Relationship between dementia severity in older women and family caregivers’ preferences for shared decision making about breast cancer screening

Background/Objective: Mammography is one of the most effective ways to diagnose breast cancer early; however, its perceived benefits are complicated by terminal conditions such as dementia. By undergoing mammography, women with dementia risk treatment complications and false-positive results, which can exacerbate psychological distress. The lack of a standard of care confounds the individual roles of the patient, family caregiver, and physician in the decision-making process. This study evaluates the relationship between dementia severity and family caregiver preferences for shared decision making. Methods: Data were gathered from the Decisions about Cancer screening in Alzheimer’s Disease trial, which uses the Dementia Severity Rating Scale (DSRS) and a revised version of the Control Preferences Scale (CPS) to assess family caregiver preferences for decision-making as a dyad (patient and caregiver) and triad (patient, caregiver, and physician). Two multinomial logistic regression models assessed the relationship between DSRS and CPS categories (active, passive, and collaborative), while controlling for the caregivers’ age, gender, education, relationship to patient, self-perceived income, and race. Both models used the “active” group as the baseline; however, Model 1 examined preferences as a dyad and Model 2 as a triad. Results: Model 1 found a statistically significant association between dementia severity and a collaborative approach (p<0.001), and between dementia severity and a passive approach (p=0.014). For every one-unit increase in DSRS score, the odds of being in the collaborative group decreased by 0.083 and the odds of being in the passive group decreased by 0.085. There was no statistically significant association between dementia severity and decision-making preferences in Model 2. Clinical Significance: The association between dementia severity and family caregiver decision-making preferences supports the need for a standard of care regarding breast cancer screening in women with dementia.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Background/Objective: Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of other conditions. The primary objective of this analysis is to determine the relationship between caregiver anticipatory grief and dementia severity, as measured by the Anticipatory Grief Scale (AGS) and Dementia Severity Rating Scale (DSRS), respectively. Methods: Multiple regression analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) trial; an RCT testing an ACT intervention for ADRD caregiver anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient and clinically significant anxiety (GAD7 score >10). Results: The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature. Multiple regression models showed a caregivers’ anticipatory grief is not significantly associated with the patients’ dementia severity as measured by the Dementia Severity Rating Scale (t=0.87). Results also revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (t=< 0.1). Conclusion and Potential Impact: Understanding these relationships contributes to better understanding ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

One-Year Change in Locus of Control among People with Dementia

<b><i>Introduction:</i></b> Knowledge of how perceptions of personal control change over time may provide valuable insights into how people cope with having dementia. The present study aimed to examine change in locus of control over a 12-month period in persons with dementia. <b><i>Method:</i></b> The study included 52 participants with dementia. Locus of control was measured with the Locus of Control of Behavior Scale (LoCB), with higher scores indicating a more external locus of control, interpreted as perceiving less personal control. A ≥5% change on the LoCB was considered clinically meaningful. We recorded sociodemographic characteristics and assessed dementia severity, cognition, ability to function independently in daily activities and physical self-maintenance, depressive symptomatology, and number of prescribed medications. Analyses were performed to examine differences between those with increases (more external) or decreases (less external) in the LoCB score after 12 months and to examine associations between baseline variables and change in the LoCB score. <b><i>Results:</i></b> The mean LoCB score for the total sample did not change after 12 months (baseline mean 29.33 vs. follow-up mean 30.33, <i>p</i> = 0.553); however, 2 subgroups emerged. Using the ≥5% cutoff revealed that the LoCB score changed for 92.3% of the sample, becoming less external (lower LoCB) for 21 participants and more external (higher LoCB) for 27 participants. At baseline, the mean LoBC score was higher in the group that became less external (33.81 vs. 24.56), <i>p</i> = 0.006, while this was reverse at follow-up (23.57 vs. 34.41), <i>p</i> = 0.001. Dementia severity and dependence in physical self-maintenance increased during the 12 months in both groups. Among those becoming more external, we also found a decline in cognition (<i>p</i> = 0.002), an increase in dependence in daily activities (<i>p</i> = 0.003), an increase in the use of prescribed medication, and a decrease in depressive symptomatology (<i>p</i> = 0.003). The baseline LoCB score was the only variable associated with 12-month change in LoCB scores (<i>p</i> = 0.001). <b><i>Conclusion:</i></b> Most participants showed a clinically meaningful change in locus of control after 12 months. Those with more signs of dementia progression reported a decrease in personal control but also a decrease in depressive symptoms. These findings are interesting for our understanding of coping but must be replicated with a larger sample.

The Relationship Between Dementia Severity & Caregiver Preferences for Decision Making Role Regarding Mammography

The incidence of Alzheimer’s disease and related dementias (ADRD) and breast cancer increases with age. Despite being one of the most effective ways to diagnose breast cancer early, mammography in ADRD patients comes with an increased risk of treatment complications and false-positive results. Family caregivers are often involved in the decision-making process, and this study evaluates the relationship between dementia severity and caregiver preferences when making decisions about mammography with the patient alone, and with the patient and doctor. We included 181 caregivers from the Decisions about Cancer screening in Alzheimer’s Disease trial, which uses the Dementia Severity Rating Scale (DSRS) to assess dementia severity and a modified Control Preferences Scale (CPS) to assess each caregiver’s preferred decision-making approach. Multinomial logistic regression models evaluated the relationship between DSRS and CPS categories (active, passive, and collaborative), while controlling for the caregivers’ age, sex, race, education, and relationship to patient. Model 1 examined the caregivers’ preferred role with the patient, and it found a significant association between increased dementia severity and preference for a collaborative approach (p&lt;0.001) or passive approach (p&lt;0.05) compared to an active approach. Model 2 did not find a significant association between dementia severity and the caregivers’ preferred role when making decisions with the patient and doctor; however, those with increased age and education were more likely to prefer an active role. The association between dementia severity, caregiver characteristics, and decision-making preferences supports the need for approaches to support ADRD caregivers with medical decision making.

Association of Dementia Severity and Assistances Needs on Missed Home Health Visits

Individuals with Alzheimer’s Disease and Related Dementias (ADRD) experience barriers to accessing health care services, including services provided during home health care. Additionally, it is not clear if people with ADRD who are admitted to home health care receive all the services needed to maximize their outcomes. Barriers to receiving the optimal care can include the presence or absence of a care giver, behavioral and psychological symptoms of ADRD, or therapists lacking the skills needed to effectively engage patients in therapy sessions. These barriers may vary dependent on the patient’s ADRD severity. The purpose of this study was to examine the relationship between dementia severity and early discharge from home health care. This was a retrospective study of 142,376 Medicare beneficiaries with ADRD who received home health care between October 2016 and September 2017. Early discharge was defined as discharge from home health with more than two missed visits. Early discharge rates were calculated, and multilevel logistic regression was used to estimate the relative risk (RR) of early discharge, by dementia severity level, adjusted for patient and clinical characteristics. 10.4% of beneficiaries had an early discharge. Dementia severity was not associated with risk of early discharge. However, level of medication assistance needed was found to be associated with risk of early discharge (RR=0.849; 95% CI 0.759 - 0.948). Medication management may impact a patient’s ability to adequately attend and engage in home health therapy services. Further studies are needed to better delineate the interaction between medication management and early discharge.

Cognitive-Behavioral Dementia Caregiving Styles: Associations With Care Stress and Well-Being

While Stress Process Models of family caregiving have been examined extensively, little focus has been placed on caregiver’s actual management of care. We consider whether caregiving style classified previously through k-modes machine learning models and based on cognitive-behavioral approaches to care impact caregivers’ experiences of care-related stress and well-being. The three previously identified styles include: Adapters- strong dementia understanding and adaptability, encouraging behavioral approach; Managers- poor dementia understanding and adaptability, critical behavioral approach; and Avoiders- moderate dementia understanding and adaptability, passive behavioral approach. Participants included 100 primary family caregivers for PWDs who were on average 64 years old, 74% female, and 18% non-White. Utilizing linear regressions, each caregiving style was considered a key predictor (reference: Adapters) of the Zarit Burden Interview (ZBI), Caregiver Assessment of Function and Upset (CAFU) upset score, Neuropsychiatric Inventory (NPI-C) distress scale, and Positive and Negative Affect scale (PANAS) controlling for dementia severity, care duration, co-residency, and demographics. Relative to Adapters, Managers had more CAFU upset (β=0.4, p&lt;.001), more NPI-C distress (β=0.4, p&lt;.001), and greater burden (ZBI) (β=0.3, p&lt;.001). Avoiders showed significantly greater CAFU upset than Adapters (β=0.2, p&lt;.05). Positive affect was not associated with caregiving style. Caregiving styles associated with less understanding and adaptability and a more critical behavioral approach showed worse caregiving outcomes accounting for dementia severity. Results can inform a nuanced approach to tailoring and targeting interventions based on caregiver styles with the goal of reaching caregivers at risk for poor outcomes and ultimately leading to significant public health impact.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of those with mild cognitive impairment, implying a relationship between disease severity and caregiver anticipatory grief. Analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregiver (TACTICs) trial; an RCT evaluating an ACT intervention for ADRD caregivers with anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient, and clinically significant anxiety (GAD7 score &gt;10). The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature (74.9). Using multiple regression models, we determined a caregivers’ anticipatory grief, as measured by the anticipatory grief scale, is not significantly associated with the patients’ dementia severity, as measured by the Dementia Severity Rating Scale (DSRS) (p=0.66), Results revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (p&lt; 0.01). Understanding these relationships contributes to a better understanding of ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Heterogeneity in Reports of Dementia Disease Duration and Severity: A Review of the Literature

Background: The burden of dementia is changing due to population aging and changes in incidence and risk factor profiles. Reliable projections of future disease burden require accurate estimates of disease duration across different stages of dementia severity. Objective: To provide an overview of current evidence on severity stage and disease duration in patients with dementia. Methods: We reviewed the literature on duration of mild cognitive impairment (MCI), dementia, and various dementia severity stages. Data on study setting, country, sample size, severity stages, dementia type, and definition of disease duration was collected. Weighted averages and Q-statistics were calculated within severity stages and duration definitions. Results: Of 732 screened articles, 15 reported the duration of one or more severity stages and only half of those reported severity stage onset to conversion to the following stage. In those studies, MCI, very mild dementia, and mild dementia stages lasted 3-4 years and moderate and severe dementia stages lasted 1-2 years. Information on the disease duration was reported in 93 (13%) of screened articles and varied from 1 to 17 years. Reporting of dementia severity stage and disease duration in the literature was highly heterogeneous, which was accounted for only in part by dementia type, study setting, or continent of data collection. Conclusion: The duration of dementia disease stages shortens with advancing stage. However, reliable modelling of future dementia burden and informing of intervention strategies will require more consistently reported duration estimates from studies that follow individuals longitudinally throughout their entire disease course.