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Wednesday, 29 August 2012

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

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

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

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

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

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

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

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

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

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

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

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 22 August 2012

Putting your head above the parapet

Anyone who knows me will confirm that I am not afraid to speak up, firmly but fairly, if something is wrong. With TV programmes and magazines extolling the rights of the consumer, complaining about goods and services is something most people will do without hesitation. When it comes to complaints about issues of health and social care, however, a chilling fear of the malevolent intentions others may have as a result of what you are going to do or say can put you in that most impossible of positions – do you speak up, and if you do, will there be unexpected consequences?

Over the course of my father’s 19 years with vascular dementia there were numerous occasions when things went wrong, particularly in care homes. Small issues like missing clothes, giving the wrong food or drinks, or not showering him enough were easy to tackle with staff who, whilst often overworked, were generally conscientious and wanted to put things right, but much bigger problems proved far more difficult to deal with.

As a loving, caring family, you want the best for your relative, wherever they are and whoever is looking after them. People with advanced dementia cannot speak up for themselves, and whether your battles are with care home management, hospitals, care agencies, PCT’s or social services, it can easily become an all-consuming, personal quest for the care, justice and fairness your loved one deserves.

Generally most official complaints procedures would like you to start and end your complaint with the lowest level manager that they can delegate your issue to. Often, however, this person will not have the authority to overturn decisions or will try and wrap your problems in red tape, with protocols, procedures and lengthy time scales. Going higher up the management structure will often result in more bureaucracy, if indeed you can ever actually speak to and develop an understanding with someone who can make the changes you want.

Complains in health and social care are generally very personal, yet you are often left dealing with people who have no personal feeling for the subject in question and therefore no understanding of where you are coming from. Frustrated and exhausted, do you resort to more public methods to fix the broken part of the system that you are in?

Many people have asked me why I never started D4Dementia sooner – 19 years, they say, is a long time for my father to have had dementia, and sharing those experiences along the way could have helped and supported many others on their own dementia journey at that time. Whilst this is very true, and our story has many positive aspects, starting the work I am doing now when my father was still alive would have also meant publically exposing when things went wrong, a concept that filled me with a genuine fear that my father’s care would suffer.

The care system can be very political, secretive and unnerving, and when dad’s care deteriorated  to a point where he was suffering (as I wrote about here), whilst I was tempted to make his case an example to the UK, at the same time I felt the price he may pay would be unbearable. As it was, involving senior management from the care provider, and eventually CQC and other agencies in the months prior to my father’s death, left us ostracised, isolated and the subject of lies and rumours from the home management. Furthermore, given the circumstances in which the pneumonia that killed my father manifested itself, I will now always wonder if he was targeted as a resident with a family that they simply wanted to get rid of.

There is a pervasive fear amongst families of older people who cannot speak up, or indeed amongst the elderly who could speak up themselves but live in fear of doing so, that the lives of the older generation are considered to be worth less than their younger counterparts. Many elderly people often feel very vulnerable, alone and frightened, languishing in hospital beds or in care homes with problems that they would like to voice but fears that their care will suffer if they ‘get someone into trouble’.

Anonymous whistle blowing is great in theory, but often the channels for doing this are unknown or not trusted, and as a result underused. Regulatory bodies that are designed to protect vulnerable people, like CQC, can be unapproachable and unhelpful, and as we all know, sometimes it even takes undercover reporters to expose bad care.

When you put your head above the parapet you should be assured of knowing that you will be listened to and action taken swiftly and fairly. Driving up standards only happens by finding and eradicating instances where people are at risk of harm, abuse or even death. Complaining about bad practices, decisions, poor care or management should be something people feel that they can do freely and in confidence. Sadly many people do not, and if my father was still alive I would not be sharing our experiences with you now, so there is still much to learn and change about the way the UK approaches complaints about the most important issues of all, those of life and death.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 15 August 2012

Dementia’s emotional rollercoaster

Living with dementia is one of the toughest challenges any family can face. Emotions become raw and brutally exposed, and the constant question of, “Why did our loved one develop this?” is a harrowing, often daily, exercise in trying to understand that which cannot be understood.

Amongst the many families I have met going through their own unique dementia journey with a loved one, some common emotional themes have developed, five of which I am going to explore in this blog. Interestingly, given that many people feel dementia takes away the closeness they once had with their loved one, all of these emotions are common in the person with dementia too, so maybe we are not so far away from each other when it comes to the deepest feelings after all.

DENIAL

The early stages of dementia are, for many people, all about hoping that what they think is happening is not actually happening at all. They want it to be a figment of their imagination, an over-reaction to some erratic, worrying behaviour that they have experienced, a normal part of ageing, or a case of the person in question being far too educated, important or active to develop dementia.

The belief that this happens to ‘other’ people can become a huge obstacle in seeking help when someone is struggling with symptoms that are affecting their daily life, but it must be borne in mind that this disease is no respecter of background, education, career attainment or personal success. From the wealthiest, most influential people, to those who have struggled all of their lives to makes ends meet; dementia can strike anyone. There is no shame in it, and no reason to hide no matter how much pride you feel.

My father went 10 years without a diagnosis, but at a very early point when his symptoms became evident to a non-medical lady who clearly knew far more than we did, her view was that he was in the early stages of Alzheimer’s. Our reaction was something along the lines of, “What on earth is she talking about?” followed by, “She can’t possibly be right.”

LACK OF UNDERSTANDING

Denial often goes hand-in-hand with a lack of understanding about what exactly dementia is. When dad’s diagnosis finally arrived in many ways it joined up the dots, and everything that had happened in those previous 10 years suddenly had an explanation attached; except that we still did not really know what on earth dementia was.

At that point you then find yourself reading up and trying to understand, questioning the professionals charged with your loved one’s care, and almost secretly hoping that they are wrong and everything will go ‘back to normal’.

Of course that does not happen, your understanding slowly grows over the years, and your ability to spot the early signs of dementia in others (just like the lady who thought that dad had Alzheimer’s) becomes very finely tuned. A true grasp of dementia, its twists and turns, vagaries and anomalies, frustrations and yes, even joys, only comes with the time the journey with this disease takes.

FEAR

Families often put off getting a diagnosis out of fear for what dementia will mean for the future. Fear of the disease is one of the biggest obstacles in tackling it because it feeds stigma, prevents understanding, and leaves people feeling helpless and not in control; effectively it puts you in a vicious circle.

Confronting your fears by seeking a diagnosis is not easy. You may not even have a choice in the end – we didn’t. Dad’s diagnosis came by chance when he had been admitted to hospital after collapsing at home from a stroke. At the time our fears were for his physical condition; we were coping with the shock of finding him on the floor and the worry of whether he would get better.

After all that, in some ways a diagnosis was a relief but the fear does not automatically go, in fact it often gets a lot stronger. Once you realise that dementia is a journey you will be going on whether you feel prepared (you won’t) or not, fear can regularly creep into your everyday life. For me, however, as dad’s dementia progressed, fear of the disease was replaced by fear of the phone call to say that he was ill with a chest or bladder infection and needed urgent medical care.

A SENSE OF LOSS

This is one of the most common, reoccurring, and troubling emotions that families going through dementia with a loved one experience. You feel you are slowly losing the person you knew, you cannot communicate or do the things together that you used to, and you are effectively grieving for your loss whilst your loved one is still alive. It is all the more distressing when you confront the realisation that as dementia is a terminal illness you will, at some point, grieve all over again.

It has been said that in dementia the mind passes away long before the body does. It is a profound statement but one that does not take into account the power personalised, compassionate care can have in helping those living with dementia to express themselves and maintain the bonds that they have with their family. Even when you become accustomed to dementia, if indeed you ever do, I won’t pretend that dark days do not happen when you feel overwhelmed with sadness, grief-stricken and helpless, but care that enables your relative to feel reassured, loved and valued will bring many more happy days than sad ones.

GUILT

This is an emotion that so many families experience if the time ever comes when their relative needs to go into care. At this point families have often been struggling on at home, trying to care for their loved one, or a crisis point has occurred that means residential care is the only viable option.

Whether you have been caring for your loved one day in day out, or you have lived miles apart and been wracked with guilt that you have not been able to do more for them, moving someone so precious and loved by you into a communal establishment can feel life-changing. It can also seem like the final step in accepting that your relative is battling a disease that means that they need an extra level of care, and that this may well be their final home.

The guilt that you cannot care for them for whatever reason can be very troubling, and often goes side-by-side with massive concerns about whether you have done the right thing, and how your loved one will adjust and be cared for. As in all things related to dementia, however, I have always felt that the disease persecutes enough, without adding additional punishment on yourself. Never be hard on yourself or your nearest and dearest; you will need each other and all the strength you can muster in the weeks, months and years ahead, and crucially, your loved one with dementia will need everything you can give them too.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 8 August 2012

Going for gold

As the medals have accumulated for Team GB at this year’s Olympic games, I have often caught myself wondering how amazing it would be if we could translate the dedication, talent, will-to-win, perseverance, commitment and self-belief that our sports men and women have shown at London 2012 into the people whose decisions, policies, beliefs and understanding (or lack of it) affect the lives of the most vulnerable in society.

You cannot work in dementia care, be a policy maker or decision taker and consider it to be just be a job, something that you do to earn your living and then walk away from. If you do, then you are in the wrong profession. If our sports people did not go the extra mile, care that little bit more, put in the hours and believe in better then they would not be where they are in the medal table.

One of my greatest frustrations is that while many talented people work in jobs that shape the current state of dementia care and influence the future of it, too many do not feel the passion for the subject that people like myself, and the many #dementiachallengers out there do. Conversely, at the grassroots, many people who work in dementia care feel a huge sense of pride in what they do, but are often restricted by protocols, policies and procedures that dilute their passion and knowledge so much that they are prevented from bringing their true care and compassion into the things that they do.

Passion is often mistakenly identified as being uncontrollable, unquantifiable and therefore a risk to stability, but it is needed more than any other quality when you are looking to transform the lives of those living with dementia. As people struggle on at home without the help, support and advice that they need, as they languish in acute hospital beds while bureaucrats argue over the care package that they should receive and how it will be funded, as they die needlessly because they are not properly cared for in a residential setting that does not meet the standards it should, is not staffed correctly or lacks the most basic understanding of dementia, passion is what is needed to drive up standards, change systems, improve the rates of diagnosis and the outcomes for people afterwards, make therapeutic care choices fundamental to everyone’s journey with dementia, support families and friends, educate the wider community, engender respect for the person, and provide dignity, compassion and personalisation in every aspect of dementia care.

Passion is about caring so much that you would go to extraordinary lengths to nurture and protect; qualities that are essential when you think about caring for people with dementia. Passion is also about understanding – having a real, intrinsic feeling for what life is like for someone with dementia and their loved ones, sharing their pain and their joy, striving to help them have the best life possible, and most importantly of all, seeing the person, not the disease.

For many people with personal, hard, honest and painful experience of dementia, their passion also has to translate into fighting for what their loved ones need. Often in the most difficult circumstances, where their relative’s future, even their life, hangs on the decisions of others, there is nothing more frustrating than knowing that you must convince people with no real passion for dementia, who work within frameworks devised without passion for dementia, to understand why you care so very very much.

Numerous people in authority talk about dementia having never personally experienced it. Many professionals work in influential positions for health and social care organisations, charities, government and the like who could walk into any job in their chosen sector; the fact that they work influencing the lives of people with dementia is more by accident than design. Changing this culture, and getting the voices of people with true passion into places of most influence, will transform how dementia is viewed, treated and understood.

Too many people still see dementia as a lost cause. It is true that changing perceptions takes time and patience, but it must also be borne in mind that for the people living with dementia right now and their families, they are left to struggle on, often in the dark about the journey they are on, feeling lonely and isolated, even ostracised from society. Dementia, because of its complexities and the individual nature of everyone’s journey with it, will never be able to have a one-size-fits-all model of care; something that everyone with a true passion for dementia recognises instantly. Just like our sportsmen and women with their Olympic triumphs that have given the whole country such a huge sense of pride and achievement, their journeys to gold have been individual to them, born from the passion that they have for their sport. The journey to gold-standard dementia care in the UK is still some way off a podium finish, but would be an even greater achievement for our country.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 1 August 2012

What makes a dementia friendly community?

When I last wrote about the UK’s dementia challenge I said that we needed to make our country a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. In practice, this means every community becoming dementia friendly, embracing this most cruel of diseases, and seeing the people who have developed it as an asset, rather than a problem.

It requires a change in attitudes, approaches and opinions that will not happen overnight, and realistically some people will never be convinced by the argument that everyone with dementia deserves to live well with it, rather than simply die from it. However, given the current numbers of people with dementia, and the predicted number of cases for the future, many more lives are going to be touched by this disease than a lot of people may even want to contemplate at the moment, making this the time for the UK to become both more aware of dementia and more friendly towards it.

At every stage of dementia, from pre-diagnosis to end-of-life care, every service accessed by people with dementia and their carers needs to have an intrinsic appreciation of what dementia means, how it affects everyday life, and what can be done practically to make using services easier. For the wider community, it is about adopting the key principles of compassion, dedication and personalisation to ultimately become more dementia friendly.

None of this is achievable without widespread awareness and education of dementia across all generations, from education in schools to campaigns targeting people in their 20’s, 30’s and 40’s whose parents or grandparents may be showing signs of dementia, and finally to supporting people in their 50’s, 60’s, 70’s and 80’s who may have dementia themselves, be trying to look after a partner with dementia, or are concerned about the impact dementia could have on their life if they develop it.

To do this community healthcare services, community groups, social and charitable groups, local and national media, and technology like social media, apps etc need to pull together as one to reach as wide and diverse an audience as possible. Realistic but also positive coverage of dementia that informs people, rather than terrifying them, will prove that this disease is not a black hole of nothing, and that living well with it is an attainable desire for everyone with dementia and their families and friends.

At the heart of all awareness campaigning must be people with first-hand experience of dementia, whether they are currently living with it, caring for someone with it, or have done in the past. I have written previously about harnessing the power of people’s first-hand dementia experiences to appeal to the hearts and minds of the wider population, and that will never be more important than in the quest to make dementia friendly communities. These people are the pioneers who can lead the way in helping the whole country feel as passionately about dementia care as they do. Small seeds of change do already exist within social media, with the Twitter hashtag #dementiachallengers uniting people, like me, in this common goal.

As I have often touched on, whilst I wish my father had never had dementia, his years with this disease gave us as a family many memories and experiences that changed our lives in a positive way, finding hidden depths to our feelings and resources, and giving us the privilege of supporting a wonderful man on his journey with a disease that, whilst he would have hated it, he showed such great courage, dignity, good humour and warmth in living with.

Although much has changed since my dad’s dementia journey began, there are still significant barriers for people living with dementia today. Access to services is still very much a postcode lottery, people are often not informed or supported regarding what they are entitled to, there is not enough emphasis on providing therapeutic dementia care (through the arts for example), not enough access to some of the great design and technological advances that can improve the lives of people with dementia and those who look after them, and there are many day-to-day obstacles to overcome. Even a simple trip to the shops, or going out for a coffee, can turn into people staring at you, whispering, being unhelpful, or refusing to make allowances for the needs of someone with dementia, and that is assuming you have the resources to even get out of the house or care home to begin with.

So much can be done to remedy this, however. Organisations can train staff to become dementia aware, not just to assist customers but also as part of the pastoral role good employers should adopt in supporting their staff in their personal lives, recognising that many of their employees will have family, friends or neighbours with dementia who rely on their help. Improving customer advice and liaison roles to encompass helping people with dementia who may be disorientated, confused, aggressive or upset, simplifying signage to help people with dementia to find their way, supporting people with financial transactions, adapting menus to reflect the needs of people who require soft or purred food because of a swallowing problem, and providing toilet facilities that help carers to change incontinence pads in privacy, are just a few simple but important issues businesses can address to become more welcoming for, and understanding towards, people with dementia.

It is not just down to businesses and service providers to make our communities dementia friendly though. If everyone understood dementia, recognised the symptoms in family members, friends and neighbours, and provided a supportive environment where we look out for each other, help with simple tasks, are able and willing to call for professional help when it is needed (and for that help to be forthcoming and appropriate), and took the time to offer kindness, a listening ear, a compassionate touch and a caring outlook, then all vulnerable people, not just those with dementia, would be able to live far more fulfilling lives that offer quality and richness.

Ultimately dementia friendly communities will only exist if there is a shared will between the people, policy makers, media and businesses to make this happen. Creating communities where people with dementia are welcomed, supported and enabled to get the maximum out of life will require flexibility, forward-thinking, huge commitment and above all instilling within our society how valuable people with dementia are.

Recognising the contribution people have made in their lives prior to having dementia, celebrating that, tapping into it and helping them to be as active, healthy and happy as possible during their dementia journey will need the rest of us to show the same courage and determination that my dad, so many before him and so many right now, are showing in battling their own personal dementia challenge.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886