Fighting Apathy in Early-Stage Dementia & MCI
By Victoria Hart
“He’s lost interest in things.”
“She spends hours just doing nothing.”
“I just don’t know what to do with him.”
These statements are all too familiar for family members of people in the early stages of dementia or Mild Cognitive Impairment (MCI) and are often indicative of apathy, an important symptom. In a recent article in Frontiers in Aging Neuroscience, apathy in dementia is described as “diminished motivation for at least 4 weeks […] accompanied by any two of the following: reduced goal-directed behavior, reduced goal-directed cognitive activity, and reduced emotions” (Ma 2020).
While depression and apathy can occur together, they are distinct and separate issues, and it is easy to mistake apathy for depression. Studies show that apathy occurs in more than 55% of dementia patients and “can exert a greater impact on daily functioning than depression, which increases reliance on caregivers” (Ma 2020).
In addition, for apathetic patients with MCI, the risk of progressing to Alzheimer’s Disease (AD) is “several times higher than in MCI patients without apathy, while there is no increased risk of progressing to AD for MCI patients with depression compared to MCI patients without depression” (Ma 2020). Research has “demonstrated that apathy, but not depression, has a negative impact on daily functioning” (Zhu et al. 2019) and that “apathy at baseline was a significant predictor of depression” (Starkstein et al. 2006).
Apathy can be disheartening for family members and care partners as it can feel like the person they knew is slipping away. It can be frustrating when someone who was previously proactive and engaged becomes passive and seemingly uninterested. Maintaining social contacts is one important way to combat apathy, but the pandemic has made this very difficult. Sometimes the person with AD or MCI is resistant to socializing, perhaps because they are aware that they are not as “sharp” as they used to be. They may feel self-conscious, embarrassed, or even ashamed because their response time is slower or they have more difficulty expressing themselves.
Without even realizing it, others often treat people with early-stage memory loss differently, finishing their sentences, losing patience with having to repeat themselves, not directing conversation directly to the person with AD or MCI. Sensing this, the person with memory loss engages less and less.
One thing I have discovered time and again in my work with people in the early stages of dementia is that apathy at this stage is not a loss of interest; rather, it is the loss of the ability to come up with ideas and the ability to follow through with those ideas. But the interest is still there. It’s like having a file drawer full of information but not knowing how to open the drawer and remove the files. The good news is that breaking through apathy is possible with targeted, personalized activities that engage the mind and the emotions.
Start by setting aside some time for one-on-one activities. Don’t expect your loved one to self-motivate but rather engage in the activity together with them, encouraging them to respond. Try to combine intellectual with emotional content. For example, if you go for a walk or a drive, try to point out interesting, pretty, unusual, or funny things you might see. Ask your partner what they feel or think when something is pointed out to them. If their answer is short, try to connect to a memory or an idea.
Older memories, especially those with an emotional content, often remain intact and retrievable and are a great way to engage in a heartfelt conversation. Don’t worry if you talked about the exact same thing the day before! If it engages your loved one and gets them thinking and expressing themselves, that is a win! A good rule of thumb is to connect ideas with feelings for a greater impact.
If your partner or parent was interested in current events, spend some time reading the newspaper together. Choose stories together, read them aloud, and pause every few paragraphs to discuss what you have just read. Ask your partner or parent what he or she thinks. Allow time for them to gather their thoughts and find the words. Resist the urge to finish their sentences for them. Their efforts to collect and express thoughts are therapeutic. Encourage them to offer opinions. Believe me, they have them, even if they don’t always express them!
The internet is a great tool. Sharing interesting, short videos or audio blogs followed by discussion is a great way to keep interests alive. Whatever your loved one’s interest may have been before their diagnosis, you will find a plethora of free videos about it on YouTube. Try watching or listening together, and always follow up with questions about your partner’s thoughts and feelings.
Music, art, humor, history, biography, politics, travel are all excellent foundations for a great conversation. I use this approach in my work with A Gathering of Minds. Our members have led full lives with many interests, and they thrive on engaging in a wide variety of topics and in learning new things.
In our small group meetings, members find that others are interested in hearing what they have to say. No one judges them if they have trouble finding a word or composing an answer. Their input in conversations is both heard and valued. In the process of sharing opinions, experiences, and emotions, our members are for that moment restored to themselves.
I believe that such regular experiences contribute to the cognitive and emotional well-being of our members. With a little help, they get to experience being the person that they still are inside – engaged, caring, and whole. And that is a fabulous antidote for apathy.
References:
Ma, L. (2020). Depression, Anxiety, and Apathy in Mild Cognitive Impairment: Current Perspectives. Frontiers in Aging Neuroscience. 12:9. doi: 10.3389/fnagi.2020.00009
Zhu, CW et al. (2019). Why do they just sit? Apathy as a core symptom of Alzheimer’s disease. American Journal of Geriatric Psychiatry. 27:395–405
Starkstein, SE et al. (2006). A prospective longitudinal study of apathy in Alzheimer’s disease. Journal of Neurology, Neurosurgery, and Psychiatry. 77:8–11
Photo from Freepik.
