Functions of Personal Memory
Life Story Books: Reaching out to People with Dementia
Nostalgia and Childhood Play
Purpose in Life in the Face of Mortality
Aftermath Concerns: Communion in the Second Half of Life
Death and Dying
Dignity Therapy
Memories for the Dying Days
Leaving a Legacy
Wisdom and Late Life Spousal Loss
Frequency and Meaning of Events in the Life Story
Communion as a Mediator of Dignity Therapy Effectiveness
Dignity Therapy
Maintaining dignity at the end of life can be challenging for cancer patients. Dignity Therapy (DT) is an intervention that guides a patient through a structured life review process, resulting in a written Legacy Document that can be shared with the patient’s family members and friends. Though research has demonstrated that patients and families feel they benefit from DT, there has been a call for research to understand mechanisms that produce positive patient outcomes. The current NCI-funded study involves a cross-college collaboration aimed at addressing this issue in a sample of 204 older palliative care cancer outpatients. We will examine the empathic process involved in DT delivery and the extent of important psychosocial themes (purpose in life, meaning-making, and communion) in life story narratives produced by participants of DT. In terms of increasing the quality of care at end-of-life, this study will lead to a better understanding of when DT is most efficacious. It will guide honing of the intervention to improve patient care, with the goal of achieving meaningful psychosocial benefits for end-of-life cancer patients and their families.
Memories for the Dying Days
Given the aging of the Baby Boomers, nearly twenty million American older adults will die over the next 10 years. Most will leave behind a widowed spouse (National Center for Health Statistics, 2014). Death of a loved one, particularly a spouse, is rated as one of life’s most stressful normative events (Holmes & Rahe, 1967). Research on spousal loss has mainly focused on grief symptomology or maladjustment immediately following loss, neglecting examination of the potential for positive outcomes that may emerge over time. One component of the end of a loved one’s life that may greatly impact grief trajectories and long-term outcomes is the setting in which the loved one died (for example, at home, or in a hospital). The quality of the spouse’s dying days, including the quality of the environment in which they die, is crucially important for the dying person and those who live on (Heyland et al., 2006). This project investigates the relation of place of death for older adults to their spouses’ memories from the dying days and subsequent grief and outcome trajectories. The goal is to establish underlying rationales for the importance of place of death in end-of-life care models, and to determine which environment is most likely to foster positive memories from the dying days that can lead to lasting positive outcomes for those who are now widowed.
Purpose in Life in the Face of Mortality
Having purpose in life is linked to wellbeing in healthy individuals (Byron & Perrin, 2008) and may be particularly important when facing illness (Musich et al., 2018). Purpose can be self-oriented (e.g., career development) or other-oriented (e.g., social service). Other-oriented purpose is particularly linked to positive mental health (Martela & Ryan, 2016). Women, and those who report greater spirituality, show stronger other-oriented purpose (Simpson et al., 2008; Xi et al., 2022). This study goes beyond past research, investigating the interaction of gender and spirituality in older persons with serious cancer. Aims were: (1a) examine main and interaction effects of gender and spirituality on having self-oriented purpose, and (1b) having other-oriented purpose, and (2) elucidate purpose in people’s lives using narrative exemplars. Palliative care outpatients (N=203, Mage =65.78 years; Range=55-88, 66% women) completed demographics and life story interviews. Interview transcripts were reliably content-analyzed for self- and other-oriented purpose. Main effect regressions indicate men were more likely to have a self-oriented purpose than women, B=0.16, t(177)=1.98, p<0.05, whereas women’s purpose was more other-oriented than men’s, B=-0.3, t(177) =-2.12, p<0.05. Gender and spirituality did indeed interact to predict other-oriented purpose: simple slope analyses B=-0.09, p<0.01 revealed that greater spirituality related to greater other-oriented purpose for women, but not men. Exemplars of other-oriented purpose from the narratives were diverse (e.g., assisting children with disabilities, human rights advocacy). Older adults’ sense of purpose is a central theme structuring their life story, as they look back on the life lived.
Aftermath Concerns: Communion in the Second Half of Life
Communion (i.e., loving and caring for others) is a longstanding focus in narrative psychology (e.g., McAdams et al., 1996). The majority of research on communion has focused on how individuals refer to warm, close relationships in their current social network (e.g., Alea & Bluck, 2007; Diehl et al., 2004). However, an important communal consideration for individuals in the second half of the lifespan may be what will happen in the future lives of their loved ones after they themselves have died (Koch et al., 2024). In this chapter, we expand the standard conceptualization and operationalization of communion to propose a new aspect of communion: aftermath concerns. We leverage a national sample of adults (N = 203; M = 65.80 years; 66% women; 77.94% White; 48.53% college-educated) with serious or terminal cancer receiving outpatient palliative care who narrated their legacies as part of a broader life story intervention (Dignity Therapy; Chochinov et al., 2005) to establish aftermath concerns as a useful construct for narrative gerontology. This chapter is organized around three aims to introduce aftermath concerns. First, we satisfy criteria for validity and variability in establishing the feasibility of a coding system for aftermath concerns. Second, we present preliminary correlation and ANOVA results relating aftermath concerns to key personal characteristics (e.g., marital status, gender, race and ethnicity, religion) and health status (i.e., symptom severity, palliative performance). Finally, we use hierarchical regression to show that those who acknowledge their mortality (f2 = .08, p = .03) and those who are facing mortality earlier than expected (f2 = .11, p = .001) include more aftermath concerns in legacy narratives. Findings are integrated to discuss how aftermath concerns deepen our understanding of communion in the second half of the lifespan.
Leaving a Legacy
Reflecting on mortality may trigger concerns about leaving a legacy (Newton & Jones, 2015). Legacy often involves agency, a motive towards successful achievements for which one will be remembered (McAdams, et al., 1996). The present study focuses on whether communion (i.e., care and concern for others) is also important (McAdams, 2001). The threat of dying affects how legacies are framed (Hunter, 2007): we suggest that feeling one’s life is being “cut short” may promote greater communion. That is, legacies may be more likely to focus on love and caring for those one will leave behind. An individual-level construct, expected years of life lost (EYLL), was created to capture premature death. The study will examine: (1) the extent of communion themes in legacies, and (2) whether greater EYLL predicts greater communion. Older adults with cancer (N=120) narrated their legacy (Dignity Therapy; Chochinov, 2005) which was reliably content-analyzed for Communion. Preliminary analyses show Love/Friendship was the most common communion theme and individuals with more expected years to lose narrate greater communion in their legacies.
Life Story Books: Reaching out to People with Dementia
The sharp increase in dementia and age-related memory impairments worldwide has made reminiscence-based therapies (RT) attractive. Past research is mixed with little focus on self-functioning. The aims of this study were (i) to develop, and assess implementation of, an RT, Digital Life Story Books, grounded in evidence-based principles of autobiographical memory and (ii) to evaluate its effectiveness in improving sense of self in older adults with memory difficulties. A remote RT, using multisensory Digital Life Story Books, was developed. Using a short-term experimental, longitudinal design, 25 participants with memory difficulties were randomly assigned to the RT condition (16 females; M = 73.96, SD = 8.8) and 23 to a Wait-List Control (16 females; M = 78.57, SD = 9.38). Informal caregivers (N = 34; M = 63.44, SD = 13.8) provided proxy-reports on the effects of the RT. The RT was successfully developed and positively evaluated by participants. In the RT condition, a strengthened sense of self, reflected directly in the memories selected for the RT was detected. No overall condition difference was detected pre- to post-therapy. Findings highlight the appeal of RT interventions but also the challenge of adequate measurement sensitivity to demonstrate effects.
Nostalgia and Childhood Play
This is a collaborative project with colleagues at CON AMORE, Denmark. Project Leader: Dr. Alejandra Zaragoza Scherman. Nostalgia is a social emotion sometimes experienced when remembering one’s past. It can induce behavioral change and motivate future behavior (Sedikides & Wildschut, 2020). We are examining the effect of adults who have children recalling their own childhood and adulthood memories of play, with shopping memories as a comparison condition. Participants rate nostalgia of each memory, and complete measures of play attitudes, intent to purchase toys and games, and intent to engage their children and other adults in play (pre- and post-recall).
Frequency and Meaning of Events in the Life Story
End of life is the final developmental phase and one that is understudied. Individuals reflect on their life and attempt to find meaning and coherence as they near the end (Erikson, 1950). A good death is achieved, in part, by having greater terminal illness acknowledgement at end of life (Chochinov et al., 2000; Applebaum et al., 2014). The study goal is to investigate relations between frequency of stressful life experiences in one’s life story and Terminal Illness Acknowledgement. The specific aims are to investigate whether: (1) narrating greater frequency of stressful life experiences predicts greater Acknowledgement (2) engaging in more meaning-making when narrating stressful life experiences predicts greater Acknowledgement, and (3) the relation between frequency of narrating stressful life experiences and greater Acknowledgement is modified by extent of meaning-making when narrating stressful life experiences. A final aim (4) is to examine the above relations specific to content-analyzed stressful experiences (with and without meaning) related to death and illness experiences.
Communion as a Mediator of Dignity Therapy Effectiveness
Patient dignity is a key concern during end-of-life care. Dignity Therapy has been found to support patient dignity but mechanisms that may affect utility of the intervention, including content of patients’ narratives, have been little studied. The study evaluated (1) whether extent of communion expressed in the Dignity Therapy session acts as a mechanism for increased dignity post-therapy, and (2) whether communion functions as a mechanism differently for the life story and the legacy portions of patients’ narratives. Data were drawn from a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge parent study. This included a semi-structured Dignity Therapy interview with patients about their life story and legacy. Analyses include data from 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55 to 88 years; 66% women). Mediation analyses revealed that the extent to which patients narrated communion in their Dignity Therapy session has a significant direct effect on post-test Dignity Impact. Beyond that, communion partially mediated the effect of pre-test on post-test Dignity Impact, demonstrating it as a mechanism. For both the life story and legacy segments of the Dignity Therapy interview, narrating communion had a direct effect on post-test Dignity Impact. Qualitative narrative exemplars demonstrate the unique ways that communion is woven into patients’ life story and legacy narratives, in line with a person-centered approach. Narrating communion has been identified as a mechanism for enhancing patient dignity as an outcome of Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility.
Wisdom and Late Life Spousal Loss
Spousal loss is a highly challenging but normative event in late life. Limited research has been conducted on individual differences in adaptation to spousal loss. The theoretical components of wisdom suggest it may differentially provide individuals with tools for adaptation. Another resource to consider in addition to wisdom is the process through which an individual infers the mental states of others, referred to as other-mentalization. A sample of 54 older adults (Mage = 81.59; SD = 7.57, range, 70- 96; 62.3% female) completed measures assessing wisdom and two aspects of loss adaptation. Participants also completed a Dying Days Memory Interview that elicited two open-ended narratives, one about the final memory with their deceased spouse and an additional memory from the final month of their spouse’s life. The first goal of this study is to assess the feasibility of developing and implementing a novel coding system for evaluating other-mentalization in narrative data. The second goal is to provide an initial analysis of the role of wisdom, presence of content-analyzed other-mentalization, and positivity of other-mentalization (i.e., through sentiment analysis) in loss adaptation. Two individual aspects of adaptation are considered: emotional adjustment to the loss 13 and positive integration of the loss event into one’s life story. Exploring individual differences such as wisdom and aspects of other-mentalizing (i.e., presence and positivity) may reveal ways older adults can best adapt to the loss of their spouse.