Depression and Spiritual Predictors of Wellness in Family Caregivers of Individuals with Alzheimer’s Disease

This study investigated the role of spirituality in family caregivers of individuals with Alzheimer’s disease as a means of lessening the development of depressive symptomology arising through caregiver burden. For this study, there were 41 caregiver participants taking care of a family member with Alzheimer’s disease. The population was obtained through various divisions of the Alzheimer’s Association of the United States of America. Participants completed a basic demographic survey, the General Well-Being Schedule, the Patient Health Questionnaire9, and the Spiritual Experience Index. Two groups, religious and non-religious, had their mental health functioning compared. Results from the 41 surveys suggest that spiritual family caregivers experience similar levels of mental health distress caring for their ill loved one as non-spiritual family members. Therefore, spiritual practice does not appear to moderate negative mental health functioning in family caregivers of Alzheimer’s disease. Running head: SPIRITUALITY OF FAMILY CAREGIVERS iv Table of Contents Approval Page . ii Abstract . iii List of Tables . v Chapter 1 Introduction . 1 Alzheimer’s Disease and Caregiving . 1 Caregiver Quality of Life . 3 Depression in Caregivers . 4 Coping Strategies . 6 The Role of Spirituality . 7 Spirituality and Depression . 11 Chapter 2 Method . 13 Participants . 13 Instruments . 13 Procedures . 16 Design . 17 Chapter 3 Results . 18 Chapter 4 Discussion . 22 References . 28 Appendix A: Invitation to Participate and Consent Form . 32 Appendix B: Copies of Assessments Used . 34 Appendix C: Caregiver Demographics . 46 Appendix D: Curriculum Vitae . 52 Running head: SPIRITUALITY OF FAMILY CAREGIVERS v List of Tables Table 1 Demographics . 14 Table 2 Caregiving Descriptives . 14 Table 3 Non-Religious and Religious Groups . 18 Table 4 Correlations . 19 Table 5 SEI Scores from the Religious Group . 20 Running head: SPIRITUALITY OF FAMILY CAREGIVERS 1 Chapter 1 Introduction Research has shown that the gradual loss of cognitive function characterized as Alzheimer’s disease can lead to increased levels of depression for the patient with the illness (Sanders & Adams, 2005). In addition, if the person with Alzheimer’s disease is cared for by a family member, that family member is also at-risk for increased levels of depression. Coping strategies for the family caregiver may help him or her reduce levels of depression. One such strategy could be spiritual practice, as spirituality can be a positive and supporting factor in a person’s life (Gwyther, 2006; Smith & Harkness, 2002). As a source of strength during troubled times, spiritual practice may work to reduce depression among family members caring for a person with Alzheimer’s disease. Alzheimer’s Disease and Caregiving When people are diagnosed with terminal illness, family members are faced with the decision of how to care for their loved one. For some patients, care may be required for a short period of time, but for others care may be needed for years. Regarding types of care, the options are inpatient care, informal care (implying family members), or a combination of both. Family members who choose to care for their loved ones do so for a variety of reasons. Some family members choose to care out of obligation, others do so to preserve the relationship, some families have altruistic reasons, and still others may provide care out of implied rule of reciprocity (Kolmer, Tellings, Gelissen, Garretsen, & Bongers, 2008). Kolmer et al. found that Running head: SPIRITUALITY OF FAMILY CAREGIVERS 2 most families care for their ill loved one instead of choosing inpatient care out of the desire to preserve the relationship (Kolmer et al., 2008). It is estimated that 70-80% of Americans and Europeans who require long-term care receive such care from relatives and friends (Tang, Li & Liao, 2007). While charitable reasons can be a primary motivator in family members choosing to care for their ill loved one, the financial implications of caring for a person with Alzheimer’s disease can be another driving force. According to the Alzheimer’s Association, in 2012 family caregivers (15.4 million total), provided more than 17.5 billion hours of unpaid care. That roughly equates to $216 billion of unpaid hours (Alzheimer’s Association, 2013). This figure exhibits the financial savings achieved by families choosing to care for their ill loved one as opposed to utilizing inpatient care, but the cost certainly comes in the hours of care provided. When family members take a part-time or full-time role in caring for a loved one with Alzheimer’s disease they can be referred to as family caregivers. For the purpose of this study, family caregivers can be any person considered relationally close to the patient such as blood and/or legal relatives and close friends. In some cases, a family caregiver is not professionally trained to treat and care for their loved one with Alzheimer’s disease (Family Caregiving Alliance, 2013). In addition to lack of training, family caregivers may not have sufficient resources to protect their well-being from the negative impact of increasingly dire life circumstances enveloping people with Alzheimer’s disease (DeMond, 2010). Caregiver Quality of Life During the course of their caregiving, family caregivers may experience negative physical and emotional symptoms called caregiver distress (Yilmaz, Turan, & Gundogar, 2009). Running head: SPIRITUALITY OF FAMILY CAREGIVERS 3 Caregiver distress affects the level of enrichment a person has in his or her existence, often referred to as quality of life. Quality of life pertains to both the patient with terminal illness and the family members caring for him or her (Arlt et al., 2008). Factors contributing to a positive quality of life include serenity, general well-being, and good financial status. Negative factors in quality of life are future worries, progression of illness, and stress. These negative factors can be predictably prevalent for family caregivers of patients with terminal illness, and a need for improved quality of life may arise. Good patient health, independence from the patient, and assistance are factors which can improve a caregiver’s quality of life (Vellone, Piras, Talucci, & Cohen, 2008). If levels of distress continue to override positive quality of life factors, family members run the risk of experiencing caregiver burnout (Yilmaz et al., 2009). Burnout occurs over the course of time, and the amount of time for a caregiver to experience burnout depends on the resiliency of each individual caregiver and the ratio of negative to positive quality of life factors (Vellone et al., 2008). Often a contributor to caregiver distress and burnout is the need to balance significant responsibilities outside of providing care for an ill loved one (Yu-Nu, Yea-Ing, MinChi, & Pei-Shan, 2011). Balancing a career, marriage and children in addition to providing care during the week to an ill loved one places high demands on personal time (Yu-Nu et al., 2011). When the demands on a person become too high, distress b