Introduction
Alzheimer’s disease (AD) is the most prevalent form of dementia, with over ten million cases per year, equivalent to a case per 3.2 seconds (Alzheimer’s Disease International, 2023). While much attention has been given to AD patients regarding their quality of life, little attention is afforded to their caregivers. Understanding the effect of AD caregiving is important for possible interventions to improve the quality of life for caregivers as well. This paper tests the hypothesis that caregivers of Alzheimer's and dementia patients often experience significant impacts on their mental, physical, emotional, and social well-being. Caring for individuals with these conditions can be challenging and demanding, affecting caregivers' lives.
Methods
Aguglia et al. (2004) conducted a study on 236 Italian Caregivers diagnosed with AD to determine what influenced the caregiving burden and associated challenges. The subjects were recruited at the Alzheimer Evaluation unit in Trieste, Italy, in 2002. The caregivers completed two questionnaires: the Brief Symptom Inventory, which assesses depression and anxiety, and the Caregiver Burden Inventory, which assesses and quantifies workload. Tests considered in the study included mini-mental state examination and instrumental activities of daily living.
Sansoni et al. (2013) aimed to determine the caregiving burden and how it was affected by subfactors. They opted for a systematic literature review where the databases leveraged were PubMed, Google Scholar, Science Direct, and CINAHL. Articles in Italian or English, published between 1999 and 2011 and mentioned Alzheimer’s disease, burden, stressors, and institutionalization were included. Others that did not include the names of caregivers were excluded. After retrieval and screening, 17 studies were included in the review.
Pratt et al. (1985) aimed to determine the burden experienced by caregivers and the effective coping mechanisms. They used a sample of 325 people caring for patients with Alzheimer’s disease. A survey methodology was adopted where two published documents and one instrument designed by the investigator were issued. The questionnaires include the caregiver burden scale addressed above, the family crisis-oriented personal evaluation scales measuring coping skills, and the third tool took descriptive data on the nature of caregiving. There were 240 final respondents.
Results and Discussion
Aguglia et al. (2004) found that the caregivers were more likely to be female, married, and housewives. There were statistically significant differences in the physical strain recorded, with females reporting higher levels of physical strain. Caregivers are often lowly educated; if so, they are more likely to be affected by anxiety and depression than those who work outside their homes and are more educated. Higher cognitive impairment was correlated to higher anxiety and depression. Finally, the patients' low daily activity rates correlated to high caregiver burden.
Sansoni et al. (2013) found that the caregiver burden is influenced by patients’ behavioral and cognitive status, the hours involved in caring for the patient, their gender, the presence of resources, stress, relationship, social isolation, and the caregiver’s characteristics. Severe AD symptoms predict more stress, especially when the caregiver is a close relative. High numbers of hours spent caring for the patient were correlated to an increase in stress, depression, and anxiety.
Pratt et al. (1985) did not find significant differences in burden scores across gender, income level, age, or education level. The caregiver burden was significantly influenced by the caregiver’s state of health, where those with poor health reported a higher burden. Most of the caregivers believed that caregiving had negatively affected their health status. Confidence in problem-solving, reframing, spiritual support, and passivity mediated the caregiver burden. However, friends and community use did not mediate the relationship.
The three agree with the hypothesis that Caregivers of Alzheimer's and dementia patients often experience significant impacts on their mental, physical, emotional, and social well-being. The common theme among all studies is that caring for a patient with AD is a significant burden that increases as the patient’s health deteriorates (Aguglia et al., 2004; Pratt et al., 1985; Sansoni et al., 2013). Indeed, cognitive deterioration means there is a need for the caregiver to perform more tasks for the patients. All the studies also agree that the caregiver's health is significantly affected by caregiving, where Pratt et al. (1985) report a decline in the health of most caregivers but do not specify in what aspects.
Sansoni et al. (2013) and Aguglia et al. (2004) report increased anxiety, depression, and general stress for caregivers. The effects are even more pronounced when the caregiver is closely related to the patient and when they stay at home or have low education. Witnessing the decline of a loved one's cognitive abilities and personality changes can be emotionally distressing for caregivers. They may feel a sense of grief, loss, and helplessness as they watch their loved one's condition deteriorate. Caregivers may also experience guilt, frustration, and anger, especially when faced with challenging behaviors or communication difficulties. Being spiritual, confidence in decision-making, and passivity help mitigate these effects.
Limitations and Future Suggestions
A major limitation in these studies is the lack of a control group to measure the changes against. In addition, Pratt et al. (1985) used a sample seeking guidance, meaning it was biased because it is likely they sought guidance because they were suffering. Future studies on the topic should include control and focus on testing how spirituality and passivity, among other factors, can be employed to reduce these caregivers' mental, physical, and social strain.
Conclusion
In conclusion, caring for individuals with AD can be challenging and demanding, affecting caregivers' lives. This is especially true when the patient is a close relative, has more cognitive deterioration, and the caregiver stays around them for long. It is, therefore, important for caregivers to prioritize self-care, seek support, and consider accessing professional help when needed.
References
Aguglia, E., Onor, M. L., Trevisiol, M., Negro, C., Saina, M., & Maso, E. (2004). Stress in the caregivers of Alzheimer’s patients: An experimental investigation in ltaly. American Journal of Alzheimers Disease and Other Dementias, 19(4), 248–252. https://doi.org/10.1177/153331750401900403
Alzheimer’s Disease International. (2023). ADI - Dementia statistics. ADI - Dementia Statistics. https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/#:~:text=There%20are%20over%2010%20million,new%20case%20every%203.2%20seconds.
Pratt, C. C., Schmall, V. L., Wright, S. M., & Cleland, M. (1985). Burden and Coping Strategies of Caregivers to Alzheimer’s Patients. Family Relations, 34(1), 27. https://doi.org/10.2307/583754
Sansoni, J., Anderson, K. H., Varona, L. M., & Varela, G. (2013). Caregivers of Alzheimer’s patients and factors influencing institutionalization of loved ones: some considerations on existing literature. Annali Di Igiene : Medicina Preventiva E Di Comunità, 25(3), 235–246. https://doi.org/10.7416/ai.2013.1926