Wednesday 30 January 2013

Don't ignore me

Everyone with dementia has the right to expression, yet a lot of dementia care still focuses on imposing the will of the care provider on the person, rather than assessing what the person themselves actually wants.

Even people with an early diagnosis can walk away from hearing that news, tell friends and family and find that instantly an assumption is made about their ability to make choices in their life. Someone with a diagnosis of dementia is still the same person that they were before they were diagnosed, and with the right care and therapies will hopefully remain that way for the longest possible time.

Much of society assumes that someone with more advanced dementia cannot express themselves if they are unable to coherently articulate, but that simply isn’t true. Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.

Is the person’s body language defensive or welcoming, are they consistently choosing to reach for a particular food or drink over something else, or showing a preference for a particular colour of clothing. How do they react to moving to a different environment (like going outside), what gives them pleasure (anything from favourite music to a warm hug or having their hand held) and what causes distress? What can you do that engages their attention, and keeps it, and what do they appear ambivalent towards?

Playing your part in helping to stimulate expression is very important. If someone with dementia cannot hold a conversation, can they express themselves through music, writing or drawing? However messy what they present to you may be, does it tell you something about how they are feeling? What about sexual expression – many people feel very uncomfortable with the idea that someone with dementia may have sexual thoughts or needs, but they are still a human being. Are they trying to express a need to be loved?

A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.

During the last few years of my father’s dementia, he lost his ability to contribute to a conversation and would often appear ‘unresponsive’ to questions or activities around him. Although he was able to say occasional words, his expression came mostly through song lyrics, facial expressions, eye contact, hand gestures, clear enthusiasm for some things (like going outside) and a clear dislike of other things (like having his temperature taken in his ear). He had what I would describe as his ‘blissed-out’ expression, when it seemed as if all was well in his world and he was utterly contented and happy.

As a family we became experts in interpreting dad’s expressions, and because of that we were able to help the professionals caring for him, especially during the times when he was in hospital and surrounded by people who knew very little about him and his reactions. Busy environments, like hospitals, are places where the delicate, intricate way in which someone with advanced dementia expresses themselves can so easily be lost, which not only puts the patient at a disadvantage but also leaves those caring for them in the dark.

As a society I think we have become so heavily reliant on speech as a means of communication (because it suits our need for instantaneous information that is delivered quickly), we are in danger of losing the art of interpreting the needs of anyone for whom speech does not come easily, coherently, or in some cases, exist at all. Without the ability to interpret non-verbal expressions, and in the case of someone with dementia, ally that with everything you know about the person, their likes and dislikes, history etc, you can easily believe that someone is 'unresponsive' when in actual fact they are desperately trying to tell you something.

Even in dad’s final days, he still showed flickers of expression, which only proves how much the human spirit wants to exercise the right of choice right up until the end of life. During that time, dad’s expressions were stimulated by hearing favourite music, comforting words we were reading from books or personal things we were saying to him. At such a sensitive time, seeing his small but hugely significant expressions gave us comfort that dad’s end of life was something that was peaceful and as he wanted it to be.

From the very beginning of someone’s dementia to the end, everyone involved in their care should be putting the person with dementia ahead of their personal opinions or ideas, and that is never more important than when it comes to how that person expresses themselves. It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 23 January 2013

The ageing mind

Given that dementia is one of the diseases that people fear the most, there is a very strange acceptance that we will all have ‘memory problems’ as we get older. Indeed the government’s National Clinical Director for Dementia, Alistair Burns, recently said in a meeting with myself and other colleagues that "by the time he got memory problems" he hoped that all the work he has done to revolutionise dementia care in the UK would have come to fruition.

Personally, I have always found it curious that memory problems are so associated with old age. Many people of my generation and much younger struggle to remember all kinds of day-to-day things, with such lapses sometimes impacting very negatively on their work or relationships. For some people that forgetfulness is as a result of enjoying a little too much alcohol, often with the intention of ‘drinking to forget’. In those circumstances forgetfulness is somehow celebrated by the young, yet in our older generations it is considered a weakness by society.

So are we perpetuating a myth by bracketing a decline in memory with growing older? Obviously as we get older all our organs, including our brains, can begin to show the effects of having worked so hard for all those previous years. Lapses, small failings and those ‘what did I come into this room for’ moments affect everyone at some time in their lives, but memory problems alone do not necessarily mean that someone has dementia or will go on to develop it.

Associating memory problems with older age also has much darker connotations. Memory problems in all their forms, from the mildest to the most serious, can often lead to the assumption that the person is stupid. It is a myth that haunts dementia to this day, and one that is wholly inaccurate. Moreover, if you take that one step further and assume that all older people have memory problems, it is no wonder that much of our society believes that our older generation have less worth than their younger counterparts.

As in so many matters, whilst the young can ‘get away with it’, our older people are usually judged the most harshly. Moreover, once those widespread assumptions are made about the abilities of our older people to be able to engage their brains, they then find themselves largely excluded from decisions that affect them, particularly but certainly not exclusively, in health and social care.

Take for example the current controversies around dementia ‘screening’ (something that I will be blogging about in the near future). Has anyone asked the population over 75 what they think about these proposals? Probably not, and if they have, I very much doubt anyone listened to the response. Yet with an ageing population, the ‘grey vote’ as it is so patronisingly described will have an ever increasing say in the futures of our politicians. Perhaps it is time for policy makers to offer a little more respect, and authority, to their elders and betters.

So how do our older generation fight back against the assumptions being made about their memory? All the best advice I’ve ever heard about keeping your brain in tip-top shape largely revolves around the standard recommendations for a healthy diet, plenty of exercise, reducing stress and getting enough sleep, but what really stands out for me is the part about socialising.

A roaring social life, even better than you had in your teens and twenties, is the sort of prescription I think most people would like from their doctor. No longer is ageing all about growing old gracefully – it’s about getting out and singing, dancing, acting, volunteering, campaigning, getting involved in community projects, and putting the world to rights with friends in coffee shops and mates down the pub.

The benefits of socialising shouldn’t just be confined to those trying to prevent memory problems however. If anything social interaction becomes even MORE vital for those people who already have memory problems that form part of living with dementia. Yet this can be the one time in someone’s life when they are least likely to have opportunities to socialise or be accepted by their community if they try to.

How ironic that the isolation many older people feel, whether they already have issues with their memory or not, is effectively increasing the numbers of people with memory problems and the severity of their symptoms. Moreover, the widespread assumptions being made about older people developing memory problems has the potential to turn into the sort of self-fulfilling prophesy that marginalises our older generation even more. We should be supporting our older citizens to lead full and active lives within their communities and, most importantly of all, make the best of every asset that they have, including their memory.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 16 January 2013

In sickness and in health

Through my work I am very privileged to meet and chat with people whose day-to-day life revolves around caring for someone with dementia or living with it themselves. Why ‘privileged’ you might wonder? Simply because having walked this path with my father, I know how tough it can be, and I have the ultimate respect and appreciation for what living with dementia really means both for the person themselves but also for those who are closest to them.

A lady currently caring for her husband said to me last week that she feels like she is drowning, that bit by bit dementia is literally sucking the life out of her, her marriage, her greatest friendship, her home life and her future. She is realistic about what the years ahead hold; she notices every change, every deterioration in her husband and plans everything, such as she can, on ‘worst case scenario’. She says she sees nothing ahead of her except darkness and sadness.

Another lady contacted me to describe the great emptiness in her life. Due to her own health she could no longer continue to care for her husband of 50 years at home, and reluctantly had to take the decision to move him into a care home last year. Having been married at 22, and never spending more than a few nights apart in all those years, she felt as though the blow dementia had dealt her life was, in many ways, worse than the bereavement that comes when a loved one passes away. She described it as if the disease was taunting her, explaining that although she still visited her husband every day, he appeared utterly oblivious to her presence.

Dementia doesn’t just affect older people either. I still remember very vividly hearing the heart-breaking tale of a lady whose husband had been a high-flyer in London. He had been offered and taken early retirement at 51, and he and his wife had planned to enjoy what they hoped would be golden years of rest, relaxation, travel and doing all the things that they had never been able to do whilst he was working and she was bringing up their family. Within a year of his retirement, her husband had been diagnosed with early onset dementia and his symptoms were advancing at an alarming rate. She felt bereft and cried daily, expecting that her husband would possibly never see his 60th birthday.

These are just three couples in amongst hundreds of thousands, in the UK alone, whose lives have been invaded by dementia. I write a lot about how having a parent with dementia affects your relationship with your mum or dad, but if anything the effect on a marriage or partnership can be even more profound partially due, I think, to the age demographics involved.

When you are part of the younger generation, you grow up to appreciate the fragility of life as beloved older relatives experience health problems and pass away. I vividly remember losing my much cherished grandmother when I was only 7. My grandfather had died when I was just a baby, and both my father’s parents passed away long before he even married my mother. If anything life as a youngster tries to prepare you for looking after your parents and coping with whatever their needs may be in the future, not that such preparation is ever enough.

In a marriage or long term relationship, where both partners are often of a similar age, having made a life-long commitment to each other and with expectations of growing old together as their children go off and live their own lives, the blow can be even more cruel. That life you thought you would always have together will never be as you expected it to be once dementia intervenes. One partner will often be faced with providing care and coping with changes in their spouse that leave them feeling completely empty , isolated and vulnerable. Moreover, as dementia is terminal, you face one day laying to rest someone who may be the only person in your world that you could truly rely on.

There are also additional considerations when a partner has dementia. I have heard people with dementia describe their sadness at being unable to share a bed with their husband or wife due to dementia giving them violent night terrors that puts their spouse at risk of being unintentionally hurt. Many couples also bravely talk very candidly about dementia wrecking the intimacy in their relationship. How their partner’s dementia means that they have lost the understanding of what intimacy is, and that they no longer reciprocate even a hug or a kiss.

Maybe as a society, with preconceptions that dementia is a disease of the old and that sex is the preserve of the young, some may feel that this is all a perfectly normal part of aging. But try telling that to the husband or wife who misses the warmth of their partner’s body next to them on a cold winter’s night, or the expression of love, reassurance, solidarity, tenderness and kindness that a kiss or a hug provides. Without those fundamental aspects of a loving relationship, loneliness, depression and the searing pain and sadness of what feels like a separation can be overwhelming.

To anyone who is on the dementia journey with their best friend, lover and life-partner, I send you my thoughts and hopes that you find strength amidst the struggle, and love within the despair. For you, ‘In sickness and in health’ has a meaning well beyond anything you ever thought it would.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 9 January 2013

Celebrating longevity

Hearing the tributes this week to Reg Dean, the gentleman who had been the UK’s oldest man until he passed away at the tender age of 110 years and 63 days, reminded me of the amazing stories behind the faces of every older person in villages, towns and cities across the UK and further afield.

Reg had been a church minister, serving as an army chaplain in Burma during World War II, was married 3 times, worked as a teacher, wrote short stories, founded the Dalesmen Male Voice Choir, took up painting at the age of 80 and was a vegetarian for more than 30 years. He lived through two World Wars and 24 British Prime Ministers, attributing his longevity to a mysterious medicine given to him by an Indian doctor and being, as he put it, “A member of the August fellowship known as 'lazy bones'."

The gentleman who succeeds him as the UK’s new oldest man is Ralph Tarrant, a great great granddad of over 109 years with an equally engrossing story and some great anecdotes. He still enjoys walking, and although he now needs a stick he is proud to claim that he can still "go like the clappers.” He lives independently, does his own shopping, enjoys cooking, and says he feels “really smashing” for his age.

Ralph’s advice on longevity is simple.  He says there is "no need to live too carefully” and having enjoyed 79 years of marriage before his wife died aged 102, he claims that the key to a long and happy union is to “give each other hell every chance you get.”

Many people may look at Ralph, and Reg before him, and just see wrinkled faces, bodies not moving quite as quickly as they once did, and a person they perceive has no relevance to the ‘modern’ age, but my view is completely different. Just by researching their stories these men have proven to be enlightening, entertaining, and an example to us all of how to grow old gracefully.

Society is generally fearful of old age, perceiving it to be about increasing aches and pains, immobility, losing functioning and independence and ultimately ending up just waiting to die. These men prove that it doesn’t have to be like that, and whilst their longevity may be more aspirational than achievable for many people whose lifestyles or genetic makeup mean that they will never live for as long, or as healthily, as Reg and Ralph have been able to, I hope that their example helps to change the face of ageing into something more positive and desirable.

From an educational point of view, both men are also from a generation who worked for everything, saved before they spent, and endured great hardships during previous wars and recessions. Crucially, their generation also knew the value of things. They appreciated what they had and looked after what they were able to gain through their endeavours. They were never obsessed by celebrity, a ‘must-have’ culture or the temptations of excessive credit.

Thankfully Reg and Ralph have not only lived long and full lives, but have also been able to share their stories and maintain control over their day-to-day life, unlike the many people, often much younger, for whom health problems mean a very different experience as they age. Without the ability to speak up for themselves, defend their rights, fight for what they need and maintain their place within society, many older people are often ignored, mistreated or consigned to the scrapheap.

But consider this. Imagine if every wrinkle on an older person’s body represented a story to tell, an anecdote to recall, or a snipet of knowledge or advice that could change the course of a younger person’s life for the better? In our commercialised society, a ‘product’ capable of providing information of that magnitude AND entertaining the recipient would have a very high value indeed.

Yet so many older people don’t feel valued, and for everyone who might celebrate their existence, there will be others who feel that they are an unnecessary burden. I would argue, however, that we need to harness the wisdom, experience, knowledge and human spirit that lives within people like Ralph, and Reg before him.

By doing that not only do we celebrate their longevity and learn from their lives, we also help to change the image of their generation amongst the younger population. Men like Ralph provide the voices for their peers who through failing health cannot speak up as they once did, and by flying the flag for our older generations, these inspirational characters might just help to change the way ALL older people are viewed and treated.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 2 January 2013

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...

Beth x

You can follow me on Twitter: @bethyb1886