“Mom used to enjoy shopping, seeing friends, and going out to eat. After she was diagnosed with mild Alzheimer’s Disease, she’s changed. Now she just wants to stay at home and sit there.”
It’s logical to think that a person with Alzheimer’s Disease might be depressed. After all, isn’t it a depressing disease? Depression IS commonly seen in Alzheimer’s Disease and other types of dementia. Loss of interest is a key feature. However, there is another possibility that is frequently overlooked. That person may have apathy, a loss of interest in doing things.
Let’s take a step back. Dementia is a general term for any disease that injures multiple areas of the brain over time. Alzheimer’s Disease is the most common type of dementia. When the brain is injured by dementia, changes in cognition (things such as thinking and memory), emotional behavior and physical abilities occur. I discussed this previously.
Depression and apathy are emotion and behavior problems. They can result from dementia. They are similar but not the same. Let me explain by describing the difference between emotions, behaviors, and personality.
- Emotions are what people feel inside. Common emotions are sadness, happiness, fear and anger.
- Behaviors are actions that other people can see or hear such as laughing, yelling or restlessness.
- Personality is a description of a person’s typical way of feeling and behaving. “He’s not the same person” is a common comment about a person who has developed dementia. This means that people have noticed a major change in personality.
When a person is crying, it’s natural to think that the person is sad. But sometimes behaviors and emotions don’t match. For instance, a person can feel very sad but put on a happy face. The opposite is when a person may have very little interest in activities but does not actually feel sad. This is called apathy. When carefully evaluated, many people with dementia and apathy do not fit criteria for depression. These patients are not sad.
People often use the word “agitated” to describe changes in behavior among people who have dementia. Agitation means that a person is in some way hard to control. Apathy is almost the opposite of agitation. A person with apathy does very little. In addition, a person with apathy may have very little emotional expression or interaction. Although not described as often, apathy is very common, occurring in as many as 70% of people living with dementia.
Behavior is sometimes unpredictable and can flip/flop between apathy and agitation
People living with dementia can become anxious and afraid to go outside. Apathy is different. A person with apathy may still enjoy an activity and not be afraid. But they have very little interest in starting the activity. This can be misinterpreted as “being lazy.” However, the apathy is due to injury in certain parts of the brain. You can think of it as having a broken ignition in which a car won’t start.
Apathy is a problem. A person can do progressively less and less. In severe cases, a person can end up being bedridden.
Is there a treatment?
Many medications have been used to treat apathy. These include medications for Alzheimer’s disease, antidepressants and stimulating drugs. These medications may help but there is no high-quality evidence that they are effective overall. Newer medications are being researched but are not yet proven.
Certain approaches by a caregiver work better. Questions such as “Do you want to go to the store?” will usually be answered “No.” A better approach is to use a friendly tone of voice and say: “Mom, I want you to come to the store with me.” You can also try the “Doctor Said” approach: “The doctor said you need to go for a walk.” Establish a routine schedule, just like going to school. At mild stages of disease, giving a choice is helpful and is better than asking yes/no questions. For instance you can ask: “Would you like to go to the park or to the store?”
Do the best you can. That’s all you can do.
Managing apathy is hard. The person with apathy is not unhappy but apathy results in further decline in overall function and health. Getting an apathetic person to go out and do things will stimulate the brain. The person may also enjoy the activity. But it is a great deal of work for a caregiver. Even getting a person to talk can be hard.
The patient may not get depressed but what about the caregiver? The best that a caregiver can do is to understand and be realistic. A caregiver can start to feel like “I can’t take this any more.” Things usually go downhill after that. It’s time to take a break. It’s OK not to succeed every day. Just do the best that you can. Be happy for the great days and accept the not great days. That’s all you can do.
- Every person with dementia is different. The problems that emerge depend on which part of the brain is injured.
- Apathy is common. There is a loss of interest in activities and interactions.
- Apathy and depression are similar in certain ways but they are not the same.
- Apathy can be very stressful. Too much stress makes things worse for both the patient and the caregiver.
PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.
Never looked at it that way. Thank you for the education and great tips.
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