What I’ve Learned about Dementia
My wife and I are in our early 80's. My wife was diagnosed with AD in 2010. Initially it was devastating with a bleak future. That is until I discovered and read ‘Contented Dementia’ by Oliver James. This book taught me that there is something you can do to take away the fear and much can be done to maximise the patient’s quality of life. What follows is what I have learned on this journey.
Dementia is not a disease in itself.
Dementia is a word used to describe a group of symptoms. These can include the gradual loss of memory, communication skills and the ability to think and reason clearly.
Alzheimer's is a disease that causes dementia. It is probably the best-known cause of dementia, accounting for about two-thirds of cases in the elderly. About 500,000 people in the UK have Alzheimer's.
Other diseases can cause dementia. After Alzheimer's, the most common causes of dementia are vascular dementia, dementia with Lewy bodies and frontotemporal dementia.
My experience and research has to do with Alzheimer’s. Even with Alzheimer’s, symptoms vary from individual to individual.
What these conditions have in common is memory loss and the consequences of that.
However, memory loss is not necessarily an indication of dementia. When someone is suffering from memory problems, GPs will consider other possible causes before concluding whether the patient has dementia. There is a long list of things that can affect your memory that are NOT dementia;
To understand the effects of memory loss due to dementia, several analogies help: the brain acts like an onion; the outer layers are recent events such as what I had for breakfast; inner layers are early events such as childhood. As outer layers die and peel away, recent memories disappear and the inner layers (memories) become the present. A better analogy uses a photograph album. Every event is recorded as a picture comprising a fact (the image) and associated feeling (the frame). For someone with dementia, a photograph in which the facts of what just happened are not stored, although the associated feelings are stored. As time goes on there are more and more blank photographs. When someone asks us a direct question, we look in our photographic album for facts. This presents the person with dementia with a problem because all they see are blank photographs, causing distress and anxiety. Feelings become much more important than facts. They can remember that they were just upset, angry or frightened but don’t remember why.
How Memory loss impacts on day-to-day life
As dementia progresses the patient’s behaviour - the things they say, do or don’t do - will surprise, or even shock. How we react to the inevitable annoyance, frustration, anger and stress this alarming behaviour causes will determine a) the patient’s rate of decline and b) both the patient’s and the carer’s well-being. If we follow our natural tendency and attempt to correct the patient’s behaviour, then the patient’s condition will go downhill fast, stress levels and despair will increase. Confinement to a nursing home will be sooner rather than later. It’s like trying to sail forward into a headwind, it gets you nowhere, you have to learn to tack.
When caring for someone with dementia it is important to recognise the profound difference between our own sense of reality and that of someone with dementia. We are aware of our surroundings (where things are), the seasons, the time of day, what is happening, who we are, who our friends and relatives are and what has happened recently. When our memory fails us, all of this current awareness disappears; we have a different reality based on our distant past. There is therefore no point in trying to bring this person into our reality, we have to learn how to understand their reality and interact accordingly.
Not knowing who you are, where you are, what you are doing here is very frightening - wanting to ‘go home’ is quite common. It’s only in later stages of the condition, or, if under the influence of psychotic drugs, are they unaware of this frightening state.
Given that the patient cannot change, the onus is on the carer to accept and adapt his/her reactions. This means controlling one’s own natural tendencies, emotions and reactions. To avoid causing distress to someone with dementia, there are several rules that are known to work:
Do not ask “Remember when…?” If they can’t remember, this can be a frustrating or painful experience.
Having to answer the same question several times can be frustrating, but repetition will happen. There is no benefit to showing your frustration to somebody with dementia. Saying ‘I've just told you that’ only reminds the person of their condition.
Keep sentences short and to the point. Long, complex sentences can be difficult to grasp for somebody with dementia. It’s difficult to process several ideas at once as cognitive abilities slow down, so it’s better to give directions or instructions one step at a time.
A dementia sufferer will often display childlike behaviour. Be careful not to chastise or respond like a parent or teacher as this can evoke bad memories and deny them their independence.
Avoiding red flags: as an example, a person living with dementia may forget about a past bereavement or ask for somebody who has passed away. Reminding them of a loved one’s death can be painful, even causing them to relive the grief they've already experienced. In any event they won’t remember what you told them so what do you do the next time? Distraction is an important tool. For example, when the loved one is anxious or agitated, I have found that playing familiar music can have an immediate calming effect.
Having recently read Steven Sabat's book I have found new ways to re-discover what is still there in my wife and how to tap into it.
The more you learn about dementia the easier caring becomes but it's still not easy.
Books I have found helpful:
‘Contented Dementia’ by Oliver James
‘My Bonnie’ by John Suchet. A very readable biography.
‘Dementia’ The One Stop Guide by June Andrews
Alzheimer’s Disease & Dementia ‘What everyone needs to know’ by Steven R Sabat
‘Still Alice’ by Lisa Genova.
‘The Selfish Pig's Guide To Caring’ by Hugh Marriott.
My wife and I are in our early 80's. My wife was diagnosed with AD in 2010. Initially it was devastating with a bleak future. That is until I discovered and read ‘Contented Dementia’ by Oliver James. This book taught me that there is something you can do to take away the fear and much can be done to maximise the patient’s quality of life. What follows is what I have learned on this journey.
Dementia is not a disease in itself.
Dementia is a word used to describe a group of symptoms. These can include the gradual loss of memory, communication skills and the ability to think and reason clearly.
Alzheimer's is a disease that causes dementia. It is probably the best-known cause of dementia, accounting for about two-thirds of cases in the elderly. About 500,000 people in the UK have Alzheimer's.
Other diseases can cause dementia. After Alzheimer's, the most common causes of dementia are vascular dementia, dementia with Lewy bodies and frontotemporal dementia.
My experience and research has to do with Alzheimer’s. Even with Alzheimer’s, symptoms vary from individual to individual.
What these conditions have in common is memory loss and the consequences of that.
However, memory loss is not necessarily an indication of dementia. When someone is suffering from memory problems, GPs will consider other possible causes before concluding whether the patient has dementia. There is a long list of things that can affect your memory that are NOT dementia;
- Loss, such as the death of someone, a divorce or job loss
- nervous tension or worry
- noise or other distractions
- general medicines, particularly if you are taking more than four
- overuse of alcohol
- poor health
- sadness and depression
- side effects of sleeping pills or other sedatives
- sleep deprivation
- some infections, particularly in older people (chest infections and urine infections are notorious)
- the menopause
- thyroid disorders
- too many things on your mind
- vitamin B12 deficiency
- ageing
To understand the effects of memory loss due to dementia, several analogies help: the brain acts like an onion; the outer layers are recent events such as what I had for breakfast; inner layers are early events such as childhood. As outer layers die and peel away, recent memories disappear and the inner layers (memories) become the present. A better analogy uses a photograph album. Every event is recorded as a picture comprising a fact (the image) and associated feeling (the frame). For someone with dementia, a photograph in which the facts of what just happened are not stored, although the associated feelings are stored. As time goes on there are more and more blank photographs. When someone asks us a direct question, we look in our photographic album for facts. This presents the person with dementia with a problem because all they see are blank photographs, causing distress and anxiety. Feelings become much more important than facts. They can remember that they were just upset, angry or frightened but don’t remember why.
How Memory loss impacts on day-to-day life
- You cannot work things out
- Frequently forgetting key dates, such as appointments or relatives' birthdays
- Asking for things or for information over and over again
- Forgetting what happened earlier in the day
- Getting lost or wandering
- Difficulties concentrating
- Problems following conversations or TV programmes
- Confusion
- Spatial awareness, cupboards, rooms etc.
- Sequences such as making a cup of tea or getting dressed cannot be remembered.
As dementia progresses the patient’s behaviour - the things they say, do or don’t do - will surprise, or even shock. How we react to the inevitable annoyance, frustration, anger and stress this alarming behaviour causes will determine a) the patient’s rate of decline and b) both the patient’s and the carer’s well-being. If we follow our natural tendency and attempt to correct the patient’s behaviour, then the patient’s condition will go downhill fast, stress levels and despair will increase. Confinement to a nursing home will be sooner rather than later. It’s like trying to sail forward into a headwind, it gets you nowhere, you have to learn to tack.
When caring for someone with dementia it is important to recognise the profound difference between our own sense of reality and that of someone with dementia. We are aware of our surroundings (where things are), the seasons, the time of day, what is happening, who we are, who our friends and relatives are and what has happened recently. When our memory fails us, all of this current awareness disappears; we have a different reality based on our distant past. There is therefore no point in trying to bring this person into our reality, we have to learn how to understand their reality and interact accordingly.
Not knowing who you are, where you are, what you are doing here is very frightening - wanting to ‘go home’ is quite common. It’s only in later stages of the condition, or, if under the influence of psychotic drugs, are they unaware of this frightening state.
Given that the patient cannot change, the onus is on the carer to accept and adapt his/her reactions. This means controlling one’s own natural tendencies, emotions and reactions. To avoid causing distress to someone with dementia, there are several rules that are known to work:
- Do not ask direct questions such as “what did you have for lunch” - they won’t remember having had lunch.
- Listen and learn what interests them - base conversations on their world.
- Do not contradict or argue - always agree with everything they say.
Do not ask “Remember when…?” If they can’t remember, this can be a frustrating or painful experience.
Having to answer the same question several times can be frustrating, but repetition will happen. There is no benefit to showing your frustration to somebody with dementia. Saying ‘I've just told you that’ only reminds the person of their condition.
Keep sentences short and to the point. Long, complex sentences can be difficult to grasp for somebody with dementia. It’s difficult to process several ideas at once as cognitive abilities slow down, so it’s better to give directions or instructions one step at a time.
A dementia sufferer will often display childlike behaviour. Be careful not to chastise or respond like a parent or teacher as this can evoke bad memories and deny them their independence.
Avoiding red flags: as an example, a person living with dementia may forget about a past bereavement or ask for somebody who has passed away. Reminding them of a loved one’s death can be painful, even causing them to relive the grief they've already experienced. In any event they won’t remember what you told them so what do you do the next time? Distraction is an important tool. For example, when the loved one is anxious or agitated, I have found that playing familiar music can have an immediate calming effect.
Having recently read Steven Sabat's book I have found new ways to re-discover what is still there in my wife and how to tap into it.
The more you learn about dementia the easier caring becomes but it's still not easy.
Books I have found helpful:
‘Contented Dementia’ by Oliver James
‘My Bonnie’ by John Suchet. A very readable biography.
‘Dementia’ The One Stop Guide by June Andrews
Alzheimer’s Disease & Dementia ‘What everyone needs to know’ by Steven R Sabat
‘Still Alice’ by Lisa Genova.
‘The Selfish Pig's Guide To Caring’ by Hugh Marriott.
