What is dementia?

Introduction

Many people think you need to be an expert to care for a person with dementia. Imagine instead that you are old, confused and need someone to care for you. What sort of person would you choose to look after you? Most of us would want someone kind, compassionate, loving and caring. As a carer, you are in a special and privileged position to meet those needs.

This guide gives an insight into caring for an older person with dementia. We hope that after reading it you will have a greater understanding of the person you care for.

Dementia care is about focusing on the individual and their own understanding of what is happening to them. It is all about relationships and person-centred care.

What is dementia?

The word dementia describes conditions that cause a gradual loss of mental ability. This affects a person’s ability to remember, learn, understand, communicate and reason. There are often changes in behaviour, and a gradual loss of the skills needed for ordinary daily activities.

The two most common types of dementia are:

• Alzheimer’s disease
• Vascular dementia, also called multi-infarct dementia

Alzheimer’s disease

Alzheimer’s disease is the most common form of dementia. It was first described as a physical disease of the brain by the German neurologist Alois Alzheimer. During the disease, “plaques” and “tangles” develop in the brain and brain cells die. They act like roadblocks, stopping messages getting to and from the brain.

For example, when a person’s bladder is full, a signal is usually sent to the brain, which processes it, and the person goes to the toilet. If that signal is blocked, the person may not know they need to go. Over time, more parts of the brain are damaged.

Alzheimer’s is a progressive disease. No two cases are the same, and people experience the illness in their own way.

Vascular dementia

Vascular, or multi-infarct, dementia is caused by small strokes affecting the brain. It can cause speech problems, emotional swings and depression. The brain relies on a network of blood vessels to bring it oxygen. If the oxygen supply falls, brain cells are likely to die.

Symptoms can appear suddenly after a stroke, or over time through a series of small strokes called transient ischaemic attacks (TIAs). These sometimes happen at night, and a person may say they feel unwell in the morning. The condition often progresses in steps, with periods in between when it stays the same. Some people have dementia caused by both Alzheimer’s disease and vascular disease.

What behaviour to expect

A person with dementia may:

• Be confused about where they are
• Mistake day for night, for example getting up at 1am to start the day
• Wander outside in the garden or in the street
• Be confused about their own circumstances, such as how old they are or who is still alive
• Be restless or repeat things, such as pacing up and down or picking at their clothing
• Become distressed, tearful or angry
• Withdraw, stop communicating or forget the names of things
• Not recognise the person who cares for them every day
• Become verbally or physically aggressive
• Have a poor short-term memory

You may find some of this challenging, irritating or distressing. You might feel angry and frustrated at not being able to get through to someone or reason with them. Sometimes our own fear makes us defensive, and we start to treat the person with dementia as someone different from ourselves, someone we could never become. That can lead to the person being ridiculed or even abused.

People with dementia are still people, with their own lives and personalities, and the same right to respect and dignity as anyone. They are not children and they are not mad. They need our help to live their daily lives with the illness.

Meeting each person’s needs

Physical care

As a carer you may help a person with very personal tasks, such as washing, dressing and bathing. Imagine having to give up your independence in these things. It can be very difficult and frustrating, especially for someone who is confused and may not understand why they need help or what you are about to do.

Make these tasks easier by talking about what is happening and why. If a person refuses to get dressed or have a wash, try to understand what is behind it. If you cannot persuade them, ask yourself whether it really needs to happen right now, especially if it is causing them distress.

It is easy to ignore what a person with dementia is saying, especially if they often cry out or groan. Ignoring them is not an option. A person who cries out in the bath may be telling you the water is too hot or too cold. Always check that someone who is crying or groaning is not in pain.

Eating and drinking

Some people with dementia forget they have just eaten and ask for more food and drink. Do not argue with them. Try to hear what they are saying: perhaps they are still hungry. Keep an eye on what they eat and drink, as they may not be having enough. Sometimes they want the attention that comes with a meal, and a cup of tea and a biscuit is enough.

Others may insist they have just eaten when a meal is offered. Perhaps they are not hungry, or they would like something else and cannot say so.

A person who refuses food may have a physical reason, such as a cold, an infection, or problems with their teeth, dentures or swallowing. These may need to be looked into by a specialist. As the carer who knows them well and is trusted by them, you are in the best position to notice changes in their behaviour or mood.

Mealtimes

Mealtimes are often the highlight of the day. A person with dementia can enjoy food as much as anyone, although they may need help to make choices and to eat. A confused person can usually still decide what they want, and it can help to ask people with memory problems what they would like nearer the mealtime. Someone who cannot speak may only be able to choose by refusing what is offered. Those choices need to be respected. It is also worth noting what they particularly enjoy.

Table mats that stand out from the table or tablecloth can help, and research has found that red plates encourage people to eat. A table laid with lots of knives, forks and spoons can be confusing, so a simple setting, or giving the cutlery needed with each course, can be easier.

Responding to what a person says and feels

Some people with dementia forget the names of things and get frustrated. They may know what they want to say but cannot put the sentence together. It takes patience and prompting to help them make themselves understood.

A person with dementia may see or hear things that are not there. Telling them there is nothing there can be frustrating for them, because for them it is real. For that moment, go along with their experience.

It is easy to treat a person with dementia like a child. They are adults, with a whole life history that has made them who they are. Sometimes a person will be living in the past, 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 skills a person still has

Other people may think careless dressing shows a lack of interest, when it may simply be trouble with buttons or zips. Carers sometimes think they have to dress the person to avoid embarrassment. What matters to the person is keeping as much independence, dignity and self-esteem as possible by doing what they can for themselves. Choose clothes that are easy to put on and take off, and lay them out on a bed cover of a contrasting colour so they can be seen.

The physical environment

Research at Boston University by Dr Alice Cronin-Golomb found that dementia affects how people see colours. Using a different colour for different areas can help people find their way around their home. Choose wall colours that contrast with the things in the room, and put bright cushions on dining chairs and colourful throws on sofas to draw attention to them.

Continence

Incontinence can be difficult for a person with dementia. It is important to find the cause, to see whether the problem can be solved, and the GP or a continence advisor can help. There may be a simpler reason. Can the person find the toilet? Does the door look like every other door? A beautifully decorated home is no help if the person cannot find the toilet, and clear signs can solve the problem.

Confused about confusion

Not all older people become confused, and confusion is not a natural part of ageing. Other conditions can make someone temporarily confused and look like dementia, such as a urine infection, the side effects of medication, a high temperature or a chest infection. Be aware of these, especially when someone who is usually alert suddenly becomes confused, and ask their GP for advice.

Dementia is often confused with depression. An older person with depression may be agitated, sleep badly and struggle to think clearly, which can look like dementia. Depression is common in older people but it can be treated, so it is important to tell the two apart.

If the person you care for suddenly seems confused, has anything happened to them recently? Have they lost a close friend? Some people have both depression and dementia, and the depression should still be treated. This is particularly likely in someone who is aware that they are becoming more confused.

Relatives and friends

Many people have friends or relatives who visit and know them well. Visitors can help you learn about the person you care for, their likes and dislikes, and the cause of a particular worry, especially if it relates to the past.

Relatives and friends may feel guilty and frustrated as someone they love becomes confused and lost to them. A person who is usually calm may be agitated or upset after a visit from loved ones. Never assume the visits are a bad idea. They may need to talk about their feelings or the memories the visit has stirred. People do not have to be cheered up or protected all the time.

Taking care of yourself as a carer

Caring for people with dementia is challenging. You may not always feel patient or interested, and there may be times when you are at the end of your tether and wish the person could behave “normally”. You may even be tempted to shout. That is never acceptable. If you reach that point, you need to take care of yourself, which might mean asking someone else to help or to take over for a while so you can have a break.

Live in the person’s world

Never question, scold or try to reason with a person with dementia. Join them in whatever place or time they are in, and find joy with them there. Some basic rules:

• Do not try to reason with someone who has lost the ability to reason. Go along with their thoughts.
• Do not dwell on a problem. Gently distract the person with another task, situation or thought.
• Do not tell the person they are repeating themselves. React as if it is the first time you have heard the story.

Conclusion

Thank you for the care and support you give to the person with dementia. For the person with dementia, it is a journey of emotions: anger, fear, depression and resentment, and also joy, laughter and love. The more you try to understand them, the more you will be able to relate to them as an individual with a past, a present and a future, and not just as a person with dementia.