Coping with dementia – patient and caregiver care

April 22, 2021

By Sandra Millon Underwood
RN, PhD, FAAN Professor, UW-Milwaukee School of Nursing

Dr. Easter with his mother

Dr. Bashir Easter knows first-hand the impact dementia can have on an individual and the toll it can take on caregivers. His mother was diagnosed with dementia at the age of 55 and for the past 17 years he and his siblings have cared for her. Dr. Easter’s sister has taken on the role of primary caregiver. To give her respite, Dr. Easter would take care of his mother on the weekends so she could have some time to herself outside of the home. His mother is now unable to leave the home because of her double amputation. Sadly, another sibling, who initially served as caregiver could no longer cope with the situation and left the state, leading to a strain on the siblings’ relationship.

“My mother showed signs of dementia at the age of 50. At that time, we didn’t understand what was happening. She was not diagnosed until the age of 55. We did not understand the type of dementia my mother had because we were not told. Not understanding the type of dementia caused more issues as we made the decision to provide care for her in our homes. Unfortunately, along with that decision came stress and burdens that we were unprepared to take on,” said Dr. Easter.

Dr. Nia Norris, Assistant Director of the Wisconsin Alzheimer’s Institute- Milwaukee regional office, further clarified the nature, characteristics, disease, and conditions associated with dementia.

“Dementia is an overall term for a particular group of symptoms. Characteristics may include difficulties with memory, language, problem solving, and the inability to perform daily activities. Alzheimer’s disease is an irreversible, progressive brain disorder that is the most common cause of dementia among older adults.

“One of the things that is helpful for caregivers to do when they suspect that something may be amiss is to track and write down observations about loved ones. It helps to document and understand the progression of the disease.

“Since there are different types of dementia, caregivers need to develop different approaches to care, depending on the disease type,” said Dr. Norris.

According to the Centers for Disease Control and Prevention (CDC) the most common types of dementia are:

• Alzheimer’s disease. This is the most common cause of dementia and accounts for 60 to 80 percent of dementia cases. It is caused by specific changes in the brain. The trademark symptom is trouble remembering recent events, such as a conversation that occurred minutes or hours ago, while difficulty remembering more distant memories occurs later in the disease. Other concerns like difficulty with walking or talking or personality changes also come later. Family history is the most important risk factor. Having a first-degree relative with Alzheimer’s disease increases the risk of developing it by 10 to 30 percent.

• Vascular dementia. About 10 percent of dementia cases are linked to strokes or other issues with blood flow to the brain. Diabetes, high blood pressure and high cholesterol are also risk factors. The disease progresses in a step-wise fashion, meaning symptoms will suddenly get worse as the individual has more strokes or mini-strokes.

• Lewy body dementia. In addition to more typical symptoms like memory loss, people with this form of dementia may have movement or balance problems like stiffness or trembling. Many people also experience changes in alertness including daytime sleepiness, confusion or staring spells. They may also have trouble sleeping at night or may experience visual hallucinations (seeing people, objects or shapes that are not actually there).

• Fronto-temporal dementia. This type of dementia most often leads to changes in personality and behavior because of the part of the brain it affects. People with this condition may embarrass themselves or behave inappropriately. For instance, a previously cautious person may make offensive comments and neglect responsibilities at home or work. There may also be problems with language skills like speaking or understanding.

• Mixed dementia. Sometimes more than one type of dementia is present in the brain at the same time, especially in people aged 80 and older. For example, a person may have Alzheimer’s disease and vascular dementia. It is not always obvious that a person has mixed dementia since the symptoms of one type of dementia may be most prominent or may overlap with symptoms of another type.

• Reversible causes of dementia. People who have dementia may have a reversible underlying cause such as side effect of medication, increased pressure in the brain, vitamin deficiency, and thyroid hormone imbalance. Medical providers can screen for reversible causes in patients.

Dr. Easter’s quest to understand dementia, its various types, causes, and the impact the disease has on families and caregivers, led him to pursue a doctorate degree. His dissertation focused on African American Adolescents’ Experiences Caring for a Relative with Dementia. And, while he now works with the University of Wisconsin Milwaukee for the All of Us initiative, he previously spent five years working as a dementia care specialist for Milwaukee County.

“Mother will be 73 years old this year. The family continues to care for her at home, and we haven’t revisited the conversation about placing her in a nursing home in more than 10 years because it caused so much disagreement among the siblings. We don’t want to place her into a nursing home for multiple reasons, but recently my sister—who is the primary caregiver—has expressed concerns about caregiver burnout,” said Dr. Easter.

Dementia disproportionately impacts African American families. According to Dr. Easter, research shows that African Americans are two times more likely to be diagnosed with dementia and a higher number of women are impacted. Moreover, the CDC states that by 2060, the number of Alzheimer’s disease cases is predicted to rise to an estimated 14 million people, with minority populations being affected the most. Cases among African Americans will increase four times over today’s estimates. Health conditions such as heart disease and diabetes may account for these differences, as they are more common in the Hispanic and African American populations. Lower levels of education, higher rates of poverty, and greater exposure to adversity and discrimination also contribute to the increased risk of Alzheimer’s disease. Women are nearly two times more likely to be affected by Alzheimer’s disease than men. This difference is due to women living longer.

There are many resources available in the local community to educate and support individuals and families experiencing dementia. Dr. Norris recommends that individuals interested in learning more about dementia or available resources visit the Wisconsin Alzheimer’s Institution website (wai.wisc.edu) or call (414) 219-5127.

“There are some great resources for families looking to learn about the disease or caregivers seeking caregiver support.

“Alzheimer’s disease is an emerging public health concern for the African American community. The Wisconsin Alzheimer’s Institution (WAI) Regional Milwaukee Office is advancing dementia and health disparities research by actively engaging underrepresented populations in more scientific studies. Today, more than 1,500 participants are enrolled in the WAI’s Wisconsin Registry for Alzheimer’s Prevention (WRAP). The registry, the world’s largest study of its kind, began 20 years ago in 2001. Engagement and retention of research participants in WRAP is vital to unlocking the answers of why communities of color are at a higher risk of developing the disease, thus this remains a high priority for our office. To learn more about how to get involved and for eligibility requirements, interested individuals should call Research Specialist, Celena Ramsey at (414) 219-7911,” said Dr. Norris.

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The Healthy Eating and Active Living Milwaukee (HEAL) is a culturally-tailored program that aims to provide education, resources to secure healthy foods, and active living supports for adults at-risk for developing lifestyle-related diseases; and, to empower adults to make changes in their physical and social environment to improve nutrition and physical activity. ‘Like’ their Facebook page that’s full of videos of healthy recipes and low-cost, no-cost exercise.