Priyamvada Mohta
Alzheimer’s disease is characterized by increasing cognitive deficits, like weakening memory, poor judgement and dementia resulting in an inability to take care of oneself. (Hooley et al., 2021) Individuals with Alzheimer’s require support from their families and close friends due to their inability to take care of themselves. The loss of one’s sense of self in Alzheimer’s, the lack of a cure and general knowledge about the disease and the increasing burden due to the worsening of cognitive impairments create an immense burden on care-givers, It is estimated that over 40% of individuals over the age of 85 have Alzheimer’s disease. (Hooley et al., 2021) The rate of Alzheimer’s in a population increases by almost double, every five years from the age of 40. (Hooley et al., 2021) This disease then creates a massive burden of caregiving in a population due to the debilitating cognitive impairments and the sheer number of patients suffering from the disease.
Individuals suffering from Alzheimer’s tend to lose their sense of self due to the loss of memories of past experiences, relationships and cognitive impairments that take away basic aspects of the individual’s personality. This loss of self in patients makes it difficult for caregivers to reconcile the image of and relationship they have with the individual they love and the ‘patient’ - the one they have to take care of. This disconnect makes care-giving feel like an obligation out of duty but to a person who has lost their sense of self and thus becomes a completely different individual for the care-giver. (Martinson et al., 1993)
Over time, patients regress to an almost child-like state where they can no longer take care of even their basic needs like remembering to eat and taking care of their personal hygiene. The lack of ability to care for oneself also gives rise to safety concerns, where the care-giver has to perpetually monitor the individual both inside the house and in external environments. Thus, the continued worsening of impairments, lead to a progressively increasing burden on care-givers, which can become overwhelming, especially when there seems to be no hopeful or positive end to the situation in sight. (Martinson et al., 1993)
Individuals suffering from Alzheimer’s eventually take on a vegetative state and their immunity to diseases declines. These individuals are increasingly susceptible to diseases like pneumonia and other respiratory diseases, resulting in death around 6 years after occurrence of the disease. (Hooley et al., 2021) The effort put in to provide care seems worthless owing to the seeming finality of death in Alzheimer’s. (Martinson et al., 1993) Care-giving then is often accompanied with feelings of guilt, as the death of the patient suffering from Alzheimer's, while terrifying and devastating, is also viewed with occasional feelings of relief as it would free the care-giver of the responsibilities and burden of caregiving. (Martinson et al., 1993)
Additionally, a gap in knowledge about the disease makes it almost impossible to predict the disease trajectory. (Martinson et al., 1993) Care-givers then have to constantly adjust and adapt to new situations and unique circumstances that they are not always equipped to deal with. This constant flux in terms of changing circumstances and needs of the patient can become overwhelming and frustrating for the care-giver owing to the unanticipated and sudden nature of changes in care demands.
The burden of care-giving leaves care-givers more susceptible to depression, social isolation, a lack of care for oneself and career interruptions. (Pratt et al., 1985) Care-giving often becomes obligatory as the burden of care usually falls upon the spouse or eldest daughter of the individual. (Pratt et al., 1985) Additionally, in some cases a lack of acknowledgement of the care given or perceptions of a lack of ‘filial concern’ (Gubrium, 1988) despite one’s efforts in providing care can lead to a sense of frustration and a feeling of being taken for granted. These factors contribute to feelings of resentment in care-givers which will further add to the mental burden of caregiving.
These feelings of resentment sometimes amplify and can lead to elder abuse. Research indicated that physical abuse was 2.25 times more likely in individuals living with Alzheimer’s or other related diseases than other older individuals. (Gainey, 2006) Care-seeking becomes risky and adds to the debilitating effects of the disease in such conditions, but often no viable alternative exists. Research has been conducted into identifying coping mechanisms for care-givers to help them manage the burden of the disease and mediate responses of frustration and resentment.
Social support has proven to have a mediating effect on the burden felt by care-givers but in many cases the care-giver becomes the sole family member responsible for care of the individual, and is alienated from their family as well. (Gubrium, 1988) In cases where support from family members or friends is absent, support groups for care-givers have also proven to be effective sources of not only emotional support but also knowledge about the disease, ways of dealing with the individuals suffering from the disease and possible circumstances one may have to deal with in the course of care-giving. (Gubrium, 1988) Such information would be beneficial to care-givers as it gives them some framework in which they can contextualize their experiences and also have a basic understanding of what they can expect as the disease progresses.
The existing research gap combined with the sheer number of cases of Alzheimer’s makes the disease a serious public health burden on the population at large. (Hooley et al., 2021) Ultimately, while research has been conducted into coping mechanisms for care-givers a long term solution is required to mediate the effect of the illness both on patients as well as care-givers. The absence of this will only lead caregivers more susceptible to mental health conditions which will not only add to the overall public health burden of mental disorders but also impede the normal and healthy functioning of caregivers.
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References
Gainey, R. R., & Payne, B. K. (2006). Caregiver Burden, Elder Abuse and Alzheimer’s Disease: Testing the Relationship. Journal of Health and Human Services Administration, 29(2), 245–259. http://www.jstor.org/stable/25790690
Gubrium, J. F. (1988). Family Responsibility and Caregiving in the Qualitative Analysis of the Alzheimer’s Disease Experience. Journal of Marriage and Family, 50(1), 197–207. https://doi.org/10.2307/352439
Hooley, J. M., Butcher, J. N., & Nock, M. K. (2021). Abnormal psychology: Global edition. Pearson Education Limited.
Martinson, I. M., Chesla, C., & Muwaswes, M. (1993). Caregiving Demands of Patients with Alzheimer’s Disease. Journal of Community Health Nursing, 10(4), 225–232. http://www.jstor.org/stable/3427142
Pratt, C. C., Schmall, V. L., Wright, S., & Cleland, M. (1985). Burden and coping strategies of caregivers to Alzheimer's patients. Family Relations, 34(1), 27. https://doi.org/10.2307/583754
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