The 2009 World Alzheimer’s Report estimates that 35 million people worldwide are living with dementia. This is predicted to rise to 65.7 million by 2030 and 115.4 million by 2050.
Dr Gaius Davies, consultant psychiatrist, in his foreword writes: “This book is especially good at explaining the grief of seeing a loved one being ‘lost’ over a period of months or years with dementia. The grief and loss can become all-pervasive. At such times we all need help from relatives, friends and the community – especially for Christians, the community of believers.”
In the introductory chapter, ‘A sense of purpose’, the author quotes Dr Daphne Wallace, a retired old-age psychiatrist, one of the speakers at the 2008 dementia conference, who had been diagnosed with vascular dementia herself a few years earlier. Dr Wallace said: “ It takes time to adjust, and then to learn to be positive about living with dementia. And if you have an early diagnosis then you have time to come to terms with it. And quite apart from any practical arrangements, you can deal with the experience. We need a sense of purpose; we need to have some sense of direction we’re going in, in our lives.”
Interspersed with comments by experts and carers this book tells the story of an elderly couple, Frank and Linda, real people whose names have been changed.
The first few chapters deal with issues such as how to live day by day with someone suffering from dementia, accepting their version of reality, and having the courage to do simple tests that offer early dementia warnings. At the end of each chapter the author recaps the chapter by giving a list of points to ponder. In order to give you an idea of how the author tackles the subject we take the liberty to extensively quote from the book.
From the first chapter, ‘A Day at a Time’, under the heading Our earthly tent:
“Our brains are probably the most important part of our bodies, because they are our control centre, like the bridge of a ship. We know that the way we communicate and project ourselves to others is enabled by different parts of the brain, and when it is damaged that ability to project is impaired. Does that mean that the individual, the person known to God, has changed? Most emphatically it does not. …
Linda’s husband Frank had always been an easygoing, good-natured man, but as the dementia developed there were times when he would become angry and frustrated. At first Linda put it down to dementia, but she quickly realized that the frustration came from things that Frank found himself unable to do. And she saw that the anger surfaced when he felt diminished or disempowered. The most typical trigger would be when she walked around the car to the driver’s side.”
In this context the author quotes clinical psychologist Graham Stokes, who observed that: ‘ too often the tragic fate of people with dementia is that once they have been diagnosed with dementia everything that happens after the diagnosis is attributed to the diagnosis. The pursuit of “why”’ is rendered redundant; for the answer is… “it is because they have dementia.” This is rarely so.’
In the second chapter, ‘Truth and grace’, the author demonstrates that there is meaning to the behaviour of dementia-sufferers. A Mr D., a patient of psychologist Graham Stokes, would be very busy gathering all the stones and rocks he could find in his garden and dumping them on the floor of their lounge.
“Examining his life history with his wife revealed an incident where …burglars had hurled a large piece of masonry through a window…With dementia, memory and understanding fail but feelings remain, often intensified…Mr D. was doing his best to keep his wife and his home safe…Once they understood this, his family made sure that there were always rocks in their own garden that he could find by replenishing them from the place they had persuaded him to use in a corner of the garage.”
From the same chapter, under the heading A better understanding:
“One of the ways our brains process new information is by relating it to things we already know…When we ‘lay down’ memories, both facts and feelings are recorded. Often the stronger the feeling, the more we remember; we can usually remember where we were when we heard that Princess Diana had died, for example. Not being able to store new information means individuals can have no idea where they are or who they are talking to, so to make sense of the present they will search their stored memories for comparable circumstances. Finding something similar, they will be convinced that is where they are now. Their situation will be as real to them as yours is now…And it is terrifying for them if they are told it is not. Imagine what it would be like if someone kept telling you that your version of reality was wrong, that you are actually somewhere else or doing something entirely different!”
The next two chapters are entitled ‘Could It Be Dementia?’ and ‘Honouring Thou’.
From the points to ponder listed at the end of chapter three, ‘Could It Be Dementia?’:
- Don’t avoid a diagnosis, either for you or for your loved one. Ignoring it won’t make it go away. Knowing what’s wrong allows you to make plans and access the community care available.
- Diagnosis is a process. Much more is known about dementia now. And it may be that you have a different underlying condition that can be treated.
- Stay socially connected. There will be challenges, but don’t allow them to lead you into becoming isolated.
Together with R. Hitchings, Louise Morse also authored the book: Could it be Dementia? Losing Your Mind Doesn’t Mean Losing Your Soul.
In chapter 4 the focus is on honouring one another above yourselves.
Again, some quotes: “ The concept of a photo album is a good way of explaining how our memories work, with the earliest memories at the bottom, and the latest at the top…Imagine that you are not able to remember recent events. You can’t store any new photos with facts, only feelings…You will not be able to remember the unsettling experience you had half an hour ago, but you will remember the feelings, and they will be associated with the people or the place involved. Simply finding blanks (empty photo frames) is frightening.”
As an illustration to the title of this chapter (Honouring Thou); “A daughter, who was her father’s main care-giver, told how she’d tried a couple of churches in her area, looking for one that would accept him and where he would feel comfortable. Eventually she found one that seemed to fit the bill. Everything went well until the pastor mentioned that believers were only temporarily in the world and were all going Home, at which point her father shouted out loudly, “Home, Home on the Range!” Instead of there being a moment of acute embarrassment, the pastor stopped and said, “Yes, that’s it! We’ll all be Home on the Range. Why don’t we sing that? …When the pastor led the church in singing “Home on the Range”, first and foremost he was honouring the “Thou”. He was also releasing a strongly therapeutic touch, for music has surprising properties.”
From the points to ponder:
- Honouring the divine image of each human being, particularly when a person has dementia, can help produce physical, positive changes in the brain. It will not lead to a cure – but it may help delay the progression of the disease. It will certainly increase a sense of well-being, and help lift depression.
Chapter 5, ‘Dealing with the Diagnosis’.
The author states that “ a feeling of being abandoned is not unusual for people with dementia and their families. Often, the person has been behaving ‘oddly’ for some time and others, not knowing what is happening, will have no idea how to cope…
The truth is that we do avoid people with dementia, partly because it’s outside our experience and we don’t know how to communicate with them, and partly because we find it frightening.”
Chapter 6 and 7 are entitled ‘Practical Steps” and ‘Tipping Points’.
From chapter 6: “Knowing how much Frank loved gardening, Matthew (their son) made sure there were no slippery or uneven edges along the path, and he trimmed the bushes so none would catch Frank unawares. ‘It was virtually a risk assessment,’ Matthew said, ‘looking at everything differently – from the angle of what is the worst that could happen, and doing whatever you could to make sure it didn’t’.”
New technologies also help in the care for people with dementia. As an example, mention is made of a device “ that activates when the front door opens and plays a recorded message reminding the person to take the key with them and be sure to close the door behind them. The recording could be made by a relative, so it would be personal and friendly.” Sooner or later we would become accustomed to a message like that and no longer notice it, but, for people with dementia who can’t store recent memories, the message will be fresh and effective every time.
Chapter 7 deals with tipping points. (emphasis R.L.)
“A tipping point is like a lever that moves slowly as weight is applied, but it changes outlook, attitude and subsequent behaviour. In dementia there are usually four tipping points: sleep deprivation, a breakdown in the health of the care-giver, an emotional watershed, and finally and perhaps most seriously, challenging behaviour.”
“The emotional watershed, or tipping point, depends very much on the people involved. For one wife, a lady very conscious of keeping up appearances and social standing, it was the way her husband began to dress, or rather not to dress, properly…
For others, it is when they become a stranger to their loved one. ‘I felt I had lost my own identity – I had lost myself, when my husband didn’t recognize me,’ said one caregiver. She had coped well up till that point, and then was swamped with the feeling that there was no sense in struggling on.”
Challenging behaviour: “It’s generally understood that challenging behaviour is the result of the person trying to express themselves in circumstances they are finding stressful or fearful. Although it is inexplicable and even alarming to others, it’s often easier to understand when more is known about the person.”
In this context, the author quotes a story told by aforementioned Graham Stokes: It is about “a ‘Mrs O’, a lady whose behaviour, at times made her seem like ‘the personification of madness’. Normally a very ‘kindly’ lady, she would bite, scream, kick, punch, spit and in every way fight her carers, but it happened only when the dressings on her legs were changed or when she was being helped to the toilet. Finding out more about ‘Mrs O.’ revealed a history of sexual abuse as a child, and although she was now an adult, dementia had destroyed her ability to reason that the carers were trying to help her. Without the cognitive, rationalizing part of her brain, her past became her present. The ingenious answer was to move the treatment from the intimacy of a bedroom to a small room set up as a mini medical centre, with a screen and pieces of equipment that gave it a neutral, clinical setting.”
‘Passport to Good Care’ is the title of chapter 8.
Under the heading The care is the treatment, the author points to today’s tendency to expect a cure for nearly every condition. She further states: “ Our hospitals concentrate on what’s wrong with you, rather than you, yourself; in fact, you leave all traces of individuality at the door…The financial and time pressures our hospitals operate under mean they have to be task oriented and, in general, it works. You go in with a condition and, hopefully, you come out without it, or at least, less of it.
It comes as something of a shock that the treatment of dementia is basically the personal care. With dementia the spotlight is on the person, not the condition, and the treatment is the care and attention they are given. It’s why the person needs to be known as fully as possible – carers need to have all the relevant information.”
The next two chapters are about navigating the maze of care and funding systems in the U.K. and about choosing a care home (in Britain) for people suffering from dementia.
Chapter 11 gives pointers for visiting and spiritual support.
Again some quotes: “Many people feel at a loss when visiting, particularly when the person doesn’t seem to recognize them, or will forget their visit the moment they leave. It may not make sense to you, but it doesn’t matter whether they remember your visit or not; but they will remember the feeling that your visit brought them.
It doesn’t matter if they don’t recognize you, either; but by being there, by being in relationship with them and honouring the ‘Thou’, you are affirming their worth.
You are bringing Christ’s presence with you.”
“Never assume that frailty and confusion exclude the work of the Holy Spirit (Hebrews 13:5). Don’t stay away from people with dementia when they’ve been a part of your fellowship or your circle. They are still in your ‘bundle of the living’
(1 Samuel 25:29), and now this has happened to them, they need you more than ever.”
From the points to ponder:
- Other Christians’ presence is reassuring; sometimes it’s comfortable to just sit alongside someone, without making conversation.
- Minister to the spirit of the person, with spiritual words and familiar Scripture verses.
In a detailed appendix at the end of the book you will find a list of organizations around the world that offer advice and help.