Apathy as a symptom of dementia

Apathy can be seen as indifference, as passivity, a lack of interest or enthusiasm or the loss of initiation. People with dementia may lose interest in activities or hobbies they once found interesting and fun. They often have trouble coming up with ideas for activities and may rely more on others to come up with things to do. Apathy is one of the most common symptoms of dementia, and the person with dementia is usually not aware of or bothered by it. Caregivers on the other hand may become tired and even frustrated in their efforts to engage the person. Read on to learn more about apathy, how it is different from depression, and get some tips for caregivers on how to cope and help a person who is living with this symptom of dementia.

A person with any type of dementia can have apathy, but it is particularly common in frontotemporal dementia. Apathy can start at any stage of dementia but often develops early on and becomes more prevalent as dementia progresses.

Types of apathy

• Affective Apathy: This apathy involves lack of emotional sensitivity. The person may appear to be indifferent and not to care about others. It can come across as lack of warmth or empathy. There may also be an absence of emotional responses, rarely showing emotional responses to both positive and negative events. For example, if a person hears their only granddaughter is having a baby,  or that someone they know has died, they may have no reaction.
• Behavioural Apathy: Behavioural apathy impacts the person’s ability to start and/or participate in tasks such as household chores, or hobbies, doing activities of daily living, seeking social activities, or getting exercise. For example, a person who attended bingo every week, or took daily walks, may choose not to go even if they previously enjoyed it.
• Cognitive Apathy: This apathy involves problems with initiating a cognitive activity or conversation. Their interest or curiosity in learning new things may be diminished. And, they may show a lack of concern for their own personal issues or what is occurring around them. With the inability to initiate a conversation, you may need to prompt the person with verbal cues.

Is it apathy or depression?

A common question many caregivers have is whether the person with dementia is depressed: “He just sits there doing nothing. Is he depressed? ” Given the symptoms of apathy described above, it is understandable that this question arises.

While apathy often resembles depression, not everyone with apathy is depressed. It’s important to note that apathy is not the same as depression. People with apathy don’t typically have feelings of sadness, dissatisfaction, hopelessness or thoughts of worthlessness. They might appear or feel uninterested, disengaged, or unexcited, but are not necessarily depressed. If you are concerned, it is best to talk to your health care professional.

How can I cope with apathy?

Recognize that the person with apathy is not intentionally refusing to participate in activities and is not “lazy”. Nor does it mean the person “needs to try a little harder” or just show some “spark” of interest. Remind yourself that the apathy is likely a symptom of his or her disease. You can try to find out why the person is not able to do their usual activities. Questions to consider are:

• Have they forgotten how to do the activity? or
• Are they forgetting to do the activity?

Tips on what can help

•  Set up an easy daily routine with a schedule, calendar and reminders. A person with apathy may find it easier to start an activity once it becomes a habit.
• Tailor individual activities to longstanding interests to capture their attention.
• Initiate an activity (e.g. eating) by using verbal cues or hand-over-hand technique. This may be enough to help the person to complete the task or activity independently.
• Break down the activity tasks into smaller steps.
• Go on regular outings or to a regular drop-in program (when such programs are resumed post pandemic).
• Try different ways of suggesting activities. For example, instead of asking, “Do you want to go for a walk?” you can say, “It’s time to go on our afternoon walk” and hand them their coat and shoes.
• Use the things that the person still enjoys to help them get moving. For example, make their preferred foods, have visits with grandchildren, listen to favourite music or watch a movie or show they have enjoyed.

A cautionary note about watching television. Before the person was affected by the symptoms of dementia, watching television may or may not have been a routine part of everyday life. With apathy, the person may sit in front of the TV for long periods, no matter what program is on.

In a study questionnaire, relatives of persons with dementia responded that the physical closeness of others seemed to affect the habits of watching television. What mattered most to the person was sitting with someone close to them. Whenever possible, watch TV together. It can make this passive activity t more meaningful with the added benefits of stimulation and social interaction.

Tell us about a time or activity when you tried to engage someone with apathy.