A Script for Male Dementia Caregivers

One day, while working as a clinical psychologist in a primary care practice, I was asked by the family doctor scheduled to meet that morning with Lisa, a 72-year-old woman with moderate dementia, to stop by and see her 75-year-old husband, Dennis, for counseling for possible depression. Within the hour, I watched the couple arrive at our front desk. Dennis was a big man gently escorting his petite wife by the elbow. While Lisa stood there blankly, he kidded around with the receptionists and showed off photos of their grandkids. As they were led to a medical exam room, he glad-handed every medical assistant and doctor they passed. This guy, I thought, is the picture of cheerfulness, not distress. “I’m fine,” he told me with a broad smile when I briefly stopped by the exam room a few minutes later to introduce myself. “Lisa has looked after me for 50 years. I can take care of her now. That’s the wedding vow I made.”

It was good to hear of Dennis’s ironclad commitment to her. I wondered, though, if he was really doing that fine. He seemed almost too upbeat, as if he wanted to present himself to everyone in our practice as better than well. Many spousal dementia caregivers struggle emotionally watching their life partners slowly decline. But I also knew that male caregivers, especially spouses, tend to be stoical, avoiding expressions of negative feelings, and often declining other’s help. I remembered another male dementia caregiver telling me once that male caregivers want to be a “pillar of strength” to better support their spouses. If they’re not strong and hard as marble, that man had explained, then they fear they and their spouses might crumble and collapse.

As a man, I well understand how we are socialized to act strong. But I also know we do have powerful emotions in response to devastating loss. Being rigid as a pillar can sometimes cause us to crack under dementia caregiving’s intense and prolonged pressures. I didn’t want that to happen to Dennis. Instead, I wanted to help him become more emotionally flexible and resilient.

There is a common misconception that almost every family caregiver is female. But that has never been true and is less so now than ever. More men are stepping into this difficult role. According to the 2020 Caregiving in the U.S. report by the National Alliance for Caregiving and AARP, the number of American male caregivers increased from 16 million or 35% of all family caregivers in 2015 to over 20 million or 39% in 2020.

As a psychologist specializing in treating and writing about family caregivers for more than 30 years, I have worked with many men in their seventies caring for spouses with dementia they’d been wedded to for decades. Like Dennis, they were selfless, determined, and single-mindedly dedicated to supporting their spouses, refusing even the help of their adult children. Some believed that, if they were devoted and hard-working enough, they could somehow reverse dementia’s damage and restore the full functioning of their wives.

As much as I admired them, I was afraid that being stoical and rejecting help made them more likely to burn out and ultimately become unable to continue providing care. I learned early on in my work with them, however, that it was counter-productive to say that. Lots of people before me had said similar things to them and been dismissed. I needed to find a different way of engaging these male dementia caregivers. I used that approach with Dennis:

The first step I take is what I call “honoring the mission”—identifying and praising the reasons, if not the means, that male caregivers have for caring for their spouses. After Lisa’s appointment with the doctor, Dennis met me alone in my office at my request while Lisa sat in the waiting room. I didn’t start our conversation by pushing unsolicited advice on how he could be a better caregiver. That might even insult him. Instead, I allied with him by complimenting him for all he was doing for his wife. I then asked him genuinely what it meant to him to be her caregiver. Dennis answered by saying again that he was giving back to Lisa all she had given to him. But out of his wife’s earshot and in the presence of a highly interested listener, his tone was now more emotional. It was clear this wasn’t just about fulfilling a wedding vow for him. He was extremely grateful for their 50 years together. In his mind, taking care of her was the right and moral thing to do. I again offered him praise for his commitment and then told him I wanted to help him do more of it for as long as he chose to do it.

The second step is asking about changes in the spousal relationship. I asked him how they had first met and courted. He practically glowed while telling me. He had been an employee in her father’s small business where she worked part-time. He had fallen for her the moment he saw her, but it had taken him a while to win her over with his sense of humor. After that, they were always together, talking, laughing, and eventually raising three kids. When I then asked him about how their relationship had changed because of her dementia, his tone became somber again and he sighed. He told me they were still very much in love, but that it had become one-sided now. They had been equal partners before, but now he did all the talking and the deciding for the two of them. He missed what they had before.

The third step is asking about handling emotion. I asked Dennis if he ever shared with Lisa that feeling of missing what they had. He looked at me askance and said no; he didn’t want to hurt her. I then asked him about what he did with those feelings, and he shrugged and said he just pushed them aside because he had to keep her going and keep himself from getting down. I commended him for his efforts to protect Lisa. I then asked him, “Do you feel like if you let yourself feel a little, it would be like opening Pandora’s box?” He looked at me and repeated that he had to keep himself from getting down so that he could do all he needed to do.

We had now reached a point in our conversation in which several things had occurred: I had communicated I thought he was doing the right thing for Lisa and understood this was just another form of the caring they’d showed toward one another throughout a long, devoted marriage. Dennis acknowledged their relationship was now different because of her neurological disease and he felt sad about those differences. He also indicated he was choosing to contain his sad feelings for fear they might harm his wife and disable him as her caregiver.

The fourth step is normalizing sadness and offering alternative ways of coping with it. I told Dennis I had talked with many men his age caring for their wives with dementia and that it was normal for them to feel sad and frustrated at times. I said those feelings just come with the territory of dementia caregiving. I also said I had seen some of these men try to bottle up their feelings and others who had expressed them, if not to their wives, then a little at a time to others who they trusted. I added that, in my experience, the guys who kept their feelings inside tended to struggle more with them and eventually burn out. The guys who expressed them to people who could understand and were supportive seemed to be able to carry on with dementia caregiving better and longer.

Dennis took this in without any facial expression before glancing at his watch and saying he didn’t want to leave Lisa in the waiting room for too long. He politely thanked me and said he’d think about what I said but declined my offer to schedule a time for the two of us to meet again. He gave me a strong handshake and headed out. I could hear him calling his wife’s name and yelling to the receptionists across the waiting room in a loud, friendly voice, “Good seeing you, girls!”

I wasn’t sure if my words had had any effect at all on Dennis. After that day, I saw him every three months or so in the office whenever he and Lisa returned for a medical visit. I watched him be the same hale and hearty guy slapping people on the back with one hand and carefully guiding Lisa down the hallway with another. But every now and then during the next couple years, he’d pop into my office for a minute or two and give me an update. Yes, he was frustrated, he’d admit. Sad, too. It was breaking his heart to witness dementia changing her. He mentioned he’d also begun sharing some of these feelings with his kids. Not surprisingly, they told him they felt the same and wanted to do all they could to help him and their mother. Dennis never told me he was going to stop being strong as his way to keep going. But I did hear in his updates that he was experimenting with the idea that expressing his feelings might make him become even stronger to better care for his beloved spouse.

PHOTO @ Pexels/Pavel Danilyuk