Let's talk about dementia - Questions and answers

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 2 - Asking questions, finding answers

Developing dementia often brings many questions. What is dementia? Why me? What does the future hold? How will I/we cope? HELP!!!

Asking questions is natural. Finding the answers is often much harder. Sometimes there isn’t an answer. Sometimes you have to accept that you will never really understand something, which is one of the hardest aspects of living with dementia. Some of the finest advice I was given, and have passed on many times, is to ‘live in the moment’ with dementia – whether you are the person who has developed it or those closest to them.

19 years with my dad’s dementia didn’t answer all of my questions. I found that the questions that represented my deepest raw anger and grief didn’t have a definitive answer, and still don’t. But I was lucky - for all the questions I could articulate, and issues I could explore with family and friends, think of all the questions that my dad must have had that in the end he couldn’t find the words for.

Talking about dementia means letting rip with our questions as often as we need to and, in the case of someone with dementia, whilst they are able to… and when you think you don’t have the answer, remember, you can always just live in the moment.

Next post on 21 May 2013.
Until then...

 

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Be kind to each other

There is something incredibly simple, natural, easy to deliver, easy to comprehend, wanted, needed and with a huge power to heal that I believe everyone desires when they interact with a fellow human being. It’s almost indefinable, and yet when you are touched by it you know you have been. It can be momentary and yet be remembered forever. It costs nothing, and yet is priceless. It is called compassion.

When I say we all desire it, I would add that there are times when it is more important than mere desire, it’s essential. When we are at our most vulnerable, emotional, confused, in pain, frightened and fearful of the future, then it can be the ultimate medicine for bringing calmness and serenity, security and comfort. Such power should surely make compassion the cornerstone of health and social care, and yet sadly that isn’t always the case.

In the wake of the Francis report into the Mid Staffordshire NHS Foundation Trust, I heard one commentator say that compassion was unachievable in the NHS.  Another ‘expert’ claimed that he didn’t believe staff could be automatically expected to be compassionate, and concluded by saying that he didn’t believe you could teach compassion. So just how do we inject this vital quality of understanding, empathy and love into the way we care for people?

After the gross negligence found within Mid Staffs, and the appalling way it was allowed to happen, and continue to happen, until many hundreds of patients and families were affected in the most devastating way, it could perhaps be easy to conclude that all hope is in fact lost. Compassion wasn’t on the radar of the staff who allowed those patients to suffer, and die, in such horrific circumstances, and you cannot help but wonder how many other NHS trusts have harboured employees responsible for similarly negligent practices.

Certainly the systems of regulation leave a lot to be desired if such catastrophic failings can occur, and a fundamental re-evaluation is urgently needed of how we care for patients across health and social care. Organisational change will certainly result, in some form or another, from the findings of Robert Francis QC, but what about on a personal level – when did healthcare stop being about one human being genuinely and sincerely caring for another?

In my view care isn’t defined by how many pills you can give someone or how you can cut them open, however important both those approaches may be for an individual’s treatment and recovery. It is how you treat that person on a personal level every time you see them, every time they need your help (even if that is the twentieth time of asking in the last hour) and every time you go to them to give them something or do something for them, even when they may appear hostile or indifferent.

By putting yourself on the same level as the person you are caring for, seeing the world through their eyes, and adjusting everything you do or say as a result, you are being compassionate. You are putting their need to be understood and shown love above your need for speedy completion of a task. Ultimately it is about treating that person, who you’ve possibly never met before and may never meet again, as you would wish to be treated yourself.

I believe such qualities, if they aren’t immediately apparent within a person are, generally speaking, something that can be taught by those capable of setting that example. Simple observation of compassionate care in action, explanation of the principles above, role-playing situations, and finding that point within an individual that touches their heart and soul is what will show most people the need for a compassionate response within their work. Give them the freedom to express that compassion and voila, you have compassionate care.

Many of the structures within health and social care actually directly preclude the delivery of compassionate care. We put staff under huge pressure, give them unmanageable workloads, put paperwork before patients and fail to allow for the need to stop, take stock, approach someone with a compassionate attitude and give that person the time they need with their patient so that both the professional and the patient has had a meaningful interaction.

Of course I would be the first to acknowledge that some people do not have the ability within them, no matter how much time you invested in them, to be compassionate in their care. They are the people for whom the Francis report needs to herald a change of career. I have seen for myself (and wrote about it here), what happens when someone who is a registered nurse, and yet doesn’t have a caring bone in her body, is allowed to manage a care home of extremely vulnerable and frail people with dementia. The outcome of that decision was, ultimately, my father’s death. That situation isn’t just reserved for social care settings either. She could just as easily have been a nurse on a hospital ward – at Mid-Staffs there were many like her I suspect.

I don’t, however, feel that all hope is lost. I saw compassionate care given to my father on many more occasions over his 19 years with dementia than I ever saw practices or interactions that I considered unacceptable. Whether in care homes, hospitals, primary care or support services, we met some amazing people, dedicated and compassionate, doing the very best they could in often extremely difficult circumstances.

So what does the future hold for compassionate care within the entire health and social care systems?  I remember at a conference last autumn I was chatting with a colleague who pointed out that so much in society could be improved by simply showing kindness to each other. So simple, so vital, and so undervalued. Maybe in the wake of the Francis report those who control our health and social care services, and those who deliver that care on the frontline, will look again at whether what they do is compassionate and if it isn’t, why it isn’t.

Until next time...

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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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