Death Preparedness Research Articles

Factors of preparedness for loss from cancer among Taiwanese family caregivers

This cohort study investigated factors associated with 336 Taiwanese family caregivers’ emotional and cognitive preparedness for death of a loved one with terminal cancer. Caregivers’ death-preparedness states (no-death-preparedness [as reference], cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) were previously identified. Associations of factors with these states were determined by a hierarchical generalized linear model. Financial hardship decreased caregivers’ likelihood for the emotional-death-preparedness-only and sufficient-death-preparedness states. Physician prognostic disclosure increased membership in the cognitive-death-preparedness-only and sufficient-death-preparedness states. The better the quality of the patient-caregiver relationship, the higher the odds for the emotional-death-preparedness-only and sufficient-death-preparedness states, whereas the greater the tendency for caregivers to communicate end-of-life issues with their loved one, the lower the odds for emotional-death-preparedness-only state membership. Stronger coping capacity increased membership in the emotional-death-preparedness-only state, but perceived social support was not associated with state membership. Providing effective interventions tailored to at-risk family caregivers’ specific needs may facilitate their death preparedness.

ENGAGING WITH NURSING HOME SOCIAL WORKERS TO DEVELOP AND IMPLEMENT CLINICAL INTERVENTION TRAINING

Abstract PreLoss Group Support (PLGS) is a 10-session multi-modal therapeutic group intervention for dementia family care partners administered by nursing home social workers (NHSWs) to facilitate healthy death preparedness and eventual bereavement. In prior work, we used empirically validated procedures for developing psychosocial interventions, created PLGS participant and facilitator manuals, and implemented and evaluated PLGS in three cohorts of nursing home family care partners using research team LCSWs as facilitators and NHSWs as co-facilitator-trainees. Our present pragmatic trial will determine if telehealth-delivered PLGS reduces risk of poor bereavement outcome in family care partners, when delivered by NHSWs trained in PLGS via telehealth. We systematically engaged with nursing home stakeholders; administrators and NHSWs in rural, urban, and Veteran nursing homes to identify their perceptions of family care partner needs with respect to end-of-life care in residents living with dementia.NHSWs collaborated with our team to develop a full-day clinical education program. We incorporated their suggestions of family “characters” to script into our video modules using professional actors, addressed potential concerns with telehealth delivery of the training and intervention, participant identification and recruitment procedures, and requests for didactic content and interactive case examples of treatment element application. Current NHSWs who attended the full day training completed a 7-item satisfaction scale yielding a satisfaction rate of 95% (highly valuable), with 100% indicating they would recommend training to SWs in other facilities. Sustained collaboration with NH stakeholders optimizes commitment of NHSWs to PLGS participants, intervention delivery and informs later implementation strategies for translation and dissemination.

Ambulance use and emergency department visits among people with dementia: A cross-sectional survey.

This study aimed to explore factors associated with ambulance use and emergency department (ED) visits among people with dementia in the month before death. A web-based survey of bereaved family caregivers of people with dementia was conducted in March 2020. Multivariate logistic regression analyses were conducted with ambulance use and ED visits in the month before death as dependent variables. Age and gender of people with dementia and their family caregivers, home care use, decision-makers, comorbidities, degree of independence in daily living, and caregivers' preparedness for death were independent variables. Data were collected from 817 caregivers of people with dementia who had died at hospitals (52.4%), long-term care facilities (25.0%), or own homes (22.4%). Caregivers' lack of preparedness for death was significantly associated with ambulance use in the month before death. Comorbidites and males with dementia were significantly associated with ED visits in the month before death. Better death preparedness of family caregivers may reduce ambulance use for symptoms that can be more effectively addressed by palliative care than acute care for people with dementia.

Death Preparedness: Development and Initial Validation of the Advance Planning Preparedness Scale.

Delayed advance planning and costs of life sustaining treatments at end of life significantly contribute to the economic burden of healthcare. Clinician barriers include perceptions of inappropriate timing, lack of skills in end-of-life communication and viewing readiness as a behavior rather than a death attitude. This study developed and validated a measurement of psychological preparedness for advance directive completion. Confirmatory factor analysis (N = 543) of a 35 item pool (Cronbach α = .96) supported five sub-scales; psychological comfort (α = .87), desire to know (α = .88), thinking (α = .84), willingness (α = .82) and existential reflection (α = .79) with a possible common factor (α = .84). Results suggested significant predictors of completing directives in 30 days included discussion (OR .08, p < .001), preparedness (OR 4.08, p = .03) and uncertainty (OR 4.37, p = .02). APP = 35 is a reliable and valid measure with utility to assess readiness for completion of EOL documents.

Supportive Care for Dual Caregivers who Care for Their Partner With Cancer and Their Young Children.

Advanced cancer patients and their spouses who parent minor children report parenting concerns and increased psychological distress. This single-arm trial examined the feasibility and initial evidence for efficacy of a novel parent support program. Patients with a metastatic solid malignancy and their spouses completed self-reported assessments of psychological distress (HADS), parenting concerns (PCQ) and efficacy (CaPSE) at baseline. Both patients and spouses jointly attended the first two sessions addressing illness communication and family routines. Spouses individually attended two additional sessions focusing on caregiver support and death preparedness. All four sessions were delivered via videoconference by a licensed psychological counselor. Dyads completed program evaluations and were reassessed six and 12 weeks postintervention. With a consent rate of 61%, 10 patients (50% female; 90% non-Hispanic White; mean age=42 years) and their spouses (50% female; 70% non-Hispanic White; mean age=42 years) completed the assessments. All patients and 90% of spouses attended all intervention sessions and evaluated the program favorably. Paired t-tests revealed significant improvements in patients' parenting concerns at the six weeks (P=0.003) and parenting efficacy at the six weeks (P=0.03) and 12 weeks (P=0.03) follow-ups. For spouses, we found significant improvements in parenting efficacy (P < 0.001) and depressive symptoms (P=0.04) at six weeks and parenting concerns at both six weeks (P=0.006) and 12 weeks (P=0.001) follow-ups. The initial testing of our parenting intervention yielded promising results regarding feasibility and an initial signal of intervention efficacy. Thus, a randomized controlled trial for further testing is warranted.

Factors associated with cancer patients' distinct death-preparedness states.

Facilitating death preparedness is important for improving cancer patients' quality of death and dying. We aimed to identify factors associated with the four death-preparedness states (no-preparedness, cognitive-only, emotional-only, and sufficient-preparedness) focusing on modifiable factors. In this cohort study, we identified factors associated with 314 Taiwanese cancer patients' death-preparedness states from time-invariant socio-demographics and lagged time-varying modifiable variables, including disease burden, physician prognostic disclosure, patient-family communication on end-of-life (EOL) issues, and perceived social support using hierarchical generalized linear modeling. Patients who were male, older, without financial hardship to make ends meet, and suffered lower symptom distress were more likely to be in the emotional-only and sufficient-preparedness states than the no-death-preparedness-state. Younger age (adjusted odds ratio [95% confidence interval]=0.95 [0.91, 0.99] per year increase in age) and greater functional dependency (1.05 [1.00, 1.11]) were associated with being in the cognitive-only state. Physician prognostic disclosure increased the likelihood of being in the cognitive-only (51.51 [14.01, 189.36]) and sufficient-preparedness (47.42 [10.93, 205.79]) states, whereas higher patient-family communication on EOL issues reduced likelihood for the emotional-only state (0.38 [0.21, 0.69]). Higher perceived social support reduced the likelihood of cognitive-only (0.94 [0.91, 0.98]) but increased the chance of emotional-only (1.09 [1.05, 1.14]) state membership. Death-preparedness states are associated with patients' socio-demographics, disease burden, physician prognostic disclosure, patient-family communication on EOL issues, and perceived social support. Providing accurate prognostic disclosure, adequately managing symptom distress, supporting those with higher functional dependence, promoting empathetic patient-family communication on EOL issues, and enhancing perceived social support may facilitate death preparedness.

Sufficient Death Preparedness Correlates to Better Mental Health, Quality of Life, and EOL Care

ContextPatients can prepare for end of life and their forthcoming death to enhance the quality of dying. ObjectivesWe aimed to longitudinally evaluate the never-before-examined associations of cancer patients' death-preparedness states by conjoint cognitive prognostic awareness and emotional preparedness for death with psychological distress, quality of life (QOL), and end-of-life care received. MethodsIn this cohort study, we simultaneously evaluated associations of four previously identified death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) with anxiety symptoms, depressive symptoms, and QOL over 383 cancer patients’ last six months and end-of-life care received in the last month using multivariate hierarchical linear modeling and logistic regression modeling, respectively. Minimal clinically important differences (MCIDs) have been established for anxiety- (1.3–1.8) and depressive- (1.5–1.7) symptom subscales (0–21 Likert scales). ResultsPatients in the no-death-preparedness and cognitive-death-preparedness-only states reported increases in anxiety symptoms and depressive symptoms that exceed the MCIDs, and a decline in QOL from those in the sufficient-death-preparedness state. Patients in the emotional-death-preparedness-only state were more (OR [95% CI]=2.38 [1.14, 4.97]) and less (OR [95% CI]=0.38 [0.15, 0.94]) likely to receive chemotherapy/immunotherapy and hospice care, respectively, than those in the sufficient-death-preparedness state. Death-preparedness states were not associated with life-sustaining treatments received in the last month. ConclusionConjoint cognitive and emotional preparedness for death is associated with cancer patients’ lower psychological distress, better QOL, reduced anti-cancer therapy, and increased hospice-care utilization. Facilitating accurate prognostic awareness and emotional preparedness for death is justified when consistent with patient circumstances and preferences.

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.

BackgroundWhen family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death.MethodsThis was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data.ResultsWe addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer.ConclusionsWhile most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.

Associations of death-preparedness states with bereavement outcomes for family caregivers of terminally ill cancer patients.

Death preparedness involves cognitive prognostic awareness and emotional acceptance of a relative's death. Effects of retrospectively assessed cognitive prognostic awareness and emotional preparedness for patient death have been individually investigated among bereaved family caregivers. We aimed to prospectively examine associations of caregivers' death-preparedness states, determined by conjoint cognitive prognostic awareness and emotional preparedness for death, with bereavement outcomes. Associations of caregivers' death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) at last preloss assessment with bereavement outcomes over the first two bereavement years were evaluated among 332 caregivers of advanced cancer patients using hierarchical linear models with the logit-transformed posterior probability for each death-preparedness state. Caregivers with a higher logit-transformed posterior probability for sufficient death-preparedness state reported less prolonged-grief symptoms, lower likelihoods of severe depressive symptoms and heightened decisional regret, and better mental health-related quality of life (HRQOL). Caregivers with a higher logit-transformed posterior probability for no-death-preparedness state reported less prolonged-grief symptoms, a lower likelihood of severe depressive symptoms, andbetter mental HRQOL. A higher logit-transformed posterior probability for cognitive-death-preparedness-only state was associated with bereaved caregivers' higher likelihood of heightened decisional regret, whereas that for emotional-death-preparedness-only state was not associated with caregivers' bereavement outcomes. Caregivers' bereavement outcomes were associated with their preloss death-preparedness states, except for physical health-related QOL. Interventions focused on not only cultivating caregivers' accurate prognostic awareness but also adequately preparing them emotionally for their relative's forthcoming death are actionable opportunities for high-quality end-of-life care and are urgently warranted to facilitate caregivers' bereavement adjustment.

Evaluation of the Caring Ahead: Preparing for End-of-Life With Dementia Questionnaire

ObjectivesFamily caregivers of persons with dementia rarely feel prepared for end of life although preparedness predicts outcomes in bereavement. The Caring Ahead: Preparing for End-of-Life With Dementia questionnaire was developed to measure family caregiver death preparedness. The aim of this study was to evaluate questionnaire psychometrics and refine the Caring Ahead questionnaire. DesignA quantitative cross-sectional reliability study design was used to evaluate the questionnaire. Setting/ParticipantsData were collected by mail from 134 English-speaking family caregivers of persons with dementia recruited from more than 50 congregate living facilities in Canada. Thirty-two participants completed a test-retest. MethodsAnalysis of psychometrics included exploratory factor analysis, calculation of correlation with a single-global preparedness item, Cronbach alpha, intraclass correlation coefficient (ICC) over time. ResultsA 4-factor model with 20 items emerged through exploratory factor analysis with principal factors extraction and promax rotation. The revised questionnaire includes 4 factor subscales: Actions (7 items), Dementia Knowledge (5 items), Communication (4 items), and Emotions and Support Needs (4 items). Evidence was demonstrated for concurrent validity (0.44-0.55, P < .001), internal consistency (alpha > 0.7), and reliability (ICCs > 0.7). Lower levels of preparedness were reported for “knowing what the dying process with dementia may be like” and “discussing end-of-life care and preferences with health care providers.” Conclusions and ImplicationsPreliminary evidence for validity and reliability of the refined 20-item Caring Ahead questionnaire suggests the questionnaire may be useful to clinicians and researchers seeking to assess caregivers’ feelings of preparedness, identify specific areas for intervention, and evaluate the effectiveness of caregiver interventions. Additional testing is needed to evaluate predictive validity.

Distinct Death-Preparedness States by Combining Cognitive and Emotional Preparedness for Death and Their Evolution for Family Caregivers of Terminally Ill Cancer Patients Over Their Last 6 Months of Life

ContextTo identify caregivers’ death-preparedness states by combining cognitive and emotional preparedness for their loved one's death as well as their evolution over cancer patients’ last 6 months, which have never been explored. MethodsDeath-preparedness states and their evolution were examined by hidden Markov modeling among 393 caregivers of cancer patients. ResultsFour death-preparedness states were identified: no death preparedness, cognitive death preparedness only, emotional death preparedness only, and sufficient death preparedness. Caregivers in the no-death-preparedness state had neither accurate cognitive prognostic awareness (PA) nor adequate emotional preparedness for death. Caregivers in the sufficient-death-preparedness state reported accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, caregivers were accurately aware of the patient's prognosis and adequately emotionally prepared for his/her forthcoming death only, respectively. Prevalence of the sufficient-death-preparedness state fluctuated within a narrow range (40.8%–43.2%) over the patient's last six months. Proportions of caregivers decreased in the emotional-death-preparedness-only (19.5%–6.5%) and no-death-preparedness (21.0%–8.2%) states, whereas prevalence of the cognitive-death-preparedness-only state increased substantially (16.3%–44.4%) to become the most prevalent state as death approached. ConclusionCaregivers of cancer patients heterogeneously experienced combined cognitive and emotional preparedness for death. About 40% of caregivers consistently had sufficient death preparedness over their loved one's dying process. Evaluating these different aspects of death preparedness could be an important approach in high-quality end-of-life care by not only cultivating caregivers’ cognitive PA, but also facilitating their emotional preparedness for the patient's death, thus helping caregivers prepare well for their loved one's forthcoming death.

Conjoint cognitive and emotional death-preparedness statesand their changes within cancer patients' last 6 months.

Cognitive prognostic awareness (PA) and emotional preparedness for death are distinct but related concepts that have rarely been investigated conjointly and without considering the dynamic nature of death preparedness. To fill this gap, this secondary-analysis study identified distinct patterns/states of death preparedness and their changes within cancer patients' last 6 months. Distinct death-preparedness states, determined by conjoint cognitive PA and emotional preparedness for death, as well as their changes between consecutive times were identified and estimated, respectively, by latent transition modeling with hidden Markov modeling among 383 cancer patients within their last 6 months. Four death-preparedness states (prevalence) were initially identified: no death preparedness (17.1%), cognitive death preparedness only (23.3%), emotional death preparedness only (39.9%), and sufficient death preparedness (19.7%). Patients in the no-death-preparedness state had neither accurate PA nor adequate emotional preparedness for death. The sufficient-death-preparedness state was characterized by both accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, patients were accurately aware of their prognosis and adequately emotionally prepared for their forthcoming death only, respectively. As death approached, state prevalence fluctuated within a narrow range for the no- and sufficient-death-preparedness states, whereas prevalence of cognitive- and emotional-death-preparedness-only states increased and decreased substantially, respectively. Cancer patients heterogeneously experienced conjoint cognitive PA and emotional preparedness for death, and prevalence of death-preparedness states changed substantially as death approached. Effective interventions are warranted to cultivate cognitive PA and facilitate emotional death-preparedness to improve end-of-life-care quality, thereby helping patients achieve a good death.

Pre-loss group therapy for dementia family care partners at risk for complicated grief.

IntroductionDementia family caregiving may span more than a decade and places many family care partners (CPs) at risk for poor bereavement outcomes; estimates of complicated grief in bereaved dementia family CPs range from 10% to 20%. We adapted our efficacious complicated grief group therapy intervention for bereaved dementia caregivers for soon‐to‐be bereaved dementia CPs at risk for complicated grief to facilitate healthy death preparedness and eventual bereavement—pre‐loss group therapy (PLGT).MethodsIn this Stage IB pilot intervention study, we implemented and evaluated PLGT in three psychotherapy group cohorts with family CPs at‐risk for complicated grief whose person living with dementia (PLWD) had a life expectancy of 6 months or less and resided in a nursing home. PLGT is a 10‐session multi‐modal psychotherapy administered by social workers.ResultsParticipants in PLGT realized significant improvement in their pre‐loss grief and in reported preparedness for the death of their family member, and participants evidenced lowered pre‐loss grief severity and improvement, as measured by facilitators. Participants also realized significant improvement in meaning making, particularly as a sense of peace and a reduction of loneliness.DiscussionThe process and treatment elements of the PLGT intervention affirm the value of specialized care for those dementia family CPs at risk for complicated grief, as the PLGT groups demonstrated a steady progression toward improvement collectively and individually. PLGT participants realized statistical and clinical improvement across pre‐loss grief measures suggesting that their risk for complicated grief risk was mitigated, and they were better prepared for the death of their PLWD.

Development and Evaluation of the Caring Ahead: Preparing for End of Life in a Dementia Questionnaire

A palliative approach is recommended in long-term care to support persons with dementia and help families prepare for end-of-life. Despite this, 50% of family caregivers of persons with dementia report feeling unprepared for death. A questionnaire is needed to assess caregiver death preparedness as an outcome measure for strategies within palliative care. A mixed methods design with qualitative and quantitative phases was used to develop and evaluate the ‘Caring Ahead: Preparing for End-of-Life in Dementia’ questionnaire. The questionnaire has 30 items organized into Medical, Relationship/Personal, Spiritual and Practical subscales with a 7-pt Likert response scale. To date, the questionnaire has been tested with 117 participants who are 61 years old on average, female (86%), adult children (77%) caring for a person with dementia in long-term care. The mean item score is 5.61 (SD 0.71). Participants report limitations in preparedness related to: 1) communication with healthcare providers about traditions and preferences for end-of-life care; 2) knowledge of the dying process and; 3) life purpose after death. A test-retest with 32 participants demonstrates a high degree of reliability; Intraclass Correlation Coefficient 0.91 (CI95%: 0.31-0.97). A moderate positive correlation between participant total scores and a single global preparedness item suggests concurrent validity, r=.66 (CI95%: 0.51-0.80). These findings will be used to refine the questionnaire and contribute a valuable measurement tool for clinicians, researchers and policy-makers working in palliative care.

Terminally Ill Cancer Patients' Emotional Preparedness for Death Is Distinct From Their Accurate Prognostic Awareness

ContextEmotional preparedness for death (hereafter called death preparedness) and prognostic awareness (PA), a distinct but related concept, each contributes to patients' practical, psychological, and interpersonal preparations for death. However, the distinction between these two concepts has never been investigated. ObjectivesTo evaluate the distinction between death preparedness and accurate PA by examining their agreement during cancer patients' last year and the similarity of their predictors. MethodsFor this secondary analysis of a longitudinal study of death preparedness for 277 patients with cancer, agreement between death preparedness and accurate PA was evaluated by percentages and kappa coefficients, and predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. ResultsLevels of agreement between reported death preparedness and accurate PA increased slightly (42.44%–52.85%) from 181–365 days to one to 30 days before death, with kappa values from −0.190 (−0.319, −0.061) to −0.006 (−0.106, 0.093), indicating poor agreement. Participants who were male, older, reported financial sufficiency, had fewer distressing symptoms, and perceived higher levels of social support were more likely to report death preparedness. Participants who were female, had greater than high-school educational attainment, and endured higher levels of functional dependence were more likely to report accurate PA. ConclusionThe distinction between death preparedness and accurate PA was supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should not only cultivate cancer patients' accurate PA but also facilitate emotional preparation for death to achieve a good death and improve end-of-life care quality.

Death Attitudes as Possible Predictors of Death Preparedness across Lifespan among Nonclinical Populations in Nairobi County, Kenya.

Context:Death is an important part of lifespan development, yet it remains trivialized or feared across many cultures. The perpetuation of death as a taboo subject continues to negatively affect the society. Death anxiety inhibits death preparedness which could affect the quality of dying. The pool of unclaimed assets held by different organizations continues to increase, intestate deaths remain high, and post death conflicts continue to affect many families.Aims:This study intended to examine death attitudes as possible predictors of death preparedness and explore the rationale for various death attitudes across lifespan in Nairobi, Kenya.Methods:The study adopted the mixed-methods explanatory sequential research design combining cross-sectional and phenomenological designs. The study targeted young adults, middle-aged adults, and seniors with a sample of 335 participants selected using multistage, stratified, and extreme case sampling designs. Data were collected using the Death Attitude Profile-Revised and interview guides.Analysis:Data were analyzed using univariate and thematic analyses.Results:The findings indicated that negative death attitudes declined with increase in age, whereas positive death attitudes increased with increase in age. Some of the reasons for negative death attitudes included threatening dying process, unfulfilled life goals, fear of hell, unresolved past deaths, and families with young children among others. The reasons for positive death attitude included reuniting with deceased loved ones and peers, meeting the creator, and end to a prolonged miserable life and fulfilled past life.Conclusion:This study implies that mental health practitioners need to target younger adults with death education programs to promote death preparedness and quality dying. For the older adults, addressing life regrets, family conflicts, and past unresolved deaths would significantly improve the quality of dying.

“A Crazy Roller Coaster at the End”: A Qualitative Study of Death Preparedness With Caregivers of Persons With Dementia

IntroductionCaregivers of persons with dementia experience challenges that can make preparing for end-of-life particularly difficult. Feeling prepared for death is associated with caregiver well-being in bereavement and is promoted by strategies supporting a palliative approach. Further conceptualization of caregiver preparedness for death of persons with dementia is needed to guide the practice of healthcare providers and to inform development of a preparedness questionnaire.ObjectivesWe aimed to: 1) explore the end-of-life experiences of caregivers of persons with dementia to understand factors perceived as influencing preparedness; and 2) identify the core concepts (i.e., components), barriers and facilitators of preparedness for death.MethodsThis study used an interpretive descriptive design. Semi-structured interviews were conducted with sixteen bereaved caregivers of persons with dementia, recruited from long-term care homes in Ontario. Data was analyzed through reflexive thematic analysis.FindingsFour themes were interpreted including: ‘A crazy rollercoaster at the end’ which described the journey of caregivers at end-of-life. The journey provided context for the development of core concepts (i.e., components) of preparedness represented by three themes: ‘A sense of control, ‘Doing right’ and ‘Coming to terms’.ConclusionThe study findings serve to expand the conceptualization of preparedness and can guide improvements to practice in long-term care. Core concepts, facilitators and influential factors of preparedness will provide the conceptual basis and content to develop the Caring Ahead: Preparing for End-of-Life with Dementia questionnaire.

What Does Death Preparedness Mean for Family Caregivers of Persons With Dementia?

The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning. Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness. Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, "a silver-lining"; and (7) closing, reconciling, and renewing relationship bonds and completing the family member's life. This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway.

The Effect of Psychosocial Support, Death Preparedness, and Ego Integrity on Death Anxiety in Old People

The purpose of this study is to understand the effect of psychosocial support, death preparedness, and ego integrity on death anxiety in old people. The participant of this study were the elderly who attended welfare centers, worked in their workplaces, or lived at their home in Seoul regions, from whom this study had collected their data from February to May 2017. A total of 350 questionnaires were distributed and 329 copies of them were used for its final analysis using SPSS 24.0 and AMOS 20.0 statistical programs. According to the results of this study, psychosocial support had no statistically significant effect on death anxiety, whereas death preparedness and ego integrity had statistically significant effects on death anxiety. Based upon these research results, this study suggested that it is necessary to develop death education and counseling programs as policy supports and practical methods for helping old people to accept their death positively, reintegrate their ego, and perform their successful aging.

Family Caregivers’ Preparations for Death: A Qualitative Analysis

ContextMany family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers’ perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. ObjectivesThe objective was to explore family caregivers’ preparations for death. MethodsA total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques. ResultsAnalysis yielded two overarching themes: Here and Now centered on the caregivers’ focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After). ConclusionThis exploratory study is the first to focus solely on family caregivers’ experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.