Are You a Superwoman Caregiver?

 In Your Health

If you are not a superwoman caregiver yourself, chances are good that you know someone else who is. Superwoman is a fictional comic hero who can accomplish anything, has super-human strength, and is ever ready to come to the rescue of others.

There is much to admire in Superwoman’s qualities but during a recent conversation with Dr. Kalisha Bonds, PhD, a Postdoctoral Fellow at Emory University Nell Hodgson Woodruff School of Nursing, I learned there can be a downside for caregivers who exhibit this persona.

Dr. Bonds is a psychiatric mental health nurse practitioner whose research is focused on caregiving in African American dementia dyads and families. Dyads refers to two people. In Dr. Bonds’ work, dyads refer to the African American person living with Alzheimer’s disease and related dementias and their African American caregivers.

In most cases of African American dementia dyads, both people are women. Research conducted by the Alzheimer’s Association suggests that typically caregivers are women, and persons living with dementia (who often have caregivers) are also more likely to be women.

Dr. Bonds at her PhD convocation with her grandmother who traveled from rural Tennessee to Portland, Oregon via train with a cousin to surprise her.

Mary Blumberg: What attracted you to this field of study?

Kalisha Bonds: I was raised by my maternal grandmother after my mother died in a car accident. I was two years old. My grandmother was in her fifties when she gained responsibility for me and my nine-month old brother. We grew up in a neighborhood in rural, west Tennessee surrounded by many older adults. My grandmother is my best friend. I am so grateful for all she has done for me.

My career originally started in pediatrics. I loved children and wanted to make a difference, but I soon learned my passion for geriatrics. I had the opportunity to work in long-term care facilities, both nursing homes and assisted living facilities, with older adults as the psychiatric consultant. I knew it was where I wanted to work because it felt like I was meeting and treating my grandmother every day.

While working in long-term care facilities, I noticed that families had trouble navigating a dementia diagnosis for their family, and I saw a real need for more research and assistance.

MB: What do you wish families knew when, or even before, dealing with a diagnosis of dementia?

KB: I wish families knew the importance of having that tough conversation with your family member about what they want as the disease progresses.

Start planning early. Create a care plan, and make sure you understand their wishes and values for care at every stage. Understand and know that circumstances will change and be prepared to ask others for help. It may be helpful to have an objective individual, such as a care manager, help document the plan.

Unfortunately, the traditional health care system is not set up to allow caregivers to create an in-depth plan that is culturally sensitive to individuals’ desires, so having that discussion within the dyad and family is vital. A well-crafted plan can be the voice for persons no longer able to speak for themselves.

If you or someone you know is showing any of the early signs or symptoms of dementia, it’s important to visit your doctor as soon as possible for screening. There are many lifestyle adaptations and medications that may help to slow or lessen the symptoms of dementia. An early diagnosis also affords you more time to plan for your future.

MB: I have heard you speak about the “Strong Black Woman/Superwoman Schema” and the pressure women can feel to be a superwoman in their caregiving responsibilities. Can you explain what this means, and how it can be harmful to the caregiver?

KB: I cannot take credit for this work. I am mainly referencing the work of Dr. Cheryl Woods-Giscombé. You described the idea of the fictional character of Superwoman earlier. For many African American women, the persona of Superwoman or Strong Black Woman was to combat the negative stereotypes often given to us of “welfare queen” or “Jezebel”. This persona of power and strength was supposed to be a positive.

In the work of Dr. Woods-Giscombe’, she interviewed African American women and identified characteristics of the Strong Black Woman/Superwoman Schema. These five characteristics are:

  • Strength
  • Hide emotions
  • Refuse to be vulnerable
  • Determination to succeed at any cost
  • Help others

Each of these traits is not necessarily bad, but the combination of all five may result in worse health outcomes and other negative consequences. For instance, if you can’t show vulnerability, it is hard to have meaningful relationships with others. Or, if you are constantly taking care of others, self-care is neglected, and your own physical health suffers.

Many African American caregivers report less stress when asked on a survey, but their physical health seems to be poor, possibly indicating that caregiving is taking a toll.

MB: What resources do you recommend for families who are caregiving for others with dementia? Where can “superwomen” get help?

KB: The Alzheimer’s Association website has a plethora of resources under the Help & Support section. The Center for Disease Control has a webpage with resources for Alzheimer’s Disease. Also, the Goizueta Alzheimer’s Disease Research Center at Emory University has a clinic where someone can have a memory screening.

I would also encourage anyone to consider being in a research study. We have a few at Emory University. Medications and treatment regimens are based on research. Medications and treatments are designed based on people in the studies, who are often not minorities.

 

Empowerline offers a phone-based consultation for caregivers in partnership with the Benjamin Rose Institute on Aging (BRI) to provide caregivers a service called BRI Care Consultation. A certified care consultant speaks monthly with the caregiver, helps create an action plan, and identifies steps that can be taken to improve care.

To learn more about BRI Care Consultation or about other services to help persons living with dementia and caregivers of others, contact empowerline or call (404) 463-3333.

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