Shared Decision-Making in Dementia A Review of Patient and Family Caregiver Involvement This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers. Read more
Predictors of Discrepancy Between Care Recipients With Mild-To-Moderate Dementia and Their Caregivers on Perceptions of the Care Recipients’ Quality of Life Purpose: The goal of this study was to explore predictors of discrepancy between reports of caregivers (CGs) and care recipients (CRs) with mild-to-moderate dementia about CRs’ quality of life (QOL). Design and Methods: This study was a secondary analysis of cross-sectional data drawn from a study of 200 care dyads of CRs with mild-to-moderate dementia and their primary family CGs. Paired t test, ordinary least squares multiple regression, and binary logistic regression were used for the analyses. Results: Caregivers rated CRs’ QOL significantly lower (worse) than CRs did. Ordinary least square regression results showed that greater incongruence in perceptions of CRs’ decision-making involvement (DMI) and higher level of CR impairment in activities of daily living were significantly related to higher absolute discrepancy between CG and CR about CRs’ QOL. In the logistic models, when the dyad had more DMI incongruence, or CG reported higher relationship strain, the CG was more likely to report a lower CR QOL than CR reported. Implications: Practitioners should consider incorporating CRs’ perspective when planning care instead of solely depending on CGs’ perspective. Also, practitioners should pay attention to any gap between perceptions of CGs and CRs, particularly with regard to CRs’ QOL. Read more
Negative Consequences of Family Caregiving for Veterans with PTSD and Dementia Recent research shows veterans with posttraumatic stress disorder (PTSD) are twice as likely as other veterans to develop dementia. However, no studies to date have examined the impact of co-existing PTSD and dementia on family caregivers, who provide the majority of care to these veterans. Using the Stress Process Model, the current investigation explored the similarities and differences in psychosocial, health, and service use outcomes among caregivers assisting veterans with PTSD and dementia compared with caregivers assisting veterans with dementia only. Caregivers of veterans with PTSD and dementia indicated that their relative exhibited more difficult behavior symptoms and used more community services. These caregivers also reported more difficulties understanding veterans’ memory problems and more physical strain. Together, results suggested caregivers of veterans with both PTSD and dementia were at greater risk of negative caregiving consequences. Implications and suggestions for future research are discussed. Read more
Measuring Cultural Justifications for Caregiving in African American and White Caregivers Objectives: This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative. Methods: CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience. Results: Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being). Discussion: Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed. Read more
Caregiving in America Supporting Families, Strengthening the Workforce Caregiving for older adults is an increasingly important issue in the United States. However, there are inherent infrastructural problems with both paid and family caregiving. This article provides the new President and Administration with a guide to eldercare, discusses the current status of caregiving, and offers recommendations for policy and cultural shifts to accommodate current cultural and societal changes in ways that are sustainable and healthy for the care receiver, and the paid or family caregiver. Read more
Caregiving Alzheimer’s Disease and Related Disorders Providing support to a relative with a neurocognitive disorder such as Alzheimer's disease or a related disorder (ADRD) can be both stressful and fulfilling. As the number of ADRD persons continues to grow, so will the number of family caregivers. Yet, the development of services and interventions for family caregivers has not kept pace with the growing needs of families. Despite evidence about the efficacy of several interventions, most caregivers receive little or no help. This entry focuses on the experience of providing care to a relative with ADRD, highlighting the physical and psychological consequences and the most recent interventions designed to ameliorate caregiving stress and enhance well‐being. Read more
A Nurse as a Member of a Multidisciplinary Team Preventing Elder Abuse Nursing involved to prevent elder abuse can be viewed as a health promotion intervention in that it addresses conditions that increase the risk of an unhealthy situation from deteriorating into abuse. Although the roles of nurses in addressing risks have been discussed throughout this book, this chapter focuses on keeping one step ahead of abuse by addressing conditions that have a high probability of developing into an abusive situation. These risks can be identified in both the older adult and the potential perpetrator by using the Benjamin Rose Institutes on Aging’s (BRIA) Risk of Abuse Tool to identify vulnerabilities associated with increased risk. Using information based on this tool, professionals can implement interventions in a timely manner with the intent of preventing abuse from occurring. The case example in this chapter describes ways in which a nurse and other members of a multidisciplinary team use the tool to identify and address risks to prevent a potentially abusive situation from escalating. For nurses, the case illustrates the importance of using nursing interventions not only to address usual health-related goals but also to achieve the additional goal of preventing elder abuse. In addition, it illustrates how a nurse functions within a multidisciplinary team to address multifaceted needs of both the older adult and the caregiver. Content of this chapter was developed by the BRIA in Cleveland, Ohio, for this book. In addition to engaging in applied research and public policy advocacy, BRIA provides a wide range of home and community-based services and programs, including home health care and affordable, independent housing geared toward promoting the safety, health, and independent functioning of older adults in their homes (BRIA, n.d.). The BRIA’s Risk of Abuse Tool and the Recognizing Abuse Tool described in Chapter 7 are examples of research-based tools that this agency developed for clinical practice. The fictitious case in this chapter illustrates how a multidisciplinary team, including a nurse, uses the Risk of Abuse Tool to develop interventions that are directed toward preventing abuse from occurring. The chapter first provides an overview of the Risk of Abuse Tool and then describes the application of this tool in a community-based clinical setting. The information is applicable to nurses in all settings because it illustrates how usual nursing interventions can be effective in reducing risks and preventing the occurrence of elder abuse. Nurses do not always know if their interventions are successful in preventing abuse from occurring in the long term; however, they can experience satisfaction from knowing that their interventions addressed immediate risks. In addition, interventions directed toward the prevention of abuse are likely to improve the health and functioning of the older adults, which are goals by themselves. Read more
Promoting Heart Health and Behavior Change in a Vulnerable Older Adult Population Background: Older minority populations in low socioeconomic classes are at high risk for cardiovascular disease, stroke, type 2 diabetes, and a host of other heart-related health conditions. Engaging in unhealthy behaviors such as poor diet, sedentary lifestyle, and poor use of health services is a major contributor to these health disparities. The Heart Health Program was developed to improve health outcomes by encouraging behavior change in a group of low-income older African Americans attending two urban senior centers. Using the Health Belief Model as a guiding framework, group sessions were conducted bi-weekly over the course of a three-month period. Session leaders engaged participants in educational activities and helped to develop individual ‘action steps’, or actionable goals for each participant to strive toward as a means of improving heart health. Methods: Twenty-five low-income, African American seniors participated in the Heart Health Program. A prepost design was used to evaluate the acceptability and feasibility of the program. Results: Participants reported high levels of satisfaction with the program as a whole and successful accomplishment of action steps. Results indicate limited long-term behavior change at the program’s conclusion. Conclusions: Lessons were learned about implementing this type of behavior change program in a senior center focused on: preparation, logistics, and relationships between the project team, senior center staff, and participants. Based on the initial experience of the Heart Health Program, plans are underway to refine the program and broaden its delivery to more older adults. Read more
Religiosity and Quality of Life A Dyadic Perspective of Individuals With Dementia and Their Caregivers Objectives: Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members’ religiosity on perceptions of IWDs’ quality of life (QoL). Neither of these issues has been extensively explored. Method: One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs’ everyday-care values and preferences, including religious preferences. Using an actor_partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs’ QoL. Results: After accounting for care-related stress, one’s own religiosity is not significantly related to IWDs’ or caregivers’ perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs’ QoL, caregivers’ religiosity is positively related to IWDs’ self-reports of QoL, and IWDs’ religiosity is negatively associated with caregivers’ perceptions of IWDs’ QoL. Conclusion: These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD’s QoL. It is important that caregivers understand IWDs’ values concerning religion as it may serve as a coping mechanism for dealing with dementia. Read more
