Chapter 3: Feelings, Memory and the Changing Mind

A Common Situation

A woman in her seventies has been married for nearly fifty years. Lately, her husband has been asking the same question several times in one afternoon: "What day is it today?" He has always been the one who managed the household money, but last month a bill was left unpaid, and he became angry and upset when she mentioned it. He spends more time sitting quietly by the window and no longer goes to meet his old friends on Thursday mornings. His wife tells herself that everyone becomes forgetful with age. At night, though, she lies awake wondering whether this is more than ordinary forgetfulness, whether he is unhappy, and how she should speak to him about it without hurting his pride.

Changes in feelings and memory can be harder for families to talk about than changes in the body. A stiff knee is easy to see and easy to mention; a change in mood or memory touches the heart of who a person is. This chapter explains, gently and in plain words, how feelings may change in later life, how ordinary forgetfulness differs from memory problems that affect daily life, and what the word "dementia" means as care and nursing textbooks explain it. It also offers ways to respond with patience and kindness. What is happening to any one person is a question for the person's doctor, and this chapter explains why speaking to a doctor early can help.

Feelings in Later Life

Later life often brings losses, and it is natural for these losses to bring feelings with them. An older person may have retired from work that gave them a role and a daily purpose. Friends, brothers and sisters, or a husband or wife may have died. The children may live far away. The body may no longer allow favourite activities, such as dancing, gardening or driving. Each of these losses can bring sadness, and several together can bring grief that lasts a long time. Many families find it helpful simply to remember how much the person has lost, and to let the person speak about it without hurrying to cheer them up.

One of the deepest losses can be the loss of independence. Needing help to wash, to shop or to go out can feel, to many older people, like losing their place as an adult in charge of their own life. This may show itself as stubbornness, irritation or refusal of help. A father who snaps "I can do it myself!" may be protecting his dignity rather than rejecting his family. Understanding this can make such moments less painful for the carer. It can also guide the way help is offered: with choices, with respect, and with as much of the task left to the person as possible, as Chapter 1 described.

Worry is common in later life too. Older people may worry about their health, about money, about being a burden to their family, about falling, or about what will happen to them in the future. Some worry about being alone at night or about strangers coming to the door. Worry often grows when a person is alone with it. Gentle questions, such as "Is anything on your mind today?", give the person a chance to share it. Practical steps can help as well: a telephone within reach, a daily call at a fixed time, or a clear plan for what will happen if the person feels unwell. Knowing that someone will come can calm a great deal of fear.

Low mood is also common, and it is important to understand it well. Everyone has sad days, and sadness after a loss is a natural part of life. Sometimes, however, low mood lasts for weeks and begins to affect daily life. The person may lose interest in things they used to enjoy, stop seeing friends, sleep much more or much less, eat less, seem very tired or speak of feeling worthless or hopeless. Care textbooks teach that lasting low mood in later life is not simply "part of getting old", and that it is worth telling a doctor about, because help is available. If the person you care for ever speaks of not wanting to live, or of harming themselves, contact their doctor or a helpline straight away; if they are in immediate danger, call the emergency number.

Feelings are not always shown in words. Many older people grew up at a time when it was not usual to speak about sadness or fear, and some feel that complaining would make them a burden. Instead, low mood or worry may show itself in other ways: more aches and pains than usual, tiredness, poor sleep, irritability, a loss of appetite, a sudden lack of care about appearance, or a wish to stay at home all the time. A son may hear only "I am fine" on the telephone, and notice on his next visit that his mother has stopped dressing in the morning. Paying attention to these quiet signs, and mentioning them gently to the doctor, can be a real act of care.

It would be wrong, though, to describe later life only in terms of loss. Many older people feel calmer and more content than they did when they were younger. They may have a clearer sense of what matters to them, more patience, a deeper understanding of people and a store of experience that younger family members value. Many enjoy small pleasures more fully: a good meal, a visit from a grandchild, music, the garden in spring. Older people often have a great capacity to adapt, built up over a lifetime of changes. When we care for someone, it helps to look for these strengths as carefully as we look for problems, and to give them room in daily life.

Ordinary Forgetfulness and Memory Problems

Some changes in memory and thinking are a usual part of aging. Many older people find that it takes longer to learn something new, to recall a name or to find the right word. They may walk into a room and forget why, or misplace their glasses. Thinking may become a little slower, and doing several things at once may be harder. These changes can be annoying, but they usually do not stop a person from living their everyday life. The person usually remembers the event later, or finds the glasses after a search, and knows that they have forgotten something.

Memory problems that affect daily life are different. Care textbooks describe signs such as forgetting recent events or conversations entirely, asking the same question many times without remembering the answer, getting lost in a familiar place, having difficulty following a conversation or a simple recipe, struggling with money or bills that were once easy, putting things in unusual places, or showing changes in personality and judgement. One useful way to think about it is this: ordinary forgetfulness is like misplacing a page of a book, while memory problems that affect daily life are more like whole pages going missing. Another clue is that the person may not be aware of what they have forgotten.

If you notice changes like these, it is natural to feel worried. It is also natural to hope that they will pass. A gentle first step is to watch for a little while and write down what you see: what happened, when, and how it affected the person's day. These notes are very helpful when you and the person speak with a doctor. It is worth remembering that memory and thinking can be affected by many things, such as poor sleep, low mood, worry, hearing or sight problems, too little to drink, an infection or other changes in health. Some of these can be helped once they are found, which is one reason why speaking with a doctor is so useful.

Care textbooks also teach an important difference between slow change and sudden change in thinking. Memory problems that appear gradually, over months or years, are worth talking about with a doctor at the next convenient time. Confusion that appears suddenly, over hours or a few days, is different. A person who was clear yesterday and today does not know where they are, cannot follow what is said, sees things that are not there or is suddenly very sleepy or very restless needs to be seen by a doctor promptly. Sudden confusion can be a sign of a change in physical health, and it should be treated as a reason to call the doctor the same day, or the emergency number if the person seems very unwell.

Talking with the person about memory changes needs care and respect. Many people are frightened by the thought of losing their memory and may deny or hide the changes. Others have noticed them already and feel relieved when someone speaks kindly about it. It can help to choose a quiet moment, to speak of your concern rather than of the person's failures, and to suggest a visit to the doctor as a general check: "I would feel better if we asked the doctor about how you have been sleeping and remembering things." Offering to go together, and letting the person decide how much you say during the appointment, keeps the person at the centre.

What Dementia Means

The word "dementia" is often used, but it is not always well understood. As care and nursing textbooks explain it, dementia is not one illness. It is a general word for a group of conditions that affect the brain and gradually change a person's memory, thinking, language, judgement and sometimes behaviour, to the point where everyday life becomes harder. There are several different kinds, and they may affect people in different ways. Dementia is more common in later life, but it is not a normal or certain part of growing old. Many people live into great old age without it.

Only a doctor can look into what is causing memory and thinking problems. The doctor may ask questions, listen to the family's observations, examine the person and arrange other checks, and may refer the person to a specialist. As mentioned above, some causes of memory problems can be helped, so it is always worth asking. Where dementia is found, an early conversation with a doctor still brings real benefits. It gives the person and the family time to understand what is happening, to learn about support and to plan for the future while the person can still take a full part in decisions about their own life.

Planning ahead is one of the most valuable gifts of early talk. A person in the early stages of dementia can often say clearly what they want: where they would like to live, who should help them with money and papers if they cannot manage, what kind of care they would welcome and what they would not. Families who have had these conversations often say later that they felt guided by the person's own wishes when hard decisions came. Chapter 13 looks at family talks and sharing the work, and Chapter 14 at help from outside the home.

Dementia usually changes slowly over time, and its course is different for every person. In the early stages, many people live much as before, with some help and reminders. Later, more help is needed with the wider tasks of the household and then with the basic activities of daily living. Changes in mood and behaviour may also appear, such as restlessness, suspicion or irritation, especially when the person feels confused, frightened, tired, in pain or overwhelmed by noise. Care textbooks teach that such behaviour is often a way of expressing a need or a feeling that the person can no longer put into words, rather than something the person does on purpose.

Dementia can affect much more than memory, and knowing this helps families understand puzzling moments at home. A person may lose track of time, so that evening feels like morning, or may not recognise a room they know well. They may have trouble finding words, or may understand less of what is said, especially when several people talk at once. Judging distance and depth can become harder, so that a dark rug may look like a hole in the floor, or a shiny floor may look wet. Everyday objects may become confusing, so that a person holds a toothbrush and does not know what to do next. Seen in this light, many difficulties at home make sense, and simple, calm adjustments, such as plain floors, good light and showing rather than telling, can help.

It is very important to know that a person with dementia remains a whole person. They keep their own history, character, likes and dislikes, and they keep their feelings, often long after many memories have faded. A person may forget a visit within an hour but still feel the warmth it left behind. They may not remember the name of a song but still sing every word. This is at the heart of person-centred care, the idea introduced in Chapter 1: the care is shaped around the person, not around the condition. Familiar routines, favourite music, old photographs, a well-loved chair and the voices of people they trust can bring comfort and a sense of safety.

Responding With Patience

Living with someone whose memory or mood is changing asks a great deal of patience, and patience runs out for everyone at times. It may help to remember that the person is not trying to be difficult. When a husband asks the same question for the fifth time, he is not testing his wife; he simply does not remember asking. Answering calmly, as if for the first time, often works better than saying "I already told you." A note on the table, a clear calendar or a board with the day and the plans written on it can sometimes answer the question before it is asked.

Arguing about facts rarely helps. If a person with memory problems says that they must go to work, or that their mother is coming to visit, correcting them may only bring distress, because to them it feels true. Many carers find it kinder to respond to the feeling behind the words. "You were always so busy at work. Tell me about it" or "You miss your mother, don't you?" can calm the moment and keep the person's dignity. Gently moving to another activity, such as a cup of tea, a walk or a look at photographs, can also help. In the same way, it is kinder not to test the person with questions such as "Do you know who I am?"

Simple changes in the way you speak can make understanding easier. Speak clearly, in short sentences, and offer one idea or one choice at a time. Showing helps as well: holding out a shirt while you say "Here is your shirt" is often easier to follow than words alone. Give the person time to answer. Use the person's name, face them and make sure that you have their attention before you start. A calm voice, a warm expression and a gentle touch on the arm, if the person likes it, often say more than words. Chapter 4 looks at talking, listening and respect in much more detail.

A steady daily routine supports both memory and mood. When meals, washing, rest and activities happen at roughly the same times each day, the day becomes easier to follow and less worrying. Meaningful activity matters too: helping to fold laundry, setting the table, watering plants, listening to music or looking at old photographs can give a sense of purpose and pleasure. Time outdoors, daylight and some gentle movement help many people feel calmer and sleep better. It is not necessary to fill every hour. A balance of activity and rest, chosen with the person, is what helps most.

A common and painful moment comes when a person with memory problems loses something and believes that someone has taken it. A mother may say that her purse has been stolen, and look at her daughter with suspicion. This can hurt deeply, especially when the daughter has given so much. It may help to remember that the person cannot remember putting the purse away, so theft seems the only explanation, and the fear behind the accusation is real. Instead of defending yourself, you might say, "That must be worrying. Let us look for it together." Many families find that the lost things often turn up in the same few places, such as a drawer, a coat pocket or under a cushion, and that keeping important items in one agreed place, perhaps with a spare, prevents many such moments.

Finally, it helps to be gentle with yourself. Caring for someone whose mind is changing can bring grief, as you notice the person changing in front of you, and it can bring guilt when you lose your patience. These feelings are shared by many carers, and they do not make you a bad carer. Taking short breaks, talking with someone you trust and asking for help are part of good care. If you notice that you are often exhausted or very low yourself, talk to your own doctor. Chapter 12 is given entirely to caring for the carer.

A Question to Think About

When the person you care for is upset, confused or low, what are the things, such as a certain song, a familiar place, a favourite food or a particular way of speaking, that seem to bring them comfort? You might begin a short list of these comforting things, add to it whenever you notice something new, and share it with others who help, so that everyone in the circle of care can use it.