November marks the celebration for both National Alzheimer’s Disease Awareness and Family Caregivers. While people with Alzheimer’s suffer a difficult journey of their own, many Alzheimer’s caregivers in the United States often face a host of mental and emotional stressors while caring for their loved ones who are battling the degenerative brain disease.
According to the Alzheimer’s Association, 59% of Alzheimer’s caregivers have reported their level of emotional stress as high or very high, while 35% report declining health due to caregiving responsibilities.
“Caregivers who experience burnout put their health at risk and compromise their ability to care for someone else. As hard as it may be, caregivers need to make their health and well-being an equal priority,” said Beth Kallmyer, vice president, care and support, from the Alzheimer’s Association.
Oftentimes, the dynamics behind caregiving for family members require a greater investment of time, energy, and around-the-clock planning than a professionally paid caregiver working under the limitations of a home care agency. The tiring role of family caregivers is often overlooked by familial communities and the healthcare profession alike.
The various symptoms of psychological distress including anger at the person with Alzheimer’s and frustration at their lack of self-autonomy, denial about how the disease affects the family member who has been diagnosed, depression, and anxiety regarding the future that lies ahead, are just a few stressors associated with taking care of a family member, often causing some degree of Post Traumatic Stress Disorder (PTSD) for the caregiver.
Managing Caregiving Responsibilities Among Family Members
Dr. Sandra Edmonds Crewe, dean and professor of social work at Howard University, has extensive expertise and research interests in caregiving in the African-American community and social isolation.
Crewe still recalls having to manage levels of emotional stress and anger while caring for her late mother diagnosed with Alzheimer’s disease, learning not to internalize her mother’s arbitrary accusations or behavior, but rather understand the ailments of the brain disease and how it affects the individual.
“It’s the disease that you are angry with, not the person. I would see glimpses of my mother and I would say ‘Oh, that’s my girl,’ and then there would be times that I knew I would not recognize her as the person I knew her to be,” Crewe explained.
It serves as no surprise that within formal and informal settings, the American Psychological Association reports that women make up the majority of caregivers at roughly 53 to 68 percent. Families are typically prone to expecting women to step in as the nurturing caregiver for an ill family member, often causing females to experience mental distress at greater rates than their male counterparts.
But sometimes, even the men feel the pressure, too. Male Caregiver, Ty Williams, 35, works as a certified nursing assistant caregiver in various homes across the Prince George’s County area. Williams recounted many experiences taking care of Alzheimer’s patients with children living overseas or out-of-state, leaving the patient to heavily rely on him for long hours throughout the day.
“The load depends on how a patient is feeling that particular day. They respond differently depending on their mobility, too,” Williams told The Informer. “Some of them are on bed rest, which usually makes them more irritable when they can’t get up and do things for themselves. They are stressed because they can’t freely do what they want to do.”
While carrying the mental and at times physical weight of responsibilities managing an Alzheimer’s patient for a living, Williams knows about the double shift of caregiving outside of work. He would come home to an elderly grandmother simultaneously battling dementia. While he loved his grandmother dearly, he shared that sometimes the weight was quite stressful to manage on his own.
“Sometimes it would be frustrating because I already have to deal with the responsibilities of caring for an Alzheimer’s patient at my job. Once I got home, it would just be expected of me to take after my grandmother with little support from my other cousins around to share the responsibility,” Williams said. “Of course, I loved to be there with her, but I could have really used some help. I could handle the in-house things, but having someone handle the outside errands like groceries, picking up her medication, things like that would have been a great help to me.”
Crewe emphasized the importance of families properly delegating the weight of responsibilities before caregivers find themselves on the brink of a mental overload.
She said she encourages caregivers to approach the topic by gently expressing the help they may need. Crewe also suggested that caregivers avoid constant complaints about what they have to do and what others do not do, to not isolate themselves and possibly their loved ones with the constant objection.
Finding ways to include the other members of the family rather than criticize them can make all the difference in organizing the support you may need.
“Involve the family. You have to allow them to step up,” said Crewe. “We don’t all have the same gifts. My gift may be that I can work with a person with dementia. Someone else’s gift may be to help pay for the care. That’s no lesser gift. Sometimes we place the resources on a hierarchical matter, but it takes the whole group. Be willing to share the burden and the responsibility.”