Inspiring end-of-life care

When I had my abstract, ‘End-of-life care: A very personal story’ accepted for oral presentation at the 2014 Alzheimer Europe Conference in Glasgow, I honestly never expected that it would receive a standing ovation from the audience. My presentation was included as part of the session on Palliative Care, and given the difficult nature of this topic I thought the audience would be small and very reserved. How wrong I was!

 

My presentation was inspired by my blog post of the same name published in 2012 that detailed my dad’s end-of-life care. The reason I chose to submit an abstract about it was purely because I feel that it is an outstanding example of end-of-life care being delivered in a care home setting, with the potential to inspire care providers as the very best of ‘best practice’. 

 

Whilst it may be intensely difficult for me to talk about, mostly because it brings back very vivid memories of great sadness at losing my dad, it is vital that professionals caring for people at the end of their life (whether those people have dementia or not) understand what good end-of-life care looks like, how to deliver it and why it is so important.

 

End-of-life care is emotive. It is something many of us instinctively steer clear of, and as I told the audience at the Alzheimer Europe conference, it is something I never really thought about until my dad needed it. What I also learned from other presenters in our session is that end-of-life care is something that many professionals aren’t very well equipped to deliver either.

 

There is a lack of training for healthcare professionals in end-of-life care, and training within social care settings is patchy and often inadequate. It’s not just about how to provide end-of-life care either; it also about how seeing someone through to the end of their life impacts upon the professionals who have provided that care.

 

The landscape in end-of-life care is complex, and full of stark realisations about facing up to our own mortality whilst providing the very best care to the person who is passing away. The overwhelming message from the Palliative Care session at the Alzheimer Europe Conference, however, was that despite the complexity of our emotional responses, the practical nature of end-of-life care is generally about simplicity and humanity.

 

For example, in my presentation I detailed the environment that my dad spent the last two weeks of his life in:

"Before dad’s arrival at the (care) home we had filled his room with his favourite things. Surrounded by his books, pictures and mementoes, with his much loved music playing and a lavender scent in the air, dad spent the last days of his life in bed, in his own cotton sheets and dressed in his own smart clothes. His bed faced a large window that looked out onto the garden where squirrels and cats played – a perfect scene for a man who had always loved animals."

I also spoke about the care he received from the care home staff, including a lovely soak in the bath, delicious puree food (up until the last 5 days of his life) and how he was regularly turned and changed, enabling his pressure sores to almost heal by the time he passed away. There was a special mention for the care home staff too:

"We could not have asked for professionals who were more caring, attentive and loving than those people were towards dad."

In these days of negative perceptions towards social care, and the people who work on the frontline in care homes up and down the UK, it is sadly very rare to hear good news stories, not least about end-of-life care, which is often fraught with disagreements and issues about palliative care being tantamount to ‘giving up’ on a person.

 

Yet good social care, and indeed good palliative care, can give immeasurable help and support to families when their loved one is nearing the end of their life. As I told the audience in Glasgow:

"An intensely sad time was made bearable for us as a family precisely because of the care given to dad. We felt huge relief that we no longer had to worry about whether dad was receiving the care that he needed, and the fact that he was so comfortable, calm and peaceful was testimony to that care."

What of the staff providing that care though, and their feelings? I could never have made this presentation without eluding to how they reacted to my dad’s passing, mostly because their humanity shone through in a way that for me should be celebrated:

"When dad was wheeled out of the home for the last time by the undertakers, the staff cried with us – for them, although losing a resident wasn’t a new experience, it was clear that every resident and their family matters. In that moment, their humanity might have ‘gone against’ protocol and practice, but it said so much about the care and compassion that underpins their work and which no amount of mandatory box ticking should ever be allowed to eradicate."

People who work in care jobs are human beings, with natural human emotions. Any attempt to turn them into robots who don’t have those feelings is basically asking them to remove the element of themselves that is most vital in providing the warm, caring, compassionate support that we would all want for our loved ones and ourselves.

 

That theme of humanity featured heavily in the list of the key elements of my dad’s end-of-life care that I concluded my presentation with, and that motivated me to write this blog. I would give each entry on this list equal importance and suggest that together they are viewed as part of a holistic package of end-of-life care: 

• Person-centred care
• Teamwork with families
• Attention to detail
• Well-trained and well-led staff
• Dignity and respect
• Kindness and compassion
• Personalised environment
• Time and patience
• Continuity of care
• Can-do attitude
• Multi-disciplinary team approach

These key qualities embody the simplicity I mentioned earlier, and also include one of the two main themes of the 2014 Alzheimer Europe Conference – Dignity. You would think that achieving dignity in the last days and hours of someone’s life is something that would happen routinely, but sadly not everyone is as lucky as we were as a family. 

 

I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.

Until next time...

You can follow me on Twitter: @bethyb1886

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15-minutes of shame

As a light was shone, yet again, on the huge inadequacies within our home care services as the issue of 15-minute visits hit the headlines, I decided to time my morning routine. Just how much could I as an able-bodied thirty-something, fairly fit and known to be someone who is constantly on the go, get done in 15-minutes?

Well, the answer was that I couldn’t get out of bed, make a cup of tea, cut, toast and butter my breakfast bread, use the loo, have a wash and get dressed within my 15-minutes. Something had to give for me to make my target, in fact quite a lot had to give in the end, as I like a shower rather than a quick rub over with a damp flannel, I needed to blow-dry my hair, and we’d run out of butter for the toast, so I had to pop to the shop.

It will come as no surprise to my family that it took me more than 15-minutes to get ready for the day ahead, but I hope it provides a sobering thought for anyone who believes that 15-minutes is long enough to fulfil the care needs of an older or disabled person.

This may be a person who will take most of the 15-minutes just to be helped to get out of bed. They potentially then have to choose between having a hot drink, something to eat, visiting the loo or having their incontinence pad changed or catheter checked, having the sort of wash that they would want (imagine never having the chance to enjoy a bath or shower because there is no time to help you with that), getting dressed and having their medication. Even something as simple as a hot-water bottle may not be filled in time to help keep you warm.

All that is before we even get onto the personal interaction (a chat in other words) that so many vulnerable and isolated older people crave, or the care worker addressing any unexpected problems of a personal or domestic nature (health problems, heating breakdowns or water leaks for example – things that cannot be ignored as they could put the person in danger). You cannot possibly even begin to tackle all of these needs within a 15-minute window – it is degrading to the person who needs care to even try, and insulting to the care worker to expect them to hit that type of target.

We need to understand that care isn’t a luxury. It’s not a Gucci handbag or a Ferrari parked on your driveway. It is the most basic, fundamental thing that we all need. Most of us take care for granted because we can care for ourselves without any assistance, and then we have children and naturally find ourselves caring for them without giving it a second thought.

Imagine trying to give a baby all of the care it needs in the morning within a 15-minute window. We have maternity and paternity leave not just so that parents can bond with their child and establish their family, but because that child will need a lot of care. Many adults need similar levels of care and support, in a different context of course, yet many councils believe that it is achievable within 15-minute timeframes.

Our social care system is broken at the point in which we place a stopwatch on care, and why is that stopwatch there? Time is considered to be a useful way in which to price work, and the price on care is being continually squeezed. Public money either isn’t available, or hasn’t been made available, to fund the increasing care needs of our ageing population who are living longer but with far more complex long-term conditions. Even most people who privately fund their care do not have a bottomless pit of money and are still subjected to 15-minute care visits.

I fear as a nation we simply do not understand what care involves. The complexities of it and the fact that it cannot be rushed. We don’t place enough value of the importance of human interaction and the joy and comfort that it can bring. We don’t see care as an investment a compassionate society should be making, but rather see it as an annoying drain on resources that must be cut back to the bone. We bypass basic human rights, we tolerate the fact that it is undignified and lacking in compassion, and ultimately ignore the reality that it’s dangerous to try and provide care within 15-minute windows. We effectively treat prisoners better.

Yes social care needs more money, and sadly I don’t hold the purse strings, but it also needs an overhaul. Councils, commissioners and care agencies need to look at themselves and be honest – are they really proud of the work that they do? Can they achieve what they expect the average care worker to achieve in 15-minutes, and have they ever put themselves into the shoes of the person needing care?

I challenge you – time yourself. How much can you get done in 15-minutes that involves your personal care, basic nutrition and hydration, and caters for your need to be kept warm? Then consider how mobility problems, reduction in your sight and/or hearing, or any other medical problem might affect your ability to fulfil those needs. Then factor in having someone to help you so that you can overcome the limitations your body places on you. Then check your watch. I guarantee that you will need far longer than 15-minutes to achieve this.

Until next time...

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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...

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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...

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Reflections on a life lived and a man loved



My dad

It seems hard to believe that April 2013 marks two very sad milestones for me and my family. This month will see us celebrating my dad’s birthday for the first time without him here. Less than two weeks later, it will be the first anniversary of his passing.

We often say how ‘time flies’ – well the first year without my dad has vanished in tears, memories, hopes, ambitions, achievements and still an almost overwhelming sadness that he isn’t here to share in my life. Without my dad’s courage, strength, love, determination and inspiration I wouldn’t be writing, blogging, speaking, advising and campaigning in the way that I am.

I’ve written before about my dad’s legacy. My desire to share his story - our story - and use the experiences we had together to try and make things better for the many families who are supporting a loved one with dementia. More than anything I wish you could all have met my dad – although I doubt he would agree, since he was generally a very private man who never sought the limelight. To me he was an example of dignity, grace, humour, kindness and insight into what living with dementia means that no words I could choose will ever accurately sum up. You just had to have known him, and I was very privileged to call him my dad.

I would like to think that the dates we will mark this month as a family will be more about happy memories and reflections on good times than dwelling on what we were going through this time last year, which still haunts my dreams and brings tears to my eyes. In truth, however, I really don’t know how we will feel and how the emotions will affect us. Bereavement is a strange beast – it can allow you to live in relative happiness one minute, then plunge you back into deep sorrow, longing for the person you have lost and taunting you with that precious wish for just one more day with your loved one.

I have thought long and hard about what losing a parent means, and how you can possibly move forward after that. When half of the partnership that created you, dictated your DNA, and in my case gave me a happy, stable and loving childhood filled with cherished memories, is taken from you, my view is that it breaks a bond that can never be replicated or replaced. The love you feel cannot be transferred to someone else. Losing a parent leaves you with an emptiness in your life that you will never fill.

As anyone who has had a good relationship with their parents will know, from an early age you come to rely on their guidance and wisdom, the care they show you, the support they give you and the unconditional love they surround you with. No one else celebrates your successes like a proud parent, and no one is ready to pick up the pieces when you make mistakes like a loving mum or dad.

I feel immensely sad that my dad won’t be by my side to see me make my way in the world, develop my career, maybe get married. If I ever become a parent, he will never know the joy of being a grandparent, and sadly for any child I may have they will only be able to learn about my amazing dad from me, rather than having their own relationship with him.

What dad’s passing will never take away, however, is the memories I have of him, including the many happy times we had together during his dementia. It cannot take away all of his qualities as a human being that he shared with me through his parenting, and it will never take away my pride in him and in being able to call him my dad. His honesty, integrity, desire to help humans and animals alike, care and compassion is something the world needs far more of than it currently has.

They say only the good die young. Well my dad was 85, to me just a number since he certainly didn’t look it. Without the toll dementia took on his body I am certain he would have lived far longer, so in my mind he was a mere spring chicken at 85 years young. Surprisingly, maybe, I am not angry or bitter at his passing – I honestly believe that he felt he had given me everything I needed to go on in my life, represent and share his values and make him proud, and so he was able to take his rest.

Having dementia often meant huge struggles for my dad, and I will never truly understand how he bore them with such resilience and good humour. I would like to think that one of his coping methods was the hope that he had managed to inspire his youngest daughter to make sure that his experiences were not in vain. The promises I made to him in the days before his passing should have reassured him of that.

Although my dad was the catalyst for what I do, the beneficiaries are all of us. I hope that my dad’s gift to society will be greater understanding, support, insight, and ultimately improvement in the lives of everyone who he has left behind.

Until next time...

You can follow me on Twitter: @bethyb1886

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Home alone

Imagine that every morning when you wake up, you are unable to get out of bed without the help of a carer. You might wake up quite early, needing the toilet or wanting a hot drink, but you live alone and rely on people who are paid to come and look after you.

You may wait many hours for help to arrive. It may never come if the home care agency don’t have enough carers on duty, or it may be much later than you expect because your carer has been delayed helping other people. In that time you may soil yourself, become dehydrated, or attempt to move around and end up falling, potentially breaking a bone and ending up in hospital, the shock of which, in someone who is elderly, could bring about premature death.

This is the reality that many single, vulnerable, elderly people with physical or mental health problems face every day. When care does arrive it can often be rushed, with the carer unable to give all of the help that is required. Imagine if you had to choose between being washed and dressed, helped to the toilet, fed or given your medication? You need assistance with all of those tasks, but your carer only has time to help with some of them, leaving you hungry or dirty as a result.

For many people who live alone, the carer that comes in to help them may be the only person that they see or speak to all day, and yet there is no opportunity for meaningful interaction. This is a system that is almost de-humanised, where the people who need care are effectively on a conveyor belt, and carers are operatives in a factory environment where output, rather than quality, is king.

Over the course of just a few weeks of home care you may see many different faces, each time having to try and explain (if you are able to) what you need and want. The turnover of staff is high because this is low-paid, often poorly trained work, where staff are put under immense pressure to meet deadlines, rush care, make stark and extremely unpleasant choices about what they realistically have time to do for someone, and where every shift leaves them feeling physically and mentally exhausted. Many carers often end up completing tasks in their own time, such are the time constraints enforced by their employers.

Morale is low, carers feel undervalued, and those who chose this type of work precisely because they genuinely wanted to care for vulnerable people feel utterly let down by a system that is run around two defining factors – the time on the clock and the money being paid to the home care provider.

Don’t run away with the idea that having home care is a cheap option for the most vulnerable, elderly citizens in our communities, because it isn’t. Universally however, most people would rather remain in their own home than move into alternative more supported accommodation or indeed into a care home. I would argue that everyone has the right to do that, whenever practically possible, and therefore in a compassionate society this should be supported, not just financially for those who need assistance paying for it, but from a cultural point of view as well.

The culture that defines how we care for older people in the UK is still one where we don’t value the person enough. As a society we don’t make provision for elderly people to exercise choice and be supported to do that, we cut corners because we think it doesn’t matter, we try to rush those who are naturally slower than they once were, we are incapable of seeing beyond ‘doing the basics’ and we ignore the need every human being has to feel cherished, loved, cared for, appreciated and listened to.

It can be very easy to blame the carers on the front line who have the day-to-day contact with our vulnerable elderly people, and there are certainly those within this line of work who should never be caring for anyone, least of all those in greatest need. But I believe that so much of what is wrong within the care system, and home care in particular, is about what happens within the companies that provide care and the authorities who commission it.

Many home care providers will say that they don’t get paid enough by councils (whose budgets have been squeezed in this area) to provide the care that people need. Councils will say that for the money they are paying, they expect far better for the people they are responsible for supporting. The real truth probably lies somewhere between these two viewpoints, but what I always find staggering in these debates is how the needs and the voices of the people who are on the receiving end of this care are generally never heard, and even more worryingly, those who are making the decisions often have no real appreciation of the situation that these people are in.

Of course we know of the cases, all too common, where home care has gone so catastrophically wrong that someone has died as a result of neglect. Yet all over the country, every day, neglect is happening, often not with immediately tragic consequences but with the slow-burn, saddening effect of reducing the lives of people who were once vibrant, hard-working, energetic and valued, into something that is a daily struggle to exist, a struggle that for many may not feel like one that they want to keep fighting for.

I couldn’t be a home care worker, simply because I could not cope with leaving people who needed me, at the same time knowing that if I stayed longer I let someone else down. It is an impossible situation. Home care is a vital resource that a compassionate society should value. Carers should be well trained, well paid and with enough colleagues to give our cherished elderly the help that they need in a time frame that they can cope with.

This is a job where you care for people with very high dependency and often multiple problems – it should be a profession with a far greater standing than it currently has. Ultimately care should be about helping people to flourish, live their lives well and feel happy and fulfilled. It should never be about losing dignity, being lonely, frightened, misunderstood, neglected and potentially an early death. If you offered anyone the ‘services’ in that last sentence, they would never sign up for them.

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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