BEHS 380 RESEARCH PROJECT
BEHS 380 RESEARCH PROJECT
Research Project
Death and dying is a normal rite of passage that marks the termination of human life. However, unlike other aspects of life, discussions relating to death are rather difficult and uncomfortable not only for the patient but also for their families and healthcare professionals (Oates et al., 2022). Discussions around the terminal phase of life enable patients to express their preferences and wishes in advance to guide future decisions on matters such as end-of-life care interventions (Bergenholtz et al., 2019). This leads to well-coordinated planning and death preparedness with resultant improvement in the quality of end-of-life care that fosters patient autonomy and dignity. This research project aims to explore death preparedness among caregivers of patients with dementia.
Description of the Topic of Interest
My specific topic of interest relating to end-of-life issues is death preparedness among caregivers of individuals with Dementia. Dementia is a neurodegenerative disorder of multifactorial causation that is characterized by functional decline, cognitive deterioration, altered behavior, and quality of life (Li et al., 2020). The loss of independence and performance of daily living activities necessitate care and support from caregivers. The caregiving role needs adequate practical and emotional preparedness in tasks such as providing physical care, emotional, social, and existential support, and coping with caregiving-related stress (Alvariza et al., 2020). In addition, caregivers ought to be prepared for impending death, especially in the context of increasing disease severity and progression. Death preparedness is a cognitive awareness and emotional acceptance of the impending loss of a loved one (Wen et al., 2022). Feelings of preparedness are usually associated with positive outcomes that are not only beneficial to the well-being of the caregiver but also to the quality of the patient’s end-of-life care.
Death preparedness for caregivers of patients with dementia involves various considerations. These include identification of symptoms of deterioration in dementia and understanding their implications on death, acknowledgment of emotions and grief responses, knowing the necessary support tools in end-of-life care, advanced organization of affairs, acceptance of the imminent demise, and strengthening relationship bonds with patient and family (Duperos et al., 2019). This is fostered by open and meaningful discussions around death and dying. The outcomes include adequate advanced care planning, lessened grief, and bereavement, and adequate adjustment to loss with reduced risk of prolonged grief (Alvariza et al., 2022). It is therefore the responsibility of healthcare professionals to initiate transparent, realistic, and sensitive end-of-life discussions, and provide adequate information regarding the patient’s situation, and necessary support (Sutherland et al., 2019). This project intends to address factors that may facilitate caregiver death preparedness, potential benefits of death preparedness, and strategies that foster preparedness.
Academic Discipline
Psychology will set the context for understanding my topic of interest. The discipline of psychology deals with cognitive processes and behavior as an influence of social forces and interactions (Johnson et al., 2018). Psychology offers insights into the health effects of factors such as environment, culture, socioeconomic status, patient-provider partnerships, and biopsychosocial factors (Johnson et al., 2018). Psychology is integral to understanding preparedness for death since death is a social construct with potential influence on the bereaved behavior and cognitive response. Health psychology will also offer insights into psychotherapeutic interventions relevant to end-of-life issues to address any death-related stress and maladaptive coping.
Resource from the Course
The Handbook of Death and Dying by Bryant is very resourceful material for my research project. Particular attention will be paid to
the .chapters on death awareness and adjustment across the lifespan, death education, dealing with death, coming to terms with the death and dying, and caregiving at the end of life will be integral to my project on death preparedness. This will provide adequate information on the roles of caregiving in end-of-life care of patients with dementia as well as strategies to cope with imminent death. Death education will inform awareness, adjustment, and preparedness for death.
Relevant Organization
The Dementia Association of America is a nonprofit charity organization relevant to my research project. This organization incorporates all causes of dementia in its aim to promote education, mobilize resources, and support dementia patients, their families, and caregivers (https://www.dementiasociety.org/). The education programs aim to enhance the quality of care and equip caregivers with the necessary skills and knowledge. Part of the issues addressed includes challenges in caregiving and strategies to cope with care-related stress and coping with impending loss.
Scholarly Sources
The research by Fisher et al., (2022) will be used to inform this research project. The research explored practical and emotional preparedness for end-of-life care and death among caregivers of individuals with all stages of dementia (Fisher et al., 2022). Preparedness was promoted by adequate engagement with the healthcare teams, timely discussions, and advanced planning on matters regarding end-of-life issues, social and emotional support, and disease severity (Fisher et al., 2022). Identified barriers to death preparedness included inadequate knowledge, reluctance in initiating end-of-life discussions, and absence of clear guidelines. These barriers may guide the implementation of strategies and policy implementation to promote death preparedness.
Another scholarly resource that has been used is a research study by wen et al., (2022). This research sought to establish the association between cognitive prognostic awareness and emotional preparedness for imminent death and the bereavement outcomes among bereaved patient caregivers (Wen et al., 2022). The findings from the study revealed that adequate death preparedness is associated with positive outcomes such as shortened uncomplicated grieving process, reduced risk of loss-related depression, and improved health-related quality of life (Wen et al., 2022). This emphasizes the need to foster emotional and cognitive preparedness to improve bereavement outcomes not only among caregivers of dementia patients but the general population as well. The adoption of psycho-educational interventions can effectively address this issue.
Reflection
Death and dying are a universal finality of every individual. Death preparedness is a concept that is rarely addressed in the clinical setting despite the encounter with many patients in the terminal phase of their lives. This is not only among patients with dementia and their caregivers but also across all patient populations. Dementia is particularly meaningful to me due to my interest in advocating for this patient population whose health needs are frequently not holistically met. This may be attributed to their loss of independence and functionality which necessitates reliance on caregivers and family. The burdens on these caregivers may be overwhelming and distressing in the event of imminent demise. It is therefore important to support these individuals emotionally, cognitively, and behaviorally so that they can adequately adjust to the loss of their patient. This may also give room to decision-making regarding complex issues such as physician-assisted suicide which may depict patient values and preferences.
Conclusion
Death and dying is a normal rite of passage whose discussion should be normalized. Conversations about end-of-life care shift not only occur within the clinical setting but throughout the life of every individual. Timely address of this issue allows for adequate death preparedness not only for the person facing imminent death but also for their families and caregivers. This requires support from the healthcare teams, open communication, and timely provision of information regarding the patient’s situation. Potential benefits include reduced burden of bereavement, proper coping mechanisms to loss, and improved quality of end-of-life care.
BEHS 380 RESEARCH PROJECT References
Alvariza, A., Häger-Tibell, L., Holm, M., Steineck, G., & Kreicbergs, U. (2020). Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at Home – Study Protocol for a web-based intervention. BMC Palliative Care, 19(1). https://doi.org/10.1186/s12904-020-0530-6
Bergenholtz, H., Timm, H. U., & Missel, M. (2019). Talking about end-of-life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliative Care, 18(1). https://doi.org/10.1186/s12904-019-0448-z
Bryant, C. D. (2003). Handbook of Death and Dying. SAGE. https://doi.org/10.4135/9781412914291
Durepos, P., Sussman, T., Ploeg, J., Akhtar-Danesh, N., Punia, H., & Kaasalainen, S. (2019). What Does Death Preparedness Mean for Family Caregivers of Persons With Dementia? The American journal of hospice & palliative care, 36(5), 436–446. https://doi.org/10.1177/1049909118814240
Fisher, E., Crawley, S., Sampson, E. L., Cooper, C., Jones, R., Anantapong, K., & Moore, K. (2022). Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia. Dementia, 21(3), 934–956. https://doi.org/10.1177/14713012211066674
Johnson, B. T., & Acabchuk, R. L. (2018). What are the keys to a longer, Happier Life? answers from five decades of Health Psychology Research. Social Science & Medicine, 196, 218–226. https://doi.org/10.1016/j.socscimed.2017.11.001
Li, M., Lyu, J., Zhang, Y., Gao, M., Li, R., Mao, P., Li, W., & Ma, X. (2020). Efficacy of Group Reminiscence Therapy on Cognition, Depression, Neuropsychiatric Symptoms, and Activities of Daily Living for Patients With Alzheimer’s Disease. Journal of Geriatric Psychiatry and Neurology, 33(5), 272–281. https://doi.org/10.1177/0891988719882099
Oates, J. R., & Maani, C. V. (2022). Death and Dying. In StatPearls. StatPearls Publishing.
Sutherland R. (2019). Dying Well-Informed: The Need for Better Clinical Education Surrounding Facilitating End-of-Life Conversations. The Yale journal of biology and medicine, 92(4), 757–764.
Wen, F. H., Chou, W. C., Hou, M. M., Su, P. J., Shen, W. C., Chen, J. S., Chang, W. C., Hsu, M. H., & Tang, S. T. (2022). Associations of death-preparedness states with bereavement outcomes for family caregivers of terminally ill cancer patients. Psycho-oncology, 31(3), 450–459. https://doi.org/10.1002/pon.5827