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The Special Challenges Faced by Male Care Partners of Persons with Dementia

Men seem to have a more difficult time with the role of care partner. There are published studies that examine the differences between men and women who are care partners. Often, the gender differences are often affected by the relationship between the care partner and the care recipient. For the past few weeks, I’ve had several encounters with male care partners that caused me to adjust how I teach and coach these individuals.

CAUTION: I do not intend to over-generalize or over-simplify. I understand that people are individuals. However, I’ve noticed some trends both in my own practice and research, coupled with information from published research studies, that are influencing how I approach care partners. Hopefully, in an improved manner that better matches their needs.

Mr. Fix-It

Men tend to be problem-solvers, probably from a combination of social, culture, and environmental factors. I’m seeing this with my own son:

Situation: Broken Toilet

Me: “Oh, sh*t. Something else to handle.”

Son: “Yay, trip to Home Depot!!”

Again, just an observation.

The problem-solving approach works with many of life’s problems. There is a logic to problem-solving that involves deduction and reasoning. In the case of the troublesome toilet, Mark and I noted that the toilet kept running, which caused us to peek under the tank cover. We saw the broken ‘innards’ and Mark happily ran to Home Depot and obtained the pertinent parts. Ten minutes later, he replaced the broken components and everyone was happy.

And then, there is Dementia Land. 

There is a logic, all right–but the logic comes from the experiences and memories of the person with dementia. It is a lot like a personal organization system: my spice rack is organized by the ones I use most frequently; when Mark is on cooking duty, he fusses because “your organization makes no sense.”  NO, SON. IT MAKES PERFECT SENSE TO ME. YOU ARE JUST ANNOYED BECAUSE YOU CAN’T FIND THE CINNAMON.

Many of my male caregivers, at least in the beginning, are trying to fix the dementia. They believe that by quizzing, making the person draw a clock, and employing a range of other activities, they will stop or slow the decline. Some activities have been shown to slow declines in both mental activities and functional abilities; BUT, they have to be pleasurable and meaningful for the person with dementia or you are going to have a MAJOR behavioral problem. Or several.

Mr. Self-Fix-It

When I work with male care partners, I emphasize the need for them to use these same problem-solving skills, but on THEMSELVES. The person with dementia cannot function in our world, we are best served entering theirs.

We talk about common triggers of yucky behaviors (refusals, arguing, anger). These triggers are often tone of voice, long/multiple sentences, and other mannerisms that can be seen as bossy. These triggers are more pronounced when the care partner is an adult child of the person with dementia.

  • Tone of voice.  Make sure you are not using high-pitched baby talk or authoritative (bossy) tones
  • Approach. Smile, even if you are not feeling it.
  • Short, sweet, concrete. Keep your statements brief and goal-focused. Instead of, “Do you want to get out of bed today?”  try “Time to get up.” It is much preferable to repeat the same 3-5 words over and over, than to keep restating the same direction multiple ways.
  • Give a reason that MAKES SENSE TO THEM. Everyone needs a “why.” Think about your own lives. I get out of bed at 4:45 am because I want to accomplish things that make me feel happy and productive. I work late when I’m under a deadline. Those are my “Whys.” What “whys” would make sense to your family member? Use their past professions or favorite hobbies. Was your mother an attorney? “Mom, time to get up. You have court today.” Was your wife an educator? “Hon, time to get up. The students are waiting.” You are respecting your loved one by bringing a cherished identity back to them. 

“I Didn’t Sign Up for This”

Women have historically outlived men, so we as a society are very comfortable with female family caregivers. Most of us women have been socialized to be caregivers in some way, shape, or form. Some women are absolutely NOT cut out to be caregivers in spite of societal and cultural expectations–that is content for another blog. Likewise, many men may not have pictured themselves in this role, and most are happily surprised to learn that they are really good at caregiving. But…and I see and hear this a lot…

“This isn’t how it was supposed to be.”

“I didn’t sign up for this.”

Many men struggle with the disconnect between the life and situation they expected versus the life and situation they have now. This disconnect is even more pronounced if the male care partner had physical problems and the spouse was physically helping him before the dementia arrived. Suddenly, the male care recipient becomes the care giver or care partner. These individuals may benefit from more support, especially hands-on support, from friends and family. This is the time for friends and family members to offer concrete real help, such as dedicated relief care (I’ll stay with her so that you can get to your doctor’s appointment). The care partner may initially refuse, “Oh, it’s OK.” Be persistent; ask if the care partner has alternative ideas or ways that you can help.

The “Default” Care Partner

Sometimes, the male adult child becomes the “default” care partner because he happens to be single at the time, is the only offspring living in the area, or is the only child, period. If the relationship between adult child and parent was difficult or strained pre-dementia, it can become even more difficult now. Past issues are not going to be resolved now, no matter how hard you try. The person with dementia is very likely to repeat old (learned) patterns of behavior. A good option is to seek counseling for yourself and work things out for your benefit.

A Final Word…

Researchers are VERY interested in finding specific ways to help male care partners. One obstacle I see time and time again is that male care partners are difficult to reach. It’s a “chicken or the egg” problem. Many support and educational programs are used predominantly by female caregivers or care partners. In turn, these support and educational programs tend to become more “female-focused,” not out of purposeful exclusion but because of the large number of women who use these services. I would love to hear from support groups or services that significantly help male care partners or caregivers of persons with dementia. I would be happy to post these resources on my blog!

Want more information? I provide monthly webinars and individual coaching for caregivers who would like to learn more about dementia, and how to successfully deal with frustrating or scary behaviors. Click here!

Categories: Alzheimer's Disease Care Partners Caregiving

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Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

6 replies

  1. Thank you Rita,
    This is the only blog that I have seen in 6 yrs. that specifically addresses issues faced by male caregivers. My wife was diagnosed with FTD in 2013 at 53 yrs. of age. We had noticed symptoms approx. 2-3 yrs. prior to her diagnoses and have recently moved to GDS stage 7. I quit my job in Dec. 2017 to care for her full-time.
    Thank you for sharing your experience and knowledge, I will be watching for more helpful posts!

    1. Hi, Stan. Thank you so much for your feedback. I agree, this is a topic that is absent. Or ignored. While 66% of care partners are women, 1/3 are men! And that number is growing. I am happy to keep writing on this topic. What items do you wish you had known (other than the medication issue)?

    1. There is. Usually, the person is unable to walk; no longer is capable of intelligible speech; and cannot do any self-care action (for example, needs to be fed). You may ask for a hospice eval at anytime. Don’t wait for someone there to bring it up.

    1. Thank you for you kind comments. And thank you for helping your father-in-law.

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