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Wednesday, June 19, 2024

Improving the lives of persons with Alzheimer’s and their caregivers

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Caring for someone with Alzheimer’s disease is not the same as caring for someone who has the flu. You cannot leave them on the couch with a cup of tea and a good book while you go to work, and they will not recover within two weeks. Alzheimer’s disease is the most common cause of dementia. Dementia is a term used to describe symptoms affecting memory, thinking and social abilities to the point where they get in the way of daily life.

I am a PhD candidate at Rush University College of Nursing. I am committed to improving the lives of persons with Alzheimer’s and their caregivers. My research focuses on spousal caregivers of older adults with Alzheimer’s disease living in the community. I am also an Assistant Professor at the Leighton School of Nursing at Marian University Indianapolis.

As a nurse, I am often reminded that caregiving will be a part of every person’s life, whether it is giving or receiving care. As a community health nurse, I saw the lack of resources for caregivers of color.

According to the Alzheimer’s Association, more than 6 million Americans live with the disease, the fifth-leading cause of death in the United States. It disproportionately impacts Black and African American communities, as older Black and African Americans are twice as likely as older white Americans to develop the disease. Black and African Americans have higher rates of hypertension, high cholesterol and diabetes, which increase their risk of developing the disease.

Caregiving has been linked to stress, depression, lower well-being and lower quality of life. It is hard to take care of a family member with dementia. It is even more stressful if it is your spouse or partner. Spousal caregivers often have different needs than other family caregivers because they are likely to provide more hours of care and higher intensity care. They are more likely to say that their needs for support and access to services are unmet. Knowledge of resources and services is vital for spousal caregivers. This information helps spousal caregivers take care of their own health and give their loved ones the best possible treatment. Without the right information, spousal caregivers cannot be good caregivers or advocates for their loved ones.

Black and African Americans have rarely been consulted about what resources are needed. If Black and African American caregivers share their experiences and suggestions for education, resources and support services can be developed.

I am interested in how spousal caregivers of color manage/deal with the challenges of caring for persons with Alzheimer’s disease. I am looking for spousal caregivers willing to answer questions about their caregiving experience. You must be at least 50 years old, self-identify as a spousal caregiver of color, provide at least 10 hours per week of unpaid help (such as cooking, cleaning, dressing, medication management, etc.), your partner/spouse has been diagnosed with Alzheimer’s disease by a healthcare professional, your partner/spouse is at least 50 years old, your partner/spouse resides in the same household. If you volunteer to be in this study, your participation would involve one interview session, which will take approximately 60 minutes of your time. Participants will receive a $25.00 Amazon gift card upon completion of the interview. Participation is completely voluntary, information collected is protected and participants may terminate at any time.


For more information or to volunteer participation please contact Shandra Burton, RN, at (463)-701-1565 or email: shandra_burton@rush.edu. For more news from the Indianapolis Recorder, click here.

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