Caregiver Burden in Alzheimer’s Disease

Alzheimer’s disease is a progressive, irreversible brain disease that slowly causes deterioration is memory and thoughts, and eventually leads to the inability to complete simple tasks. Early onset Alzheimer’s disease occurs between thirty to sixty years of age and is very rare. In late onset Alzheimer’s disease, which is most commonly seen, symptoms appears when an individual is in their 60’s. Although symptoms may vary from person to person, memory changes are often the first signs of Alzheimer’s disease. Other areas of thinking such as finding the right words or impaired reasoning may also indicate the early stages of Alzheimer’s disease. Individuals with Alzheimer’s disease have difficulty completing everyday tasks such as driving a car or preparing a meal. These individuals may ask the same questions repeatedly, get lost easily, misplace things, and even find simple tasks difficult or confusing (National Institute on Aging, 2017). They may have trouble recognizing family and friends. Patients may also begin to have hallucinations, delusions, and paranoia (McNair, 2015). The purpose of this paper is to provide insight on the mental, physical, and financial burden that caregivers experience when taking care of an Alzheimer’s patient.

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According to Kotradyova (2018, p. e73), “Alzheimer’s disease is the sixth most common cause of death in the US, and the fifth most common cause of death of Americans over the age of 65.” Over 5 million individuals in the United States have Alzheimer’s disease, and as the population ages, the prevalence of Alzheimer’s disease increases as well (Wennberg, Dye, Streetman-Loy, & Pham, H, 2015). With the aging population living longer, more and more individuals are diagnosed with Alzheimer’s disease. The number of people affected with Alzheimer’s disease is expected to double every twenty years. Currently in the United States one in ten people are living with this disease (Grabher, 2018). Although treatment can help manage symptoms in some patients with Alzheimer’s disease, currently there is no cure for this disease (National Institute on Aging, 2017).

The key words that were used when searching for articles to be included in the paper were “caregiver burden with Alzheimer’s patients”,”caregiver burden”, “caregiver stress”, “Alzheimer’s patients, and “dementia patients”. The SUNY Poly Cayan Library “CINAHL Plus with Full Text” database was used to find peer-reviewed articles. Articles were limited to current journal articles within the past five years. All articles were scholarly and in the English language. The number of articles that were provided for the search was well over a thousand although, only a total of ten articles were retained for this particular review.

Providing care for individuals with Alzheimer’s disease is demanding because more and more care is required as the disease progresses. Due to the fact that caregivers play such important roles for patients with Alzheimer’s disease, the factors that affect their burden should be rezognized (Yu, Wang, He, Liang, & Zhou, 2015). The problem addressed for the purpose of this assignment is the negative impact that caregivers experience when caring for an Alzheimer’s patient. Because of the progression of the disease, the individual with Alzheimer’s disease and the caregiver become largely affected. In many cases, patients with Alzheimer’s disease are cared for by family members such as a spouse or an adult child. At times, several family members care of the individual with Alzheimer’s disease, however, patient care is very demanding. The care of an individual suffering from Alzheimer’s disease creates emotional strain and the family may face many problems (Kotradyová, 2018). Due to the devastating effects of caring for an Alzheimer’s patient, caregivers often experience high levels of stress from the challenges of physical, psychological, emotional, social, and financial stressors related to caregiving (Wennberg, Dye, Streetman-Loy, & Pham, H, 2015).

As mentioned, Alzheimer’s disease does not only concern the patient themselves, but also those who directly take care of the individual. A study was done in Slovakia in 2016 where 10 participants who had taken care of a individual with Alzheimer’s disease for more than two years were included. A qualitative research was carried out and aimed at identifying the load factors related to taking care of individuals with Alzheimer’s disease. Research was conducted using the focus group method and informed consent was given. The results showed that the poor health condition of patient itself is what causes stress in the caregiver. The emotional stress of family members who cared for the patient was due to the loss of memory, impulsivity and irritability, and change in character or personality. The participants struggled with strong negative feelings, but also feelings of sadness because they were losing their family member to the disease. Participants described feelings of frustration that they cannot change what is going on. This frustration often leads to emotions of anger at oneself or even at the patient suffering from the disease (Kotradyová, 2018).

Caregivers of Alzheimer’s patients may suffer from mental health disorders from the constant stress of caregiving. A meta-analysis was done where 10,825 caregivers were assessed to determine the prevalence of mental health disorders perceived from giving care to an Alzheimer’s patient. The results determined the prevalence of depression was 33.9%, suggesting that at least 1 of 3 caregivers of patients with Alzheimer’s disease suffer from depression. The occurence of depression among caregivers of patients with Alzheimer’s disease was particularly higher than caregivers to patients with psychiatric diseases. When comparing the occurence of depression to the caregivers of patients with a physical illness such as a stroke, the occurence of depression was higher among the caregivers of patients with Alzheimer’s disease. The study concluded that caregivers of patients with Alzheimer’s disease have a higher occurence of mental health disorders, specifically anxiety and depression. The high occurence of caregivers with depression is commonly seen with female caregivers, caregivers with male patients, and caregivers who were married to the patient. (Sallim, Sayampanathan, Cuttilan, & Ho, 2015).

Many family members and caregivers also experience feelings of helplessness and guilt. Caregivers feel helpless in not being able to find doctors who can correctly diagnosis their family member’s impairment accurately, to going to multiple physicians to get an accurate diagnosis.  Guilt is another common feeling family members and caregivers experience. Alzheimer’s disease caregivers feel guilty for the way they behave toward the patient, for losing their temper, and for spending time with friends instead of being with the patient. Another big form of guilt is when a caregiver must do things that take away from the patient’s independence, such as taking away their car keys so they cannot drive or not allowing them to live alone or handle their own finances (Grabher, 2018).

The culture to which a person belongs to, can also affect the level of caregiver burden. A cross-sectional study included patients diagnosed with Alzheimer’s disease from two hospitals and three communities in Taiyuan, China and their caregivers.  Caregivers were assessed on their burden of caregiving, perception of caregiving, family function and social support. In the Chinese culture, caregivers view caregiving as just another part of family life. However, Chinese caregivers of patients with Alzheimer’s disease scored higher levels of depression and caregiver burden compared with caregivers in Western societies (Yu, Wang, He, Liang, & Zhou, 2015).

Caregivers continue to experience physical burdens from caring for patients with Alzheimer’s disease. They experience worsening of health and account for higher statistics of bad health and mortality, due to the fact that they’re lacking sleep, lacking time for leisure activities and lacking time to take care of their own health. Caregivers of Alzheimer’s patient have worse physical health than people who do not care for patients. Taking care of the home and chores of the Alzheimer’s disease patient such as laundry and food preparation requires energy and can be extremely exhausting, more so if the caregiver has to take care of his or her own household also. A woman, who participated in a study that cared for her father with Alzheimer’s disease for three years, said the following, “My father was a hard-working and smart person all his life. He liked taking walks and loved nature. At the beginning, I wanted him to live at least a little bit just like before the illness, so I dressed up each day and went for a walk for an hour. Today, I cannot do it. My father cannot get dressed on his own, I have to put on his shoes, clothes and then, when we get back home, repeat the whole process. It’s better during the summer, but during the winter? Also, if I want to bathe him, I get completely exhausted. Additionally, I cook, clean, try to take care of the household, but it seems like I am physically unable to continue, I’m exhausted and don’t sleep enough, since I wake up all the time wondering, if my father woke up and wanders around the house” (Kotradyová, 2018, e77). This goes to show how exactly exhausting it is for caregivers on a daily basis. In general, the workload of caregivers is overwhelming which has a negative effect on their own health. 

Social isolation of caregivers who take care of an individual with Alzheimer’s disease results from the fact that the disease requires maximum supervision and care. This is often the reason why caregivers lose interactions with friends and family and close themselves off. Individuals often connect their social isolation with constant feelings of loneliness because of the continuous care for an individual with Alzheimer’s disease (Kotradyová, 2018).

Caring for an Alzheimer’s patient not only affects the caregivers mentally and physically, but financially as well. Family caregivers, especially those caring for people with Alzheimer’s disease, are likely to face some financial burden. “The Alzheimer’s Association estimated the indirect cost of dementia (including the loss of earnings as a result of reduced working hours) as $65 billion in 2005.” (Nam, 2016, p. 1093). Approximately 10% of caregivers of patients with Alzheimer’s disease missed work because of caring for the patient, approximately 30% gave up work for patient-related responsibilities, and approximately 8% turned down opportunities for promotion. A study was completed to examine the relationship between financial difficulty and depressive symptoms in 659 Alzheimer’s disease caregivers. Depressive symptoms were measured using the CESD self-report instruments for depressive symptoms in caregivers. This measure consisted of twenty statements about one’s depressive symptoms and their frequency in the past week based on a four-point Likert-type scale ranging from “rarely or none at all” (0) to “mostly or almost all the time” (3). Financial difficulty was evaluated by asking “How hard is it for you to pay for basic necessities such as food, housing, medical care, and heating?” These categories were also rated on a four-point Likert-type scale ranging from “not difficult at all” (0) to “very difficult” (3). Results conclude that financial difficulty has a significant effect on depressive symptoms. This suggests that dementia caregivers are in need of support for their financial difficulty (Nam, 2016).

There continues to be underlying financial burden related to taking care of Alzheimer’s disease patients in the hours of unpaid care and the economic value of caregiving. “In 2013, the 15.5 million family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provided an estimated 17.7 billion hours of unpaid care” (Grabher, 2018, p. 10). This number shows an average of 21.9 hours of care per caregiver per week, or 1,139 hours of care per caregiver per year. These numbers have had a big impact on the caregivers, their families, and the economy (Grabher, 2018). Not only is caregiving costly currently, it can also have devastating cost for their long-term future and retirement. Caregiving can result in loss of employment, diminished savings or home equity, a loss in social security benefits, or decreased pension funding. Due to the high cost of caregiving, healthcare providers should know about the available resources and share this information with their patients and caregivers (McNair, 2015)

Coping strategies play an important role in regulating the psychologic impact caregivers experience from the disease. A study including eighty-six caregivers of corresponding patients with Alzheimer’s disease aimed to evaluate the burden and anxiety experienced, the effectiveness of coping strategies, and the relationships with burden and anxiety. The first result is that the global burden in the sample is high compared with those reported in different studies. Among other burdens, time dependence is the most important. Further, Alzheimer’s disease caregivers experience feelings of failure about their personal expectations of the phase of life they are living. Although, little impact comes from negative feelings toward the patient and their illness. Taking on the role of caregiving brings along an increasing burden, particularly in developmental and physical aspects. Relatives experience the loss of many opportunities because of the time restriction that occurs with caregiving. The coping strategies adopted by the female caregiver are often emotion-focused. This type of strategy predisposes the caregiver to a higher burden and distress. Alzheimer’s disease caregiving is often associated with negative effects. This indicates that caregivers are physically, emotionally, and financially overwhelmed by their caregiver role (Iavarone, Ziello, Pastore, Fasanaro, & Poderico, 2014).

Educating caregivers on the behaviors they can expect from patients with Alzheimer’s disease can minimize the negative impact when issues emerge. Caregivers are more likely to seek help from a healthcare provider when they are disturbed by the patients behaviors and uncertain about the best ways to interact. Early intervention by healthcare professionals could minimize the negative impact of Alzheimer’s disease on caregivers’ lives and provide caregivers with tools to manage patient’s negative behaviors (McNair, 2015).

Researchers have shown that daily routines are crucial to decreasing agitation and disruptive behavior in patients with Alzheimer’s disease. By creating a predictable routine this can improve the quality of patient’s lives and the lives of their caregivers. Routines make it easier to remember what needs to be done each day, provides a sense of security, and can reduce anxiety. Routines that incorporate interests and activities the patient has enjoyed in the past are more likely to reduce negative behavioral symptoms associated with Alzheimer’s disease (McNair, 2015).

Caring for a patient with Alzheimer’s disease can become very stressful. Managing work, family life, and caregiving often leads to increased emotional stress and depression. To be able to provide the best care for a patient, caregivers often neglect their own needs. Caregivers may experience feelings of sadness as they observe their patient or family member decline in function and personal identity. They may experience depression from social isolation and exhaustion from having to care for long hours. Maintaining a life outside of caregiving is important to staying emotionally and physically healthy. Healthcare providers should encourage activities that decrease social isolation such as staying in touch with family and friends and joining a social group. It is important for the caregiver of an Alzheimer’s patient to build a support system. Exercise and engaging in an enjoyable physical activity is a positive way to relieve stress and improve health outcomes in caregivers (McNair, 2015).

Many Alzheimer’s disease caregiver interventions have been developed. Strategies may include support groups, which can be used to normalize experiences and allow for more social connections and support; education classes, which provide information and give caregivers tools and skills to solve problems, and counseling interventions that develop individualized plans based on personal needs. Seeing that caregivers are at risk of developing a wide range of negative outcomes, frequent monitoring of caregiver mental and physical health is an important consideration for interventions (Wennberg, Dye, Streetman-Loy, & Pham, H, 2015).

Further research should involve the assessment and solution of caregivers and the burden that so many of these individuals face. The emotional, physical, and financial burden that caregivers experience puts them at risk of having their own health problems. Their health problems often go either avoided or unnoticed because they are busy caring for another individual. This is important for nursing practice because nurses can recognize when caregivers are emotional or physically exhausted. Nurses can be a helping hand for those that are in need. Further research that can be conducted is to assess what other factors may be contributing to the burden that caregivers face. Is it due to the fact that it is their family members suffering, because they have their own families to take care of also, or another factor? Interventions should be put into place to help and support caregivers and the important role they plan in Alzheimer’s patient lives.

References

Grabher, B. (2018). Alzheimer’s disease and the effects it has on the patient and their family. SNM Journal, 1-26.

Iavarone, A., Ziello, A., Pastore, F., Fasanaro, A., & Poderico, C. (2014). Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease. Neuropsychiatric Disease and Treatment, 10, 1407-1413.

Kotradyová, K. (2018). Determinants characterizing the life of a caregiver treating an individual with alzheimer’s disease. Social Sciences in Health, E72-E80.

McNair, T. (2015). Early intervention for caregivers of patients with alzheimer’s disease. Home Healthcare Now, 33(8), 425-430.

Nam, H. (2016). Financial difficulty effects on depressive symptoms among dementia patient caregivers. Community Mental Health Journal, 52, 1093-1097.

National Institute on Aging. (2017). What is alzheimer’s disease? Retrieved November 10, 2018, from https://www.nia.nih.gov/health/what-alzheimers-disease

Raggi, A., Tasca, D., Panerai, S., Neri, W., & Ferri, R. (2015). The burden of distress and related coping processes in family caregivers of patients with Alzheimer’s disease living in the community. Journal of the Neurological Sciences, 77-81.

Sallim, A., Sayampanathan, A., Cuttilan, A., & Ho, R. (2015). Prevalence of mental health disorders among caregivers of patients with alzheimer disease. Journal of the American Medical Directors Association, 1034-1041.

Wennberg, A., Dye, C., Streetman-Loy, B., & Pham, H. (2015). Alzheimer’s patient familial caregivers: A review of burden and interventions. Health & Social Work, 40(4), E162-E169.

Yu, H., Wang, X., He, R., Liang, R., & Zhou, L. (2015). Measuring the caregiver burden of caring for community-residing people with alzheimer’s disease. PlosOne, 10(7).