The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being.

Background and Objectives: The Remote Assessment and Dynamic Response (READyR) Program was developed in order to address the current lack of early-stage dementia care planning programs that assess the care needs of persons with dementia. The goal was to create a program informed by care values and ongoing ecologically valid data. The objectives of this study are to describe the development and design process of the READyR Program, and to evaluate the utility of the READyR Program for identifying dementia-related care needs. Research Design and Methods: A prototype of the web-based READyR Program tool was first created using digital activity data that were collected by previous studies using a platform of multimodal sensors installed in the homes of older adult couples with and without dementia. Digital activity data were then mapped onto potential care values (e.g., safety & autonomy) to create a values-based needs assessment that is tailored to the individual care dyad. Next, evaluation of the READyR Program by 11 professional dementia care coordinators and case managers (across 3 semistructured focus groups) was used to explore the utility of READyR for assessing dementia-related needs. Qualitative description using conventional content analysis was used to iteratively code focus group data and to describe prevalent themes. Results: Prevalent focus groups themes included barriers to (e.g., family relationship strain) and facilitators of (e.g., tailored assessments) the optimal process for assessing dementia-related care needs by care coordinators, as well as advantages to (e.g., providing new objective insights into function, and routines) and disadvantages of (e.g., bringing up new questions about care) incorporating the remote monitoring data into a values-based needs assessment. Discussion and Implications: READyR has the potential to help family members, as well as care coordinators and providers, gain insight into the values-based care needs of persons with early-stage dementia. Clinical Trials Registration Number: NCT04542109.

Practicing the ABCDEs of Self-Care in Pandemic Times.

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It's All About the Relationship: Cognitively Intact Mother-Daughter Care Dyads in Hospice at Home.

Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice. Design and Methods: Semistructured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother-adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyze dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor. Results: A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems. Implications: This work suggests deeper exploration of mother-daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.

Relationship Quality in Non-Cognitively Impaired Mother-Daughter Care Dyads: A Systematic Review.

More than 60 million Americans provide care to a family member; roughly two thirds are women providing care to aging mothers. Despite the protective nature of relationship quality, little attention has been given to its role in mother-daughter care dyads, particularly in mothers without cognitive impairment. A systematic appraisal of peer-reviewed, English language research was conducted. Nineteen articles met criteria. When relationship quality is positive, mother-daughter dyads enjoy rewards and mutuality, even when conflict occurs. Daughters grow more emotionally committed to mothers' over the care trajectory, despite increasing demands. Daughters' commitment deepens as mothers physically decline, and mothers remain engaged, emotional partners. When relationship quality is ambivalent or negative, burden, conflict, and blame conspire, creating a destructive cycle. Avenues for continuing study, including utilizing the dyad as the unit of analysis, troubled dyads, longitudinal assessment, and end of life context, are needed before interventions to improve mother-daughter relationship quality may be successfully implemented.

Living through the end: The phenomenon of dying at home.

OBJECTIVES: To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family. METHODS: Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants - in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes. RESULTS: The paradigm case, "The Meaning of Being at Home," revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included "Driving Her Own Course" and "Not Being a Burden." Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team. SIGNIFICANCE OF RESULTS: End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.