -of-life care needs more compassionately and appropriately. Likewise a busy hospital ward, as a result of being an inpatient for far longer than necessary and picking up numerous hospital-acquired infections along the way, is also not a good model of end-of-life care.

I think that the principles behind giving people a dignified death without painful interventions and excessive and aggressive treatments is in essence to be applauded. In the end that is exactly what my dad had and I can say that it was a peaceful and loving end for him. Clearly, however, what has happened with the usage of the LCP has often gone against all of these objectives, largely due to failure of implementation and the utterly inappropriate use of incentives to put people onto it.

Dementia is a progressive and terminal disease, and as such, ensuring people who are living with it can have a good end-of-life when that time comes is vital. As a society we need to start having honest, open discussions about what a good end-of-life really means and how that is achieved. We need to encourage and facilitate more widespread advance care planning, and ensure that health and social care is able to support people to have what they have said they want at the end of their life. For those without advance care planning in place, we need to ensure that their end-of-life care is as individual to them as possible, reflecting everything we know about them and any expressions of wishes.

We need to look at the alternatives to dying in hospital and how we fund those to ensure that no one is left worrying about monetary issues at such a sensitive time. And finally, for people who will inevitably die in hospital, we need to find a successor to the LCP that puts patients and their families at the heart of that end-of-life process to ensure that a good end-of-life is a reality for all. We will have succeeded when taking care of the dying is seen as a privilege for the living.

Until next time...

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Advocacy and dementia – A vital partnership

Dementia poses many challenges for those living with it or those caring for someone with it, not least getting their voice heard. Our wishes, views, needs and preferences are fundamental to our lives, but dementia can begin to erode our ability to articulate those clearly, and as the disease progresses, make it impossible to maintain a clear say in the decisions that govern our lives without some form of assistance.

For many people, this will involve their family stepping in. This was certainly true in my father’s case; we spoke up for him and his interests every day during his years of living with dementia. But what if your family are not willing or able to stand up for you, disagree with your vision for your future, or indeed you don’t have someone close to you who you trust to articulate what you are struggling to? Equally what if you are caring for someone with dementia and simply not being heard by the professionals who are taking decisions that directly impact upon you?

This is when advocacy comes into its own. An advocate is there to provide that voice for you. They are not there to offer their own opinions or second guess yours. Their role is to form a professional relationship with their client, and through that gain an understanding of what that person wants from the care they receive and the decisions that influence their life. Having done that, they are then tasked with imparting those views to ensure that every aspect of that person’s life and care has their needs and wishes at its heart.

People with dementia and their carers are at huge risk of marginalisation, leading to information being withheld, dignity and respect being eroded, decisions being taken for them and without their knowledge or consent, discrimination, inequality, difficulty in accessing health and social care services, loss of independence and opportunities for personal growth, and a general withdrawal from participation in all aspects of their life.

For a long time it was believed that people with dementia were stupid or in need of having their lives controlled. With the Mental Capacity Act and the Deprivation of Liberty Safeguards came a complete change of emphasis, with the prevailing view now being that everyone has capacity until it is proven otherwise.

This has given rise to far greater reliance on advocacy services, simply because we have finally acknowledged that people with dementia must have a voice, and if it can’t come from their lips then they have every right for it to come from someone else’s. Just how do you become an effective advocate for a person with dementia though?

Ideally advocacy is a service best sought in the early stages of someone’s dementia. If the person has had a diagnosis and is prepared to face up to the reality of having a progressive and terminal disease, then they can seek to make plans for their future. This would include considering who will speak up for them when they are no longer able to articulate their wishes as they would like to, and ensuring that if that person is to also be their carer, that they are properly supported in their role. Of course in reality, advocacy is often brought into someone’s life far later, and as a result a very skilled advocate is needed to ensure a correct representation of views that may be very difficult to ascertain by this stage.

The nature of dementia doesn’t make advocacy easy. The disease doesn’t have a rule book, presenting itself differently with each individual, and the fluctuating nature of symptoms can pose significant challenges. One day someone can appear far more lucid than the next, their opinions, views, behaviours and memory can change daily, as can their ability to make decisions, and obtaining consent for support may need to become a constant requirement.

Gaining an insight into how someone with dementia expresses themselves, and judging their level of understanding takes time and patience. Looking at someone’s history and any previous expressions of wishes are also key factors in navigating such a minefield. How much capacity they have on any given day can ebb and flow, and good communication skills are vital to ensure that an advocate is as effective and true as they can possibly be as the voice of someone with dementia.

Being an advocate is a role of huge responsibility, but also huge privilege. Giving a voice to someone who is losing theirs through dementia is a highly rewarding job, but also an increasingly vital one. With more people than ever before living with dementia, and having known people in my dad’s care home whose next of kin was a social worker or a solicitor, I have a huge appreciation for the need to ensure that everyone, no matter what their background, can get their voice heard. To put it simply, in good dementia care advocacy should come as standard.

Until next time...

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We are all individuals

Of all the buzz words and phrases around in health and social care at the moment, ‘person-centred care’ is arguably one of the most important. It might sound like a cross between trendy language and clichéd ideas, but there is a huge amount of value and importance in what person-centred care represents, and it is fast becoming an approach that cannot be ignored by anyone involved in health and social care.

The essence of person-centred care is to treat each person as just that, a person. Not as an illness, a collection of symptoms, a problem that needs solving or as someone who is seen as having no ability. Person-centred care is about understanding each person’s unique qualities, interests, aspirations, preferences, abilities and needs and acting on that understanding in everything that you help that person with.

It may sound obvious, like perfect common sense, but for a long time a one-size-fits-all model of ‘care’ has been the norm, to the detriment of those on the receiving end of it. For anyone living with any condition, illness or disease, the holistic approach offered by person-centred care is a hugely positive step, but for someone who is living with dementia I would go as far as to say that person-centred care is a vital form of therapeutic treatment that can alleviate symptoms and promote quality of life. It can also make a massive difference to the life of a carer, because true person-centred care for your loved one will provide you with greater support and peace of mind.

I would like to think that person-centred care is about as far from the dreaded tick box culture as we can get, even if delivery of it can still be turned into a hugely paperwork-heavy exercise. Finally moving away from the idea that we can all be herded like sheep, grouped and homogenised, and actually recognising our differences and uniqueness can only be welcomed, providing of course it is accompanied by open-minded acceptance rather than discrimination or segregation.

For me though, the real heart of person-centred care isn’t about what we write down or input into a computer about a person, it’s about our interaction with them. It is easy to record what makes someone who they are, but adjusting how we interact with them is much more difficult. I don’t believe we are naturally conditioned to celebrate individuality, making it far more difficult to begin that process in our professional careers.

From an early age, our education system groups and trains us to follow a curriculum and examination process that is about everyone thinking and acting along the same lines. Person-centred care challenges that and tells us to toss out the textbook because each person has their own rule book, and you won’t have read each one of those at college.

Person-centred care means losing the safety net of treating everyone the same and using your own initiative, instincts, empathy and understanding to connect with that person and appreciate who they really are. Within every professional those qualities will differ, making person-centred care the ultimate unknown quantity. This in turn explains why some professionals and organisations deliver it so well, while others struggle immensely.

From a professional’s point of view, person-centred care can mean supporting someone’s wishes even when you don’t agree with them, helping them to do and achieve things that you might not find interesting or even worthwhile, and working at their pace rather than at yours. It can, however, also provide the greatest satisfaction and fulfilment in your life. Knowing you have cared, supported and enabled someone to be who THEY really are is an achievement unlike any other. 

From the point of view of someone receiving care, it is about taking control, having the security of knowing that you matter, having the peace of mind that you can be supported to live how you want to, and experiencing dignity and respect at all times. Person-centred care should remove worry, promote independence, give hope and positivity, and make each individual feel like the special person that they are.

In essence, none of this involves a direct cost implication so it should be popular with health and social care providers, but in reality delivering person-centred care needs people. Only a dedicated, compassionate, understanding person can provide person-centred care. It can’t be done by a machine, and it requires that most precious commodity of time.

As a result, person-centred care hasn’t been widely implemented. In fact in relation to my father, I would say that from the professionals involved in his care it was sporadic at best. Where paid carers were concerned it was only consistently demonstrated by his keyworker, and overall what made dad’s care person-centred was his family. We put dad at the heart of everything, always caring for him with his wishes, preferences and interests enshrined in what we did. For people without families, however, the story is often very different.

So how do we persuade health and social care providers to abandon models of care that assume we are all the same, and actually recognise our individuality and uniqueness? I believe it comes down to public pressure and understanding of this subject, a sustained drive towards new ways of thinking and working, meaningful training programmes, and championing those who are already implementing person-centred care and seeing the benefits of it.

In a world that is obsessed with evidence-based working, sometimes you cannot quantify the real depth of appreciation and wellbeing that comes from person-centred care. The inner relief, happiness and comfort a person may be feeling cannot always be articulated or measured, but that doesn’t mean we should abandon person-centred care in favour of one-size-fits-all. If you ever doubt the wisdom of providing care that supports someone to be exactly who and what they want to be, ask yourself this: if the roles were reversed, what sort of care would you want?

Until next time...

You can follow me on Twitter: @bethyb1886

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My dementia wish list

Welcome to 2013, the beginning of another new year and no doubt another set of targets for the tick box culture in health and social care. 2013 promises to be an important time for dementia, with the need to build on the awareness generated in 2012 and put all of the promising words and rhetoric into action, to bring real and lasting change to the lives of people with dementia now and in the future.

Currently there are over 800,000 people with dementia in the UK, and over 35 million people worldwide. For me the greatest voice in dementia awareness, education, policy and implementation in 2013 must be theirs, their families and carers past and present – people with first-hand experience of what dementia is really like and what is really needed to improve the lives of those who are living with it.

As someone whose dad had dementia for 19 years and who sadly lost him to it in 2012, here is my dementia wish list for 2013:

(In no particular order)

1)      Dignity and respect for all
It costs nothing and must be the foundation of all aspects of dementia care.

2)      Understanding
People with dementia are still people, with thoughts, feelings, emotions and sensitivities. Understanding what living in their world involves is vital to improving their quality of life.

3)      Personalisation
Treat each person as an individual and tailor their care to them. Appreciate their past, support their present and help to make their future the best it can be.

4)      Compassion
Kindness costs nothing and yet changes so much, not just for the person who is being shown compassion but for the person giving it. What is good for people with dementia is good for all of us.

5)      Opportunity and diversity
We all want a sense of achievement and people with dementia are no different. They still want to have the chance to do the things that they love, or try new hobbies and activities, and they should be encouraged and facilitated to do this.

6)      Belief and positivity
There is so much we can do to improve the lives of people with dementia so that this disease is no longer seen as a black hole of nothing, stigma is reduced, and people are less fearful about admitting that they have dementia symptoms and need some extra help.

7)      Fairness and independence
Our modern world of self-service and technology can be baffling for people with dementia. The systems of daily living must be flexible to accommodate people with dementia so that they can remain as independent as possible.

8)      Involvement
Don’t ignore people with dementia, talk about them rather than with them or assume that they have nothing to contribute. Remember the saying ‘Nothing about us without us’.

9)      Embracing experience
Society can be very dismissive of older people, especially those with dementia, and the contribution that they can make to their communities. As a result many older people are made to feel that they are an unwanted burden. Yet they are a great asset to their communities and can teach us so much – it is time to listen and learn.

10)   Action, not just words
So much was said about dementia in 2012. Indeed the disease has never had such a high profile. This must not just be a short-lived ‘trendy’ topic to dip in and out of however. The problems people with dementia have within the health and social care systems and wider society are reflective of the issues troubling many others. Sustainable long-term solutions to issues ranging from social care funding to care in hospitals, standards in care homes to supporting people within their own homes, diagnosis to end-of-life care are all desperately needed and long overdue.

Until next time...

You can follow me on Twitter: @bethyb1886

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Sense and simplicity

One of the many positive things to come out of the increase in dementia awareness is the focus on how we provide the best possible care for people living with dementia. The importance of training for everyone involved in dementia care has never been higher on the agenda, and there is a huge desire to equip people from all backgrounds with the skills and knowledge needed to enhance quality of life for everyone with dementia, but what does good dementia care training really involve?

So many people ask my advice on dementia care, not just from a personal standpoint but also from a professional and business point of view. My answer is always the same – keep it simple. I am not a fan of complex theories, extravagant ideas or novel concepts – everything I have ever seen work best for my father and numerous others living with dementia is simple, down-to-earth, logical care that focuses on the individual, their personality, passions and interests, keeping their past constantly in mind, living in their present, and giving them the best possible future.

Underpin that with strong bonds between the carer and the person with dementia, deliver that care with compassion, empathy, dignity and respect, and voilà – you have good dementia care. Nothing fancy, nothing ground-breaking, just the implementation of the obvious, or maybe it is only obvious to me because my father had dementia for so many years and during that time I saw some of the very best, and worst, dementia care.

Those who are living, or have lived, through a loved one’s dementia journey are often the best educators. We notice what others ignore, and having felt the whole range of emotions - and in my case seen dementia from the very beginning, through numerous stages and symptoms over many years to those final days of end-of-life care - you develop an acute sense of how to nurture someone through their dementia journey.

That feeling for dementia is what really needs to be communicated through modern-day dementia training – teaching the mechanical nuts and bolts of care is no longer enough. What does not need to happen, however, is for it to be packaged up in jargon. Carers do not need to be bombarded with new-fangled language to identify a simple aspect of good care. For example, at a recent event I spent the best part of half an hour listening to a very animated presentation on what amounted to continuity in care, where the people presenting the session managed to make the idea of having the same carer regularly looking after a resident that they had formed a bond with sound ground-breaking. Yet over 8 years ago, as my father was settling into his first nursing home, he developed a friendship with a particular carer who was then made his keyworker and remained as such until that carer left, just a few weeks before dad passed away. Not so much revolutionary as the simple application of observation and sense.

I sometimes wonder if that long-standing joke about common sense – that sense is in fact no longer common – actually has a lot of truth in its jest. I suspect that in this drive to be technological and futuristic many people feel that you can only successfully convey a message if you package it up to such an extent that you ask your audience to play a never ending game of pass the parcel. Where care is concerned, however, front-line staff simply do not have the time to unravel ideas – you need what you are being asked to do to be logical, natural and above all else, effective.

Caring for people with dementia can be a very rewarding job. When you understand how dementia can affect a person, why they do what they do and how you can make every interaction with them meaningful for both of you - whether you are passing their room, feeding them a meal, giving them a bath or playing a card game - work becomes pleasurable, the giving and receiving of care happens in an atmosphere of friendship and mutual trust, and a care home becomes a loving community of like-minded people all working towards common goals.

My advice to carers? I cannot stress enough the need to personalise everything that you do for a person with dementia, make it compassionate, and be dedicated in your application. Do this and you will not only serve the people who depend on you well, you will also have the satisfaction of knowing that you have wrapped up the life of someone vulnerable in a bespoke security blanket that brings with it warmth, protection and love.

It is not a one-way street, however. The best, most committed and caring staff can be worn down in hospitals, care homes or by care companies that do not appreciate the need to allow their staff to have the time to work effectively. Good care is never rushed care. Teamwork should involve everyone in looking after a person with dementia, from the person themselves and their family to every staff member. An inclusive care home, where everyone feels valued, whether they are a staff member, a person with dementia or a visitor, is a happy home. Finally, for any employer looking to give their staff the most effective training in dementia, remember those guiding principles of sense and simplicity. When both are commonplace everyone is nurtured and flourishes.

Until next time...

You can follow me on Twitter: @bethyb1886

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R-E-S-P-E-C-T

Having dementia should never change the way someone is viewed or respected, yet sadly it often does. Many people are unable to see beyond the disease to the person within, and as a result, it is frequently considered acceptable to treat someone with dementia in a way that you never would another adult of the same age who is not living with dementia.

During the years my father spent in care homes I saw practices and heard remarks that I found highly disrespectful and degrading. Very rarely were they ever directed at my father in our presence, but when we were not there you can imagine how conversations may have developed around him, and the impact that this had in his mind and his sense of who he was.

Issues around how we respect people with dementia are deeply rooted within personalisation practices encompassing an appreciation of the person’s life, choices, style and beliefs when they could express them freely. A simple example of this comes in how people living with dementia are sometimes dressed. When they appear in clothes that you know they would never be wearing if they were not in a care home with dementia, and even more so when those clothes are dirty or wet, it is disrespectful to the person, and a failing on the most basic level to appreciate the life that they had before dementia and the choices that they would make if they were able to.

In some cases these were clearly clothes that families had provided, and were very similar to what they themselves would visit in; a classic case of the younger generations imposing their style onto their loved one without thinking about what their loved one would want for themselves. Excuses are made about having clothing that is suitable for rigorous washing, and issues of comfort are also sited, but comfort is always achievable whilst maintaining dignity. Men in their 70’s and 80’s never grew up in a culture of tracksuit bottoms and t-shirts, so to find them wandering the corridors in such attire, often dirty and stained is, for me, disrespectful to the person and their heritage.

In their younger day you would most likely have found them in a collared shirt and tailored trousers; even my father, who never worked in an office and lived an outdoor life as a farmer, wore a collared shirt and tailored trousers. Those were dad’s choices when he was able to make them, so when I was making them my father was never seen in anything other than smart, roomy, comfortable chinos and a collared shirt; very washable, hard-wearing, practical and dignified.

Respect for the person and a steadfast maintenance of their dignity should never end when clothes are removed either. I have seen residents, male and female, wheeled down corridors from the shower room to their bedrooms, poorly wrapped in towels that leave them exposed, without anything to prevent them from passing urine or faeces as they are moved in full view of visitors, residents and staff. Indeed some staff members even found this amusing.

Other examples of lacking respect for people with dementia can come from how the aids they need, as a result of the physical decline associated with dementia, are referred to. The times I heard incontinence pads described as ‘nappies’ – perfectly fine if an 80 year old was 8 months old, but they are not. A man of 80 does not need his nappy changing, and to tell him he does, assuming that because of his dementia he knows nothing of what you are saying, is to assume far too much.

People with dementia have sensitivities, understanding that they cannot articulate, feelings, desires, and an inner voice that is most likely screaming to be heard. Using words attributable to babies and children is both disrespectful and also confusing to the person with dementia. They may well remember what a nappy is and wonder, as they look down at their fully grown body, why anyone would want to change a nappy on them.

There is a massive temptation, because many of the symptoms of dementia resemble a person regressing to often child-like behaviour or mannerisms, to treat an adult living with dementia as if they are now a baby again. However, just because someone calls for their mother does not make them a toddler, nor does the fact that they have incontinence or need help to be fed. Those physical symptoms are not who the person is, and they do not represent their thoughts or feelings.

Dementia takes so much from a person, but anyone who treats an adult like a child takes far more.

Until next time...

You can follow me on Twitter: @bethyb1886

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Loving our elders and betters

In the UK we are wonderfully good at valuing children and animals. Yes, there are isolated cases of cruelty and abandonment, but the vast majority show huge compassion towards the young, putting children at the centre of so much in society, and lavish copious amounts of love and dedication towards the animals we invite into our homes and share our lives with.

Which makes it all the more baffling that so many do not extend those same feelings of caring and nurturing towards our older people. It has been said that when an older person dies it is as if a library has burnt down. Yet that library, that unique contribution that the older generation can make to our society, isn’t valued, tapped into or appreciated anywhere near enough while they are alive.

When the library becomes more muddled, the books are put back into places they weren’t previously, or aren’t put back at all, and the knowledge can no longer get out in the way that it used to, the perception is often that the person is worth even less. They are easy to ignore or if we do recognise them they are often treated inappropriately. We do not support their independence enough, we do not encourage them to lead full, active and meaningful lives for as long as possible, we do not consider their feelings enough, we do not do enough to preserve their dignity or show them respect, and ultimately they are considered by many to be just one great big burden that is not wanted.

In our vacuous society that values appearance over pretty much every other quality, children are far prettier than older people; consequently society loves their youthful enthusiasm and naivety. Children can ask the same question ten times and adults accept their inquisitive nature, while older people with their endless stories (often repeated) are an endurance, and their more considered, slower movements remind their younger counterparts of the inevitable passage of time and the conclusion of life.

We do value some older people however. The Queen, for example, is clearly held in very high regard: no one thinks her contribution is any less valid now that she is 86. At the Jubilee Concert it could be argued that the older performers were given more prominence than many of the younger ones, and arguably their contribution had more gravitas, quality and popularity.

My appreciation for my ‘elders and betters’ as my dad would have put it, is partly from my upbringing, partly from my love of learning about days gone by, and partly from having had the most inspiring experiences in my life with people who were around a long time before I was, most notably my dad, even during his dementia. When his library was slowly shutting down, it was the discovery of the odd rare edition tome of knowledge amongst the jumble that made every previously unfathomable plot worthwhile.

Judging a person by their age, in a way that you wouldn’t because of their skin colour or sexuality, means you miss the fundamental joy of life. Those that were here before us had experiences we will never have, learnt things we really need to learn, and made their mark in the world that nothing can erase, including dementia. Their life’s work makes our world what it is, and our cognitive ability can more than make up for any deficiencies they may be experiencing if we treat every day like a walk in their shoes.

No one wants to feel unloved and no longer needed. No one need ever feel like that in a compassionate society that values all of its citizens. Our affection and care for our ‘elders and betters’, those with terminal illnesses, those who need our help and support, kindness and understanding is what puts the Great into Great Britain. Establish that attitude at the centre of dementia friendly communities and we will be getting somewhere.

Until next time...

You can follow me on Twitter: @bethyb1886

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Continuity is key

Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.

Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.

It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.

Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.

In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago.  Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.

Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.

That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.

Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.

At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!

Until next time...

You can follow me on Twitter: @bethyb1886

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