Dementia is a rapidly growing public health problem affecting around 50 million people around the world, according to a recent World Health Organization (WHO) report. It is a major cause of disability and dependency among adults, often causing significant caregiving and financial stress on families.

Dementia refers to a group of symptoms, including memory loss, confusion and trouble with problem-solving, severe enough that it disrupts daily life. Alzheimer’s disease is the most common form of dementia.

People with dementia may develop agitation or psychosis which can be very challenging for caregivers. Agitation is a state of excessive physical movement or aggression associated with emotional distress. Psychosis may include delusions, hallucinations, or disorganized thoughts, speech and behaviors.

The American Psychiatric Association (APA) has developed a guide to help family caregivers address difficulties with agitation or psychosis and to work with health care providers in making decisions about treating with medications. The Patient and Caregiver Guide is based on the APA’s 2016 practice guideline for providers, Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia.

A variety of factors can contribute to agitation. People with dementia may experience changes in the brain that make it difficult for them to express pain, discomfort or what they may need. Circumstances such as loneliness, too much stimulation or noise, frustration with doing simple tasks, loss of privacy or control, new caregivers or houseguests, or fear and fatigue from coping with dementia, can all contribute to agitation. Changes in the brain, medical illness or medication may contribute to psychosis.

Coping with Agitation

The first step is to see a doctor for a thorough checkup to evaluate any contributing factors, including physical causes or medication-related side effects.

The APA guide suggests trying non-medication options first, such as changing the environment or routines to help calm and reduce sources of agitation. For example, it may be helpful to create a calming environment, reduce noise and distractions, encourage activities such as walking, gardening or talking about memories or playing with a pet. Check for personal comfort that the person may have difficulty expressing, such as hunger, discomfort, hot/cold, skin irritation or fatigue. Simplify routines.

If a person has become agitated, the Alzheimer’s Association offers some suggestions on how to respond:

• Back off and ask permission; use calm, positive statements; reassure; offer guided choices between two options.
• Listen to the frustration. Find out what may be causing the agitation and try to understand.
• Provide reassurance. Use calming phrases such as: "You're safe here;" "I'm sorry that you are upset;" and "I will stay until you feel better." Let the person know you are there.
• Involve the person in activities to help divert attention away from the anxiety.
• Check yourself. Do not raise your voice, show alarm or offense, or crowd, criticize, ignore or argue with the person.

It may also be helpful to share your experience with others and to learn from others. You can join the Alzheimer’s Association’s online support community and message boards (ALZCnnected) to share what response strategies have worked for you and get ideas from other caregivers.

Consider antipsychotic medication

If you are considering antipsychotic medication, discuss the benefits and risks of medication and possible side effects with the doctor. If the decision is to use antipsychotic medication:

• Talk with the doctor about starting on a low dose.
• Monitor how the person responds and any side effects.
• Talk to the doctor about checking response at four weeks and stopping the medication within four months.