Wednesday, 30 October 2013

Lessons from my virtual world

Earlier this month I experienced the Virtual Dementia Tour for the first time. Along with 24 people who work in social care, we went through the tour in pairs, with most of us then observing others on the tour. The results weren’t exactly surprising to me – we all experienced ‘dementia’ differently, and were united in feeling very unnerved by the realism of the tour.

Ours was just a snapshot of this product, and yet for many people it was a very long 10 minutes. I for one hugely disliked the constant noises I had to listen to and the way in which my senses became distorted. Reflecting afterwards, however, has produced perhaps even greater insight than those 10 minutes of ‘living with dementia’.

My naturally practical side immediately kicked in once I began the tour; I was determined to illuminate my new reality and then find a task to do. I couldn't hear the instructions at the start of the tour due to the noises being played into my ears, so I decided to set about accomplishing the only task I felt fit to perform, regardless of whether that was the task I was actually charged with completing.

Thus I began to fold clothing and linens, putting them into relatively neat piles, a task I regularly do at home so it came naturally to me. In the feedback I had about my tour, I am reported to have stomped around (I’ve been accused of doing that thundering up and down the stairs at home), made small noises (not uncommon for me, I’m the master of a whole range of small noises to voice everything from irritation to happiness), sniffed a lot (I’d only just got over a heavy cold), jumped at the loud noises (very common for me) and been territorial over the folding (again not surprising, I’m a bit of a perfectionist).

So, despite experiencing some very unpleasant sensory disturbance, I drew upon many of my natural personality traits and gravitated towards familiar tasks in order to cope, and apparently once I became immersed in the folding I was significantly calmer. So what do we learn from this?

Lesson 1) People with dementia are still people, they are not a disease or a raft of symptoms – their personality, likes and dislikes remain with them.

Lesson 2) People with dementia can still achieve things, and they want to achieve things.

During the tour, I did something that the trainer said only one other person in the UK had done since they had been delivering the training over here. I won’t tell you what it was in case you are planning on taking the tour, but in conversation with the social care workers afterwards, the feeling seemed to be that I’d acted differently to most people precisely because I’m not a professionally trained social care worker.

Lesson 3) Does the way in which we educate our professionals really reflect lived experience? Personal experience of dementia is invaluable in helping to produce care and support that is actually caring and supportive for people with dementia.

The fact that so many of the people on the tour found it eye-opening was a great testimony to the effectiveness of the product, but it does make you wonder how many other social care professionals lack insight into dementia and yet deliver frontline care and support every day.

Interestingly for me the tour, rather than being an insightful experience, was actually a reassuring confirmation that everything I’d believed in for my dad’s care, and that I now champion through my work, is very much best practice. Examples of this would be:

Lesson 4) Constant background noise, especially from TV’s and technology, is very unhelpful for making people with dementia feel calm and relaxed.

Lesson 5) Giving a stream of instructions to a person with dementia isn’t likely to produce a positive result, and you can apply that to constant direct questioning too.

Lesson 6) Anyone is capable of behaviour not normally associated with them when they are living with dementia, including swearing or aggression. Don’t take it personally.

Lesson 7) Dementia naturally produces a different reality. We should not try to correct that but instead embrace it.

Lesson 8) People with dementia shouldn’t be restricted any more than is absolutely necessary for their safety and wellbeing. We must avoid being risk adverse, and care should never be controlling or about imposing our will on the person with dementia.

Lesson 9) Dementia is a serious, multi-faceted cognitive disease that could leave anyone aimlessly searching in a permanently unfamiliar place – we must offer kindness, compassion and support to make that search more bearable. 

Lesson 10) Communal living can be very problematic for people with dementia, and where it is necessary, specialist care is vital.

Lesson 11) We are all different and must be treated as the individuals that we are.

My only real criticism of the tour is that it gives everyone the same experience, the only differentiation is in how individuals behave when subjected to that. So, whilst it undoubtedly gives a great insight into an example of dementia, those taking it must be mindful of the huge variations in the different forms of dementia, and how different symptoms can be magnified or reduced for each individual.

Lesson 12) Many of the sensory issues you go through on the tour are related to what you can see and hear. It should be remembered that some people will live with dementia but have very good eyesight and hearing, whilst others may be completely blind and deaf (as I wrote about here).

Lesson 13) We were all fit and healthy individuals, but people who are living with dementia could have a variety of mobility and health problems that again will affect their individual experience. Consider how problems like immobility, incontinence or dysphagia would greatly affect how a person lives with dementia.

Interestingly, the trainer said that most people completing the pre-tour questionnaire answered yes when questioned about whether people with dementia got the care that they needed. I replied no to that question both before and after the tour. Why?

Lesson 14) Ultimately, however much we think we know about dementia, and however great we think the care is that we are providing, we can always do better.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 23 October 2013

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...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 16 October 2013

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...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 9 October 2013

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...
Beth x

You can follow me on Twitter: @bethyb1886
LIKE D4Dementia on Facebook

UK readers can get more information on Elder Abuse from Action on Elder Abuse: or call the Age UK helpline: 0800 169 6565

Wednesday, 2 October 2013

Join the debate

Back at the start of 2013 I published a blog detailing My Dementia Wish List for the year. Ten months later seems an appropriate time to revisit some of these goals and, looking forward to the G8 Dementia Summit in London in December, explore some of the key issues in the world of dementia right now.



How do we improve care for people with dementia?

By providing care that is person-centred, dignified, respectful, understanding  and compassionate. By offering people with dementia the chance to achieve, promoting their independence, ensuring that we always involve the person and seeing their abilities before their disabilities.

How do we support family carers more?

Listen to carers and find out what they need as individuals. Don’t employ a one-size-fits-all model. Ensure all support is family and relationship centred, and recognise family carers as a vital part of the 'CareForce'.

Do we need more specialised training?
It is vital that we offer high-quality, specialised dementia training to both professionals and family carers alike to engender a new breed of 'CareForce'. With the right training we can empower the people on the frontline of care - in homes, care homes and hospitals - with the skills and understanding that they need to support people with dementia.

Is early diagnosis the key for families facing dementia?
Timely diagnosis (diagnosis that is at the right time for the individual and their family), with good support mechanisms in place to ensure that the person with dementia and their family can ‘Live well with dementia’ is the ideal.

How do we ensure people ‘Live well with dementia’?
By putting the person with dementia and their family at the heart of joined up health and social care. Supporting, caring, loving and living with dementia as a team effort within a dementia friendly community.

How can we learn from best practice in the UK and worldwide?
Research good practice, collate that and share it. Be bold enough to highlight what we do well, and equally speak up when care is not what it should be.

How do we improve end-of-life care for people with dementia?
By looking at what individuals want. Encouraging as much forward planning as possible, and having the care and support in place to ensure that those wishes are met with the utmost dignity and respect.


How do we make our communities more dementia friendly?
By investing in educational, awareness raising initiatives amongst all age groups, crucially promoting the point that dementia friendly communities are good for everyone. We must build on Dementia Friends and some of the great local projects that are proving very successful and share their best practice. It is also vital to ensure that commitments to being dementia friendly are met by every locality to avoid a postcode lottery.

Can stigma be defeated?
I believe it can. So many other highly stigmatised diseases and conditions have managed to emerge from the shadows. Dementia can be the next one.

How to we increase awareness?
Talk about dementia. Listen to personal experiences. Provide platforms to share. Be open and honest. If everyone touched by dementia made a commitment to speak about it to someone with no knowledge, awareness would transformed.


How do we improve treatments?
Through increased research, more documented evidence of what is working in practice and the sharing of good practice, innovation and intelligence. Ultimately, however, a good treatment for any individual is about finding what actually works for them, not what is supposed to work for them.

What options are there aside from drugs?
Examples of therapeutic non-drug treatments that have been shown to alleviate dementia symptoms include music, art, dance, reminiscence, aromatherapy, massage, exercise, yoga, light therapy, cooking, gardening, sensory therapy, sculpture, animal therapy, poetry etc. The list is endless, but it’s about finding what is right for each individual.

How do we prevent dementia?
With over 100 different forms of dementia, not enough is yet known about each form and how to prevent it. On a general level, following all the well-known advice about healthy diet and lifestyle, regular exercise, and ensuring that you have enough sleep can only be a positive step in trying to prevent a host of illnesses and diseases, including dementia.

Will we ever have a cure for dementia?
Science is advancing. One day maybe we will!


Can we cope with the predicted levels of dementia in the future?
Many of our health and social care systems are already overstretched. Far more capacity needs to be built into these systems in order to fully support people with dementia now and in the future. We will also need to look towards innovation and flexible care models to ensure that we can meet demand for services and expectations of what services should be providing.

Is technology the answer to improving care?
Technology is an increasingly important factor, and for people with young-onset dementia it has a particular interest as individuals in this age bracket are often leading very technology-rich lives at the point that they are diagnosed. Technology undoubtedly has its place, but it must never be seen as a replacement for human contact and interaction.

What can the G8 Dementia Summit produce?
Hopefully a really positive consensus on the way forward for research and care for people with dementia worldwide. It will provide an unprecedented platform on which to discuss the major issues facing professionals and families, and provide a much need focus on a disease that poses one of the greatest challenges to relationships, medicine and care that the world has ever seen.

This is, of course, just a snapshot of the current picture. Join the debate by adding your comments below.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886