Instability in Caregivers’ Perception of Dementia as a Terminal Disease

ObjectivesFamily caregivers' perception that dementia is a terminal disease influence end-of-life (EoL) care of persons with severe dementia (PwSDs). Yet, this perception and the extent to which it changes over time is underexplored. We assessed PwSD caregivers’ perception of dementia as a terminal disease and changes in this perception over time.DesignProspective cohort.Setting and participantsTwo hundred fifteen primary informal caregivers of community-dwelling PWSDs in Singapore were surveyed every 4 months over a period of 16 months.MethodsWe assessed the proportion of caregivers who perceived that dementia is a terminal disease and the extent to which it changed between the previous time points. Using mixed effects multinomial regression models, we assessed factors associated with caregivers’ perception and changes in perception between consecutive time points.ResultsAt baseline, only 26% of the caregivers reported correctly that dementia is a terminal disease. This changed over time, not necessarily toward a correct perception. Caregivers of PwSDs with an acute medical condition in the last 4 months (risk ratio [RR] 2.19, 95% CI 1.21, 3.97) and those with higher functional dependence (RR 1.11, 95% CI 1.01,1.22) were more likely and those of older PwSDs were less likely (RR 0.87, 95% CI 0.81, 0.93) to perceive dementia as a terminal disease. Caregivers of PwSDs who had experienced an acute medical problem in the last 4 months (RR 1.58, 95% CI 1.00, 2.49) were also more likely to shift their perception toward being correct. Caregivers of PwSDs who had more agitation behaviors were more likely to shift their perception toward being incorrect (RR 1.04, 95% CI 1.00,1.07)Conclusions and ImplicationsFew caregivers perceived dementia as terminal, and this perception changed over time and differed according to age and the health status of PwSD. Results have implications regarding the frequency of prognostic discussions.     

Acceptability of Sexual Relationships Among People with Learning Disabilities: Family and Professional Caregivers’ Views in Mexico

The attitudes towards sexual relationships among persons with learning disabilities (PLD) of parents of children without disabilities were compared with the attitudes of family caregivers (parents of PLD) and with the attitude of professional caregivers. The importance of different situational factors that may alter acceptability judgments (i.e., gender, etiology of the disability, person’s present level of autonomy, use of contraceptive devices, and partner’s age and possible handicap) with regards to the sexuality of PLD was examined through the use of concrete cases. All the participants lived in Mexico. The only notable difference in attitude that was observed was between parents of PLD suffering from trisomia 21 and parents of PLD suffering from a neuromotor disorder. As a result, it may be erroneous to consider parents of PLD as a homogeneous group regarding attitudes to sexuality. Three different basic philosophies regarding the expression of sexuality among PLD were observed. They were called Mainly Unacceptable (37% of the sample), Mainly Acceptable (36%), and Depending on Circumstances (27%). In this later philosophy, contraception was by far the major determinant of acceptability.     

Identifying and Predicting Profiles of Medical Noncompliance: Pediatric Caregivers’ Antibiotic Stewardship

Sometimes compliance with medical recommendations is problematic. We investigated pediatric caregivers’ (N = 606) patterns of noncompliance with antibiotic stewardship based on the obstacle hypothesis. We tested predictors of noncompliance framed by the obstacle hypothesis, dissonance theory, and psychological reactance. The results revealed four profiles of caregivers’ stewardship: one marked by compliance (Stewards) and three marked by types of noncompliance (Stockers, Persuaders, and Dissenters). The covariate analysis showed that, although psychological reactance predicted being noncompliant, it was types of obstacles and discrepant experiences that predicted caregivers’ patterns of noncompliance with antibiotic stewardship. Campaign planning often focuses on identifying the belief most associated with the targeted outcome, such as compliance. Noncompliance research, however, points out that persuaders may be successful to the extent to which they anticipate obstacles to compliance and address them in their influence attempts. A shift from medical noncompliance to patient engagement also affords an opportunity to consider how some recommendations create obstacles for others and to find positive ways to embrace conflicting needs, tensions, and reasons for refusal in order to promote collective goals.     

Social Networks Effects on Spouse and Adult-Child Dementia Caregivers’ Experiences: A Cross-Sectional Study

ObjectivesA large body of literature addresses experiences of spouse and adult-children caregiver of individuals with dementia (IWDs) but has not examined the role and strength of social networks in associations between spouses and adult-children caregivers’ experience. Based on the stress process model, we aimed to explore the strength levels of social networks and their association with spouses/adult-children caregivers for IWDs.DesignA cross-sectional study.Setting and ParticipantsA questionnaire-based survey was conducted with a total of 146 family caregivers of IWDs (78 adult-child, and 68 spouses) in China.MethodsData collection comprised 4 sections: (1) care-related stressors (dementia stage, neuropsychiatric symptoms); (2) caregiver context; (3) social network, using the Lubben Social Network Scale; and (4) caregiving experience, using the short-form Zarit Burden Interview and 9-item Positive Aspects of Caregiving Scale. Linear regression, mediation model analysis, and interactive analysis were performed to explore the mechanisms of associations between variables.ResultsSpouses had weaker social network strength (β = −0.294, P = .001) and reported greater positive aspects of caregiving (β = 0.234, P = .003) than adult-children caregivers; no significant difference was found between them for caregiver burden. Mediation analysis suggests that associations between caregiver type and caregiver burden are indirect-only mediation effects of social networks (β = 0.140, 95% CI = 0.066-0.228). The social network strength suppressed the association between caregiver type and positive aspects of caregiving. The caregiver type/social network interaction statistically significantly (P = .025) affected the “positive aspects”: a stronger social network was associated with more positive aspects of caregiving among the spouse subgroup (β = 0.341, P = .003).Conclusions and ImplicationsSocial networks mediate responses to caregiving experiences among different care provider types and are vital intervention targets, especially for spousal caregivers. Our results can serve as references for identifying caregivers for clinical intervention.     

Homecare Robots to Improve Health and Well-Being in Mild Cognitive Impairment and Early Stage Dementia: Results From a Scoping Study

Objectives

This scoping study is the first step of a multiphase, international project aimed at designing a homecare robot that can provide functional support, track physical and psychological well-being, and deliver therapeutic intervention specifically for individuals with mild cognitive impairment.

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

PURPOSE

Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducted a systematic mixed-studies review to identify the needs of the patient-caregiver dyad and the effects of CM.

METHODS

We searched MEDLINE, PsycINFO, and EMBASE up to October 2014, regardless of the study design. Our main outcomes were needs of patients and their caregivers and the effects of CM on these needs. We used narrative syntheses to develop a taxonomy of needs and to describe the effects of CM on those needs. We used meta-analysis to calculate the prevalence of needs and the standardized mean differences to evaluate the effects of CM on the needs identified.

RESULTS

Fifty-four studies were included. We identified needs of the patient-caregiver dyad and needs of the patient and caregiver individually. CM addressed the majority of the identified needs. Still, some very common needs (eg, early diagnosis) are overlooked while other needs (eg, education on the disease) are well addressed. Fully establishing the value of CM is difficult given the small number of studies of CM in primary care.

CONCLUSIONS

There is good evidence that case managers, in collaboration with family physicians, have a pivotal role in addressing the needs of the patient-caregiver dyad.     

Unmet Need for Therapy Among Children with Autism Spectrum Disorder: Results from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs

Objectives We examined population-based trends in unmet need for therapy service in children with autism spectrum disorder (ASD) compared to other children with special health care needs (CSHCN), and identified factors associated with unmet need for therapy. Methods A pooled cross-sectional comparison of the 2005–2006 and 2009–2010 waves of the National Survey for Children with Special Health Care Needs (NS-CSHCN) was used. Weighted bivariate analyses were used to compare children ages 3–17 years with ASD (n = 5113) to other CSHCN (n = 71,294) on unmet need for therapy services. Survey weighted multivariate models were used to examine child, family, and contextual characteristics associated with unmet need. Results A greater percentage of children with ASD across both surveys were reported to need therapy than other children with CSHCN. Among children with a reported need, children with ASD were 1.4 times more likely to report an unmet need for therapy compared to other CSHCN (OR 1.42, 95 % CI 1.18–1.71). Variables significantly associated with unmet need for therapy services included not receiving a well-child visit in the past year (OR 5.81, CI 3.83–8.81), surveyed in 2009 (OR 1.42, CI 1.18–1.71), child being female (OR 1.27, CI 1.05–1.53), uninsured (OR 1.72, CI 1.15–2.56), and having greater functional limitation (OR 2.44, CI 1.80–3.34). Conclusions for Practice Children with ASD require supportive services such as occupational, physical, and speech therapy but are less likely to receive such services than other CSHCN. Receiving a well-child visit in the past year was strongly associated with receipt of needed therapy services.     

Is Religiosity a Barrier to Sexual and Reproductive Health? Results from a Population-Based Study of Young Croatian Adults

Following the demise of socialism in 1989, religious identification substantially increased in most countries of Central, East, and Southeast Europe. Considering that there is evidence that religiosity is associated with reduced sexual risk taking among young people, this study explored associations between religiosity—assessed at three different levels (religious upbringing, personal religiosity, and social network religiosity)—and sexual risks among young Croatian adults. In addition, we examined whether religiosity predicted chlamydial infection among women and men aged 18–25. The data were collected in a national probability survey carried out in 2010 (n = 1,005). Overall, the effects of religiosity were sporadic, present primarily among women, and of small size. This lack of a sizeable impact of religiosity on young adults’ sexuality was likely related to a particular type of religiosity, characterized by individualized morality, found among young people in the country. Although Croatia seems to be one of the most religious countries in Europe, our findings suggest that promoting religious morality—as recently attempted by an abstinence-based educational program—may not be an efficient tool in reducing sexual risks.     

Evidence That Changes in Community Food Environments Lead to Changes in Children’s Weight: Results from a Longitudinal Prospective Cohort Study

BackgroundStrategies to improve the community food environment have been recommended for addressing childhood obesity, but evidence substantiating their effectiveness is limited.ObjectiveOur aim was to examine the impact of changes in availability of key features of the community food environment, such as supermarkets, small grocery stores, convenience stores, upgraded convenience stores, pharmacies, and limited service restaurants, on changes in children’s body mass index z scores (zBMIs).DesignWe conducted a longitudinal cohort study.Participants/settingTwo cohorts of 3- to 15-year-old children living in 4 low-income New Jersey cities were followed during 2- to 5-year periods from 2009 through 2017. Data on weight status were collected at 2 time points (T1 and T2) from each cohort; data on food outlets in the 4 cities and within a 1-mile buffer around each city were collected multiple times between T1 and T2.Main outcome measuresWe measured change in children’s zBMIs between T1 and T2.Statistical analysisChanges in the food environment were conceptualized as exposure to changes in counts of food outlets across varying proximities (0.25 mile, 0.5 mile, and 1.0 mile) around a child’s home, over different lengths of time a child was exposed to these changes before T2 (12 months, 18 months, and 24 months). Multivariate models examined patterns in relationships between changes in zBMI and changes in the food environment.ResultsIncreased zBMIs were observed in children with greater exposure to convenience stores over time, with a consistent pattern of significant associations across varying proximities and lengths of exposure. For example, exposure to an additional convenience store over 24 months within 1 mile of a child’s home resulted in 11.7% higher odds (P = 0.007) of a child being in a higher zBMI change category at T2. Lower zBMIs were observed in children with increased exposure to small grocery stores selling an array of healthy items, with exposure to an additional small grocery store within 1 mile over 24 months, resulting in 37.3% lower odds (P < 0.05) of being in a higher zBMI change category at T2. No consistent patterns were observed for changes in exposure to supermarkets, limited service restaurants, or pharmacies.ConclusionsIncreased availability of small grocery stores near children’s homes may improve children’s weight status, whereas increased availability of convenience stores is likely to be detrimental.     

Results of a Pilot Study of Pre-release STD Testing and Inmates’ Risk Behaviors in an Ohio Prison

This study presents the results of a pilot study of mandatory pre-release testing for sexually transmitted disease (STD) and a behavioral risk survey for male inmates at an Ohio prison. Approximately 4–6 weeks prior to scheduled release, inmates took part in a mandatory blood test and optional genital swab and physical examination to test for STDs. At the time of testing, a voluntary behavioral and knowledge survey was administered to inmates. Pre-release testing identified 53 new cases of STDs among the 916 inmates (5.5%) scheduled for release during the pilot study period. Trichomoniasis and hepatitis C were the most common infections identified through pre-release testing. Nearly all inmates participated in the required blood test. Participation rates for the other testing methods averaged less than 45%. Inmates reported engaging in various risky behaviors during incarceration such as having sex (12.1%), tattooing (36.5%), and drug use (19.5%). Pre-release testing identified several new cases of STDs not identified through existing intake and for-cause testing procedures. Substantial useful information about the prevalence of STD risk behaviors can be obtained through a pre-release survey.     

Employment Resources for People with Parkinson’s Disease: A Resource Review and Needs Assessment

Journal of Occupational Rehabilitation - Purpose People with Parkinson’s disease (PwP) exit the workforce on average 5&nbsp;years earlier than people without Parkinson’s due to...     

Resource Use and Cost of Alzheimer’s Disease in France: 18-Month Results from the GERAS Observational Study

Background

There is little longitudinal data on resource use and costs associated with Alzheimer’s disease (AD) in France.

Dietary Carbohydrate and Nocturnal Sleep Duration in Relation to Children’s BMI: Findings from the IDEFICS Study in Eight European Countries

Previous research has found an association between being overweight and short sleep duration. We hypothesized that this association could be modified by a high carbohydrate (HC) diet and that the timing and type (starch or sugar) of intake may be an important factor in this context. Participants in the prospective, eight-country European study IDEFICS were recruited from September 2007 to June 2008, when they were aged two to nine years. Data on lifestyle, dietary intake and anthropometry were collected on two occasions. This study included 5944 children at baseline and 4301 at two-year follow-up. For each meal occasion (morning, midday, and evening), starch in grams and sugar in grams were divided by total energy intake (EI), and quartiles calculated. HC-starch and HC-sugar intake categories were defined as the highest quartile for each meal occasion. In a mutually adjusted linear regression model, short sleep duration as well as HC-starch in the morning were positively associated with body mass index (BMI) z-scores at baseline. HC-starch at midday was positively associated with body mass index (BMI) z-scores in children with short sleep duration, and negatively associated with BMI z-scores in those with normal sleep. After adjustment for baseline BMI z-scores, associations between total HC from starch or sugar and high BMI z-scores at two-year follow-up did not persist. Our observations offer a perspective on optimal timing for macronutrient consumption, which is known to be influenced by circadian rhythms. Reduced carbohydrate intake, especially during morning and midday meals, and following nocturnal sleep duration recommendations are two modifiable factors that may protect children from being overweight in the future.     

Dietary Intakes of Preschool-Aged Children in Relation to Caregivers’ Race/Ethnicity, Acculturation, and Demographic Characteristics: Results from the 2007 California Health Interview Survey

Few studies have examined the influence of acculturation on dietary behaviors of young children while controlling for other demographic variables. The purpose of this study was to assess reported dietary intakes of preschool-aged children (3?C5?years) and subsequent associations with caregivers?? race/ethnicity, acculturation and demographic characteristics, using data from the 2007 California Health Interview Survey (CHIS). Analysis was restricted to Hispanic and non-Hispanic white caregivers and their preschool-aged children (n?=?1,105). Caregivers?? acculturation was assessed using place of birth, duration of United States residence, and language spoken at home. Proxy-reports by caregivers to a dietary screener were used to estimate children??s intakes of fruit, 100% fruit juice, vegetables, sweets, and sugar-sweetened beverages consumed. In multivariate analyses, Hispanic caregivers reported their children consumed fewer servings of vegetables than did the children of non-Hispanic white caregivers; there were no other statistically significant differences in children??s dietary intakes by caregivers?? race/ethnicity. Caregivers?? acculturation was associated with caregiver-reported consumption of sweets by children (???=?0.09, 95%CI?=?0.01?C0.18). Demographic characteristics that were associated with reported dietary intakes of children included caregivers?? age, education, and geographic region of residence. In contrast to past studies of acculturation and diet in older children and adults, this study suggests that for 3?C5?year olds, caregivers?? level of acculturation does not play as strong a role in the dietary intakes of the younger children under their care.     

Sex Differences in Behavioral and Psychological Signs and Symptoms of Dementia Presentation Regarding Nursing Home Residents with Cognitive Impairment Suffering from Pain – Results of the Services and Health for Elderly in Long-Term Care Study

ObjectiveBehavioral and psychological symptoms of dementia (BPSD) place a heavy burden on patients as well as caregivers. Recently, pain was identified as an important determinant of BPSD. However, it is not yet known what influence sex has on BPSD and pain. Thus, the present study aimed to identify possible associations between BPSD, pain, and sex.DesignA retrospective evaluation of cross-sectional data derived from the Services and Health for Elderly in Long-Term Care (SHELTER) Study database, a cross-national European study on nursing home residents.Setting and ParticipantsThe study involved 4156 residents who were assessed using the interRAI instrument for Long-Term Care Facilities. Included in the analysis were only patients with cognitive impairment (n = 2822) (67.9%) of which 712 (25.2%) were male and 2110 (74.8%) were female.MethodsDifferences in prevalence were tested using the χ² test while bivariate logistic regression models were used to evaluate factors associated with sex.ResultsMen showed behavioral symptoms such as wandering, verbal and physical abuse as well as sexual uninhibited behavior significantly more often than women. Regarding psychiatric symptoms, only depression was significantly more frequent in women. Surprisingly, in the presence of pain these differences in BPSD incidence between men and women were no longer detectable. Logistic regression analysis showed that in women with dementia/communication problems, the presence of pain could be indicated by resistance to care, sleeping disorders, and possibly by the presence of delusions and anxiety whereas in men it was related to abnormal thought processes, and in both sexes to depressionConclusions and ImplicationsFrom a clinical point of view, resistance to care and sleeping disorders in women and abnormal thought processes in men as well as depression in both sexes should be seen as indicators of possible underlying pain in noncommunicative people. Thus, knowledge of sex-specific BPSD presentations can improve pain management in this particularly patient group.     

Health Professional’s Perceptions and Practices in Relation to Functional Capacity Evaluations: Results of a Quantitative Survey

Introduction This study investigated the perceptions and practices of Australian health professionals in relation to the use of functional capacity evaluations (FCE’s). Methods A quantitative cross-sectional study design was used to survey health professionals who conduct FCE’s and who were working for one of 219 rehabilitation providers in NSW, Australia. Seventy seven returned surveys were eligible for inclusion. Results Eleven different FCE’s were being utilised with many health professionals using more than one FCE. The most commonly used FCE was non-standardised (56%, n = 43) followed by 52% (n = 40) using the Workhab, and 18% (n = 14) using Valpar. Both non-standardised and standardised assessments were being used by 90% (n = 69) of respondents. Health professionals reported using all or parts of the FCE, and indicated identical FCE’s are not always conducted, with adaptation of the FCE, due to client injury (82%, n = 62) and job (80%, n = 43) occurring. About 60% of respondents had no choice in the type of FCE they conducted, and of the 40% with a choice, this was not influenced by other stakeholders in the process. Accreditation and training, characteristics of assessment tasks, standardisation, reliability, cost, length and flexibility were all identified as factors affecting the selection of an FCE. Conclusions This study demonstrated that health professionals in NSW Australia, are not routinely using standardised tools for FCE’s. Health professional perceptions suggest accreditation, training and the characteristics of the FCE were important factors in FCE selection. In practice, participants tended to use parts of an FCE rather than the whole FCE. Adaptation of FCE’s was common, due to client injury and specific job requirements.