Explaining Alzheimer's And Dementia

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• Publisher: Straightforward Publishing Digital
• Year: 2012
• ISBN:
  9781847162434
• Topic: Medicina
• Subtopic: Neurología

What exactly is Alzheimer's disease and dementia? With Alzheimer's and dementia now reckoned to affect thousands in Britain, this is a question that more and more people are needing to ask. The second book in the new Explaining series, Explaining Alzheimer's and Dementia provides a clear and concise introduction to this fascinating and complex subject. Written in accessible, non-specialist language, it provides an ideal introduction for parents, carers, partners and anyone faced with a loved one or client with either of these conditions.

Chapter One

“Have I had lunch yet?”

 

“Have I had lunch yet”? This simple question was one of the first key signs that not all was quite right with my Grandad. It was a question that would change my family’s life forever. Over the coming years he and the rest of my family followed a path that many people in this country have had to take. A journey that incorporates many difficult battles. Facing up to the reality that something is not ‘quite right’, desperately trying to receive a diagnosis and then beginning the difficult job of learning how to live with it, in some cases without much support from the ‘experts’.

I know there were times during my Grandad’s illness that were incredibly hard for him and those who loved him. He felt great frustration at not knowing where his wife was, only to be reduced to tears by well meaning family members who reminded him that she had passed away many years ago.

My Grandad was never told his diagnosis. We all knew and yet when he begged us to tell him what was wrong, we told him it was just part of getting old. The first great difficulty to overcome was moving in with my family. This was incredibly challenging for a man who up until now had always had a ‘quiet life’, to suddenly be faced with trying to fit into the chaos of a busy household. After living with us for two years my Grandad moved into a care home, for all of us it felt as if we had betrayed him. We had promised him time and time again that we would never ‘put him in a home’ and yet here we found ourselves doing exactly that.

Feelings of guilt.

The family’s feelings of guilt were not helped by the fact that we shortly had to move Grandad again as the original choice of care home could not cope with his ‘challenging behaviour’.

Luckily the second care home was amazing. It felt like a ‘home’ rather then a hotel or a hospital. The staff treated my Grandad like ‘Jim’ not just another number or patient. He made good friends with the care staff and the other people with dementia who lived there. They encouraged him to regain lost skills and soon he was walking independently to church, something he had not done for many years.

My Grandad lived at the home for a number of years. We were lucky enough to visit him regularly and even though he would not remember my name he would always greet me with a smile.

Sadly he became ill and had to go into hospital. After only a few days of being in hospital he was given medication to ‘calm him down’. We were told that the medication was needed because my Grandad would not stay in his bed and would walk around the ward.

The nature of the ward meant that the staff were very busy and simply did not have the time to support my Grandad, in the manner I am sure they would have liked to.

Darkest days.

My Grandad’s darkest days were his last. Since his arrival on the ward, in a matter of a few weeks, we witnessed a massive change for the worse in him. I remember sitting there watching him, a withered and tired man who no longer wanted to live.

None of us had expected a ‘happy ending’ but none of us predicted an ending to my Grandad’s life like that, lying in a hospital bed.

I have always questioned was it my Grandad’s dementia that had caused him to decline so rapidly or was it his ‘treatment’ in hospital? I know the staff in the hospital were under terrible pressure and from speaking to people in preparation for this book things don’t seem to have changed.

We have been working faster and faster with fewer staff. Its never been quite this Dickensian.

Staff are being asked to reapply for their own job.

At certain hospitals there are just not enough staff to do the job.

Quotes from hospital staff.

The second care home had shown to me that living with dementia did not have to be the ‘hell’ that so many of us imagine it to be. The home had shown that life with dementia can still be one worth living IF the person with dementia and their family are given the right support, understanding and empathy. It taught me that it is possible to find direction and purpose with time and support from the right people. However my Grandad’s experience in hospital also taught me that if this support is not there then a person’s experience of dementia can be a dark one.

The big D

I have to be honest I didn’t want to know the truth. I would have preferred to hear the doctor say anything....anything but that.

You can understand with the negative attitudes out there why people don’t come out and say they’ve got dementia.

Quotes from Family members

I recently sat with a friend, whose mother had been diagnosed with dementia. She told me that, although deep down she knew that her mum had the illness, she had feared hearing the word dementia.

My friend is not alone. Dementia is probably the condition that more then any of us fear, the news that someone we care for or we ourselves have been diagnosed with this condition. It used to be the BIG C but now the BIG D seems to have truly taken the throne of the thing we fear most.

The big D.

During this conversation, with my friend, I asked her what she was going to do? She screamed the answer back at me that: “she didn’t have a clue”?

Too often I have heard similar statements coming from numerous people:

•  What do I do next?

•  Who can help?

•  How can I cope with this?

•  Why did it happen to her/ him?

These are the kind of questions that too many people face and often there is no magic wand that can be used to give the answers.

The aim of this book is to at least try and start answering some of the questions people living with dementia may have. This book also aims to illustrate that, although living with dementia may seem the worst thing in the world, there is still hope, there is still a future to be shared and new goals can still be achieved IF we as a society recognise that people with dementia and their carers have a very valuable part to play in our society.

Don’t ignore me. I’m still human and that’s it in a nutshell.

Quote from a Person with dementia.

Being positive where possible. People out there think that dementia is all negative where as actually you have got to live for today.

Quote from Family carer.

The message, that has come across from many people with dementia, is that there are ways of living with dementia and the difficulties and challenges it can bring. This is different for each person. For some it can be through laughter, working with others, sharing their experiences with others, art, exercise, the company of good friends or religion.

The doctor said to me this morning I’ve got to cut down on the unhealthy food I am eating. She said fish is good. I said what with batter? I don’t think she was impressed.

Laughter gets you through it.

I haven’t got a broken arm or a plaster cast. I might go round with a bit of plaster on my head with the words dementia written on it.

I have fewer friends now but those who are left are good true friends.

My stepdaughter is one of those who thinks there is nothing wrong with me because I do talks up in London. Whereas my son knows more then me. He rings me three times a week to see what I am doing. My other daughter has never spoken about it she does not want to know. But I met her on Thursday at Eastbourne and we spent half a day together. She’d got a laptop for Christmas. When we sat there the other day she said you are on ‘you tube’ – it was three or four talks that I had done about having dementia. This is the first time since 2006 when I was diagnosed that she has sat down and spoken to me about my illness.

Quotes from People with dementia.

The next chapter of this book considers the different perspectives of dementia including the medical model and person centred care. It also reasons that the domination of the medical model can actually create an added burden to the person with dementia and those who support them.

One so called professional said to me, ‘I suppose I won’t get much information out of him?’ I was livid.

Quote from a Care home manager.

My mother comes in and treats my husband as an exhibit. She peers around the door at him and then comes and talks to me.

Quote from a Family carer.

The third chapter discusses the significance of recongising a person’s remaining strengths and abilities that can survive even into the later experience of dementia. This is in order to provide a wider view of what it is like to have dementia. The medical model often focuses on the losses and growing dependencies and ignores the importance of considering what a person can still do.

Chapter four aims to provide useful information about what dementia is and the different causes of dementia.

The fifth chapter explores how people use behaviour as a form of communication.

Chapter Six discusses the importance of being a good listener. This is so essential for people with dementia, to be shown that what they are saying is of value and importance. This chapter also indicates that although the language used by people with dementia may become harder to understand there is still meaning behind what people say or do.

Finally at the end of the book there are some useful contact details including the Alzheimer’s Society.

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Chapter Two

Different Views About Dementia.

This chapter considers some of the various views that are held about dementia.

The first part of the chapter looks at the dominant approach, known as the medical model, and how this has influenced professionals, the Medias and societies perception of what it is like to have dementia.

The second part of this chapter considers how there is an alternative way of thinking about dementia, known as person centred care. (The ‘new culture of dementia care’). The underlying principle of this is that a person with dementia is a person first and foremost. This view recognises people with dementia are individuals who need understanding and support throughout the...

Table of contents

• Cover
• Title
• Copyright
• About the author
• Dedication
• Acknowledgements
• Contents
• Foreword
• Chapter One: Have I had lunch yet?
• Chapter Two: Different views about dementia.
• Chapter Three: Focus on strengths!
• Chapter Four: What is dementia?
• Chapter Five: Behaviour: a form of communication.
• Chapter Six: Keep listening!
• Final Words.
• Useful Contacts
• Index