Association of Race,Ethnicity, Education,and Neighborhood Context With Dementia Prevalence and Cognitive Impairment Severity Among Older Adults Receiving Medicaid-Funded Home and Community-Based Services

ObjectiveWhile racial, ethnic, and socioeconomic group disparities in cognitive impairment and dementia prevalence are well-documented among community-dwelling older adults, little is known about these disparity trends among older adults receiving Medicaid-funded home- and community-based services (HCBS) in lieu of nursing home admission. The authors determined how dementia prevalence and cognitive impairment severity compare by race, ethnicity, educational attainment, and neighborhood context in a Medicaid HCBS population.Design/SettingA cross-sectional study in Connecticut.ParticipantsAdults age ≥65 in the HCBS program, January-March 2019 (N = 3,520).MeasurementsThe data source was Connecticut's HCBS program Universal Assessment tool. The authors employed two outcomes: Cognitive Performance Scale (CPS2), a 9-point measure ranging from cognitively intact-very severe impairment; and presence or not of either diagnosed dementia or CPS2 score ≥4 (major impairment). Neighborhood context was measured using the Social Vulnerability Index (SVI).ResultsCohort characteristics: 75.7% female; mean(SD) age = 79.1(8.2); Non-Hispanic White = 47.8%; Hispanic = 33.6%; Non-Hispanic Black = 15.9%. Covariate-adjusted multivariate analyses revealed no dementia/major impairment prevalence differences among White, Black, and Hispanic individuals, but impairment severity was greater among Hispanic participants (b = 0.22; p = 0.02). People with more than HS education had less severe impairment (b = −0.12; p <0.001) and lower likelihood of dementia/major impairment (AOR = 0.61; p <0.001). Dementia/major impairment likelihood and impairment severity were greater in less socially vulnerable neighborhoods.ConclusionRacial and ethnic group differences in cognitive impairment are less pronounced in Medicaid-funded HCBS cohorts than in other community-dwelling older adult cohorts. SVI results suggest that, among other possible explanations, older adults with dementia may move to lower social vulnerability neighborhoods where supportive family members reside.     

Are Care-Recipient Outcomes Attributable to Improved Caregiver Well-Being? A Cluster-Randomized Controlled Trial of Benefit-Finding Intervention

ObjectivesThe benefit-finding therapeutic (BFT) intervention, training cognitive reappraisal, and alternative thinking to construct positive aspects of caregiving have been found to reduce caregiver depression. This study examines BFT effects on care-recipient outcomes via reduced caregiver depression.DesignCluster-randomized double-blind controlled trial.SettingSocial centers and clinics.ParticipantsA total of 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18+, 2) without cognitive impairment, 3) providing ≥14 care hours weekly to a relative with mild-to-moderate Alzheimer's disease, and 4) scoring ≥3 on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having Parkinsonism or other forms of dementia.InterventionsBFT was evaluated against two forms of psychoeducation—standard and simplified (lectures only) psychoeducation.MeasurementsCare-recipient outcomes included neuropsychiatric symptoms (NPS), functional impairment, and global dementia severity (Clinical Dementia Rating sum-of-box), measured at baseline, postintervention, and 4- and 10-month follow up.ResultsMixed-effects regressions showed a significant effect on NPS when compared with simplified psychoeducation only, with BFT participants reporting fewer NPS (especially mood symptoms) at 4-month follow-up (d = -0.52). Furthermore, longitudinal path analysis (using changes in caregiver depression scores at postintervention to predict changes in care-recipient NPS at follow-up) found that this effect was mediated by improved caregiver depression. No other intervention or mediation effects were found or were consistent across analyses.ConclusionsLess depressed caregivers may be able to provide better care and more positive interactions, leading to reduced NPS in care-recipients. However, this benefit of BFT was limited to the comparison with simplified psychoeducation only.     

Association of Hearing Loss With Neuropsychiatric Symptoms in Older Adults With Cognitive Impairment

Neuropsychiatric symptoms (NPS) in persons with dementia (PWD) are common and can lead to poor outcomes, such as institutionalization and mortality, and may be exacerbated by sensory loss. Hearing loss is also highly prevalent among older adults, including PWD.ObjectiveThis study investigated the association between hearing loss and NPS among community- dwelling patients from a tertiary memory care center.Design, Setting, and ParticipantsParticipants of this cross-sectional study were patients followed at the Johns Hopkins Memory and Alzheimer's Treatment Center who underwent audiometric testing during routine clinical practice between October 2014 and January 2017.Outcome MeasurementsIncluded measures were scores on the Neuropsychiatric Inventory–Questionnaire and the Cornell Scale for Depression in Dementia.ResultsParticipants (n = 101) were on average 76 years old, mostly female and white, and had a mean Mini-Mental State Examination score of 23. We observed a positive association between audiometric hearing loss and the number of NPS (b = 0.7 per 10 dB; 95% confidence interval [CI]: 0.2, 1.1; t = 2.86; p = 0.01; df = 85), NPS severity (b = 1.3 per 10 dB; 95% CI: 0.4, 2.5; t = 2.13; p = 0.04; df = 80), and depressive symptom severity (b = 1.5 per 10 dB; 95% CI: 0.4, 2.5; t = 2.83; p = 0.01; df = 89) after adjustment for demographic and clinical characteristics. Additionally, the use of hearing aids was inversely associated with the number of NPS (b = ?2.09; 95% CI ?3.44, ?0.75; t = ?3.10; p = 0.003; df = 85), NPS severity (b = ?3.82; 95% CI ?7.19, ?0.45; t = ?2.26; p = 0.03; df = 80), and depressive symptom severity (b = ?2.94; 95% CI: ?5.93, 0.06; t = 1.70; p = 0.05; df = 89).ConclusionAmong patients at a memory clinic, increasing severity of hearing loss was associated with a greater number of NPS, more severe NPS, and more severe depressive symptoms, while hearing aid use was associated with fewer NPS, lower severity, and less severe depressive symptoms. Identifying and addressing hearing loss may be a promising, low-risk, non-pharmacological intervention in preventing and treating NPS.     

Caregiver profiles in dementia related to quality of life,depression and perseverance time in the European Actifcare study: the importance of social health

ABSTRACT

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare.

Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time.

Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’.

Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.     

Depression among family caregivers of community-dwelling older people who used services under the Long Term Care Insurance program: a large-scale population-based study in Japan

Objective: To identify predictors for depression among family caregivers of community-dwelling older people under the Long Term Care Insurance (LTCI) program in Japan through a large-scale population-based survey.

Method: All 5938 older people with disabilities, using domiciliary services under the LTCI in the city of Toyama, and their family caregivers participated in this study. Caregiver depression was defined as scores of ≥16 on the Center for Epidemiological Studies Depression Scale (CES-D). Other caregiver measures included age, sex, hours spent caregiving, relationship to the care recipient, income adequacy, living arrangement, self-rated health, and work status. Care recipient measures included age, sex, level of functional disability, and severity of dementia. The data from 4128 pairs of the care recipients and their family caregivers were eligible for further analyses. A multiple logistic regression analysis was used to examine the predictors associated with being at risk of clinical depression (CES-D of ≥16).

Results: Overall, 34.2% of caregivers scored ≥16 on the CES-D. The independent predictors for depression by logistic regression analysis were six caregiver characteristics (female, income inadequacy, longer hours spent caregiving, worse subjective health, and co-residence with the care recipient) and one care-recipient characteristic (moderate dementia).

Conclusion: This is one of the first population-based examinations of caregivers of older people who are enrolled in a national service system that provides affordable access to services. The results highlighted the importance of monitoring caregivers who manifest the identified predictors to attenuate caregiver depression at the population level under the LTCI.     

Psychiatric morbidity and its correlates among informal caregivers of older adults

ObjectiveThis present study estimated the psychiatric morbidity among informal caregivers of older adults and investigated its association with their socio-demographic factors and older adult's health status, including dementia, depression and physical health conditions.MethodsData from a national cross-sectional survey were used. For each participating older adult, an informal caregiver who ‘knew the older adult best’ and was aware of their health condition, was also interviewed to collect information on the older adults' care needs, and behavioral and psychological symptoms of dementia (BPSD). Data from 693 pairs was used. Informal caregivers were administered the Self Reporting Questionnaire (SRQ)-20 and psychiatric morbidity was defined as those with a total SRQ score of ≥ 8. Measures included informal caregivers' socio-demographic characteristics, assessment of dementia and depression in the older adults and self-report on their lifetime and current physical conditions. The association of socio-demographic characteristics, health conditions, care assistance and BPSD was investigated using backward stepwise logistic regression analysis where psychiatric morbidity (total SRQ score < or ≥ 8) was used as a dependent variable and all other variables served as independent covariates.ResultsAmong informal caregivers, 8.8% exhibited psychiatric morbidity. Higher proportions of spousal caregivers and caregivers of older adults having more care needs and BPSD exhibited psychiatric morbidity. After adjusting for all covariates, caregivers' marital status, and the presence of BPSD and dementia in the older adults were identified as the strongest correlates of caregivers' psychiatric morbidity. The prevalence of psychiatric morbidity was 10%, 13.9% and 12.7% respectively in these groups. Married caregivers had higher odds of psychiatric morbidity (OR 2.50, 95% CI: 1.13–5.52). In addition, caregivers of older adults' with any BPSD (OR 5.87, 95% CI: 2.60–13.24) and dementia (OR 2.28, 95% CI: 1.23–4.20) were also associated with higher odds of psychiatric morbidity.ConclusionInformal caregivers' marital status and presence of any BPSD and dementia in the older adults in their care were identified as the strongest correlates of caregivers' psychiatric morbidity. Clinicians should be cognizant of the risk in this group of caregivers and assess and intervene to alleviate caregivers' psychological problems.     

Measuring change in perceived well‐being of family caregivers: validation of the Spanish version of the Perceived Change Index (PCI‐S) in Chilean dementia caregivers

Objective

Few instruments evaluate family caregiver perceptions of challenges caring for persons with dementia and improvement or worsening in these areas. To address this measurement gap, we examine psychometric properties of a Spanish version of the 13‐item Perceived Change Index (PCI‐S), originally validated with English‐speaking caregivers.

Methods

Cross‐sectional study with 94 caregivers of persons with mild to moderate dementia in Chile. Interviews included caregiver demographics, burden, health perception, distress with behaviours, dementia severity, behavioural symptoms and functionality.

Results

Caregiver mean age was 55.9 (SD ± 14.14) years and mean years caregiving was 3 (SD ± 2.60). The scale had strong internal consistency (Cronbach α = 0.94), and inter‐observer consistency (CCI = 0.99; 95% CI = 0.95–0.99). Two factors were identified: Management skills (α = 0.89), and somatic well‐being and affects (α = 0.92), explaining 63% of scale variance. Significant associations supporting convergent validity were observed for PCI‐S and subscales with caregiver burden (p < 0.01), health perceptions (p < 0.01), depressive symptoms (p < 0.01) and distress with behaviours (p < 0.01); and in persons with dementia, functionality (p < 0.05), dementia severity (p < 0.05) and behavioural symptoms (p < 0.01) in expected directions. In logistic regression models, perceived worsening (PCI‐S and subscale scores) was associated with more behavioural symptoms (OR = 1.07; 95% CI = 1.03–1.15) and caregiver burden (OR = 1.48; 95% CI = 1.18–1.86); whereas perceived improvement was associated with higher physical functioning (OR = 0.95; 95% CI = 0.91–0.99) in persons with dementia. PCI‐S scores were not associated with socio‐demographic characteristics reflecting divergent validity.

Conclusions

Spanish version of the 13‐item Perceived Change Index and its two‐factor solution is a valid and reliable measure with clinical utility to detect improvement or worsening in caregivers concerning daily care challenges. Copyright © 2017 John Wiley & Sons, Ltd.     

Caregiver strain in Parkinson's disease: National Parkinson Foundation Quality Initiative Study

BackgroundNational Parkinson Foundation Quality Improvement Initiatives (NPF-QII) is the first large scale data-driven initiative in Parkinson's disease (PD) aimed at identifying variables predicting best care models and outcomes.ObjectiveTo determine what measures of PD disability, demographics, and patient quality of life are associated with caregiver strain among caregivers of patients with PD.MethodsAll PD patients at 18 participating sites are eligible for enrollment into the NPF-QII registry. Dataset includes multidimensional measures of disease severity, health care utilization, PD quality of life questionnaire-39 (PDQ-39) and multidimensional caregiver strain inventory (MCSI). A univariate as well as an adjusted analysis was performed to examine the relationship between caregiver strain and variables of PD disability.ResultsThe single best factor associated with high caregiver strain was the PDQ-39 total score (c-statistic of continuous variable = 0.792, p < 0.001) followed by the PDQ-mobility subscore (c = 0.776, p < 0.001). PDQ-39 ≥ 47 was the optimal cut off associated with a high caregiver strain with a sensitivity = 83% and specificity = 64%. A multiple logistic regression model with stepwise selection showed that in addition to PDQ-39 ≥ 47 (OR and 95% confidence interval = 5.1 (3.2, 8.2), the following subject characteristics were associated with high caregiver strain: (model p < 0.001, c = 0.838): Hoehn and Yahr stage >3 (2.0 (1.3, 3.1)), presence of concomitant medications such as antidepressants (2.1 (1.5, 3.1)) and antipsychotics (2.5 (1.5, 4.2)), social worker visits (1.6 (1.2, 2.1)), male gender (2.3 (1.5, 3.5)), and decreased verbal fluency (0.95 (0.92, 0.98)).ConclusionsThere is a high prevalence of caregiver strain in PD. PDQ-39 total score has the strongest association with high levels of caregiver strain. These results could guide clinicians in the assessment of caregivers at risk.     

‘I shouldn't have had to push and fight’: health care experiences of persons with dementia and their caregivers in primary care

Objectives: Most persons with dementia (PWD) receive the majority of their care from primary care providers (PCPs). A number of challenges have been identified with providing quality dementia care in primary care from the perspective of PCP. However, less is known of the primary care health care experience (HCE) of PWD and their caregivers. We examined the primary care HCE of PWD and their caregivers in Ontario, Canada.

Methods: Participants were recruited through local Alzheimer Society chapter support groups. A semi-structured interview guide was developed. Focus groups were audio recorded, transcribed verbatim, anonymized, and then reviewed and coded for themes independently by two study authors. Thematic analysis was conducted to identify major themes and a model proposing the common components of a perceived positive HCE was created.

Results: Five focus groups were conducted across urban and rural settings. Each focus group included both PWD and their caregivers and a total of eight PWD and 21 caregivers participated. Four main themes emerged from the analysis: communication, caregiver as manager, system navigation, ease of access. The model for positive HCE included: an informed patient/caregiver; supported patient/caregiver; strong PCP-patient/caregiver relationship; an accessible provider; a knowledgeable provider; and strong communication by the provider.

Conclusion: The HCE of PWD and their caregivers is complex and a number of factors which are potentially modifiable by PCP may improve the HCE for the growing number of PWD in primary care. Understanding these experiences may help to identify strategies to improve care and patient and provider experiences.     

Psychometric properties of the Insomnia Severity Index in a sample of family dementia caregivers

Study objectivesFamily caregivers of people with dementia frequently report sleep problems that are linked to depressive and anxious symptoms. However, data are needed regarding the psychometric properties of specific measures of sleep problems in caregiving populations. The aim of this study is to analyse the psychometric properties of the Insomnia Severity Index (ISI; Morin, 1993) in a Spanish dementia caregiver sample.Methods271 participants took part in face-to face interviews where, along with sociodemographic variables, caregivers' sleep problems, depressive and anxious symptoms were measured. The psychometric properties of the ISI were analysed through Confirmatory Factor Analysis (CFA) and analysis of the internal consistency and convergent and criterion validity.ResultsThe Spanish version of the Insomnia Severity Index showed adequate indices of internal consistency (Cronbach's alpha = 0.78) in our sample of family caregivers of people with dementia. A one-factor structure provided a better fit to the data than two- and three-factor structures. The ISI was significantly associated with lower sleep quality, less average sleep time per day and lower self-perception of vitality, as well as with higher depressive and anxious symptoms. Differences in ISI scores were found between people with and without depressive and anxious symptoms. Statistically significant gender-based differences in sleep problems were also found, with female caregivers showing higher sleep problems.ConclusionsThe ISI is a reliable and valid instrument to assess the subjective severity of sleep problems in the family dementia caregiver population and may be a useful instrument in intervention and research settings. Additional evidence was also provided of the importance of considering sleep problems in the studied population.     

Racial and ethnic differences in psychotropic medication use among community-dwelling persons with dementia in the United States

Objectives: Little is known about the patterns of psychotropic medication use in community-dwelling minority persons with dementia (PWD). The purpose of this study was to investigate racial/ethnic differences in psychotropic medication use across a diverse population of community-dwelling PWD and to examine the extent to which caregiver characteristics influence this use.

Method: Data were drawn from the baseline assessment of the Resources for Enhancing Alzheimer's Caregiver Health II trial. Generalized linear models were used to identify racial/ethnic differences in psychotropic medication use. Akaike Information Criterion (AIC) model selection was used to evaluate possible explanations for observed differences across racial/ethnic group.

Results: Differences in anxiolytic and antipsychotic medication use were observed across racial/ethnic groups; however, race/ethnicity alone was not sufficient to explain those differences. Perceptions of caregiving and caregiver socioeconomic status were important predictors of anxiolytic use while PWD characteristics, including cognitive impairment, functional impairment, problem behavior frequency, pain, relationship to the caregiver, sex, and age were important for antipsychotic use.

Conclusion: Racial/ethnic differences in psychotropic medication use among community-dwelling PWD cannot be explained by race/ethnicity alone. The importance of caregiver characteristics in predicting anxiolytic medication use suggest that interventions aimed at caregivers may hold promise as an effective alternative to pharmacotherapy.     

Association of physical functioning of persons with dementia with caregiver burden and depression in dementia caregivers: an integrative data analysis

Objectives: To determine whether caregiver relationship and race modify associations between physical functioning of persons with dementia (PWD) and their caregiver's burden and general depressive symptoms.

Method: We pooled data from four behavioral intervention trials (N = 1,211). Using latent growth modeling, we evaluated associations of PWD physical functioning with the level and rate of change in caregiver burden and caregivers' general depressive symptoms and stratified these associations by caregiver relationship and race.

Results: PWD were, on average, 81 years old (68% female) with mean follow-up of 0.5 years. More baseline PWD physical impairment was associated with less worsening in caregiver burden over time (β = ?0.23, 95% CI: ?0.29, ?0.14), but this relationship was not modified by caregiver characteristics. More impaired baseline PWD physical functioning was not associated with changes in depressive symptoms (β = ?0.08, 95% CI: ?0.17, 0.00), but was associated with less worsening in depressive symptoms among spousal (β = ?0.08, 95% CI: ?0.17, 0.00) and non-white (β = ?0.08, 95% CI: ?0.17, 0.00) caregivers.

Conclusions: Dementia caregivers may experience reduced caregiver-related burden because of adjustment to PWD functional status, while spousal and non-white caregivers may experience less depressive symptoms resultant of adjustment to functional status.     

Falls of the elderly are associated with burden of caregivers in the community

BACKGROUND: Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. METHODS: A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). RESULTS: A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. CONCLUSION: Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.     

A counseling intervention for caregivers: effect on neuropsychiatric symptoms

BACKGROUND: In Thailand, family caregivers have an important role in delivering care to patients with dementia. Most patients with dementia in Thailand and also in Western societies live in the community. Training caregivers may improve care of dementia patients. OBJECTIVE: We performed a treatment study of a six-month caregiver intervention with group counseling and support with provision of techniques to cope with non-cognitive symptoms of patients with dementia. We hypothesized that this caregiver intervention with group counseling and support would reduce behavioral and neuropsychiatric symptoms in the demented patients. SUBJECTS AND METHODS: We conducted a parallel group intervention study. A manual for group counseling and support was developed focusing on education regarding dementia, behavioral analysis and intervention, and environmental adaptation. Fifty nonprofessional caregivers-25 from the control group and 25 from the study group-of patients with dementia from the memory clinic at Siriraj Hospital were alternately assigned to each group as they presented to the clinic if they met the inclusion criteria and agreed to participate. The Thai Mental State Examination (TMSE) was used to assess dementia severity. Forty-five minute counseling sessions were conducted every 6-8 weeks for 6 months and assessments were conducted at 3 months and 6 months. The primary outcome measure was the Neuropsychiatric Inventory (NPI). RESULTS: A paired samples analysis of the NPI scores demonstrated a significant change of the total NPI scores at the end of six month from baseline in the intervention group (P = 0.045). Change from baseline of the comparison group was not significant. There was a trend towards improvement of the TMSE scores between the two groups at month six (p = 0.061). The result favored the treatment group. CONCLUSION: This study provided evidence of the utility of a non-pharmacologic intervention using group counseling in an out-patient setting for caregivers of patients with dementia.     

The burden of spousal caregiving: A preliminary psychometric evaluation of the German version of the Zarit Burden Interview

Objectives: Despite a rapid increase in studies dealing with dementia caregivers in Europe, a valid German version of the most widely used measurement of caregiver burden (Zarit Burden Interview) has not yet been published. The purpose of this study is to evaluate the psychometric properties of the German Zarit Burden Interview (G-ZBI).

Method: Twenty-eight community-dwelling older couples with the husband suffering from dementia and the wife being the primary caregiver participated in this study. The G-ZBI and related constructs were assessed in order to test for reliability and construct validity.

Results: The G-ZBI revealed psychometric properties comparable with those of the original instrument and empirically validated translations. Results demonstrated high internal consistency (Cronbach's α 0.92) and good validity due to strong correlations with caregiver life satisfaction and depression, as well as patients’ dependency, neuropsychiatric symptoms, and dementia severity.

Conclusion: The psychometric qualities of the G-ZBI indicate that it is both a reliable and valid instrument to assess caregiver burden and to detect highly stressed individuals.     

Adaptation and Pilot Study of a Behavioral Intervention Targeting Morning Activation Deficits in Dementia Caregivers: Scheduling Activity and Monitoring Mornings (SAMM)

ObjectivesMorning activation deficits (MADs) correlate with depression symptom persistence in older dementia caregivers. To clarify the potential of MADs as a target for depression interventions, we aimed to: 1) adapt an existing behavioral activation program, Engage therapy, to target mornings; and 2) evaluate effects on self-reported MADs and depression symptoms.MethodsWhile trialing the 9-week Engage adaption (targeting mornings) in six older dementia caregivers, we incorporated feedback and finalized an adapted program called Scheduling Activity and Monitoring Mornings (SAMM). We delivered the SAMM protocol to 13 dementia caregivers (all female; mean age = 69, standard deviation = 7). We report modifications made/rationale, as well as changes in subjective MADs (relevant items from the Composite Scale of Morningness) and depression symptoms (Patient Health Questionnaire – 9).ResultsUsing caregiver and expert input, we adapted the protocol to: include educational materials/content describing the potential relationship between morning inactivity and depression; target activity scheduling within 2 hours of awakening (preferably earlier); and focus only on the main components of morning activity scheduling, planning, and monitoring. This program was associated with decreases in subjective MADs averaging 29% at week 4, 52% at week 6, and 57% by week 9 (all p's <0.005). Initial depression symptoms were significantly reduced, by 62%, at week 9.ConclusionsThese preliminary findings suggest that subjective MADs can be modified pragmatically, and that doing so may have antidepressant effects. A controlled trial with measures of the putative mechanism is needed to clarify whether, and if so how, targeting MAD with SAMM causally perturbs depression's mechanisms.     

Why do patients and their families not use services for dementia? Perspectives from a developed Asian country

ABSTRACT Background: Despite the need for community services to support the intensive levels of care provided by dementia family caregivers, findings consistently indicate low rates of service utilization. This study aims to explore the extent of service use and examine the factors that may influence the use of services in a sample of family caregivers of Persons With Dementia (PWD). Methods: Two hundred and seventy-two family caregivers completed a questionnaire assessing caregiver burden, knowledge and use of services, dementia severity, frequency of problem behaviors and socio-demographic characteristics. Results: The rate of service use was modest with 39.9% using any of the available services. Reasons for non-use included lack of time (26.2%), perceived lack of need (18.5%), and presence of domestic help (21%). Separate regression models were evaluated to identify factors associated with caregiver service use and PWD service-use. Caregiver employment status (OR = 0.53, CI = 0.30-0.94) and knowledge of available services (OR = 4.22, CI = 2.23-7.98) contributed significantly to the model distinguishing caregiver service users from non-users. Knowledge of available services (OR = 2.14, CI = 1.23-3.71) was the only significant predictor of service use targeted at the PWD. Conclusions: Given that knowledge significantly increased the odds of service use, strategies should be designed to raise awareness about the availability of dementia support services in the community and provide a deeper understanding about the value of such services. Future research should employ larger sample sizes and explore factors not measured in this study that might potentially better explain use of services.     

Dementia‐related restlessness: relationship to characteristics of persons with dementia and family caregivers

Objective

Dementia‐related restlessness is commonly endorsed by caregivers but not well understood. This study examines differences in characteristics (demographics, cognitive status, physical function, pain, and mood) of persons with dementia whose caregivers endorse restlessness versus those who do not. We also examine the relationship of restlessness to caregiver well‐being including burden, upset with behaviors, mastery, and depressive symptomatology.

Methods

We combined baseline data from three caregiver intervention studies of community‐dwelling persons with dementia who exhibited neuropsychiatric symptoms (n = 569) as measured by the Agitated Behaviors in Dementia Scale. We conducted bivariate correlations and independent t‐tests by using the Agitated Behaviors in Dementia Scale restlessness item.

Results

Nearly 65% (n = 367) of dementia caregivers reported restlessness. There were no significant differences between those with and without (n = 202) reported restlessness concerning functional status (physical or cognitive). However, persons with restlessness had significantly higher pain scores (p < 0.01), were more likely to be on behavioral medications (p < 0.001), and had more neuropsychiatric symptoms as compared with persons without restlessness (M = 11.11, nonrestless; M = 6.61, restless) (p < 0.001). Caregivers of persons with dementia‐related restlessness reported greater burden (p < 0.001), behavioral upset (p < 0.001), depression (p < 0.001), and lower mastery providing care (p < 0.01) compared with caregivers of persons without dementia‐related restlessness.

Conclusions

Restlessness is a common neuropsychiatric symptom that appears to be associated with poorer functioning in persons with dementia and greater distress in their caregivers. Further research is needed to understand the unique contributions of restlessness to care burden and quality of life of persons with dementia, as well as ways to address this distressing symptom. Copyright © 2017 John Wiley & Sons, Ltd.     

Burden of caregiving for cardiovascular dysautonomia in Parkinson’s disease

Purpose

We sought to estimate the impact of cardiovascular autonomic neuropathy (cAN) on informal caregivers of patients with Parkinson’s disease (PD), defined as individuals providing regular care to a friend, partner, or family member with PD, and to evaluate the mutual relationship between caregiver burden and patient health-related quality of life (HRQoL).

Methods

We enrolled 36 consecutive patients with PD and their informal caregivers. Patients underwent a detailed motor, autonomic, cognitive, and functional assessment. Caregivers were assessed using the Zarit Burden Interview (ZBI). Differences in caregiver burden, expressed by the ZBI score, and strength of association between caregiver burden, cAN, and HRQoL were assessed using analysis of covariance (ANCOVA), logistic regression, and linear regression analyses. Analyses were adjusted for patients’ age, PD duration, and motor and cognitive disability, as well as caregivers’ age.

Results

Moderate-severe caregiver burden was reported in 41.7% of PDcAN⁺ versus 8.7% of PDcAN⁻ (p < 0.001). The ZBI score was increased in PDcAN⁺ versus PDcAN⁻ (31.5 ± 3.4 versus 15.2 ± 2.3; p < 0.001), with tenfold higher odds (p = 0.012) of moderate-severe caregiver burden in PDcAN⁺, even after adjusting for potential confounders. The ZBI score correlated with cAN severity (p = 0.005), global autonomic impairment (p = 0.012), and HRQoL impairment (p < 0.001).

Conclusion

These results highlight the significant impact of cAN on PD caregivers and the need for targeted interventions addressing this frequently overlooked and insufficiently treated source of nonmotor disability in PD.