Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners.

ABSTRACTBackground and Purpose:The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads. METHODS: Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer's Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). RESULTS: In adjusted models, the PWD's well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad's relationship. The CP's well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain. CONCLUSIONS: Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad's relationship quality.

Spousal Bereavement Following Cancer Death.

Loss due to cancer could predispose surviving spouses or partners to a variety of negative outcomes. Although a terminal prognosis may provide opportunities to prepare for the loss, existing evidence is inconclusive as to whether death expectedness buffers potentially negative bereavement outcomes. Using data from the Living After Loss study, we examined longitudinally outcomes of bereaved individuals whose spouses/partners died from cancer (n = 112) versus other causes (n = 213) while accounting for death expectedness. While most of the cancer deaths were expected, more than half of the non-cancer deaths were not. The lowest levels of depression, grief, and loneliness over time were among those whose spouses/partners died expectedly from causes other than cancer. Cancer-bereavement was as equally distressing as any unexpected death. Future efforts should focus on the mechanisms underlying these outcomes and develop effective and early interventions to those in greatest need.

Perceived self-competency among the recently bereaved.

In this study, the authors identified personal resources, features of the marital relationship, and death circumstances that affected perceived self-competency among recently bereaved older adults. Data came from 328 widowed persons who participated in the "Living After Loss" project. Results suggested that those who had more personal resources--namely, income and good health--were the most competent in daily life tasks. Surprisingly, neither death forewarning nor marital quality improved competency after widowhood. Higher competency was associated with more positive mental health outcomes, suggesting that grief is complicated by the need to enhance and/or restore daily life activities as well as the need to deal with the sadness associated with the loss.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads.

BACKGROUND AND OBJECTIVES: Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. DESIGN AND METHODS: Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. RESULTS: Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. IMPLICATIONS: Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.

Conducting Research With Older Adults With Vision Impairment: Lessons Learned and Recommended Best Practices.

Older adults are underrepresented in research, and a potential barrier to their participation may be the increasing prevalence of vision loss and lack of accommodation for this challenge. Although vision loss may initially pose a challenge to research participation, its effects can be mitigated with early, in-depth planning. For example, recruitment is more inclusive when best practices identified in the literature are used in the preparation of written materials to reduce glare and improve readability and legibility. Alternatives to obtaining written consent may be used. Interviews are made accessible when done verbally and the author uses cueing and good diction. Remaining vision can be optimized through seating arrangement, lighting, and magnification. Challenges encountered and resolved in a recent study with severely visually impaired older adults are offered here as exemplars. Methodology for identifying and recruiting a sample comprised exclusively of visually impaired older adults is also offered herein.

"One Size Doesn't Fit All" - Partners in Hospice Care, an Individualized Approach to Bereavement Intervention.

We concluded in a recent study that a "one size fits all" approach typical of group interventions often does not adequately accommodate the range of situations, life experiences, and current needs of participants. We describe how this limitation informed the design and implementation of an individually-delivered intervention format more specifically tailored to the unique needs of each bereaved person. The intervention comprises one of three interrelated studies within Partners in Hospice Care (PHC), which examines the trajectory from end-of-life care through bereavement among cancer caregivers using hospice. The PHC intervention employs an initial needs assessment in order to tailor the session content, delivery, and sequencing to the most pressing, yet highly diverse needs of the bereaved spouses/partners. Although an individually-delivered format has its own challenges, these can be effectively addressed through standardized interventionist training, regular communication among staff, as well as a flexible approach toward participants' preferences and circumstances.

The family series workshop: a community-based psychoeducational intervention.

This study describes an evaluation of a community-based psychoeducational intervention, called The Family Series Workshop, for caregivers of community-dwelling persons with Alzheimer's disease or related dementias (ADRD). In a one-group pretest-posttest design, participants (n = 35) attended six weekly sessions. Caregiver stress, coping, and caregiving competence were evaluated along with demographic characteristics of participants. There was a significant improvement found for caregiving competence, and a marginally significant increase in coping with humor. Using regression analysis we also found that coping with humor, along with stress, were significant predictors of caregiving competence. These findings indicate that it is possible to increase caregiving competence utilizing a "grassroots" approach and that it is feasible to hold educational, group discussions on a plethora of challenging caregiving topics.

Time for living and caring: an intervention to make respite more effective for caregivers.

This article presents the rationale for and description of a promising intervention, Time for Living and Caring (TLC), designed to enhance the effectiveness of respite services for family caregivers. It is guided by the theoretical principles of the Selective Optimization with Compensation (SOC) model, which individually coaches caregivers on how to assess their personal circumstances, identify their greatest needs and preferences, and engage in goal setting and attainment strategies to make better use of their respite time. Focusing on respite activities that match caregivers' unique needs is likely to result in improved well-being. We report on a pilot study examining TLC's feasibility and potential benefits and how caregivers viewed their participation. While additional research is needed to test and refine the intervention, we need to find more creative ways to enhance respite services.

Symptom experiences and quality of life of rural and urban older adult cancer survivors.

This study examined the symptom experience, health-related quality of life, and functional performance of elderly cancer survivors at 1 and 3 months after the completion of initial treatment. The study used a descriptive, comparative, repeated-measures design. A mixed-methods approach combined completion of survey instruments with qualitative interviews. Of the 52 participants, 22 resided in rural (n = 12) or semirural (n = 10) areas and 30 lived in urban settings. There were 23 women and 29 men ranging in age from 65 to 81 years (mean age, 71.53 years). Survivors experienced a significant number of symptoms (mean, 4.58), which were, on average, moderate in intensity and did not differ based on urban or rural residence. The Medical Outcomes Study SF-12 Physical Component Summary was less than the national norm for elderly individuals or those with a chronic disease. There was minimal improvement 3 months after treatment. Elderly survivors, regardless of whether they were rural or urban, experienced a significant number of unrelieved symptoms, including fatigue, pain, and difficulty sleeping. Eighty-eight percent had other chronic diseases. Comorbidities were associated with greater symptom intensity and less physical health status. Survivorship care for elderly adults should include a comprehensive geriatric assessment and tailored strategies for symptom management.

Humor, laughter, and happiness in the daily lives of recently bereaved spouses.

The positive psychology movement has created more interest in examining the potential value of experiencing positive emotions (e.g., humor, laughter, and happiness) during the course of bereavement. This study of 292 recently widowed (5-24 weeks) men (39%) and women (61%) age 50 and over examined both the perceived importance of and actual experience of having positive emotions in their daily lives and how they might impact bereavement adjustments. We found that most of the bereaved spouses rated humor and happiness as being very important in their daily lives and that they were also experiencing these emotions at higher levels than expected. Experiencing humor, laughter, and happiness was strongly associated with favorable bereavement adjustments (lower grief and depression) regardless of the extent to which the bereaved person valued having these positive emotions.

Toward the development of an inventory of daily widowed life (IDWL): guided by the dual process model of coping with bereavement.

The Dual Process Model of Coping with Bereavement (M. Stroebe & H. Schut, 1999) suggests that the most effective adaptation involves oscillation between 2 coping processes: loss-orientation (LO) and restoration-orientation (RO). A 22-item Inventory of Daily Widowed Life (IDWL) was developed to measure these processes and the oscillation between them and assessed by examining 163 bereaved widow(er)s, ages 45-94 years. The LO and RO subscales produced alpha coefficients of .90 and .79, respectively. The more recently widowed demonstrated a high degree of oscillation balance between the two processes, while there was a greater emphasis on restoration-orientation among those bereaved longer. Both subscales generated significant relationships with the bereavement outcome measures used in this study. Furthermore, restoration-orientation was directly related to the level of self-care and daily living skills as well as personal growth. We identify six dimensions of oscillation that warrant further consideration and encourage others to help develop and refine all features of the IDWL and make it adaptable to other loss relationships.