Apathy and Dementia: “Are they lazy” or “Why won’t they help?”

Apathy is the loss of feeling or motivation to do things, common in dementia, caused by damage to the frontal lobe. Symptoms of apathy include a lack of energy or motivation to do routine tasks, lack of engagement with others, and showing no concern for issues that others think should be worrisome. The blog reviews what to look for and what may be done to alleviate this symptom in those living with dementia.

This is the question I received recently:  What is going on with my mother? She has stopped doing everything! I know she can do it, but she won’t get up from bed or bathe herself any longer.  I told her in a strict voice that she could come out of the bath when she’d washed herself, but she just wouldn’t do it. She seems to have lost motivation to do absolutely anything.

Apathy : What is it?

Apathy is the loss of feeling or motivation to do things.  These are things that would have been meaningful or worthwhile. It may be an early symptom in dementia, especially fronto-temporal dementia, dementia associated with Parkinson’s disease or Lewy body dementia.  It can be a later symptom in Alzheimer’s dementia. 

The loss of interest or motivation can show up in many areas including basic hygiene, eating, or even socializing with friends. 

Families often tell me their person living with dementia (PLWD) is “lazy” or ‘“resisting”. This is not the case. People who suffer from dementia frequently have apathy as a symptom, much more so than those who don’t have the disease. In fact, while only 2-5% of older people without dementia experience apathy, whereas 50-70% of individuals with dementia do. Individuals with dementia frequently become apathetic because of damage in the frontal lobes of their brain. The frontal lobe regulates motivation, planning and how we complete tasks sequentially (step-by-step).

How do I know it’s apathy?

Many care partners report that these symptoms come and go – one day, the PLWD may do well and the next are unable (or what seems like unwilling) in the shower. This is often how issues in dementia present.  At first, intermittently, and then more consistently. As with many things in dementia, there are good and bad days. But apathy, once present consistently, does seem to linger.  

Many ask if the situation could be depression rather than apathy.  Many of the symptoms can be similar and overlap. Apathy is known for : 

• A lack of energy or motivation to do routine or daily tasks, such as getting out of bed, brushing their teeth or taking a shower
• A lack of engagement with others – in conversations, activities, interests.
• Not planning activities that previously had interested them 
• Showing no concern for issues that others think should be worrisome to them 
• Lacking an emotional response to news or personal events – even uninterested or detached

Depression may present similarly, but often has a more negative mood, more irritability or anger, disrupted sleep.  Your physician may try an anti-depressant, but they likely do not work when dementia-related apathy is the cause of the symptoms. 

What can be done?

Speak to the doctor

There is some evidence (in short term studies) that a few medications may be somewhat helpful.  Methylphenidate has been shown to improve thinking, functional status and caregiver burden in a 12 week study. Rivastigmine was evaluated in a 6 month study of 173 individuals living in a nursing home and found that 32 people had improved scores in apathy from their baseline scores. 

Structure

Creating a structure for the person in your care can be very helpful. Try to find tasks and activities that they will enjoy and find meaningful. Having a daily routine can be especially beneficial.

It can help to:

• reduce anxiety
• increase feelings of accomplishment
• make the person feel more in control

A daily routine could include:

• waking up at the same time each day
• eating breakfast, lunch and dinner at regular times
• having set times for activities such as bathing, dressing and grooming

Keep it simple

Breaking tasks down into simple steps can make them feel more manageable and achievable. For example, if the person is having trouble getting dressed, help them to choose one article of clothing at a time.

To encourage social interaction,  find social activities that the person in your care previously enjoyed. Spending time with other people can help reduce feelings of isolation and loneliness and be a great source of enjoyment.  Many families tell me that once PLWD is engaged, they do enjoy the activities.

Begin to provide support or oversight

Encourage the person to start an activity, such as dressing. Praise their progress and avoid criticizing them.  Many have found that not focusing on a question, but a more declarative statement can get the ball rolling.  Try – “It’s time for a shower; let’s go grab some towels and warm up the water”, rather than “Would you like to take a shower now?”

Take care of yourself

If you find yourself feeling frustrated, try to keep your cool–this will help prevent the other person from reacting poorly.

I suggest acknowledging your frustration to yourself whether this be by talking to friend/other family/therapist/support group or journaling. Once you take time to feel this frustration, sit in reflection – realize it is part of the disease and not personal.  It will not change the situation, but it will help you see it from a place of compassion and love.  And all aspects of the disease will, in time, pass. 

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Consider This

• Apathy is a condition, common in dementia, caused by damage to the frontal lobe. The frontal lobe regulates motivation, planning and how we complete tasks sequentially (step-by-step). 

• Speak to your physician to sort out the difference between depression and apathy – depression may respond to medications where apathy likely will not, though there is very limited evidence for 2 medications. 

• Realize that your adaptation to this symptom will be to provide oversight and strategic assistance, structure, and support.  

• Care partners can find apathy frustrating.  Take care of yourself, acknowledge your emotions and find emotional support for dealing with this aspect of dementia.