Dementia - emotional changes

Dementia can change the behavior of friends and loved ones. Such changes are very common, but they can place enormous stress on families and carers. It can be upsetting when someone who was previously gentle and loving begins to behave in a strange or aggressive way.

Coping with changed behavior can be very difficult, and managing it is often a matter of trial and error. Always remember that the behavior is caused by the condition, not the person.

Aggression#

Anger and aggression are often directed at family members and carers simply because they are closest. The behavior is outside the person’s control, and they may be quite frightened by it. They need reassurance, even when it does not seem that way.

Aggression can be physical, such as hitting out, or verbal, such as using abusive language. It is usually an expression of anger, fear or frustration. Sometimes a restriction meant to keep the person safe, such as locking a door to prevent wandering, leads to frustration. Aggressive behavior can also be a way for the person to try to get what they want.

If aggression appears, it is worth speaking with a doctor, who can check for any physical illness or discomfort and advise whether an underlying psychiatric illness may be involved.

Things that may help you manage aggression include:

• explaining what is about to happen in short, clear statements, such as “I’m going to help you take your coat off”, so the person is less likely to feel they are being attacked and react in self-defense
• approaching the person slowly and in full view
• working out whether the behavior is about getting something the person wants, and trying to anticipate their needs
• using activity and exercise to help head off some outbursts

Catastrophic reactions#

Some people with dementia overreact to a trivial setback or a minor criticism. This might involve screaming, shouting, making unreasonable accusations, becoming very agitated or stubborn, or crying or laughing uncontrollably or inappropriately.

This tendency to overreact is part of the illness and is called a catastrophic reaction. Sometimes such a reaction is the first behavior change that makes relatives aware of the dementia. It may be a passing phase that disappears as the condition progresses, or it may continue for some time.

Causes can include the stress of excessive demands in a situation, frustration from messages that have been misunderstood, or another underlying illness. This behavior can appear very quickly and can leave carers feeling frightened.

Trying to work out what triggers a catastrophic reaction can sometimes help you avoid it. Some carers find that keeping a diary helps them identify the circumstances in which the behavior occurs, so the trigger can be avoided in future.

Intimacy and sexuality#

People with dementia continue to need loving, safe relationships and caring touch. However, they vary in how they give and receive affection, and in how the dementia affects that ability.

As a result of the condition, some people become demanding and less aware of the needs of others, and less able to offer caring support to family and friends. They may also experience changes in how they express sexuality. Some continue to desire sexual contact, while others lose interest, or may display sexual behaviors that seem out of character.

Partners may have a range of feelings about continuing a sexual relationship with someone who has dementia, including rejection, distaste and guilt. It can help to discuss these feelings with a professional. Your doctor may be able to help, or can refer you to a counselor you can speak with confidentially. It is important to remember that any strange or uncharacteristic behavior is part of the illness and is not personal.

The person with dementia may no longer know what to do with their sexual feelings, or when and where it is appropriate to express them. Changes in sexual behavior can include:

• Increased sexual demands – which can be unreasonable and exhausting, often at odd times or in inappropriate places, sometimes with aggression if the needs are not met
• Loss of sexual inhibition – which can lead to sexual advances toward others, undressing or fondling in public, or mistaking another person for their partner
• Reduced sexual interest – the person may become withdrawn, or accept physical contact from others but not initiate affection

If sexual demands change, the carer may need to keep safely out of the way until the mood passes. Some partners describe feeling like an object. Once the person with dementia has had sexual contact, they may immediately forget it happened. On the other hand, carers can feel hurt and bewildered if their partner loses interest in intimacy.

To manage changes in sexual behavior, try to:

• consider all the possible reasons for the behavior, such as needing the toilet, discomfort or boredom
• gently discourage inappropriate behavior while staying focused on the person, not the behavior
• distract the person if possible, or redirect them to another activity
• include other forms of touch in the daily routine, such as massage, holding hands and embracing, so the person still receives loving physical contact

Support for carers#

Like all the challenges faced by families and carers of people with dementia, talking about these issues with an understanding person can help. Support and affection from friends and family help many carers, and talking through problems in a carer support group can also help. Knowing that others have been through the same experience can reassure you that you are not alone.

Your doctor may be able to refer you to appropriate professional help, and can connect you with local support groups and services for people affected by dementia. Many people find comfort and practical assistance at these meetings with others who understand what it is like to care for a person with dementia. Support groups bring together families, carers and friends under the guidance of a facilitator, who is usually a health professional or someone with first-hand experience of caring for a person with dementia.

Key points#

• Dementia can cause changes in the behavior of friends and loved ones
• Such changes are very common, but they can place enormous stress on families and carers
• Always remember that the behavior is caused by the condition
• Anger and aggression are often directed against family members and carers because they are closest
• A restriction such as locking the door may prevent wandering but may also cause frustration

Where to get help#