Dementia’s most-known symptoms are memory loss and confusion. If an older adult starts placing their house keys in a strange place or getting lost on their way home from church, a relative or friend will likely spot the red flags.
But a lesser-known sign that someone is experiencing cognitive changes is an apparent loss of empathy. Caregivers are often the ones who observe — and are most affected by — these shifts in behavior, said Lauren Fisher, a doctoral candidate at the University of Pennsylvania School of Nursing who studies dementia and caregiving.
She recently published a paper examining 16 studies on the emotional experiences of people who care for loved ones with frontotemporal dementia. Empathy loss is common among people with this form of dementia, and because empathy is key to connection, that decline can make caregiving more isolating and fraught.
In this conversation, which has been edited for length and clarity, Fisher explains how empathy and dementia are linked. She also discusses why this symptom is less known and how to support caregivers navigating these challenges.
Spotlight PA: Can you give examples of what this loss of empathy might look like among people with dementia?
Fisher: Some families will bring a loved one to our clinic after another family member has died, but the person with dementia had absolutely no emotional response to that loss. Or the person with dementia will have inappropriate responses.
Or generally, people may not emotionally respond in the ways that they used to and that results in a loss of connection. Humans mainly connect through empathy: “I understand how you are feeling, and here, let me feel this with you.”
So it’s not necessarily that their loved one is acting selfishly; it’s that they’re just acting oddly?
Sometimes, it’s very much selfish behavior. They’re putting their own emotions before another person’s. For example, I interviewed a caregiver who had cancer. When she was sharing her diagnosis with her husband, he did not have the emotional response that she thought he would. Instead, he was much more focused on himself in that moment by wanting to know what was for dinner.
Also, one of the studies that I cite in my paper notes that marital infidelity is more common among people with frontotemporal dementia when compared to people with Alzheimer’s disease. This might be because they’re just no longer thinking about their spouse’s feelings. Or because the changes in their brain mean that they’ve become hyperfixated on sex, or are unconcerned about negative consequences.
That means there are instances in which relationship problems are caused by a medical issue?
Yes. Overall, there’s a lack of education about these symptoms that could be red flags for dementia. Instead, people are being told they need to work on their marriage. As dementia cases are increasing, it’s important that we have a better understanding of all of the different types of symptoms that could present early on. This will help us get loved ones to resources faster.
We still don’t really understand the emotional and psychological impact on the person living with dementia over time. I’m hopeful that my research brings attention to the real need to be focusing on these areas.
When someone starts displaying a loss of empathy, what does research tell us about how that affects caregivers?
In the beginning, it feels so personal that it’s hard to believe that this is a symptom of dementia. Then, a caregiver might start experiencing depression or anxiety because not only is someone’s loss of empathy hurtful, but the caregiver no longer has that person to help support them through a difficult time.
Also, when a caregiver has someone physically with them all the time, but they’re not able to connect with that person socially or emotionally, it contributes to their sense of isolation. That can be really devastating.
One organization that I think is doing good work to help address these issues is ARTZ Philadelphia, a nonprofit that provides events for persons living with dementia and their caregivers. The goal is to help people with dementia try to connect with others through art. That might be going to a museum or an opera, which is a really interesting type of therapy that also supports caregivers.
Art is one of those things where there’s no real right answer, which is why it’s so great for people with cognitive differences. You can’t be wrong in the way that you’re perceiving art.
And a lot of caregivers have talked about how amazing it was to see their loved one — who maybe has become a little bit more socially reclusive or not communicating as much — open up more. And the joy of seeing their loved one actually participating and enjoying something was huge for caregivers’ own mental health.
What are some other ways we can support dementia caregivers?
Frontotemporal dementia starts as very emotionally demanding, though as the disease progresses, it becomes a lot more physical. I’ve met caregivers who have dislocated both shoulders because they’re having to help their loved one get out of a chair or they’re helping them go to their restroom. And I think that’s so unacceptable that we’re having people literally break their bodies because they care for this person so much, and they want to preserve their dignity, and they want to help them still live a good life. But then nobody is there to support the caregiver.
Also, we need mental health services that understand dementia. I’ve had many families talk about going to therapists who don’t understand the full spectrum of dementia. So the caregiver ends up educating their therapist in their sessions, rather than getting the specific help that they need. Some families give up on therapy because it became more draining than helpful.
Your study specifically looked at people with frontotemporal dementia. But are there implications for people with other types of dementia, or their caregivers?
Empathy loss is also prevalent in other dementias, including Alzheimer’s disease, which is the most common disease that causes dementia. At diagnosis, a 2023 study found that empathy loss is impacting approximately 40% of people with Alzheimer’s disease. So it’s not a small number.
I think it’s important to be more open about the emotional burden of caring for a person with dementia so that caregivers can talk about it and not feel stigmatized.
If you know someone who has dementia, reach out to the caregiver, reach out to the family. A lot of families talk to me about how people stop coming by as frequently. I would love for people just to check on their friends more.
If a caregiver is talking to you about dementia symptoms, then just listen. I think that listening can go so far. And if you are a caregiver, be kind to yourself.
