The True Effects of Caring for an Individual with Alzheimer's Disease
- Venezia Garza
- Mar 18, 2021
- 6 min read
Eleven years ago, my grandmother was diagnosed with some form of dementia which was later confirmed to be Alzheimer’s disease. Her symptoms seemed to worsen daily, and I realized that I would soon be losing my grandma, not physically, but mentally. Now, eleven years later, her condition has intensified and it is a constant battle to get her to perform daily activities such as eating, changing clothes, using the restroom, and most especially showering. As time progressed, I noticed this beginning to take a toll on my mother, so I stepped up and began taking on some caregiving responsibilities. Nevertheless, both my mom and I have experienced many apparent effects that have resulted from caring for her and it has been crucial for us to stay informed about the disease to know how to best care for my grandmother and ourselves. Alzheimer's disease not only affects the individual who has it, but it also affects the caregiver who is looking after that person. Caring for an individual with Alzheimer’s disease has been shown to lead to negative effects on that caretaker's mental and emotional wellbeing ultimately putting them more at risk of becoming debilitated as well.
Alzheimer's disease is the 5th leading cause of death in the world, according to the World Health Organization, and it affects over 5.5 million Americans and their families. It is also one of the most common forms of dementia, accounting for 60-80% of cases. Despite decades of research, scientists have only just begun discovering exactly what Alzheimer's disease is and there are still no effective treatment options and no known cure. Over time, it results in the deterioration of the brain affecting a person’s memory and their ability to learn, communicate, and respond to the environment. Some of the early symptoms include memory loss, confusion, and difficulty remembering newly learned things. As the disease progresses and travels to all other parts of the brain, symptoms include spatial disorientation, mood and behavior changes, violence towards others, complications in the circadian rhythm, severe memory loss, and inability to walk, talk, and swallow. With all of the various symptoms that caregivers need to tend to, it is no surprise that in 2018, American families spent approximately 18.5 billion unpaid hours and $277 billion yearly caring for loved ones who had Alzheimer’s disease and other forms of dementia (“Alzheimer’s Statistics”).
One of the immediate responses from caregivers that occurs when the situation begins to get serious with the individual with Alzheimer's disease is for them to self-isolate from their friends and family. In the midst of caring for this individual, “it’s easy to abandon the people and activities [they] love...but [they] risk [their] health and peace of mind by doing so” (Tips for Alzheimers and Dementia Caregivers). Understandably, caregivers believe that their best option is to hide their difficulties and struggles from the ones they love so as to not involve them. In the beginning, they would rather face the challenges of caregiving alone, rather than put some of their burden on a family member or friend. However, in doing so, caregivers become more prone to developing serious mental illnesses, such as depression and anxiety. A study done at the University of Missouri School of Medicine found that “23 percent of them experienced moderate or severe depression and one-third suffered from moderate or severe anxiety.” While the caregiver is battling their own mental health issues, they are then unable to provide the best care for their loved one, worsening the problem further.
Through tending to the individual who has Alzheimer’s disease, many caregivers reach a point where they realize that their situation is never going to get any better with their loved one and that subjects them to feelings of grief and loss. The Alzheimer’s Association stated that caregivers often experience certain stages of grief including feelings of loss, failure, resentment, and even wishing that the person they are caring for would just die. While these may make the caregiver seem like an awful individual, “it is normal [for them] to feel lost, abandoned, or angry” (Caregivers Stress). Since Alzheimer's disease progresses over long periods of time, it is common for caregivers to constantly think about the moment when they will lose their loved one mentally to this disease. That is why those thoughts are justified in a sense because they are constantly pondering over when it will all end.
In the midst of taking on numerous responsibilities and tackling challenges, caregivers either forget to give themselves ample time to sleep and recharge for the following day, or at times they simply cannot sleep. This is because individuals who have middle to advanced Alzheimer's disease experience disruptions in their circadian rhythm and often confuse night and day. This results in them waking up in the middle of the night, thinking it is morning, and possibly putting themselves at risk because no one is monitoring them. A study conducted in Italy on Alzheimer’s Care at Home: A focus on caregivers strain concluded that a caregiver’s quality of sleep was significantly lower than that of non-caregivers and those sleep problems continued on even after the caregiver stopped tending to that individual. In my personal experience, at least two times a week, my grandmother will go to sleep at around 10pm and then wake up once again in the middle of the night thinking it is morning. In those situations, my mom and I have to get up and convince her to go back to sleep. This is not an easy task because she often gets upset and begins lashing out verbally and physically. It can then take up to an hour to calm her down and put her back in bed, and that is an hour of sleep that my mom and I lost. Furthermore, my mom has recounted that there have been nights where she simply can not go to sleep because she is fearful of my grandma getting up at night and walking out the door, or falling and hurting herself. While these reactions stem from my mom and I wanting to protect my grandma, it has slowly taken away our ability to have a good night's sleep and wake up the following morning fully refreshed. This exhaustion that caregivers slowly get used too, affects other aspects of their health and caregiving abilities.
In cumulation of all of the effects presented above, the one overarching issue that many caregivers battle with, is Caregivers' Stress. Caregivers' stress can be summed up as the “emotional and physical stress of caregiving” and it occurs in all types of caregiving (“Practical solutions for Caregivers Stress”). It is extremely common for all caregivers to show some of the many signs of Caregivers' Stress because they are constantly in high stress situations while caring for their loved one. A study conducted in Japan focused on the Impact of Caring for Persons with Alzheimer's Disease or Dementia on Caregivers' Health Outcomes. Their conclusions stated that “caregivers have a greater risk of medical illness, psychological impairment, disruption of professional and personal roles, and critically, an increased risk of mortality” (Goren, Amir). These results are jarring because the entire point of being a caregiver is to care for someone else. At times, caregivers become so involved and focused on caring for their loved one, that they forget to care for their own health as well. As a result, since they are debilitated, their caregiving abilities become compromised and they are unable to provide the best and safest care possible for their loved one. That is why it is extremely important for caregivers to self-check themselves for any signs of Caregivers Stress or other health issues; for the protection of themselves and their loved one.
Caring for an individual with Alzheimer’s disease can be grueling and lead to numerous negative effects on the caregivers’ mental and emotional wellbeing. Between caring for their loved one, working, and trying to maintain their normal lives, caregiving can quickly become overwhelming and result in the caregiver forgetting to care for themselves first. My mom and I suffer from many of the effects brought by caregivers' stress and they unfortunately will likely only get worse as time goes on. Nevertheless, we actively seek out support from the numerous resources that are available to us to alleviate some of the effects from caring for my grandma. Above all, we are proud caretakers of my grandma and the sacrifices have made for her wellbeing have all been worth it.
Works Cited
“Alzheimer's Statistics.” Alzheimers.net, www.alzheimers.net/resources/alzheimers-statistics/.
Bach, Becky, et al. “Caregivers Experience High Rates of Anxiety, Depression, Study Finds.” Scope, Logo Left ContentLogo Right Content 10,000+ Posts Scope Stanford University School of Medicine Blog, 13 Jan. 2018, scopeblog.stanford.edu/2017/02/16/caregivers-experience-high-rates-of-anxiety-depression-study-finds/.
“Dementia.” World Health Organization, World Health Organization, www.who.int/news-room/fact-sheets/detail/dementia.
Goren, Amir, et al. “Impact of Caring for Persons with Alzheimer's Disease or Dementia on
Caregivers' Health Outcomes: Findings from a Community Based Survey in Japan.” BMC Geriatrics, BioMed Central, 10 June 2016, www.ncbi.nlm.nih.gov/pmc/articles/PMC4903014/.
“Practical Solutions for Caregiver Stress.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 19 Mar. 2020, www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784
“Promoting Health for Older Adults.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 25 Sept. 2019, www.cdc.gov/chronicdisease/resources/publications/factsheets/promoting-health-for-older-adults.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fchronicdisease%2Fresources%2Fpublications%2Faag%2Falzheimers.htm.
“Tips for Alzheimer's and Dementia Caregivers.” HelpGuide.org, 14 Feb. 2020, www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm.
Varela, Graciela, et al. “Alzheimer's Care at Home: a Focus on Caregivers Strain.” Professioni Infermieristiche, U.S. National Library of Medicine, 2011, www.ncbi.nlm.nih.gov/pmc/articles/PMC3662364/.
Commentaires