Dr. Macie P. Smith, is a licensed Gerontology Social Worker, award-winning Alzheimer’s and dementia educator, and author. She spoke with the Amsterdam News about the impact of Alzheimer’s disease and dementia on Black families. This conversation has been edited and condensed for clarity.
AmNews: Please tell us about yourself and your work.
Smith: I’ve been a licensed social worker and gerontologist for more than 24 years and I specialize in working with the senior population — those over the age of 65 and their family caregivers whose age is on average around 49 to 50 years of age. I have a private geriatric care management practice where I provide family consultations and caregiver coaching across the country because family members are spread out. The senior may be in South Carolina, but the daughter may be in New York, or the brother or son may be in Philadelphia. By the power of technology, I’m able to pull all parties together to have a conversation and develop a plan of care for the senior or for the adult who’s living with disability.
AmNews: Could you tell our readers about the specifics of the work you do?
Smith: Specializing in working with those who are living with Alzheimer’s disease is a passion for me because it is the only disease in the top 10 that you cannot treat, that you cannot cure, and that you cannot prevent. On a personal note, my grandmother developed a progressive type of dementia, which was heartbreaking for me, just like it is for any other family. I was in the industry at that time and I was dumbfounded because I was in the granddaughter role, trying to support my dad, who was her primary caregiver.
My caregiving journey and my care story was that of a distant caregiver. I had to compartmentalize my roles and become my grandma’s and my family’s gerontologist and licensed social worker to help navigate the long-term care system, which is unnecessarily complicated and convoluted.
Families — I don’t care how educated they are — become very frustrated with not knowing the system and very fearful of the disease process [of] Alzheimer’s or dementia, because what we find out is that what we’ve known about the disease process years ago is not really what it is.
I didn’t want other families of color to go through a constant state of crisis and confusion, so that’s why I wrote two books.
My first book is “A Dementia Caregiver’s Guide to Care Frequently Asked Questions.” I wanted family caregivers to get real-time answers to the most common questions that they face when providing care for someone with dementia — questions that a doctor, a medical practitioner, may not be able to answer because they are under the medical model. We know that because the disease is not curable, the medications that are typically prescribed are to treat the symptoms, but when those medications are no longer effective, then there’s care. I teach family members how to provide optimal compassionate care for those living with dementia.
My second book, “A Dementia Caregiver Call to Action,” provides an action plan for families who don’t have time to read a 200-page book because they’re providing care for their loved one. I wanted the book to be a quick but effective read that they can fold up and take to the doctor’s office to have a meaningful conversation about a [doable] outcome for their loved one.
Although age is the number-one risk factor to developing a progressive type of dementia it is not the only factor. We know that lifestyle is more of a contributing factor than, say, genetics — what you choose to eat, how you choose to live, how you choose to learn, and when you choose to learn, reducing your risk for chronic illnesses and comorbid illnesses such as high blood pressure and diabetes … When you manage those areas and reduce your risk there, you reduce your risk of developing Alzheimer’s and dementia.
AmNews: Is there anything else you’d like to tell our readers about Alzheimer’s disease and dementia, and what to do if they suspect a loved one is suffering from one of these diseases?
Smith: I will say to those who are over the age of 65 that Medicare does pay for a cognitive assessment, along with their physical exam, so don’t be afraid to take the cognitive test. It will not hurt, so include that as a part of your routine medical care.
I also want to encourage family caregivers to create an electronic health record for their loved one at the doctor’s office. Along with their loved one, they can have access to the person’s medical records and actually see what’s going on — sometimes [a person with symptoms] doesn’t want their adult children to go to the doctor with them or their siblings. [If you have access to those records], you have a direct line to the doctor to have communications about the concerns you’re having, just in case [your loved one doesn’t] tell their doctor. That way, you can develop [a plan] with the doctor, who will be your person’s partner and develop a team of care to be able to provide comprehensive care for the person’s overall well-being.
