Kathleen W. Piercy

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.

Educational and Occupational Aspirations of Latino Youth and Their Parents

In-depth interviews of 10 rural Latino family triads (mother, father, and adolescent) investigated the educational and occupational aspirations of parents and youth, and factors affecting those aspirations. Using a content analysis of the interview scripts, several themes emerged that described these families’ experiences. In some instances, Latino parent aspirations were found to transfer to their youth. However, only one half of the parents were aware of their youth’s aspirations, and most had not discussed them with their youth. Youth and parents articulated several barriers to achieving higher educational or occupational aspirations. Implications for programmatic initiatives and research are delineated.

Caregiver–Recipient Closeness and Symptom Progression in Alzheimer Disease. The Cache County Dementia Progression Study

Applying Rusbults investment model of dyadic relationships, we examined the effect of caregiver-care recipient relationship closeness (RC) on cognitive and functional decline in Alzheimers 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 Alzheimers 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.

Theorizing about Family Caregiving: The Role of Responsibility.

Studies of family caregiving to older parents have focused on filial responsibility. In this study, the meaning of familial responsibility to older members was investigated by interviewing two or three generations in families providing assistance to older family members in a noninstitutional setting. Forty-three members of 15 families discussed the meaning of responsibility to older relatives who needed assistance. The data suggest that familial responsibility encompasses both responsibility to the older person and responsibility to other family members and that shared responsibility among several family members is not uncommon. Implications for future research and provision of services to families are discussed. Key Words: caregiving theory, familial responsibility, family caregiving, inter-generational relations. Researchers have documented extensive family involvement in the provision of assistance to older family members who are frail or ill (Stone, Cafferata, & Sangl, 1987). Many families make a concerted effort to keep their loved ones at home and out of institutions for as long as possible, a strong indication that families feel considerable responsibility for the care of their elderly members. Despite emphasis in the gerontological literature on the activities of primary caregivers, several family members are frequently involved in caregiving activities (Keith, 1995; Mellins, Blum, Boyd-Davis, & Gatz, 1993). When adult children provide assistance to their parents, daughters and daughters-in-law usually assume the role of primary caregiver, and sons and sons-in-law provide supplemental help to their spouses or sisters (Matthews & Rosner, 1988; Stoller, 1990; Stone et al., 1987). The extent to which grandchildren assist their caregiving parents or help their grandparents directly is not well known. However, one recent study reported that in some families grandchildren provided assistance to their grandparents that included handling legal matters, running errands, and giving injections, thereby sharing in the caregiver role with their parents (Pyke & Bengtson, 1996). Results of these studies suggest the importance of examining the role of multiple and extended family members to obtain a more complete picture of how families provide care to older members. Several researchers (Cicirelli, 1992; Dwyer & Coward, 1992) have urged that caregiving research focus on the family network in order to understand how it operates to provide support and assistance to its older members. In addition, there is a need to develop a theory of family caregiving. Scholars who have proposed theoretical constructs related to family caregiving have called attention to the importance of the familys perception of responsibility to its older members as a factor that might predict what families will do for their dependent elders (Brubaker & Brubaker, 1989). Rossi and Rossi (1990) examined perceptions of responsibility among family members in potential caregiving situations. In their intergenerational study, they asked participants to rate the degree of felt obligation to different family members who needed assistance and who varied in their degree of kinship to the respondent. They found that the degree of relatedness between respondent and kin predicted the degree of obligation felt by the respondent. Felt obligation was greatest toward ones parents and children, persons labeled as primary kin (Rossi, 1993). A study by Finley, Roberts, and Banahan (1988) explored factors that might affect adult childrens development of feelings of obligation to care for aged parents and parents-in-law. They found that the factors most salient to the development of filial responsibility varied by the gender of the respondent and were different, depending on whether the recipients of care were mothers, fathers, or in-laws. They concluded that studies of filial obligation toward aged parents should include an examination of the childs gender and the type of parent in order to produce valid assessments. …

When It Is More Than a Job Close Relationships between Home Health Aides and Older Clients

Objectives:A qualitative study was conducted to investigate the types of relationships that were formed between older clients and their home health aides and to identify structural characteristics and interactive processes that facilitated various types of relationships. Methods:Using semistructured interviews, members of 16 families and their home health aides described the relationships that developed between clients and aides and the conditions and contexts that facilitated or inhibited close relationship development. Data were coded and analyzed using a multistage process. Results:Most relationships between aides and older clients were described as friendship or like one of the family, with friendship occurring most often. Several structural conditions and numerous interactive friendship processes were identified. The cognitive process of boundary setting discriminated between friendships and family-like relationships. Discussion:Results show support for socioemotional selectivity theory and highlight the benefits of close relationships for older homebound adults and their home health aides.

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 caregivers risk for incident dementia.

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 Alzheimers 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.

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

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.

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.

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.