Dementia caregivers' coping strategies and their relationship to health and well-being: the Cache County Study.

OBJECTIVES: Prior research identifies that psychological outcomes among dementia caregivers are associated with their use of coping strategies. Few studies have tested the association of coping and health longitudinally. METHOD: This study examined factors associated with the use of coping strategies over time and their associations with physical and mental health outcomes in a population-based sample of 226 dementia caregivers in Cache County, Utah, USA. Caregivers annually completed the Ways of Coping Checklist-Revised, the Beck Anxiety Inventory, and a health interview. Care-recipient cognitive and functional abilities were obtained using the Mini-Mental State Exam and the Clinical Dementia Rating. Neuropsychiatric symptoms were assessed using the Neuropsychiatric Inventory. RESULTS: Caregivers most frequently identified providing care as a problem (37.6%). Linear mixed models of caregiver coping strategies found that the use of most strategies were stable except for increasing Avoidance among adult child caregivers (ß = 0.14, p = 0.048). On average, increased Wishful Thinking (ß = 2.48, p < 0.001) or Blames Self (ß = 1.06, p = 0.002) was associated with higher anxiety scores. Increased use of Blames Others among males (interaction, ß = 0.28, p = 0.02) and greater use of Wishful Thinking among younger caregivers (interaction, ß = -0.01, p = 0.01) were associated with more caregiver health conditions. Coping strategies were not associated with change in anxiety or health conditions over time. CONCLUSION: Our results emphasize the importance of caregiver coping strategies on caregiver health and well-being and may identify subgroups of persons at risk for worse outcomes.

Caregiver coping strategies predict cognitive and functional decline in dementia: the Cache County Dementia Progression Study.

OBJECTIVES: Few longitudinal studies have studied the influence of the care environment on the clinical progression of dementia. We examined whether caregiver coping strategies predict dementia progression in a population-based sample. DESIGN: Longitudinal, prospective cohort study. SETTING: Cache County (Utah) population. PARTICIPANTS: A total of 226 persons with dementia, and their caregivers, were assessed semiannually for up to 6 years. MEASUREMENTS: Ways of Coping Checklist-Revised, Mini-Mental State Examination (MMSE), and Clinical Dementia Rating (CDR). RESULTS: Mean (SD) age of dementia onset in persons with dementia was 82.11 (5.84) years and mean caregiver age was 67.41 (13.95) years. Mean (SD) follow-up was 1.65 (1.63) years from baseline. In univariate linear mixed-effects models, increasing use of problem-focused and counting blessings by caregivers was associated with slower patient worsening on the MMSE. Problem-focused coping, seeking social support, and wishful thinking were associated with slower Clinical Dementia Rating Scale sum of boxes (CDR-sb) worsening. Considering covariates, increasing use of problem-focused coping was associated with 0.70 points per year less worsening on the MMSE and 0.55 points per year less worsening on the CDR-sb. Compared with no use, the "regular" use of this strategy was associated with 2 points per year slower worsening on the MMSE and 1.65 points per year slower worsening on the CDR-sb. CONCLUSIONS: Caregiver coping strategies are associated with slower dementia progression. Developing interventions that target these strategies may benefit dementia patients.

Caregiver personality predicts rate of cognitive decline in a community sample of persons with Alzheimer's disease. The Cache County Dementia Progression Study.

BACKGROUND: Environmental influences on the rate of Alzheimer's disease (AD) progression have received little attention. Our objective was to test hypotheses concerning associations between caregiver personality traits and the rate of AD progression. METHODS: Care receivers (CR) were 161 persons with AD from a population-based dementia progression study; 55 of their caregivers were spouses and 106 were adult children. Cognitive status of the CR was measured with the Mini-Mental State Examination every six months, over an average of 5.6 (range: 1-14) years. Linear mixed models tested rate of cognitive decline as a function of caregiver personality traits from the NEO Five-Factor Inventory. RESULTS: Significantly faster cognitive decline was observed with higher caregiver Neuroticism overall; however, in stratified models, effects were significant for adult child but not spouse caregivers. Neuroticism facets of depression, anxiety, and vulnerability to stress were significantly associated with faster decline. Higher caregiver Extraversion was associated with slower decline in the CR when caregivers were adult children but not spouses. CONCLUSIONS: For adult child caregivers, caregiver personality traits are associated with rate of cognitive decline in CRs with AD regardless of co-residency. Results suggest that dementia caregiver interventions promoting positive care management strategies and ways to react to caregiving challenges may eventually become an important complement to pharmacologic and other approaches aimed at slower rate of decline in dementia.

Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study.

BACKGROUND: Quality of life (QOL) is frequently assessed in persons with dementia (PWD) through self- and/or proxy-report. Determinants of QOL ratings are multidimensional and may differ between patients and caregiver proxies. This study compared self- and proxy-reported QOL ratings in a population-based study of PWD and their caregivers, and examined the extent to which discrepancies in reports were associated with characteristics of the PWD. METHODS: The sample consisted of 246 patient/caregiver dyads from the initial visit of the Cache County Dementia Progression Study, with both members of the dyad rating PWD QOL. PWD age, gender, cognitive impairment (Mini-Mental State Examination), neuropsychiatric symptoms (Neuropsychiatric Inventory; NPI), dementia severity (Clinical Dementia Rating), medical comorbidities (General Medical Health Rating), and functional impairment (Dementia Severity Rating Scale) were examined as correlates of self- and proxy-reported QOL ratings and the differences between the QOL reports. RESULTS: Self- and proxy-reported PWD QOL ratings were only modestly correlated. Medical comorbidity was associated with self-report whereas NPI was associated with proxy-report. Dementia severity was associated with discrepancies in self- and proxy-report, with worse patient cognition associated with poorer proxy-reported QOL ratings. CONCLUSIONS: PWD self- and proxy-reported QOL ratings are associated with different variables. Discrepancies between PWD and caregiver perceptions of PWD QOL should be recognized, particularly in cases of more severe dementia.

Progression of cognitive, functional, and neuropsychiatric symptom domains in a population cohort with Alzheimer dementia: the Cache County Dementia Progression study.

OBJECTIVES: Progression of Alzheimer dementia (AD) is highly variable. Most estimates derive from convenience samples from dementia clinics or research centers where there is substantial potential for survival bias and other distortions. In a population-based sample of incident AD cases, we examined progression of impairment in cognition, function, and neuropsychiatric symptoms, and the influence of selected variables on these domains. DESIGN: Longitudinal, prospective cohort study. SETTING: Cache County (Utah). PARTICIPANTS: Three hundred twenty-eight persons with a diagnosis of possible/probable AD. MEASUREMENTS: Mini-Mental State Exam (MMSE), Clinical Dementia Rating sum-of-boxes (CDR-sb), and Neuropsychiatric Inventory (NPI). RESULTS: Over a mean follow-up of 3.80 (range: 0.07-12.90) years, the mean (SD) annual rates of change were -1.53 (2.69) scale points on the MMSE, 1.44 (1.82) on the CDR-sb, and 2.55 (5.37) on the NPI. Among surviving participants, 30% to 58% progressed less than 1 point per year on these measures, even 5 to 7 years after dementia onset. Rates of change were correlated between MMSE and CDR-sb (r = -0.62, df = 201, p < 0.001) and between the CDR-sb and NPI (r = 0.20, df = 206, p < 0.004). Female subjects (LR χ = 8.7, df = 2, p = 0.013) and those with younger onset (likelihood ratio [LR] χ = 5.7, df = 2, p = 0.058) declined faster on the MMSE. Although one or more apolipoprotein E ε 4 alleles and ever use of FDA-approved antidementia medications were associated with initial MMSE scores, neither was related to the rate of progression in any domain. CONCLUSIONS: A significant proportion of persons with AD progresses slowly. The results underscore differences between population-based versus clinic-based samples and suggest ongoing need to identify factors that may slow the progression of AD.

Characteristics of strong commitments to intergenerational family care of older adults.

OBJECTIVE: The purpose of this research was to describe the characteristics of strong commitment to home-based elder care among intergenerational family caregivers. METHODS: I conducted two qualitative studies using in-depth interviews with primary and secondary intergenerational caregivers. A total of 45 primary caregivers, 10 spouses, and 11 adult grandchildren discussed development of their relative's care, their caregiving experiences, use of paid services, and how caregiving affected their lives. I followed McCracken's five-step method for analysis of long interviews. RESULT: Strongly committed caregivers composed half of the total sample. All primary caregivers with strong commitments were women; some strongly committed secondary caregivers were men. Strong commitments had moral, religious, and affectionate bases. Participants gave compassionate care and reframed adverse situations as manageable challenges. Family members and paid providers assisted primary caregivers. Participants viewed caregiving as rewarding and as an opportunity to teach compassion to children. DISCUSSION: Results suggest that strongly committed intergenerational caregivers need support from both family and formal care services to sustain their commitments to care. Future research can investigate the role of resilience in caregiver commitments and develop caregiver commitment measures for use in elaborating models of informal long-term care.

Provider management of child stress behavior in family day care facilities: scaffolding for learning and development by developmentally appropriate practice.

Six children (5 boys, 1 girl; aged 36-60 months) participated in this qualitative study. Each child was enrolled in a different family child care facility. The authors rated the child care providers in 3 of the facilities as using developmentally appropriate practices (DAP) most of the time and rated the providers in the 3 other facilities as rarely or never using DAP. They also examined provider management of children's stress behaviors. The authors observed less active and passive stress behaviors in the high-DAP facilities than in the low-DAP facilities. The authors discuss the results with regard to the distinctively different day care culture found in high-DAP facilities versus low-DAP facilities and the implications for practice.

Have I Ever Done Anything Like This Before? Older Adults Solving Ill-Defined Problems in Intensive Volunteering.

This study examined the ways in which individuals over 50 years old solved problems while volunteering in intensive humanitarian and disaster relief service. Thirty-seven men and women in the sample were sponsored by three religious organizations well known for providing humanitarian and disaster relief service. Semistructured interviews yielded data that were analyzed qualitatively, using McCracken's five-step process for analysis. We found that volunteers used three different abilities to solve problems: drawing upon experience to create strategies, maintaining emotional stability in the midst of trying circumstances, and applying strategies in a context-sensitive manner. These findings illustrate that these factors, which are comparable to those used in solving everyday problems, are unique in the way they are applied to intensive volunteering. The volunteers' sharing of knowledge, experience, and support with each other were also noticeable in their accounts of their service. This sharing contributed strongly to their sense of emotional stability and effectiveness in solving problems.

Leaving home: how older adults prepare for intensive volunteering.

Using the concepts in the Fogg Behavioral Model, 37 volunteers aged 50 and older described their preparation for intensive volunteering with faith-based organizations. Their multistage preparation process included decision points where respondents needed to choose whether to drop out or continue preparation. Ability was a stronger determinant of serving than motivation, particularly in terms of health and finances. This model can facilitate understanding of the barriers to volunteering and aid organizations in tailoring support at crucial points for potential older volunteers in intensive service.

Predictors of dementia caregiver depressive symptoms in a population: the Cache County dementia progression study.

OBJECTIVES: Previous research has consistently reported elevated rates of depressive symptoms in dementia caregivers, but mostly with convenience samples. This study examined rates and correlates of depression at the baseline visit of a population sample of dementia caregivers (N = 256). METHOD: Using a modified version of Williams (Williams, I. C. [2005]. Emotional health of black and white dementia caregivers: A contextual examination. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 60, P287-P295) ecological contextual model, we examined 5 contexts that have contributed to dementia caregiver depression. A series of linear regressions were performed to determine correlates of depression. RESULTS: Rates of depressive symptoms were lower than those reported in most convenience studies. We found fewer depressive symptoms in caregivers with higher levels of education and larger social support networks, fewer health problems, greater likelihood of using problem-focused coping, and less likelihood of wishful thinking and with fewer behavioral disturbances in the persons with dementia. DISCUSSION: These results suggest that depression may be less prevalent in populations of dementia caregivers than in clinic-based samples, but that the correlates of depression are similar for both population and convenience samples. Interventions targeting individuals with small support networks, emotion-focused coping styles, poorer health, low quality of life, and those caring for persons with higher numbers of behavioral problems need development and testing.

Lifestyle behavior pattern is associated with different levels of risk for incident dementia and Alzheimer's disease: the Cache County study.

OBJECTIVES: To identify distinct behavioral patterns of diet, exercise, social interaction, church attendance, alcohol consumption, and smoking and to examine their association with subsequent dementia risk. DESIGN: Longitudinal, population-based dementia study. SETTING: Rural county in northern Utah, at-home evaluations. PARTICIPANTS: Two thousand four hundred ninety-one participants without dementia (51% male, average age 73.0 ± 5,7; average education 13.7 ± 4.1 years) initially reported no problems in activities of daily living and no stroke or head injury within the past 5 years. MEASUREMENTS: Six dichotomized lifestyle behaviors were examined (diet: high ≥ median on the Dietary Approaches to Stop Hypertension scale; exercise: ≥5 h/wk of light activity and at least occasional moderate to vigorous activity; church attendance: attending church services at least weekly; social Interaction: spending time with family and friends at least twice weekly; alcohol: currently drinking alcoholic beverages ≥ 2 times/wk; nonsmoker: no current use or fewer than 100 cigarettes ever). Latent class analysis (LCA) was used to identify patterns among these behaviors. Proportional hazards regression modeled time to dementia onset as a function of behavioral class, age, sex, education, and apolipoprotein E status. Follow-up averaged 6.3 ± 5.3 years, during which 278 cases of incident dementia (200 Alzheimer's disease (AD)) were diagnosed. RESULTS: LCA identified four distinct lifestyle classes. Unhealthy-religious (UH-R; 11.5%), unhealthy-nonreligious (UH-NR; 10.5%), healthy-moderately religious (H-MR; 38.5%), and healthy-very religious (H-VR; 39.5%). UH-NR (hazard ratio (HR) = 0.54, P = .028), H-MR (HR = 0.56, P = .003), and H-VR (HR = 0.58, P = .005) had significantly lower dementia risk than UH-R. Results were comparable for AD, except that UH-NR was less definitive. CONCLUSION: Functionally independent older adults appear to cluster into subpopulations with distinct patterns of lifestyle behaviors with different levels of risk for subsequent dementia and AD.

Challenges and psychosocial growth for older volunteers giving intensive humanitarian service.

PURPOSE OF THE STUDY: We conducted a qualitative study of 38 mid-late life volunteers in intensive humanitarian service to ascertain the challenges, personal changes, and benefits they experienced from their volunteer activities. Intensive volunteering was defined as service done on a 24-hr a day basis at a location away from home. DESIGN AND METHODS: In-depth interviews were conducted by phone or in person with each participant. Couples serving together were interviewed conjointly. Data were analyzed using McCracken's 5-step process for long interviews. RESULTS: Participants described and resolved many challenges including adjustment to new situations and cultures, work-related challenges, and readjustment to home. Consistent with Erikson's descriptions of care, volunteers described benefits of expanded social networks, increased closeness to spouses, and increased compassion and empathy for others. In terms of wisdom, they described altered personal perspectives, with lessened materialism and self-focus, greater appreciation of cultural differences, and finding existential meaning in service. IMPLICATIONS: Because of population aging and social service organizational contraction, humanitarian service organizations may rely more on older volunteers to fulfill their goals. A deeper understanding of the challenges, ways in which they were met, and perceived benefits of later life intensive volunteering can inform organizational efforts to recruit older adults and support them in diverse settings.

Cognitive stimulation and cognitive and functional decline in Alzheimer's disease: the cache county dementia progression study.

OBJECTIVES: To examine the association of engagement in cognitively stimulating activities with cognitive and functional decline in a population-based sample of incident Alzheimer's disease (AD). METHOD: After diagnosis, 187 participants (65% females) were followed semiannually for a mean 2.7 (SD = 0.4) years. Mean age and education were 84.6 (SD = 5.8) and 13.2 (SD = 2.9) years. Caregivers enumerated cognitively stimulating leisure activities via the Lifestyle Activities Questionnaire. Cognition was assessed using the Mini-Mental State Examination and functional ability via the Clinical Dementia Rating sum of boxes. Linear mixed models tested the association between stimulating activities and change over time in each outcome. Covariates were demographic factors, estimated premorbid IQ, presence/absence of the APOE ε4 allele, duration of dementia, level of physical activity, and general health. RESULTS: At initial assessment, 87% of participants were engaged in one or more stimulating activities, with mean (SD) activities = 4.0 (3.0). This number declined to 2.4 (2.0) at the final visit. There was a statistical interaction between dementia duration and number of activities in predicting rate of cognitive decline (p = .02) and overall functional ability (p = .006). DISCUSSION: Active involvement in cognitively stimulating pursuits may be beneficial for persons with AD.

Greater risk of dementia when spouse has dementia? The Cache County study.

OBJECTIVES: To examine the effects of caring for a spouse with dementia on the caregiver's risk for incident dementia. DESIGN: Population-based study of incident dementia in spouses of persons with dementia. SETTING: Rural county in northern Utah. PARTICIPANTS: Two thousand four hundred forty-two subjects (1,221 married couples) aged 65 and older. MEASUREMENTS: Incident dementia was diagnosed in 255 subjects, with onset defined as age when subject met Diagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised, criteria for dementia. Cox proportional hazards regression tested the effect of time-dependent exposure to dementia in one's spouse, adjusted for potential confounders. RESULTS: A subject whose spouse experienced incident dementia onset had a six times greater risk for incident dementia as subjects whose spouses were dementia free (hazard rate ratio (HRR)=6.0, 95% confidence interval (CI)=2.2-16.2, P<.001). In sex-specific analyses, husbands had higher risks (HRR=11.9, 95% CI=1.7-85.5, P=.01) than wives (HRR=3.7, 95% CI=1.2-11.6, P=.03). CONCLUSION: The chronic and often severe stress associated with dementia caregiving may exert substantial risk for the development of dementia in spouse caregivers. Additional (not mutually exclusive) explanations for findings are discussed.

Caregiver-recipient closeness and symptom progression in Alzheimer disease. The Cache County Dementia Progression Study.

Applying Rusbult's investment model of dyadic relationships, we examined the effect of caregiver-care recipient relationship closeness (RC) on cognitive and functional decline in Alzheimer's disease. After diagnosis, 167 participants completed up to six visits, observed over an average of 20 months. Participants were 64% women, had a mean age of 86 years, and mean dementia duration of 4 years. Caregiver-rated closeness was measured using a six-item scale. In mixed models adjusted for dementia severity, dyads with higher levels of closeness (p < .05) and with spouse caregivers (p = .01) had slower cognitive decline. Effect of higher RC on functional decline was greater with spouse caregivers (p = .007). These findings of attenuated Alzheimer's dementia (AD) decline with closer relationships, particularly with spouse caregivers, are consistent with investment theory. Future interventions designed to enhance the caregiving dyadic relationship may help slow decline in AD.

Quilting as age identity expression in traditional women.

A qualitative study using McCracken's (1988) multistage process for data analysis examined how women in three traditional cultures express themselves and their age identities in quilting. In semi-structured interviews, 10 Amish, 10 Appalachian, and 10 Latter-day Saint (Mormon) women discussed their quilting-related experiences, rewards that they receive from quilting, and the variety of ways in which quilting assists them in creating positive age identities. Results illustrated how quilting aided personal progress in building quilting-related skills and enlarging personal influence through owning quilting businesses, teaching and mentoring others, gaining respect as skilled artisans, and acting as guardians of family traditions.

Tending and befriending: the intertwined relationships of quilters.

Using the convoy model of social relations, we explored the contributions of quilting activities to the relationships of middle- and older-aged women in three distinct groups: Amish, Appalachian, and Latter Day Saints. Semi-structured interviews were conducted with ten women from each group and analyzed qualitatively using McCracken's five-step method for analysis of long interviews. We found that these women had considerable horizontal and vertical connections to others. Specifically, they exhibited generativity by teaching their skills to others, building bonds with grandchildren through quilting, and leaving legacies through their quilts. Many developed friendships with other quilters that provided social support to deal with life challenges. Additional study of the contributions of mid-late life women's leisure activities to their social milieu, personal development, and well-being is needed.