“What we see often is that apathy is a symptom that can give a lot of information about the trajectory of the disease and what’s going on with the individual,” said Brianna Garrison, an expert in mental health for older adults and professor at Baylor University’s Diana R. Garland School of Social Work. Garrison says that apathy can cause a rapid decline in the functioning of patients and affect quality of life, resulting in older adults not being able to care for themselves.
“Apathy is often misunderstood in dementia and can be mistaken for a lack of behavioral disturbance, making it easy to overlook as a warning sign of further decline,” she said.
When caring for older adults, it’s important to pay close attention if they begin to display signs of apathy, which can look different depending on the individual. Social workers can play a role in working with older adults and caregivers by developing personalized plans that help stimulate engagement in activities and interests while offering other forms of support.
How Does Apathy Caused by Dementia Present in Older Adults?
Garrison describes apathy as a loss of interest in life activities or interactions with others, which can manifest in those with dementia. A person with dementia, a degenerative condition marked by memory loss and cognitive decline, may develop apathy over time — and apathy may not always be obvious. Those who experience this symptom can become unmotivated to perform regular life tasks, which can impair daily functioning, Garrison explained.
Garrison identified three types of apathy related to dementia:
Affective apathy: presents as a lack of emotion, an appearance of indifference, and the absence of empathy. People with affective apathy may seem like they don’t care about others or may lack the warmth that they had previously shown.
Behavioral apathy: presents as physical inactivity, such as indifference toward completing tasks. People with behavioral apathy may not walk around very much or may ignore tasks such as laundry, even if they are physically able to do so.
Cognitive apathy:presents as a disconnection to surroundings. People with cognitive apathy may not initiate speech or activities or may show an absence of interest in others’ activities. They may need prompting for conversation or appear zoned out.
Apathy can present at any stage of dementia and often develops early on, said Nalini Sen, director of research at the Alzheimer’s Society of Canada. It can persist as dementia progresses rather than come and go.
“When someone withdraws, they lose confidence in their ability to carry out a certain activity,” Sen said. “So it’s a concern about how to manage their emotional responses and identifying that there has been a change there.”
People with dementia who experience apathy are more likely to be impaired in daily living activities — such as dressing, bathing, using the bathroom, walking, or eating — than those who don’t, Garrison explained.
“You may see they have more difficulty with naming things or verbally interacting. Sometimes it may make them less likely to comply with treatment,” she said.
It’s important to note significant changes in behavior that are unusual for the person. If someone used to enjoy a particular activity, such as playing cards with friends, be aware if they suddenly lose interest or have forgotten how to play. They could lose interest connecting with others, such as grandchildren or their spouse. There may also be a shift in their ability to communicate or understand what is being said to them, Sen explained.
Signs to pay attention to can include any of the following:
Diminished desire to initiate activities
Lack of engagement in activities
Failure to complete activities that have been initiated
Lack of persistence
Lack of interest or indifference
Low social engagement
Blunted emotional response
Lack of insight in responses
Low energy levels
Loss of curiosity to learn new things
Inability to adapt to the structure of day-to-day activities
Neglected hygiene and self-care
How Can Loved Ones or Caregivers Support Adults Experiencing Apathy Caused by Dementia?
People experiencing dementia may not understand why they feel apathetic toward an activity or may not be aware that degeneration in their brain has taken place. To support them, social workers, helping professionals, caregivers, family members, and friends should take steps to provide empathy and compassion for what they are feeling.
IDENTIFY WHERE THEY FIND JOY.
Consider which activities have provided fulfillment for the person in the past. Art can be a good way to engage. A simple act like playing their favorite music may be helpful.
REMINISCE AND ASK QUESTIONS ABOUT THEIR PAST.
Engage their long-term memory. If the person is interested in sports, for example, ask them about memories they have playing the sport or who their favorite players were.
INTRODUCE SMALL AMOUNTS OF ACTIVITY AT A TIME.
If the activity is overwhelming, learn to be flexible and adjust it. They may be able to still do things that they have previously enjoyed if they are less involved.
EMPHASIZE THE PROCESS OVER THE OUTCOME.
Pressure to finish an activity may inhibit desire to start it. Help them to initiate and allow them to enjoy the process. Working together on a puzzle, for example, can create opportunities for socialization.
Avoid expressing frustration or disappointment. Be clear when you are communicating with them and use a gentle tone. Do not discuss deficits or declines or focus on what the person can’t do.
PROVIDE POSITIVE FEEDBACK.
Focus on what they can do, what they like to do, and how you can involve them in those activities. Set them up for success in an activity and make sure they feel included and rewarded for trying to participate.
These strategies can help the person experiencing apathy related to dementia feel less alienated and more valued and productive. However, it’s important to take into consideration the cognitive and physical functioning level of each individual when applying these strategies. It can be difficult to engage a person living with dementia in an activity that they previously enjoyed when they are no longer physically or cognitively able to do so.
“If we don’t consider their cognitive and physical functioning, then we might be setting them up for failure, which can further increase the experience of apathy,” Garrison said.
It is essential to take a person-centered approach and emphasize individualized, meaningful activities tailored to a person’s strengths and interests. When they do withdraw, try to distinguish the difference by figuring out if the person with dementia is withdrawing from an activity as a result of apathy or because they cannot actually engage in the activity anymore.
“Meeting the person where they are is key to ensuring that we consider their dignity and worth above all else,” Garrison said.
The following article is for informational purposes only. For guidance on caring for a loved one with dementia, please reach out to a health practitioner.