Many people think you need to be an expert when caring for a person with dementia. On the contrary, imagine if you are old, confused and in need of someone to care for you. What sort of person would you choose to look after you? I am sure that you would agree that you would rather have someone who is kind, compassionate, loving and caring attending to your needs. Therefore, as a carer, you are in a special and privileged position to meet those needs.
I have written this to give you an insight into and assist you in caring for the specialist needs of an elderly person suffering from dementia. I hope that after reading it, you will have been challenged and have a greater understanding of the person you care for.
Dementia care is about focussing on the individual and their subjective (or own) understanding of what is happening to them. It is all about relationships and person centred care.
What is dementia?
The word dementia is used to describe conditions that result in the progressive loss of mental ability which affects the person’s ability to remember, learn, understand, communicate and reason. There are also often changes in behaviour and a gradual loss of skills needed to carry out ordinary daily activities.
What are the two most common types of dementia?
- Alzheimer’s disease or dementia with Alzheimer’s type (DAT)
- Multi-infarct dementia or vascular dementia.
Alzheimer’s disease is the most common form of dementia, affecting around 700,000 people in the U.K. and this number is rising with a peak expected at 2036. The German neurologist Alois Alzheimer first described Alzheimer’s disease as a physical disease affecting the brain. Research studies suggest that acetylcholine is an important chemical involved with the transmission of messages within the brain. During the course of the disease ‘plaques’ and ‘tangles’ develop in the structure of the brain leading to the death of brain cells acting as ‘roadblocks’ which prevent the transmission of communications from and to the brain. For example, when a person’s bladder is full, a signal is usually sent to the brain, which processes the message and leads to the individual acting on the information, in this case going to the toilet to empty their bladder. If that signal is prevented, then the consequences are well known. The ‘plaques’ and the ‘tangles’ increase during Alzheimer’s disease and over time, more parts of the brain are damaged with the brain shrinking from the sides of the skull. This is evident after an autopsy where the brain of a person with Alzheimer’s disease has deep crevices and dark furrows. Alzheimer’s is a progressive disease, which causes death, usually within seven years of diagnosis. No two cases of Alzheimer’s are likely to be the same. People will always experience illness in their own individual way.
Multi infarct dementia is the result of small strokes affecting the brain and this can cause speech problems, emotional swings and depression. The brain relies on a network of vessels to bring it oxygen-bearing blood. If the oxygen supply to the brain falls, brain cells are likely to die. The symptoms of vascular dementia can occur either suddenly, following a stroke or over time through a series of small strokes known as Transient Ischemic Attacks (TIAs). These sometime occur during the night and a person may report feeling unwell in the morning. The dementia progresses in a series of steps but there will be times in between when the condition plateaus and does not progress, and therefore they do not seem to get worse. Some individuals may have dementia caused by both Alzheimer’s disease and vascular disease.
What behaviour to expect from someone with dementia?
- Confusion as to where the person is.
- Mistake day for night, for example getting up at 1 am to start the day.
- Wandering outside in the garden or in the street.
- Confusion about personal circumstances, how old they are, who is still alive.
- Restlessness and repetitive behaviour, pacing up and down, picking at their clothing.
- Distress, tears and angry outbursts.
- Withdrawal, not communicating/forgetting names of items
- Not recognising the person who cares for them every day.
- Verbal or physical attack.
- Display poor short-term memory.
You may find some of this behaviour challenging, irritating or distressing to deal with. You might feel angry and frustrated at not being able to get through to someone and not being able to reason with them. Sometimes your own fear may lead to defensive behaviour, turning the person with dementia into someone different from ourselves, someone we imagine we could never become. This can lead to the person being riduculed or even abused. One must remember that people with dementia are still people with their own lives and personalities and have the same rights as ourselves for respect and dignity. They are not babies, they are not mad, but they do need our help in living their daily lives with the illness.
What can you do as a carer to meet individual needs?
As a carer you may be helping a person with very intimate physical tasks such as washing, dressing and taking a bath. Imagine having to give up independence in these things; it can be very difficult and frustrating for the person. It may be particularly difficult for those who are confused, as they may be less aware of their need for help and unsure about what you are going to do to them.
It is most important for you to make these intimate tasks easier by talking about what is going on, what is happening and why. If a person is refusing to get dressed or have a wash, it might be worth trying to understand what is behind this. If it is not possible to convince them you may have to ask yourself whether or not it is strictly necessary for them to wash or get dressed at this moment in time particularly if it is causing them distress.
It is very easy to ignore what a person with dementia is saying especially if they often cry out or groan. However, to ignore them is not an option. For example, a person who cries out in the bath may be trying to tell you that the water is too hot or cold. Always try to check that someone who is crying or groaning is not in pain.
Eating and drinking
Some people suffering from dementia may forget that they have just eaten a meal and ask for more food and drink. It is important not to reason with them but try to hear what the person is saying. Perhaps they are still hungry. It is important to keep an eye on what they are eating and drinking as they may not be having enough or may not be eating what has been given to them. It may be that they are in need of the attention that comes with a meal so offering a cup of tea and a biscuit might satisfy them.
Other people, when offered food and drink at meal times, may insist that they have just eaten. Perhaps they are quite satisfied and do not need another meal at present. Perhaps they want something else and cannot communicate this directly or simply do not like what is being offered.
A person refusing food may be showing some physical reason such as a cold, infection or having problems with their teeth or dentures or with swallowing. These things may need to be investigated. The person may need specialist attention to find out what is happening. You, as the carer, are in a unique position to contribute to their well-being. You are the one working most closely with that person, who knows them well and are trusted by them. You should hopefully be able to spot anything unusual or a change in their behaviour or mood.
Mealtimes are often the highlight of the day. A person with dementia can enjoy food as much as anyone else although sometimes they may need extra help in making choices about food and with eating itself. When it comes to choice of meals, however, a person who is confused can usually still decide what they want and it may be possible to ask people with memory problems what it is they would like nearer the meal time. A person who is extremely confused and who may not be able to communicate verbally may only be able to make a choice by refusing to eat something that you are offering them. These decisions need to be respected. Equally it is worth noting what is particularly enjoyed.
There are other things you might do for the person to help make eating more enjoyable and easier to manage. It has been found that the use of table mats which stand out from the table or tablecloth can be useful and research has shown that the use of red plates encourages eating. Some people may find it confusing to have many knives, forks and spoons to choose from and it might be more practical to provide a very simple table setting for them or to give the cutlery they need as each course is delivered.
Responding to what a person says and feels
Living with a person with dementia can have an effect on you as a carer. The sort of behaviour and communication problems you face can be difficult to understand. Some people with dementia may forget the names of items and get frustrated by this. They may know what they want to say but cannot put the sentence together. A lot of patience and prompting from the carer is required to enable that person to make themselves understood.
A person with dementia may hallucinate; they may see and hear things that are not really there. It can be frustrating for them if you as a carer tell them that there is nothing there. You need to understand that for them it is a real experience and for that moment in time you need to ‘go along ’ with their experience.
It is easy to look at the person with dementia as if they were a child or even a baby. This is of course the opposite of the truth because they are all adults with a whole life history which has formed them and which is part of them now. Sometimes that person will be living in the past in the sense that they say they are waiting for their husband to come home from work or their children from school. Try to go along with the ‘world’ they are in at that time.
Focus on the person’s remaining skills
Outsiders often perceive a person’s careless dressing as showing lack of interest when it may just be the inability to cope with buttons or zips. Often carers mistakenly believe that they have to dress that person to avoid embarrassment. But for the person with dementia what matters is that they retain as much independence, dignity and self-esteem as possible by doing whatever they can for themselves. To help a person to dress successfully, choose clothing that is easy to put on and take off and lay it out on the bed making sure it contrasts with the bed cover so it can be seen.
Research by Dr. Alice Cromin-Golomb at the psychology department at Boston University, has found that the disease affects patients’ reactions to colours. Sandra Harris, who specialises in interior design for Alzheimer’s patients, has found that using unique colours for different areas can help keep them orientated in their home and enable them to go from one room to another without getting lost. Try to find wall colours that
contrast with the functional objects in the room. Put bright cushions on dining chairs and colourful throws on sofas to draw attention to them.
Colour can also be used to camouflage objects to avoid. Placing a black mat inside the front door suggests a dark chasm that can’t be crossed. Many care facilities specialising in Dementia Care have found this to be a successful way of keeping residents safe from leaving the building unaccompanied.
Incontinence can be difficult for the person with dementia. It is important that the cause is investigated to see whether or not it is possible to solve the problem. Advice can be sought from GPs and continence advisors.
There may be another reason for the incontinence. Can the person find the toilet? Does it look like any other door or is it clearly marked? The home might be beautifully decorated throughout but if the person cannot find the toilet door, then there may be a problem. Appropriate signage can help solve this problem.
Confused about confusion
Although some people may appear to be confused in old age, it is important to remember that not all older people become confused. It is a natural part of the ageing process. There are other conditions that can cause people to become temporarily confused or disorientated and can look like dementia. For example, they may be confused as a result of a urine infection, or the side effects of medication, or a high temperature or a chest infection. It is important to be aware of these, particularly when a person who is alert suddenly shows signs of confusion. It is then best to seek advice from the person’s GP.
Dementia is often confused with depression. An older person with depression may show signs of agitation, sleeplessness and an inability to think clearly which mimic the symptoms of someone with dementia.
Depression can be very common in the elderly but it can be treated so it is very important to distinguish between the onset of depression and the beginning of dementia.
If the person you care for suddenly seems to be confused can you link the change to anything that has happened to them recently? Have they lost a good friend? It may be depression not dementia that is the problem. Sometimes a person may be suffering from both depression and dementia and again treatment should be sought for the depression. This is particularly likely in someone who is aware of his or her deepening confusion. The loss that they are facing cannot be ignored and it is likely that they may well be depressed.
Coping with relatives and friends
Many people will have some friends or relatives who visit and who know them well. Their visitors can be very useful in helping you to get to know more about the person
you care for; their likes and dislikes and they may help you to identify the source of a particular problem, especially if it relates to something in the past.
Many carers, relatives and friends may feel guilty and frustrated at the sight of someone they love becoming confused and lost to them. You may find that the person who is normally calm and easy to care for becomes agitated or upset after a visit from their loved ones. Never assume that the visits are a bad idea. It may be that they need to talk about their feelings or the memories that have been stirred up. As with everything else you need to be aware of the changes, both positive and negative, in the person that you care for and remember that people do not necessarily have to be cheered up or protected at all times.
Taking care of yourself as a carer
Caring for people with dementia is quite challenging. You may not always feel endlessly patient or interested and there may be times when you feel at the end of your tether and just wish that the person could behave ‘normally’. You may even be tempted to shout and be abusive. It goes without saying that this is NOT ACCEPTABLE behaviour from you. However if you do get to this point you need to take care of yourself. This might mean asking another person/family member to help you or to take over from you for a short while to give you a break.
Live in the person’s world
Never question, chastise or try to reason with a person suffering from dementia. Join them in the current ‘place’ or ‘time’, no matter where or when that might be and find joy with the person there.
People with dementia present numerous behavioural problems. Some basic ground rules are:
- Do not try to reason with someone who has lost the ability to do so but go along with their thought pattern.
- Do not dwell on a problem or issue but gently distract the person with another task, situation or thought.
- Do not tell the person that they are repeating themselves when telling the same story, but react as if it is the first time you have heard it.
Thank you for the continuing care and support you give to the person suffering from dementia. Remember, dementia, for the sufferer is not an intellectual journey, but a journey of emotions such as anger, fear, depression, resentment together with joy, laughter and love. The more you try to understand them, the more you will be able to relate to them as an indiviual, who has a past, present and future and not just as ‘the person suffering from dementia’