Community-dwelling Dementia Patients Research Articles

Influence of care modes and social resources on psychotropic medication use in community-dwelling dementia patients.

Optimal use of psychotropic medications for people living with dementia is important. By finding potentially modifiable factors, dementia care teams may find solutions to achieve the appropriate use of psychotropic drugs. This study aimed to elucidate patient and caregiver factors associated with the use of psychotropic drugs listed in the potentially inappropriate medications (PIMs) in community-dwelling people with dementia. This cross-sectional study enrolled 808 patients newly diagnosed with dementia, and their caregivers, from a dementia clinic at Changhua Christian Hospital. Patient and caregiver characteristics, care mode, and social resource usage were recorded. Multivariate logistic regression was used to identify factors associated with prescribing psychotropic medications. Of all the participants, 39.1% used at least one of psychotropic medication categorized as PIM. Patients with frontotemporal dementia, with behavior or psychological symptoms, or cared by sole foreign care workers; caregivers with higher depression scores, employed or non-spouse caregivers carried a higher risk of prescription of psychotropic medications listed in PIMs. Psychotropic drug prescriptions are associated with patient and caregiver factors. Therefore, implementing appropriate interventions, especially those targeting potentially modifiable factors, is important to reduce psychotropic medication use.

Social Determinants of Health in Community-Dwelling Dementia Patients Aged 65 and Over: Analysis of the 2019 National Health Interview Survey.

Alzheimer's Disease and related dementias affect 3.4 million community-dwelling adults in the United States. Given the burden of disease, a greater understanding of modifiable risk factors is crucial for targeted public health strategies. Social determinants of health (SDOH) are modifiable risk factors categorized in five domains: economic status, education, healthcare access, environment, and community context. Although individual SDOH have been linked to dementia, limited research exists on the interaction of SDOH with dementia across multiple domains. The aim of this study was to evaluate the association between SDOH across all five domains and dementia among community-dwelling adults in the United States. A cross-sectional study was performed on community-dwelling adults aged ≥65 years from the 2019 National Health Interview Survey (NHIS). Respondents (N = 9,277), of whom 303 (4%) self-reported positive dementia diagnosis, were predominantly female (55%), white (76%), and non-Hispanic (91%). Residing in a non-metropolitan area, having a usual place for healthcare, and receiving annual eye or dental exams were negatively associated with dementia. Minority compared to white status was not significantly associated with dementia, suggesting underdiagnosis of dementia within minority groups in the NHIS. We present the first comprehensive national view of SDOH among community-dwelling dementia patients in the United States.

Effects of a dementia virtual reality-based training with peer support for home care workers: A cluster randomized controlled trial.

Home care workers who are the first-line care workers for community-dwelling dementia patients often have limited dementia knowledge, skills, and empathy towards those with dementia. Research is sparse on dementia care training using virtual reality (VR) technology and support network for home care workers. This cluster randomized controlled trial evaluated the effects of a dementia VR-based training with peer support on dementia knowledge, attitude, competence, and empathy of home care workers. Each home care worker team was used as the unit for randomization. Sixteen teams were randomly assigned to either VR group or non-VR control group There was a total of 124 participants completed the study, the VR group (n=61) received a dementia VR-based training consisted of 3-month dementia care e-book modules, dementia VR-based activity and 1-h monthly face-to-face peer support group meetings. The non-VR control group (n=63) only receive the 3-month dementia care e-book modules and 1-h monthly regular staff meetings with no VR activity. Outcome measures were assessed at three time points: baseline, the end of the 3-month intervention, and 1-month post intervention. Generalized estimating equations results indicate that the improvement in dementia knowledge, attitudes, competence, and empathy over time is significant in the VR group compared to the non-VR control group. The effects remained significant 1month after the end of the 3-month intervention. Innovative and accessible dementia training using VR technology with peer support is a promising training approach to improve dementia knowledge, attitudes, competence, and empathy of home care workers.

Integrated health and social care for people with dementia and their informal caregivers, research results

Background: The Deltaplan for Dementia is a nationwide public-private initiative that aims to tackle and manage the growing problem of dementia by utilising innovative strengths in science, product innovation and healthcare including healthcare policy. The EU Joint Programme – Neurodegenerative Disease Research JPND aims to increase investment between countries in research on the subject of neurodegenerative diseases. Nationally and Internationally, clients, health-care professionals and researchers work together in networks to establish integrated care. MEETINGDEM, aimed to adaptively implement and validate the, inclusive Dutch Meeting Centres Support Programme MCSP for community dwelling people with dementia and their family carers in three EU countries Italy, Poland, UK. MCSP provides people with dementia a social club, and carers information, practical, social and emotional support. It is concluded that MCSP is transferable across countries and has quality of life and mental health benefits for people with dementia and carers against reasonable additional costs. Decidem aimed to improve advance care planning ACP in general practice. A training for GPs is developed in initiating ACP with persons with dementia. A single blind cluster randomized controlled trail was conducted to study its effects. The ACP training leads to a significant increase in ACP conversation and medical and psychosocial topics. These findings also indicate that people with dementia PWD are able to engage in a shared decision making process. Thereby this study contributes to the evidence on capabilities of PWD. Moreover, the ACP conversation contributes to the empowerment of PWD. We advocate implementation of this ACP training. Three projects related to network-based covering formal care and informal care services, and integration of the variety of these services available in dementia care: i- DementiaNet - Evaluation of Sustainability and self-organisation of network-based primary care. DementiaNet is a network-based approach to improve primary care for community-dwelling dementia patients. Initial evaluation has showed merits of this approach, and important insights in factors of successful delivery of network-based care; ii- The “GOUDMantel-project” aims to use the valuable experiences and knowledge of former informal caregivers to better support current informal careers; ii- Dementia-Friendly Society - improving and sustaining positive health of people with dementia and their carers by creating dementia-friendly societies. D. Opportunities and challenges to enhance the social network of home dwelling people with dementia and their family carers. Aims and Objectives: This workshop gives insight in results and ongoing research, including and policy on more integrated care on people with dementia. Format timing, speakers, discussion, group work, etc: Three presentations will be given. One on the network-level and two on the project level. We will discuss the results with the target audience.

Longitudinal multiple case study on effectiveness of network-based dementia care towards more integration, quality of care, and collaboration in primary care

Introduction : The rising incidence and policies to keep dementia patients in their own homes are increasingly putting pressure on primary care systems and budgets. The DementiaNet program stimulates development of primary care networks of medical, nursing and welfare professionals for community-dwelling dementia patients through practice facilitation. This study aimed to provide insight into the merits and drawbacks of this program, mechanisms and which contextual factors influenced them. Methods : In this longitudinal mixed methods multiple case study, primary care professionals with shared caseloads of dementia patients, were enrolled to form networks in the DementiaNet program. Data collection consisted of continuously kept logs, yearly structured interviews to rate the network maturity score (range 0-24), yearly quality of care assessment through a sum score of quality indicators (range 0-100), and in-depth interviews regarding experiences and perceived effects. Quantitative data were analyzed through mixed models; qualitative data with thematic analysis. Results were integrated by combined interpretation. Results : Thirteen networks were successfully initiated in the program, consisting of a median of 9 professionals. Overall, the networks showed an average yearly increase of 2.03 (95% CI 1.20-2.96) on network maturity and 8.45 (95% CI 2.80-14.69) on quality indicator sum scores. Mixed methods interpretation revealed patterns regarding network and contextual factors enabling the transition towards more mature networks and better quality of care. Discussion : Time trends in network maturity and quality of care indicators showed overall improvements. Several enabling factors for the transition to network-based care were identified including strong and adequate leadership (preferably with leaders from primary care practice), high involvement of motivated primary care physicians, high acquaintanceship with other network members, and network seize with a compact network that operates in a relatively small geographical area. Conclusions : Participation in the DementiaNet program was associated with increased network maturity and subsequent beneficial effects on quality of care. Adaptation towards a more mature network seemed to favour quality of care improvements. Lesson learned : The multiple case study design demonstrated its value in the evaluation of DementiaNet as example of a complex health care innovation by incorporating interactions and contextual dependency. Limitations : The main limitation of the study was the limited follow-up. The DementiaNet approach demands considerable changes in behaviour and practice from large numbers of actors; such adaptations require time and will be different per network. Indeed, networks work different in speed of change and improvement goals. Nonetheless, these initial results show improvements even over one and two year timeframes. Suggestions for future research : A succeeding study will be initiated to ensure longer follow-up of existing networks, while simultaneously expanding the number of networks.

Dementia Patients Are More Sedentary and Less Physically Active than Age- and Sex-Matched Cognitively Healthy Older Adults

Aims: The aim of this study was to examine physical activity and sedentary behaviour characteristics of ambulatory and community-dwelling patients with dementia compared to cognitively healthy age-, sex- and weight-matched controls. Methods: In this cross-sectional study, we included community-dwelling dementia patients (n = 45, age 79.6 ± 5.9 years, Mini-Mental State Examination [MMSE] 22.8 ± 3.2) and matched controls (n = 49, age 80.0 ± 7.7 years, MMSE 29.0 ± 1.2). Participants wore a wrist accelerometer for 7 days to assess sedentary time, sedentary bout duration and time spent in very light, light-to-moderate and moderate-to-vigorous physical activities. Results: Relative sedentary time and sedentary bout duration was significantly higher in dementia patients than in controls (median [interquartile range] 57% [49–68] vs. 55% [47–59] and 18.3 [16.4–21.1] min vs. 16.6 [15.3–18.4] min, p = 0.042 and p = 0.008, respectively). In addition, dementia patients spent a lower percentage of their waking time in light-to-moderate and moderate-to-vigorous intensity physical activities (20% [15–23] vs. 22% [18–25] and 5% [2–10] vs. 10% [5–13], p = 0.017 and p = 0.001, respectively). Conclusion: We revealed that dementia patients are more sedentary and perform less physical activity than cognitively healthy controls. This may have clinically important consequences, given the observation that sedentary behaviour and little physical activity independently predict all-cause mortality and morbidity.

Interventions to Improve Medicines Management for People with Dementia: A Systematic Review.

The importance of optimising medicines management for people with dementia has been emphasised through research and policy. However, evidence is currently lacking regarding how to achieve this in this patient population. The aim was to assess the effectiveness of medicines management interventions for people with dementia living in their own home or a care home, with or without nursing care. A systematic literature search was conducted in February 2016 across six electronic databases and three trial registries. Inclusion criteria were randomised controlled trials of medicines management (prescribing, dispensing, adherence, and/or review) interventions for people with dementia living in their own homes or care homes, with or without nursing. An assessment of quality was conducted for all studies, using the Cochrane tool for assessing the risk of bias. All outcomes were considered using a narrative approach. Overall, 1365 articles were identified, with three studies eligible for inclusion (n=475 participants). The studies were heterogeneous both in terms of intervention components, setting, and outcomes used. Aspects of medicines management targeted included medication review, adherence, and administration. Improvements in psychotropic prescribing were observed; however, the interventions had limited effects on other outcomes such as wellbeing, falls and dementia severity. This review highlights the limited number of studies examining medicines management interventions for people with dementia. Of the work that has been conducted to date, emphasis has been placed on psychotropic drug use. Future research must target community-dwelling dementia patients and take a holistic approach to medicines management.

Results of a multiple case study to evaluate the merits of a network-based primary care innovation for community-dwelling dementia patients

Introduction: Rearrangements are needed in primary care because of aging populations, the increased prevalence of dementia and increasing costs of health care. With DementiaNet, we aim to enhance primary care via integrated network-based care. We focus on structural collaboration from healthcare professionals from medical, care and social domains, and increased dementia expertise. Here, we describe our evaluation study on the DementiaNet innovation to provide insight in the merits and drawbacks of the DementiaNet innovation. Methods: The evaluation study is a longitudinal, mixed methods, multiple case study. The study population consists of two levels: (i) local DementiaNet networks of primary care professionals, and (ii) dyads of dementia patients and their informal caregivers who receive care from DementiaNet networks. At the start of participation and after 12 and 24 months, quantitative data is collected in each network on the maturity of the network, quality of care indicators, and outcomes reported by informal caregivers. Additionally, qualitative data is collected via in-depth interviews with professionals in the networks and dyads of patients and informal caregivers which provide insight in experiences and opinions regarding effects of the DementiaNet approach and the mechanism through which changes in quantitative outcomes are effectuated. Results: This study is currently ongoing with 17 networks included. Preliminary results of the first five networks show stable or improved quality of care and mostly positive experience with the DementiaNet approach. Analysis of quantitative data at 12 months (n=12) and at 24 months (n=5) will show time trends of these networks regarding their quality of care scores and association with informal caregiver-reported outcomes. Additionally, qualitative results from the interviews will be available. Discussion: This study will show whether the DementiaNet innovation leads to improved quality of dementia care and if this is associated with informal caregiver-reported outcomes, through an innovative study design that is designed to capture the complexity. Furthermore, it will provide insight in how this approach is perceived by primary care professionals. This evaluation study adds to the evidence-base of integrated health care, taken from a complex systems perspective. Conclusion: To conclude, this evaluation study will provide insight in the merits and drawbacks, facilitators and barriers, and improvement opportunities of the DementiaNet approach for integrated dementia care. Lessons learned: Evaluation of a complex program requires innovative design and flexibility. Limitations: Some data will be self-reported by network members. A proportion of networks will be followed for the first year only, because of time restrictions for the evaluation study. Suggestions for future research: We suggest the evaluation of this generic approach in primary care for other chronic conditions. Furthermore, we suggest application of the current design for future research into complex programs in primary health care.

Older Adults with Dementia Are Sedentary for Most of the Day

PurposeSelf-reported data suggest that older adults with dementia are inactive. The purpose of the present study was to objectively assess the physical activity (PA) levels of community-dwelling and institutionalized ambulatory patients with dementia, and to compare with the PA levels of cognitive healthy older adults.MethodsWe used actigraphy to assess the PA levels in institutionalized (n = 83, age: 83.0 ± 7.6, Mini-Mental-State Examination (MMSE): 15.5 ± 6.5) and community-dwelling dementia patients (n = 37, age: 77.3 ± 5.6, MMSE-score: 20.8 ± 4.8), and healthy older adults (n = 26, age: 79.5 ± 5.6, MMSE-score: 28.2 ± 1.6). We characterized PA levels based on the raw data and classified <100 counts/min as sedentary behavior.ResultsInstitutionalized dementia patients had the lowest daily PA levels (1.69 ± 1.33 counts/day), spent 72.1% of the day sedentary, and were most active between 8:00 and 9:00 am. Institutionalized vs. community-dwelling dementia patients had 23.5% lower daily PA levels (difference M = 0.52, p = .004) and spent 9.3% longer in sedentariness (difference M = 1.47, p = .032). Community-dwelling dementia patients spent 66.0% of the day sedentary and were most active between 9:00 to 10:00 am with a second peak between 14:00 to 15:00. Community-dwelling dementia patients vs healthy older adults’ daily PA levels and sedentary time were 21.6% lower and 8.9% longer, respectively (difference M = 0.61, p = .007; difference M = 1.29, p = .078).ConclusionsInstitutionalized and community-dwelling dementia patients are sedentary for most of the day and the little PA they perform is of lower intensity compared to their healthy peers. Their highest PA peak is when they get out of bed in the morning. In addition, it seems that institutionalized living is associated with lower PA levels in dementia patients. These are the first results that objectively characterize institutionalized as well as community-dwelling dementia patients’ PA levels and confirm that dementia patients are inactive.

Longitudinal predictors of informal and formal caregiving time in community-dwelling dementia patients.

Care provided in the community for dementia patients on an individual basis may be very time consuming. Yet, little is known about the factors affecting caregiving time for community-dwelling dementia patients. Thus, we aimed to investigate the predictors of informal and formal caregiving time for these patients in a longitudinal approach. Caregiving time for n = 126 community-dwelling dementia patients was assessed by proxy interviews in four assessments at 6-month intervals (1.5 years of longitudinal follow-up; AgeCoDe study). Measurement of informal caregiving time was based on a German adaptation of the Resource Utilization in Dementia questionnaire. Dementia severity was measured by the Clinical Dementia Rating (CDR). We used random effects models to estimate the effects of sociodemographic variables (age, gender, marital status and education), comorbidity and dementia severity on informal and formal caregiving time. At the first assessment, mean age was 85.0 years (±3.2 years). The majority of patients was female (65.9 %), not married (divorced, single, widowed: 55.6 %) and had primary education (63.5 %). Furthermore, mean GDS was 4.4 (±0.8) and mean MMSE was 20.1 (±5.1). According to CDR, 43 individuals had very mild dementia, 55 individuals had mild dementia and 28 individuals had moderate/severe dementia. Moreover, mean total caregiving time was 3.4 h per day (±4.0). Thereof the main part represents informal caregiving time (2.3 h ± 3.4), whereas formal caregiving time was 1.2 h (±2.4). Dementia severity was associated with total caregiving time, mainly influenced by informal caregiving time. Age was positively associated with total caregiving time, driven by formal caregiving time, while being married was positively associated with total caregiving time, mainly affected by informal caregiving time. All need categories of informal caregiving time were strongly related to dementia severity, whereas none of the categories of formal caregiving time were related to dementia severity. Our findings extend previous studies that found an association between informal caregiving time and dementia severity. Moreover, our findings highlight the role of informal care for community-dwelling dementia patients in Germany. Informal caregiving time strongly increases with dementia severity. Consequently, as the number of patients suffering from dementia is expected to increase considerably in the next decades, there is a paramount need to strengthen the informal care system to meet patients' needs.

Caregiver and care recipient characteristics as predictors of psychotropic medication use in community-dwelling dementia patients

Objectives: The current practice of prescribing psychotropic medication for the management of dementia-related behavioral disturbances is under substantial debate. Using Pearlin's stress process model as theoretical underpinning, the aim of this investigation is to identify caregiver and care recipient characteristics as predictors of anxiolytic, antipsychotic, and antidepressant use among community-dwelling dementia patients. We hypothesized that caregiving burden and patient characteristics, particularly behavior disturbances and pain, would be positively associated with psychotropic medication use.Methods: Data for this exploratory, cross-sectional study were drawn from the baseline assessment of the Resources for Enhancing Alzheimer's Caregiver Health II trial. Only participants with full baseline information were examined (N = 598). Caregiver characteristics, such as confidence managing problematic behaviors, and care recipient characteristics including pain, problem behaviors, cognitive impairment, and functional impairment, were examined in relation to care recipient psychotropic medication use.Results: Contrary to our hypothesis, behavioral disturbances and burden associated with these disturbances were not significantly associated with psychotropic use. Rather, caregiver characteristics such as race and overall vigilance, and care recipient characteristics such as cognitive status, functional status, and pain were significantly associated with the use of psychotropic medication. Findings differed by class of medication.Conclusion: These exploratory findings suggest the utility of a holistic approach to understanding the factors associated with pharmacotherapy among community-dwelling elders with dementia. Significant associations between caregiver characteristics and care recipient psychotropic medication use suggest that educating caregivers in non-pharmacologic strategies hold promise for a more balanced biopsychosocial approach to maintaining dementia patients in the community.

Effects of social supports on burden in caregivers of people with dementia.

Social support programs for dementia caregivers were widely used in order to reduce care burden. We investigated which types of social supports can reduce psychological and non-psychological burdens of dementia caregivers, and explored the mechanism of those social supports. We evaluated 731 community-dwelling dementia patients and their caregivers from the National Survey of Dementia Care in South Korea. We investigated the five types of social supports (emotional support, informational support, tangible support, positive social interaction, affectionate support) using the Medical Outcomes Study Social Support Survey in each caregiver. The mechanisms of specific types of social support on psychological/non-psychological burden were examined using path analysis. Positive social interaction and affectionate support reduced psychological burden via direct and indirect paths. Tangible support reduced the non-psychological burden via direct and indirect paths. Informational support and emotional support were not helpful for reducing psychological or non-psychological burden. A maximum of 20% of psychological burden could be relieved by positive social interaction and 10.3% of that could be reduced by affectionate support. Tangible support was associated with a 15.1% maximal improvement in non-psychological burden. In order to reduce caregiver burden in dementia effectively, psychosocial interventions should be tailored to target type of caregiver burden.

The Costs of Dementia From the Societal Perspective: Is Care Provided in the Community Really Cheaper than Nursing Home Care?

To compare the costs of care for community-dwelling dementia patients with the costs of care for dementia patients living in nursing homes from the societal perspective. Cross-sectional bottom-up cost of illness study nested within the multicenter German AgeCoDe-cohort. Community and nursing homes. One hundred twenty-eight community-dwelling dementia patients and 48 dementia patients living in nursing homes. None. Utilization and costs of medical care and long term care, including formal and informal social and nursing care based on proxy interviews. Informal care was valued using the replacement cost method. Unadjusted mean annual total costs including informal care were €29,930 ($43,997) for community-dwelling patients and €33,482 ($49,218) for patients living in nursing homes. However, multiple regression analysis controlling for age, sex, deficits in basic and instrumental activities of daily living and comorbidity showed that living in the community significantly increased total costs by €11,344 ($16,676; P < .01) compared with living in a nursing home, mainly due to higher costs of informal care (+€20,585;+$30,260; P < .001). From the societal perspective care for dementia patients living in the community tends to cost more than care in nursing homes when functional impairment is controlled for.

Systematic review of non-pharmacologic interventions to delay functional decline in community-dwelling patients with dementia

Objectives: Older adults with dementia experience progressive functional decline, which contributes to caregiver burden and nursing home placement. The goal of this systematic review was to determine if any non-pharmacologic interventions have delayed functional decline among community-dwelling dementia patients. Method: We completed a systematic literature review to identify controlled clinical trials reporting the impact of non-pharmacologic interventions on any measure of functional impairment or disability among community-dwelling dementia patients. We included studies that reported any proxy-respondent, self-reported, or performance-based standardized assessments. Results: We identified 18 published clinical trials that met inclusion criteria and found that study interventions fell into three different groups: occupational therapy, exercise, and multi-faceted (“other”) interventions. The three groups of studies tended to vary systematically regarding the conceptual framework for the disabling process, target of intervention, and type of outcome measure. Approximately half the studies were conducted in the United States with mean sample size of 99 (from 27 to 1131) and follow-up periods between three months and two years. Instruments used to measure functional impairment or disability varied widely with 55 instruments across 18 studies. Nine studies reported a statistically significant improvement in functional decline in the intervention group. Conclusion: The current literature provides clinical trial evidence that non-pharmacologic interventions can delay progression of functional impairment or disability among community-dwelling dementia patients. The clinical significance of this early evidence is uncertain. These early studies provide rationale for larger and longer-term studies to determine if these interventions are sufficiently potent to delay institutionalization.

The cost-effectiveness of a family meetings intervention to prevent depression and anxiety in family caregivers of patients with dementia: a randomized trial.

BackgroundDementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about the cost-effectiveness of such interventions is scarce. The aim of this study was to evaluate the cost-effectiveness of a family meetings intervention for family caregivers of dementia patients in comparison with usual care over a period of 12 months.MethodsThe economic evaluation was conducted from a societal perspective alongside a randomized trial of 192 primary caregivers with community-dwelling dementia patients. Outcome measures included the Quality Adjusted Life-Years (QALY) of caregivers and patients and the incidence of depression and anxiety disorders in caregivers. Missing cost and effect data were imputed using multiple imputations. Bootstrapping was used to estimate uncertainty around the cost-differences and the incremental cost-effectiveness ratio (ICER). The bootstrapped cost-effect pairs were plotted on a cost-effectiveness plane and used to estimate cost-effectiveness curves.ResultsNo significant differences in costs and effects between the groups were found. At 12 months, total costs per patient and primary caregiver dyad were substantial: €77,832 for the intervention group and €75,201 for the usual care group (adjusted mean difference per dyad €4,149, 95% CI -13,371 to 21,956, ICER 157,534). The main cost driver was informal care (66% of total costs), followed by patients’ day treatment and costs of hospital and long-term care facility admissions (23%). Based on the cost-effectiveness acceptability curves, the maximum probability that the intervention was considered cost-effective in comparison with usual care reached 0.4 for the outcome QALY per patient-caregiver dyad and 0.6 for the caregivers’ incidence of depression and/or anxiety disorders regardless of the willingness to pay.ConclusionsThe annual costs of caring for a person with dementia were substantial with informal care being by far the largest contributor to the total societal costs. Based on this study, family meetings cannot be considered a cost-effective intervention strategy in comparison with usual care.Trial registrationISRCTN register, ISRCTN90163486

Does a Family Meetings Intervention Prevent Depression and Anxiety in Family Caregivers of Dementia Patients? A Randomized Trial

BackgroundFamily caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.MethodsA randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed.ResultsA substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = −1.40; 95% CI −3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = −0.55; 95% CI −1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life.ConclusionThis study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers.Trial RegistrationControlled-Trials.com ISRCTN90163486

Reliability of the Perceive, Recall, Plan, and Perform (PRPP) assessment in community-dwelling dementia patients: test consistency and inter-rater agreement

The aim of this study is to evaluate aspects of inter-rater reliability of the Perceive, Recall, Plan, and Perform (PRPP) system of task analysis for assessing daily functioning of home-dwelling dementia patients. Videotaped recordings of 30 German patients with dementia performing a relevant daily task in their own homes were scored independently by ten Dutch PRPP trained occupational therapists, randomly selected from a pool of 25. Intra-class correlations (ICC) (one-way single measure) were calculated for PRPP Stage One independence score, and PRPP Stage Two information processing scale, quadrant scales, and subquadrant scales from a total of 300 PRPP scores. ICCs for Stage One PRPP independence score were good to excellent (0.63; 0.94) for both individual rater and test reliability. The Stage Two PRPP total score showed moderate correlations (0.46) for the single rater absolute agreement and excellent agreement (0.90) for test reliability. The four quadrant scale scores of the PRPP showed limited single rater absolute agreement (0.37-0.39) but excellent average test agreement (0.85-0.87). All subquadrants of information processing showed limited single rater absolute agreement (0.26-0.38) and good to excellent average test agreement (0.78-0.86). This suggests that the PRPP total is reliable in assessing information processing during activity performance in dementia patients. The PRPP is a reliable measure to evaluate individual performances of routines and tasks in community-living dementia patients by multiple raters. Future research should address reliability and validity features of the PRPP for dementia patients with incorporation of criterion-referenced test characteristics.

Use of services by community-dwelling patients with dementia: a systematic review.

Dementia is a complicated disease requiring medical, psychological, and social services. Services to address these needs include medical care (outpatient physician/specialist, inpatient, emergency) and community care (home health, day care, meal preparation, transportation, counseling, support groups, respite care, physical therapy). This systematic review of articles published in English from 1991 to the present examines studies of ambulatory, community-dwelling dementia patients with established dementia diagnoses. Searches of the Medline database using 13 combinations of search terms, plus searches of Embase and PsycINFO databases using 3 combinations of terms and examination of reference lists of related articles, resulted in identification of 15 studies dealing with healthcare utilization among community-dwelling dementia patients in both medical and community care settings. Patients with dementia frequently use the full spectrum of medical services. Community resources are used less frequently. Community healthcare services may be a valuable resource in alleviating some burden of dementia care for physicians.

Rural-Urban Differences in Preventable Hospitalizations Among Community-Dwelling Veterans With Dementia

Alzheimer's patients living in rural communities may face significant barriers to effective outpatient medical care. We sought to examine rural-urban differences in risk for ambulatory care sensitive hospitalizations (ACSH), an indicator of access to outpatient care, in community-dwelling veterans with dementia. Medicare and Veteran Affairs inpatient claims for 1,186 US veterans with dementia were linked to survey data from the 1998 National Longitudinal Caregiver Survey. ACSH were identified in inpatient claims over a 1-year period following collection of independent variables. Urban Influence Codes were used to classify care recipients into 4 categories of increasing county-level rurality: large metropolitan; small metropolitan; micropolitan; and noncore rural counties. We used the Andersen Behavioral Model of Health Services to identify veteran, caregiver, and community factors that may explain urban-rural differences in ACSH. Thirteen percent of care recipients had at least 1 ACSH. The likelihood of an ACSH was greater for patients in noncore rural counties versus large metropolitan areas (22.6% vs 12.8%, unadjusted odds ratio [OR]= 1.99; P < .01). The addition of other Andersen behavioral model variables did not eliminate the disparity (adjusted OR = 1.97; P < .05). We found that dementia patients living in the most rural counties were more likely to have an ACSH; this disparity was not explained by differences in caregiver, care recipient, or community factors. Furthermore, the annual rate of ACSH was higher in community-dwelling dementia patients compared to previous reports on the general older adult population. Dementia patients in rural areas may face particular challenges in receiving timely, effective ambulatory care.

Evaluation of a Telephone-Based Support Group Intervention for Female Caregivers of Community-Dwelling Individuals With Dementia

Family caregivers, the "second victims" or hidden patients in dementia care, are at risk for social isolation, stress, depression, and mortality. Telephone-based support (telesupport groups) represents a practical, low-burden, low-cost source of emotional support. The present study evaluated the feasibility and effectiveness of professionally led telephone-based support groups for female family caregivers of community-dwelling dementia patients. Recruited through various community sources, 103 female caregivers were randomized to the telesupport group treatment or a control condition. Effects on caregiver burden, depression, and personal gains were evaluated at 6 months, the main end point. Older care-givers (> or =65) in telesupport reported lower depression than control group caregivers did.