Introduction
In recent years, the shift from hospital-based care to home care has intensified, leading to greater involvement of families in caring for patients with chronic diseases, including Alzheimer's disease. This responsibility presents numerous challenges for caregivers, thereby reducing the quality of care provided to patients. Therefore, the health of caregivers of elderly individuals with the Alzheimer's diseases demands serious attention from healthcare service providers. Identifying the challenges faced by caregivers is crucial for effective planning and interventions to address them. Additionally, understanding the factors influencing caregivers can have significant human and economic outcomes. Accordingly, this study was conducted in 2022 to explore the caregiving challenges experienced by caregivers of elderly individuals with Alzheimer's disease.
Methods
A narrative review was conducted to identify the caregiving challenges faced by caregivers of elderly individuals with the Alzheimer's disease. In the first step, the research question was formulated based on the study objective and a review of similar studies; accordingly, “what are the caregiving challenges faced by caregivers of elderly individuals with the Alzheimer's disease?”
In the second step, a systematic search was conducted using the following English keywords: “Alzheimer's disease,” “Alzheimer dementia,” “caregiver,” “carer,” “family caregivers,” “informal caregiver,” and “elderly.” Meanwhile, the Persian equivalent of the following keywords were used: “caregiver,” “family,” “elderly,” and “Alzheimer.” Articles were searched in databases including PubMed, Embase, ProQuest, scientific information database (SID), and Irandoc from 2017 to 2022. The search resulted in 4594 articles from the given databases.
In the third step, 350 duplicate articles were excluded, leaving 4244 articles. Titles and abstracts were screened by the first and second authors based on inclusion criteria, which included original research articles (quantitative and qualitative), studies involving caregivers, articles in English or Persian, and articles focused solely on challenges faced by caregivers of Alzheimer’s patients. Meanwhile, the exclusion criteria included lack of access to full-text articles, letters to the editor, and studies involving caregivers of patients with other types of dementia. The quality of the studies was assessed using Gifford’s criteria. Accordingly, 8 articles were excluded due to lack of full-text access or low-quality evaluation based on Gifford’s criteria, leaving 27 articles for final analysis. Any disagreements were discussed within the research team.
Results
The findings categorized the challenges faced by caregivers of elderly individuals with Alzheimer's disease into two main categories and nine subcategories:
Individual challenges
These refer to all factors related to the caregiver that lead to difficulties in their life, including the following items: Psychological challenges, information deficiency challenges, physical challenges, workload challenges, and occupational challenges. Psychological challenges refer to stress, anxiety, depression, restlessness, delusions, apathy, irritability, abnormal motor behaviors, aggression, paranoid thoughts, suicidal ideation, euthanasia-related thoughts, distress, perceived stigma, fear of stigma, and worry about the future. Information deficiency challenges refer to the lack of knowledge about the disease, psychological and physical care, personal hygiene of the patient, effective caregiving techniques, better communication with the patient, and caregiver self-care. Physical challenges refer to issues such as high blood pressure, increased cortisol and cholesterol levels, and reduced brain-derived neurotrophic factor levels. Workload challenges refer to full-time caregiving responsibilities interfering with occupational duties. And, occupational challenges refer to sleep disturbances, absenteeism, tardiness, and reduced working hours.
Family challenges
Family challenges encompass all factors affecting the family, including lack of emotional support, economic challenges, marital challenges and social relationship disruptions. Lack of emotional support refer to full-time involvement of one family member in caregiving and psychological issues leading to a need for emotional support. Economic challenges refer to limited financial resources, increased economic burden due to medical costs, reduced working hours, and lower income. Marital challenges refer to changes in family dynamics and the heavy involvement of one family member in caregiving resulting in family conflicts and marital challenges. Social relationship disruptions refer to fear of judgment by others, lack of time, and resulting social isolation or strained social relationships. Meanwhile, reduced quality of life is another significant challenge for caregivers, often arising as a cumulative outcome of these issues.
Conclusion
According to the reviewed studies, caregivers of elderly individuals with Alzheimer's disease face numerous challenges, which can be categorized into individual and family challenges. Based on these findings, caregiver empowerment programs can be designed, incorporating caregiver-centric interventions, such as counseling, support for reducing depression and anxiety [
1], coping strategies [
2], enhancing self-efficacy [
3], and supportive strategies. Training caregivers on managing stigma, its impact on their caregiving role, and interventions like cognitive-behavioral therapy, mindfulness, and resilience promotion [
4] are essential. Nurses, occupying a pivotal position, can play a crucial role in facilitating caregivers’ smooth transition into caregiving roles and act as advocates for caregiver support.
Ethical Considerations
Compliance with ethical guidelines
Due to the nature of the present study, there was no need to obtain permission from the ethics committee, but in accordance with the 31 codes of ethics in research, matters related to this study were observed.
Funding
This research did not receive any grant from funding agencies in the public, commercial, or non-profit sectors.
Authors' contributions
All authors were equally contributed in preparing this article.
Conflicts of interest
The authors declared no conflict of interest.
Acknowledgements
The authors extend their gratitude to the esteemed faculty members of the Nursing Department at the University of Social Welfare and Rehabilitation Sciences, Tehran, Iran, for their guidance and contributions to the enrichment of this work.
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