Informal caregivers' experiences seeking hospice care for dementia patients

¶ … 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 and Research Question

The purpose of the study can be inferred from the first question Lewis (2014) asked the study participants: "Please describe for me your experiences seeking formal end-of-life care, and in particular hospice care, for your loved one. 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 death is a relief and a blessing" (p. 1224).

Given that the main question asked of participants and the themes that emerged, Lewis (2014) was headed in the right direction, if the goal was to understand the experiences of informal caregivers caring for end-stage dementia patients and seeking hospice services. Given that the bulk of the research regarding this topic has been limited to survey data, it was appropriate to conduct a phenomenological study. As Ullman (2005) discusses, the information gained through qualitative research is essential to helping physicians better understand the perspective of informal caregivers as they navigate EOL care options. Who knows, maybe this information could motivate physicians to improve timely access to hospice services.

Conceptual/Theoretical Framework

Lewis (2014) chose a phenomenological study design based on the work of Edmond Husserl. The main characteristics of Husserl's phenomenology is to return to a state of knowing that existed before anything had been learned about the phenomenon of interest. Working towards this state of "pre-givenness" requires the researcher to engage in self-reflection, thereby reducing the impact of any preconceived notions or knowledge on data interpretation. Lewis (2014) described in detail the self-reflective process undertaken.

Compared to grounded theory, which culls data from a number of sources (Gelling, 2011), Lewis (2014) confined her data sources to informal caregivers who had experienced the loss of a loved one suffering from advanced dementia, and who had tried to access hospice services. Since a grounded study design was not utilized, a framework or diagram was not developed. Instead, Lewis (2014) identified five main themes from the data as discussed above.