Dementia is caused by changes in the brain that affect memory and thinking. This can affect the person’s ability to function in daily life, including communicating with people around them. These changes can also cause changes in mood and behaviors. These changes become more noticeable and severe as dementia progresses.
Changes in Communication
The person may not be able to make others understand them or may not be able to understand others. This is a very common problem. Problems include:
Trouble finding the right words
Able to read, but not able to understand or retain the information
Not able to read
Trouble understanding someone on the telephone
Not able to focus on tasks
What can I do to help?
Help correct any vision or hearing problems.
Ensure the person is wearing their glasses and that the room is well lit.
If the person wears hearing aids, make sure the person is wearing them.
Reduce background noise (such as turn down the TV or radio).
Sit facing each other, so the person can see your face and you can maintain eye contact.
Speak slowly and clearly. Use simple words and suggest one thing at a time. Allow enough time for the person to respond. If they do not respond, try asking the question again.
Use short, one-step commands if you ask the person to do something.
If the person is having trouble finding the right word, you could try to help them. Though this can cause frustration and stress for some people with dementia.
Maintain a calm tone of voice while you talk to them, as well as a relaxed body posture. Patients with dementia can sense when you are frustrated or upset, which can make them frustrated or upset.
There may be times when it’s just too hard for the person to converse. It might be best to try again another time.
As the ability to talk aloud declines, non-verbal ways of talking becomes more important for the person. Look at how the person is acting, as this may tell you that they need or want something but are just not able to tell you what that is.
Behavioral and Psychological Symptoms of Dementia (BPSD)
Persons with dementia often develop behaviors that may represent something they need or need to do. This is very common if they cannot verbally tell you what they need. For instance, a person might pace back and forth when they need to use the restroom. These behaviors are known as behavioral and psychological symptoms of dementia, or BPSD.
About 9 out of 10 patients with dementia will have one or more BPSD. Other symptoms include being less interested in usual activities or they may follow other people around. Other symptoms can be more aggressive, such as hitting or spitting. These behaviors can be very hard for the family and caregivers to deal with.
More withdrawn and less interested in things
Making repetitive noises
Eating or drinking a lot
Following others around, or “shadowing”
Certain behaviors may represent very different needs for different people with dementia. For example, while pacing might mean that one person needs to use the restroom, it may mean that someone else is bored or anxious.
To figure out what a behavior means for your loved one, keep a journal or notebook with what you observe. Also, keep track of:
What time of day did the behavior occur?
Who was there with the person?
Where the person was at?
What was going on right before the behavior happened
What did you do to try to help the person? Did it work?
By writing down what you observe you can find patterns that may help you figure out the reason for the behavior. Share what you’ve found with other people who might spend time or take care of your loved one. If your loved one is in the hospital, share what you observed with hospital staff. Being in a hospital can worsen behaviors because it’s a new place and they are not feeling well.
If a sudden change in emotion or behavior occurs, the doctor needs to be told. The doctor and medical team can look for any causes that can be treated such as an illness, injury, or side effects of medicines. Other factors could be stress, fatigue, and change in routine or environment.
Just as problems with memory and thinking worsen over time with dementia, behaviors can also worsen. Behaviors might also come to mean something else than what they used to. If you find that what used to help no longer helps, keep track of behaviors again to figure out what the new pattern is. Sometimes, patients may need medicines to help. Talk with your loved one’s doctor if you are having trouble dealing with the behaviors on your own.
Emotional Changes and Dementia
Behaviors can also represent psychological or emotional changes caused by dementia. Brain damage caused by dementia often causes people to lose control of emotions. They may not be able to express feelings in the right ways. They are not doing this on purpose. It’s the dementia.
Not all people with dementia show changes in emotion, but many can feel depressed, anxious, frustrated, fearful, angry, or suspicious. These feelings may be subtle and short-term. Or, they may be widespread and hard to manage. All of this may change as the dementia gets worse.
Depression is not a normal part of aging. It can occur in persons with Alzheimer’s disease or other types of dementia. The person with dementia might not be able to say that they are feeling sad or down but may show symptoms of being depressed. These symptoms include:
Physical changes, such as decreased energy, changes in appetite and sleep habits, aches and pains that do not respond well to treatment, and weight loss.
Mood changes, such as feeling sad, bored, empty, hopeless, or anxious. People might also lose interest and pleasure in things they used to enjoy.
Behavior changes, such as acting restless, withdrawn, irritable, having trouble staying focused, crying, neglecting self and other duties, and poor hygiene.
Some patients might also have thoughts of death or suicide.
If you feel that your loved one has symptoms of depression, share your concerns with their healthcare team. Depression needs to be diagnosed by a healthcare provider. Depression can be treated and could improve quality of life.
People with dementia often have anxiety. It can be seen in many ways such as fidgeting, pacing, not being able to sit still, repetitive questions, or frequent phone calls to family or police at all hours. Dealing with an anxious person is stressful.
How can I help?
Distract the person by going for a walk or doing things they enjoy.
Provide support and reassurance.
Provide non-verbal forms of caring and security such as holding hands and giving hugs.
Provide greater structure for persons living alone. Hire aides, if needed. Take part in an adult day center program. Move to a place staffed 24 hours a day.
Do not try to reason with a person who is anxious. It will almost always do more harm than good.
Talk about your loved one’s anxiety with the doctor.
Frustration and Anger
You need to try to figure out the causes of frustration and anger. Sometimes the link between activity and frustration is easy to see (i.e. anger about not being able to balance a checkbook). There may not be a link to an event and the emotions might seem to appear without warning. These outbursts can be scary for families and caregivers. Remember, your loved one does not mean to do this. It is a result of the dementia.
How can I help?
Try to stay calm.
Postpone events that may cause frustration and anger, if you can, until the person is having a better day.
Direct the focus elsewhere. The person may very quickly forget the cause of the problem.
Give them tasks that will build self-esteem.
Call for help right away if the person becomes a danger to self or others.
Keep careful records of angry outbursts, just like you would for other behaviors. Share what you observe with the person’s healthcare provider. In some cases, medicines may help.
Distrust of others is common. The person may accuse someone else of stealing things that are misplaced, lost, or hidden. They may also not want someone to help them. It can be hard when this happens, and it is hard to not take it personally. Your loved one is not acting this way on purpose. It is the dementia, not them.
How can I help?
Assess if vision or hearing issues could be causing these problems. Too much stimulation could also be the cause.
Respond to their fear and anxiety. Reassure them. Do not argue or confront.
Shift the focus away from the problem. Try to distract them by bringing up other topics or asking the person to help you with a task.
Have only a small number of caregivers. People with dementia might not trust people they do not recognize.
Discuss this behavior with the doctor. If they become so suspicious that it causes problems with care, there may be medicines that can help.
How can I help myself?
It can be hard and tiring to take care of someone with dementia. You are not alone.
Share your problems with your loved one’s healthcare team. They can help you find the best way to manage.
Join a support group. You are not alone, and you learn ways to cope that have worked for others.
Don’t forget to take care of yourself. You will be a better caregiver for your loved one when you do so.
The Alzheimer’s Association is a great resource. You can contact them at 1-800-272-3900 or www.alz.org.
Another good resource is the Alzheimer’s disease Education Resource Center. You can contact them at 1-800-438-4380 or www.nia.nih.gov/alzheimers.
Alzheimer’s & Dementia Alliance of WI is another great resource. You can contact them at 1-888-308-6251 or www.alzwisc.org