Alzheimer's Disease Fidelis Mgbeahuru Psy 635 Roxanne Behari

Alzheimers Diseasefidelis Mgbeahurupsy 635roxanne Beharie072520181a

Alzheimer’s disease is an irreversible degenerative brain disorder characterized by progressive cognitive decline and memory loss, primarily affecting older adults. It significantly impacts patients' quality of life and imposes considerable emotional and physical burdens on caregivers. As the disease progresses, patients may experience a loss of identity, which presents unique challenges for both the individuals affected and those caring for them. To understand and address these challenges, it is essential to examine the pathophysiology, impact on caregivers, existing research, and appropriate methods to explore this phenomenon ethically and effectively.

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Alzheimer’s disease stands as a formidable neurodegenerative disorder that insidiously erodes the cognitive functions and sense of self of afflicted individuals. The disease’s hallmark features include memory impairment, disorientation, language difficulties, and behavioral changes, ultimately leading to the total loss of independence. It predominantly affects aging populations, with the World Health Organization estimating that approximately 55 million people worldwide suffer from dementia, with Alzheimer’s constituting about 60-70% of cases (WHO, 2020). As the disease advances, patients often experience a profound loss of identity, which has profound implications not only for their personal well-being but also for family caregivers and healthcare providers.

The pathophysiology of Alzheimer’s involves the accumulation of amyloid-beta plaques and neurofibrillary tangles within the brain, leading to neuronal loss and synaptic dysfunction (DeTure & Dickson, 2019). This biological deterioration manifests clinically as progressive cognitive decline, starting with subtle memory lapses and evolving into severe personality and behavioral changes. The initial stages often involve insidious impairment of higher intellectual functions accompanied by mood swings, agitation, or apathy. According to Alzate (2018), these early signs can be overlooked or misinterpreted, delaying diagnosis and intervention. As the disease advances, deficits in executive functioning and language become prominent, severely impairing the individual’s ability to perform daily activities and affecting their sense of selfhood.

The impact of Alzheimer’s extends beyond the patient, especially on their family members who assume the role of caregivers. The burden encompasses emotional distress, physical exhaustion, financial strain, and social isolation. A critical issue faced by caregivers is managing the loss of the patient's sense of identity. Traditionally, caregiving strategies have focused on managing physical health and behavioral symptoms, but less attention has been paid to the patient's ongoing cognitive and personal identity. Orona (2002) emphasized the importance of recognizing the emotional and psychological dimensions of identity loss, highlighting that caregivers often struggle with feelings of grief as they witness the gradual erosion of their loved one's personality.

Research literature underscores the significance of understanding identity loss in Alzheimer’s through various studies. Orona’s (2002) investigation emphasized the importance of family’s role in maintaining the patient’s sense of self amidst cognitive decline. Similarly, Kontos (2004) addressed the importance of the embodied selfhood concept, questioning how individuals retain agency and personal identity amid neurodegeneration. Negative attitudes and misconceptions about people with Alzheimer’s, especially in institutional settings, further complicate the caregiving experience (Kontos, 2004). Such social perceptions often lead to stigmatization and diminished empathy, which can hinder the delivery of person-centered care (Hughes et al., 2017).

To explore these complex issues, qualitative research approaches are most suitable. Grounded theory, in particular, offers a robust framework for understanding the lived experiences of family members and caregivers managing identity loss. Conducting interviews allows researchers to capture personal stories, emotional responses, and coping strategies, providing rich data that quantitative methods may overlook. Surveys and questionnaires can complement interviews by offering broader insights across diverse populations (Hesse-Biber, 2010). Through such methods, researchers can generate theoretical models that illuminate how identity loss impacts caregiving dynamics and suggest practical interventions.

Ethical considerations are paramount when researching sensitive topics involving dementia patients and their families. Informed consent must be obtained from caregivers, ensuring they understand the purpose of the research, its scope, and their right to withdraw at any time without penalty. Confidentiality and privacy should be rigorously maintained, with secure data storage and anonymized reporting (American Psychological Association, 2010). Researchers must also recognize the emotional vulnerability of participants and provide appropriate support or referrals if discussions evoke distress. Transparency about the use of data and ensuring voluntary participation address core ethical principles, fostering trust and integrity in the research process (British Psychological Society, 2018).

In conclusion, the gradual loss of identity among Alzheimer’s patients poses a significant challenge for families, healthcare providers, and policymakers. Recognizing the profound emotional and psychological impacts, especially on caregivers, underscores the necessity of adopting person-centered approaches that maintain dignity and respect for individual identity. Qualitative research methods such as grounded theory facilitate a deeper understanding of these experiences, aiding in the development of supportive interventions. Ethical considerations are central to conducting meaningful and respectful research, ensuring the well-being of all participants involved. Ultimately, the findings from such research can inform more compassionate caregiving strategies, policy reforms, and community support systems aimed at alleviating the burdens associated with Alzheimer’s disease.

References

  • American Psychological Association. (2010). Ethical principles of psychologists and code of conduct: Including 2010 amendments. https://www.apa.org/ethics/code
  • DeTure, M. A., & Dickson, D. W. (2019). The neuropathological diagnosis of Alzheimer’s disease. Molecular Neurodegeneration, 14(1), 1-18.
  • Hesse-Biber, S. N. (2010). Mixed methods research: Merging theory with practice. Guilford Press.
  • Hughes, J., Carpenter, B., & Dunne, C. (2017). Person-centered care in Alzheimer’s disease. Journal of Nursing Scholarship, 49(2), 123-130.
  • Kontos, P. (2004). Embodied selfhood: Redefining agency in Alzheimer’s disease. In E. Tulle (Ed.), Old age and agency (pp. 105–121). Nova Science Publishers.
  • Orona, C. (2002). Temporality and identity loss due to Alzheimer’s disease. In A. M. Huberman & M. B. Miles (Eds.), The qualitative researcher's companion (pp. 281-297). SAGE Publications.
  • World Health Organization. (2020). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia
  • Alzate, L. (2018). Alzheimer's disease: Nutritional perspectives. Journal of the Nutrition Council, 41(2), 28-35.
  • British Psychological Society. (2018). Code of Ethics and Conduct. https://www.bps.org.uk/news-and-policy/bps-code-ethics-and-conduct

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