The Welfare of Caregivers for Dementia Patients

Caregivers are extremely important figures in all societies and look after the senior citizens who are esteemed individuals of the community. The Journals of Gerontology state, “There are 16,840 nursing homes in the United States with 1.56 million residents. The majority of these residents (70.8%) have some form of memory impairment” (Tornatore 2004). For some caregivers, both in and out of nursing homes, their work can bring them a sense of satisfaction and feelings of generosity. These feelings can lead to long-lasting joy according to His Holiness the Dalai Lama and Archbishop Desmond Tutu.

Other caregivers, especially those who care for people with dementia, do not feel this happiness and joy when working. Instead, they experience decreased mental, physical, and emotional health due to their roles. This may be because “Dementia affects several areas of life including memory, learning capacity, thinking, orientation, calculation, judgment, behavior and activities of daily life” (Seidel and Thyrian 2004). Dementia caregivers need to give extensive care to their recipients because of the effects of dementia. Since caregivers give help around the clock, it may be hard for caregivers to have a stable income or find a high paying job that has accommodating hours. This lack of a high paying job, for many caregivers, could be another reason for low life evaluation according to Daniel Kahneman, a winner of the Nobel Memorial Prize in Economic Sciences. These adverse effects of dementia caregiving raise the question: to what extent do the roles of dementia caregivers affect their overall welfare?

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Predominantly, a dementia caregiver’s welfare is negatively affected by their roles in the form of caregiver burden. Caregiver burden is correlated to the increased mental, physical, emotional, and financial stress that caregivers face when providing help for a person with memory impairment. However, not all caregivers experience the same amount of burden or the same effects on the body. The level of burden is dependent on the circumstances in which the caregiver is in.

Caregiver burden is described as “a multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill individual”. As stated previously, all caregivers experience varying effects on their overall welfare. In fact, several factors of a caregiving situation can be predictors of a higher caregiving burden. Studies have proven that sociodemographics, premorbid relationship, and stage of dementia are all factors that can have an impact on the level of caregiver burden.

The first factor that has a measurable impact on the level of caregiver burden is sociodemographics, specifically, age and gender. If a dementia patient is being cared for at home, they are most likely to be cared for by a female spouse. This may have something to do with increased levels of caregiver burden in older females. One study in the Journal of Advanced Nursing, written by Heejung Kim, researches who is the most likely to suffer from higher levels of caregiver burden. The findings show that “Caregivers who are advanced in age and co-residents experience greater burden than young, male caregivers and those who live apart from the care-recipient”. Therefore, the age and gender of the caregiver can potentially predict higher levels of burden. Add one more connecting maybe?

The caregiver and care receiver’s premorbid relationship can have repercussions on the caregiver down the road. The premorbid relationship describes the connection between the caregiver and receiver before the diagnosis of dementia. Commonly, if the premorbid relationship is not strong, there will be an increased difficulty and care given will not be as effective. Dr. Pamela Steadman, a specialist in philosophy and psychology, writes, “Premorbid relationship satisfaction is associated with caregiver burden, such that less satisfaction may negatively affect caregivers’ reaction to patients’ behavior, communication and problem solving skills”. Contrarily, having a good bond between the caregiver and patient can lead to better communication, more tolerance, less frustration, and prolonged home care.

In addition to sociodemographics and premorbid relationship, the stage of dementia can contribute to the levels of caregiver burden. In the most advanced stages of dementia, the patient can lose motor skills and become extremely forgetful, delusional, and aggressive. As dementia gets more advanced, the roles of the caregiver become more demanding. Therefore, a “moderate to severe disability affecting basic daily activities in care-recipients is related to high caregiver burden”.

Overall, multiple factors of a caregiving situation can be predictors of increased caregiver burden. Being an older female spouse, having a poor relationship with the patient before diagnosis, and decreased health of the patient are typically factors leading to the negative mental, physical, and emotional wellbeing of the caregiver. However, all caregiving situations differ, so these factors may not be correct in every instance.

Caregiving can often be a 24-hour duty that requires the full attention of the caregiver. With little time for themselves, caregivers can have a decline in physical health due to stress, burnout, and lack of self-care. Caregivers can also face financial insecurity because of their loaded schedules. Financial insecurity can lead to reduced life satisfaction and additional stress.

Providing care for a dementia patient is physically demanding. Care receivers constantly need assistance with everyday activities, so caregivers spend plenty of their time and energy while helping. Caregiving leaves little time for relaxation and restoration of the body. This suspension of self-care leads to health complications. In addition to lack of self-care, caregivers also face an abundance of stress. While some stress can be healthy for individuals, the chronic stress of caregiving is not. Juheui Son states in an article published in the Journal of Aging Health, “Prolonged exposure to the chronic stress of caregiving can lead to changes in sympathetic arousal and cardiovascular reactivity, predisposing caregivers to hypertension and cardiovascular disease. Given these health changes, it is not surprising that caregivers have a greater risk of mortality than noncaregivers”.

As a family caregiver, it may be hard to give unpaid, round-the-clock care, and have a stable career simultaneously. Finding a high-income job that accommodates to the hours of the caregiver is nearly impossible. For many caregivers, financial instability is associated with their caregiving roles. Ms.Thommes, a caregiver in Mililani, Hawaii, reports, “‘A lot of women, especially single women, need to work...But at the same time they have all these responsibilities, to pay the bills, and to caregive. How can they possibly do all of that the same time?’'. Ms. Thommes and a myriad of other caregivers feel elevated pressure when it comes to caregiving and working concurrently. Additionally, not having a high income (over $75,000) can pose risks to the welfare of the caregiver. In his research, Daniel Kahneman concludes that “low income is associated both with low life evaluation and low emotional well-being”. In the end, making time for a job, finding the right job, and earning a high income is impractical for an around-the-clock caregiver.

The continuous roles of caregivers are not conducive to their physical and financial wellbeing. The legislatures in Hawaii acknowledged the burdens that family caregivers face and ratified the Kupuna Caregivers Act in 2017. The act pays caregivers who work more than 30 hours a week up to $70 a day for helping an elderly family member. Although these caregivers will not be earning a high income, the additional funds will take some burden off of their shoulders.

Debatably, the most prominent kind of burden that caregivers face is a mental burden. Caregiver roles require somebody who is resilient, patient, attentive, and quick-witted. They are frequently put in situations that are frustrating, troubling, or even violent. It is important for caregivers to problem solve quickly, but even the best caregivers can feel pressure from their roles. Not all caregiving situations have a negative effect on the caregiver’s wellbeing. Caregiving can bring delight and positivity to some caregivers.

One of the downsides of caring for a dementia patient is that there is no healing aspect of dementia. The disease progresses and only gets more advanced. The fact that dementia is a terminal illness could cause family caregivers to feel remorseful when the patient’s health declines. Unfortunately, “Dementia caregiving has been associated with increased levels of depression, anxiety, and anger”. The effects that dementia has on the care receiver, especially in later stages, can put caregivers in challenging positions that degrade their mental health.