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¶ … United States, an estimated 5.2 million people suffer from Alzheimer's disease and the number is expected to increase dramatically over the next 30 years (reviewed by Lewis, 2014). Dementia care has therefore become a significant burden on the healthcare system and will only worsen over time. The costs of dementia care would be much higher if not for the contributions made by family caregivers, contributions which reduce the cost of care by almost half, but the psychological and physical toll on caregivers has resulted in additional medical expenses, reaching an estimated $9.1 billion for 2012. Caregiver support is therefore essential to lowering the overall cost of dementia care, but a number of barriers exist which prevent optimal health outcomes for both patients and caregivers, including those interfering with timely referrals to hospice care. Among the different barriers, those associated with physicians should be among the easiest to change.
Although a significant body of research exists which has examined physician-associated barriers to hospice referrals and end-of-life (EOL) care in general, no qualitative studies have been performed which examined barriers from the perspective of informal caregivers. In other words, it was unclear whether these barriers mattered to informal caregivers and dementia patients.
Study Purpose...
Please share any thoughts, feelings, and specific experiences" (p. 1224). As the author of this study states, aside from this question, all other questions were designed to elaborate on this main topic. Lewis (2014) was therefore interested in understanding the experiences of informal caregivers as they cared for a loved one suffering from end-stage dementia, and who tried to obtain needed services from their physicians.
Explicit research questions, other than the one stated above, were not formulated by Lewis (2014) because the study design was phenomenological; however, five main themes emerged which narrowed and defined the issues the author felt were important. These themes were: "(a) a period of loss and disappointment building up to the end of life; (b) a change in mentality in which the caregiver turns away from a curative mindset and begins to opt out of life-prolonging treatments; (c) the feeling that no one is there when the caregiver begins to seek palliative care options; (d) the feeling that hospice, when available, is too little, too late; and (e) caregivers' sense that…
References
Gelling, L. (2011). What is the difference between grounded theory and phenomenology? Nursing Times, 107(4), 25.
Lewis, L.F. (2014). Caregivers' experiences seeking hospice care for loved ones with dementia. Qualitative Health Research, 24(9), 1221-31.
Ullman, S.E. (2005). Interviewing clinicians and advocates who work with sexual assault survivors. Violence Against Women, 11(9), 1113-39.
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