According to the Special Report on Race, Ethnicity, and Alzheimer’s Disease shown in the 2010 Alzheimer’s Disease Facts and Figures, African Americans are the hardest-hit in terms of developing Alzheimer’s and other forms of dementia. African Americans are twice as likely as Caucasians to be diagnosed with dementia, an incurable disease. Additionally, the report reveals African Americans have a higher proportion of vascular diseases (including heart attack and stroke), one of the speculated risk factors of Alzheimer’s disease. Nurses working with those suffering from dementia, whether as a family member or in a hospital setting, are well aware of the devastating effects of these diseases—both on patients and their families.

Even though research confirms a higher prevalence of Alzheimer’s disease and other forms of dementia among African Americans, the caregiving experiences for African Americans have not been fully explored. Furthermore, caregiving literature demonstrates an ever-growing chasm in the knowledge base, involving the relationship between caregiving stressors and physical health effects for African American caregivers. An unraveling of African American caregivers’ experiences is long overdue.

Cultural values

Over the past 20 years, research has shown cultural differences in regards to dementia care and the effect on the caregivers. A number of studies have shown African American dementia caregivers, when compared to Caucasians, are more likely to be younger, single, and with less formal education. They also report having to provide simultaneous care for other family members, such as young children, and do so with fewer financial resources. “Because of their lower income and higher poverty rates, the financial stress of caregiving may pose a greater emotional burden on African-American caregivers,” according to Rita Hargrave, M.D., in her article “Caregivers of African American Elderly with Dementia: A Review and Analysis.” These sociocultural factors often contribute to greater levels of stress. Caring for those with dementia is a huge challenge, made even more difficult to surmount when nurses or other caregivers must navigating the caregiver’s journey with sparse or meager outside resources.

Research has also revealed that African Americans consider their dementia caregiving duties less burdensome than their Caucasian counterparts, painting a picture of an exceptionally resilient culture. Yet, given confirmed statistics revealing African Americans are at greater risk of developing health issues such as hypertension, diabetes, kidney failure, and various types of cancers than other ethnic populations, the presumption of unshakable resilience should be called into question.

Cultural factors help explain the idea of resiliency among African Americans. There is overwhelming evidence in caregiving literature that African American dementia caregivers rely upon spirituality as a buffer against deleterious health outcomes. Arguably, spirituality and religiosity are established coping strategies that play an important mediating role in the lives of African American caregivers.

Spirituality is deeply embedded in the culture of African Americans. This ethnic group often finds strength and solace in spirituality and strong familial relationships. In the face of the darkest and most trying moments in the lives of African American caregivers, they draw upon faith and family in an attempt to navigate the perils of caregiving stressors. Providing health care can also be an uplifting experience for African American nurses—a paradox considering the potential physical detriments that can surface as the result of caring for a loved one with dementia. Providing day-to-day care for loved ones affected by various forms of dementia, including Alzheimer’s, triggers an array of caregiving stressors.

Additionally, African American family caregivers beset by their own challenging physical issues, such as older adult caregivers, frequently enter into the caregiving role without the basic skills and knowledge required for this role.

As research verifies the caregiving experience has undesirable effects for caregivers’ health, it is important to pinpoint underlying causes that create undue stress for caregivers. An expansive consensus has been established in the literature that problematic behaviors contribute tremendously to unfavorable health outcomes for family caregivers of persons with dementia. While it has been postulated that behavioral problems are a source of enormous distress for family caregivers, other stress factors have also been associated with health consequences. One such factor is caregiving self-efficacy.  Researchers have suggested that self-efficacy is an important predictor of caregivers’ emotional well-being.

Reportedly, African American care-recipients with dementia are plagued with more physical illnesses and are more likely to have a greater decline in daily living activities than Caucasian care-recipients. According to the Special Report on Race, Ethnicity, and Alzheimer’s Disease, caregiving has an unfavorable impact on the health, employment, income, and financial security of caregivers.

Lived experience

A concrete understanding of the caregiving experience can be derived from family caregivers who have day-to-day contact with persons suffering from dementia and who are intimately involved in their care. Family caregivers and registered nurses Carol and Lisa* had the primary shared responsibility of caring for their mother and grandmother, both with Alzheimer’s disease. The sisters took turns with round-the-clock shifts in their loved ones’ home. In so doing, their mother and grandmother were able to remain in a comfortable environment with familiar surroundings for an extended period of time.

Although Carol and Lisa have worked in diverse nursing settings, they were not emotionally or physically prepared for the caregiving tasks that confronted them. Carol says she did not comprehend the enormity of her responsibilities or how they could affect her emotional and physical well-being. “I found myself becoming more and more depressed with overwhelming feelings of sadness. The increased feelings of loneliness and helplessness were too much for me to bear at times.” Carol was diagnosed with depression several years prior to sharing caregiving duties with her sister. She sought help from her psychiatrist, who prescribed an antidepressant. Carol also continued to attend Alcohol Anonymous meetings in order maintain her sobriety. She also admitted to having disruptions in her sleep pattern due to extensive involvement in caregiving activities, as well as physical pain. “Caregiving activities involving bending and lifting triggered back pain,” Carol says.

Lisa shared her sister’s caregiving hardships. “In the beginning, I tried to cope with my stress alone without seeking any professional assistance,” she says. Lisa says she gained an abnormal amount of weight and was sleep deprived. “The stress of caring for both my mother and grandmother had a negative effect on my blood pressure.” Lisa suffers from hypertension, back pain, joint tension, and anxiety, though she finally reached out for professional help. With counseling, Lisa was prescribed medications to manage her depression, anxiety, and hypertension.

Carol and Lisa soon found that performing everyday caregiving tasks brought about a tremendous amount of stress. Their mother’s and grandmother’s functional ability to participate in daily living activities was very limited. Home health provided limited rehabilitation services for their mother, who they hoped would recover some functional ability in her lower extremities. They were unsuccessful in regaining any functional ability to ambulate. Although the grandmother was ambulatory, she was limited, walking very short distances in the home and only with assistance from Carol and Lisa. According to Carol, having no respite services limited her social activities and interests outside the home. Lisa states that she often felt very isolated and had no one to turn to for sharing her emotional pain. As the grandmother’s dementia worsened over time, her behavior became more difficult to manage due to aggressive and combative behaviors.

After three years of providing care for the mother and nearly one year of rendering care for the grandmother, Lisa and Carol made the painful decision to move their loved ones to an assisted living facility in 2007, where they could reside together as their mother’s cognitive status began to deteriorate at a steady rate. The sisters shared feelings of guilt. Six months later, the mother and grandmother were moved to a community nursing home due to the need for a safer and more secure environment. Lisa and Carol’s grandmother died in the fall of 2010. Their mother remains in the community nursing home, where the sisters make weekly visits.

Nurses taking a pivotal stand

Working with family caregivers for many years has afforded me the opportunity to attain a broader perspective of the experiences of African American dementia caregivers. Though they may have unique cultural background, like any caregiver, they want unencumbered access to resources and services to assist in their caregiving role. Having such caregiving necessities lightens the burden of caregiving. Caregivers from all races and across the economic spectrum express concern for their own physical health and express uneasiness for their loved ones’ well-being, particularly if they are no longer physically able to carry out the caregiving duties. Unraveling the link between caregiving stressors and physical health effects for African American caregivers should be a central concern for nurse researchers. In order to gain a deeper understanding of the relationship between these stressors and physical health, caregivers’ experiences must be closely examined.

Front-line professionals such as registered nurses and other health care providers working with family caregivers should be able to design family-centered strategies and resources based on established research findings. They must stand ready to support and empower those caring for persons with dementia. Such empowered caregivers would occupy a pivotal position to increase caregiver competence.

Empowering strategies

Clinicians can impart appropriate caregiver-centered strategies that benefit the caregivers’ general well-being. While it is acknowledged that major stressors such as aggression and agitation are not easily overcome, research shows that support and an array of interventions can empower caregivers to better cope with the demands inherent in the role. Reducing stressors will likely produce more favorable health outcomes for both caregiver and patient.

Psychosocial and supportive interventions include, but are not limited to, social services, respite care, caregiver support groups, and counseling, all of which are recognized as efficacious caregiver-centered strategies.

When nurses acquire a deeper understanding of African American caregivers’ experiences, a broader range of empowering strategies can then be offered. It is paramount for nurses who work with dementia caregivers to remain at the forefront of all-encompassing caregiver strategies. The overall goal is to boost the quality of life for the caregiver, as well as the care recipient.   

* Names have been changed.

Reference

2010 Alzheimer’s disease and figures. Retrieved November 2, 2010, from http://www.alz.org/alzheimers_disease_facts_and_figures.asp.

Caregivers of African-American Elderly with Dementia: A Review and Analysis. Rita Hargrave, M.D. Retrieved January 13, 2011 from http://www.annalsoflongtermcare.com/article/6317.

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