Age-Related Macular Degeneration and Risk of Degenerative Dementia among the Elderly in Taiwan: A Population-Based Cohort Study.
Tsai Der-Chong,Chen Shih-Jen,Huang Chin-Chou,Yuan May-Kang,Leu Hsin-Bang
Ophthalmology
PURPOSE:To investigate the relationship between age-related macular degeneration (AMD) and future development of Alzheimer's disease (AD) or senile dementia. DESIGN:A longitudinal case-control study using the Taiwan National Health Insurance Research Database. PARTICIPANTS:From 2001 to 2009, the newly diagnosed AMD cases aged ≥65 years in the database were recruited as the AMD cohort (n=4993). Of those, there were 540 with and 4453 without exudative AMD diagnoses. Subjects without any AMD, matched for age, gender, and time of enrollment, were randomly sampled as the control cohort (n=24,965) for comparison. METHODS:Alzheimer's disease/senile dementia-free survival analysis was assessed using a Kaplan-Meier method. Cox proportional hazard regressions were performed to calculate the hazard ratios (HR) of AD or senile dementia for the 2 cohorts after adjusting for preexisting comorbidities and number of clinical visits. MAIN OUTCOME MEASURES:The first-ever diagnosis of AD or senile dementia during the observation period. RESULTS:Of the 29 958 sampled subjects, 1589 (5.3%) were diagnosed with AD or senile dementia during a mean follow-up period of 4.4 years, including 294 (5.9%) from the AMD cohort and 1295 (5.2%) from the control cohort. The incidence of AD or senile dementia was higher in patients with AMD than in the controls (P=0.044), with an HR of 1.44 (95% confidence interval [CI], 1.26-1.64) after adjusting for covariates. The stratified analysis showed that the adjusted HR for AD or senile dementia was 1.35 (95% CI, 0.89-2.06) for exudative AMD versus the controls and 1.44 (95% CI, 1.26-1.65) for nonexudative AMD versus the controls. CONCLUSIONS:This study provides large-scale, population-based evidence that AMD, especially nonexudative AMD, is independently associated with an increased risk of subsequent AD or senile dementia development.
10.1016/j.ophtha.2015.07.033
The economic burden of Alzheimer's disease care.
Rice D P,Fox P J,Max W,Webber P A,Lindeman D A,Hauck W W,Segura E
Health affairs (Project Hope)
This study examines total formal and informal care costs attributable to Alzheimer's disease for persons living in the community and in institutions. The total cost of caring for an Alzheimer's patient in northern California is approximately $47,000 per year whether the patient lives at home or in a nursing home, but the cost breakdown differs in the two settings. For community-resident patients, three-fourths of the total cost represents an imputed value for unpaid informal care compared with 12 percent for institutionalized patients. Formal services are financed primarily by individuals and their families. Over 60 percent of the services provided to patients in either care setting were paid out of pocket. With projected increases in the number of persons at risk of developing Alzheimer's disease, the economic impact of the disease on future long-term care costs will be significant.
A Web-Based Dementia Education Program and its Application to an Australian Web-Based Dementia Care Competency and Training Network: Integrative Systematic Review.
Moehead Anne,DeSouza Kathryn,Walsh Karen,Pit Sabrina W
Journal of medical Internet research
BACKGROUND:Dementia education that meets quality and safety standards is paramount to ensure a highly skilled dementia care workforce. Web-based education provides a flexible and cost-effective medium. To be successful, Web-based education must contain features that promote learning and support knowledge translation into practice. The Dementia Care Competency and Training Network (DCC&TN) has developed an innovative Web-based program that promotes improvement of the attitudes, knowledge, skills, behavior, and practice of clinicians, regardless of their work setting, in order to improve the quality of life for people living with dementia. OBJECTIVE:This review aims to (1) determine the key features that are associated with an effective and functional Web-based education program-an effective and functional Web-based program is defined as one that measures results, is accessible, is user friendly, and translates into clinical practice-and (2) determine how these features correlate with the DCC&TN. METHODS:Six electronic databases-Medline, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), AusHealth, Nursing@Ovid, and Google Scholar-were searched for articles published between 2009 and 2018 using the following keywords: Education, Distance, Continuing, Learning, Online, Web-Based, Internet, Dementia, Program Evaluation, Validation Studies, Outcome and Process Assessment Healthcare, Nursing, Assisted Instruction, and Facilitated. The Critical Appraisal Skills Programme (CASP) and Kirkpatrick's model for the evaluation of training were used to ensure quality and rigor of the analysis. RESULTS:A total of 46 studies met the inclusion criteria. In total, 14 key features were associated with an effective Web-based learning environment, which enabled the environment to be as follows: self-directed, individualized, interactive, multimodal, flexible, accessible, consistent, cost-effective, measurable with respect to participant satisfaction, equitable, facilitated, nurturing of critical thinking and reflection, supportive of creating a learning community, and translated into practice. These features were further categorized into five subgroups: applicability, attractiveness, functionality, learner interaction, and implementation into practice. Literature frequently cites Kirkpatrick's four-level model of evaluation and application in the review of education and training; however, few studies appeared to integrate all four levels of Kirkpatrick's model. Features were then correlated against the DCC&TN, with an encouraging connection found between these features and their inclusion within the content and structure of the DCC&TN. CONCLUSIONS:A total of 14 key features were identified that support an effective and functional Web-based learning environment. Few studies incorporated Kirkpatrick's salient elements of the model-reaction, learning, behavior, and results-in their evaluation and clinical application. It could, therefore, be considered prudent to include Kirkpatrick's levels of training evaluation within studies of dementia training. There were few studies that evaluated Web-based dementia education programs, with even fewer reporting evidence that Web-based training could increase staff confidence, knowledge, skills, and attitudes toward people with dementia and be sustainable over time. The DCC&TN appeared to contain the majority of key features and is one of the few programs inclusive of hospital, community, and residential care settings. The 14 key features can potentially enhance and complement future development of online training programs for health sciences education and beyond. The DCC&TN model could potentially be used as a template for future developers and evaluators of Web-based dementia training.
10.2196/16808
Measurement and correlates of family caregiver self-efficacy for managing dementia.
Fortinsky R H,Kercher K,Burant C J
Aging & mental health
Researchers in the aging field are paying increasing attention to the importance of perceived self-efficacy in understanding experiences and health-related outcomes of family caregivers. This paper details the strategy we used to measure family caregiver self-efficacy for managing dementia, and reports on observed associations between the resulting self-efficacy measures, caregiver depressive symptoms, and caregiver physical health symptoms. Family caregivers (n = 197) were interviewed after calling a local Alzheimer's Association chapter in the mid-western USA. Nine items inquiring about caregivers' certainty that they could carry out specific behaviors related to dementia care clustered into two distinct self-efficacy factors: symptom management self-efficacy (4 items) and community support service use self-efficacy (5 items). Internal consistency reliability for both factors was high (Cronbach's alpha = 0.77 and 0.78, respectively). Symptom management self-efficacy demonstrated a much stronger correlation with a published global caregiver competence measure than did service use self-efficacy (r = 0.49 and 0.27, respectively). In a multivariate regression model predicting caregiver depression symptoms, higher symptom management self-efficacy scores were associated with fewer depressive symptoms (beta = -0.17, p < 0.05). In a separate model, higher service use self-efficacy scores (beta = -0.20, p < 0.01) and higher symptom management self-efficacy scores (beta = -0.16, p < 0.05) were associated with fewer physical health symptoms. These new measures of dementia management self-efficacy hold promise for use in future studies.
10.1080/13607860220126763
Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial.
Orgeta Vasiliki,Leung Phuong,Yates Lauren,Kang Sujin,Hoare Zoe,Henderson Catherine,Whitaker Chris,Burns Alistair,Knapp Martin,Leroi Iracema,Moniz-Cook Esme D,Pearson Stephen,Simpson Stephen,Spector Aimee,Roberts Steven,Russell Ian T,de Waal Hugo,Woods Robert T,Orrell Martin
Health technology assessment (Winchester, England)
BACKGROUND:Group cognitive stimulation therapy programmes can benefit cognition and quality of life for people with dementia. Evidence for home-based, carer-led cognitive stimulation interventions is limited. OBJECTIVES:To evaluate the clinical effectiveness and cost-effectiveness of carer-delivered individual cognitive stimulation therapy (iCST) for people with dementia and their family carers, compared with treatment as usual (TAU). DESIGN:A multicentre, single-blind, randomised controlled trial assessing clinical effectiveness and cost-effectiveness. Assessments were at baseline, 13 weeks and 26 weeks (primary end point). SETTING:Participants were recruited through Memory Clinics and Community Mental Health Teams for older people. PARTICIPANTS:A total of 356 caregiving dyads were recruited and 273 completed the trial. INTERVENTION:iCST consisted of structured cognitive stimulation sessions for people with dementia, completed up to three times weekly over 25 weeks. Family carers were supported to deliver the sessions at home. MAIN OUTCOME MEASURES:Primary outcomes for the person with dementia were cognition and quality of life. Secondary outcomes included behavioural and psychological symptoms, activities of daily living, depressive symptoms and relationship quality. The primary outcome for the family carers was mental/physical health (Short Form questionnaire-12 items). Health-related quality of life (European Quality of Life-5 Dimensions), mood symptoms, resilience and relationship quality comprised the secondary outcomes. Costs were estimated from health and social care and societal perspectives. RESULTS:There were no differences in any of the primary outcomes for people with dementia between intervention and TAU [cognition: mean difference -0.55, 95% confidence interval (CI) -2.00 to 0.90; p-value = 0.45; self-reported quality of life: mean difference -0.02, 95% CI -1.22 to 0.82; p-value = 0.97 at the 6-month follow-up]. iCST did not improve mental/physical health for carers. People with dementia in the iCST group experienced better relationship quality with their carer, but there was no evidence that iCST improved their activities of daily living, depression or behavioural and psychological symptoms. iCST seemed to improve health-related quality of life for carers but did not benefit carers' resilience or their relationship quality with their relative. Carers conducting more sessions had fewer depressive symptoms. Qualitative data suggested that people with dementia and their carers experienced better communication owing to iCST. Adjusted mean costs were not significantly different between the groups. From the societal perspective, both health gains and cost savings were observed. CONCLUSIONS:iCST did not improve cognition or quality of life for people with dementia, or carers' physical and mental health. Costs of the intervention were offset by some reductions in social care and other services. Although there was some evidence of improvement in terms of the caregiving relationship and carers' health-related quality of life, iCST does not appear to deliver clinical benefits for cognition and quality of life for people with dementia. Most people received fewer than the recommended number of iCST sessions. Further research is needed to ascertain the clinical effectiveness of carer-led cognitive stimulation interventions for people with dementia. TRIAL REGISTRATION:Current Controlled Trials ISRCTN65945963. FUNDING:This project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme and will be published in full in Health Technology Assessment; Vol. 19, No. 64. See the NIHR Journals Library website for further information.
10.3310/hta19640
Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review.
Müller Christian,Lautenschläger Sindy,Meyer Gabriele,Stephan Astrid
International journal of nursing studies
BACKGROUND:During the transition of people with dementia from home to nursing home family caregivers often feel burdened. OBJECTIVES:We aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions. DESIGN:A systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. DATA SOURCES:MEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS. REVIEW METHODS:Two reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively. RESULTS:The search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers' depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement adaptation, role overload, and role captivity, were not statistically significantly affected. The assessment for bias risk across studies varied from moderate to low. Only two studies tested the feasibility of the intervention before full scale evaluation, none evaluated the implementation process according to the Medical Research Council framework. CONCLUSIONS:We identified only a few studies with heterogeneous outcomes; evidence regarding the effectiveness of psychosocial interventions is thus insufficient. Further research is needed focusing on the development and evaluation of complex psychosocial interventions and more well-designed RCTs with larger sample sizes based on a rigorous methodology. Reporting on feasibility and implementation processes of interventions should be guaranteed, since it is crucial to evaluate transferability across care settings.
10.1016/j.ijnurstu.2017.03.013
The Tele.TAnDem Intervention: Telephone-based CBT for Family Caregivers of People With Dementia.
Wilz Gabriele,Reder Maren,Meichsner Franziska,Soellner Renate
The Gerontologist
Background and Objectives:This study evaluated the effectiveness of a telephone-based cognitive-behavioral therapy for family caregivers of people with dementia in existing health care provision structures. Research Design and Methods:Two hundred seventy-three family caregivers of people with dementia were randomly assigned to receive the intervention or usual care. Usual care included unrestricted access to community resources. Intervention group participants received twelve 50-min sessions of individual cognitive-behavioral therapy by trained psychotherapists within 6 months. Symptoms of depression, emotional well-being, physical health symptoms, burden of care, coping with the care situation and challenging behavior were assessed after the intervention ended and at a 6-month follow-up. Intention-to-treat analyses using latent change models were applied. Results:Intention-to-treat analyses showed improved emotional well-being (γ = 9.59, p = .001), fewer symptoms of depression (γ = -0.23, p = .043), fewer physical health symptoms (γ = -0.25, p = .019), improved coping with the care situation (γ = 0.25, p = .005) and the behavior of the care recipient (γ = 0.23, p = .034) compared with usual care. Effects for coping (γ = 0.28, p = .006 and γ = 0.39, p < .001, respectively) and emotional well-being (γ = 7.61, p = .007) were also found at follow-up. Discussion and Implications:The CBT-based telephone intervention increased mental and physical health as well as coping abilities of family caregivers of people with dementia. The intervention can be delivered by qualified CBT therapists after an 8-h training session in existing health care provision structures.
10.1093/geront/gnx183
Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review.
Hopwood Jenny,Walker Nina,McDonagh Lorraine,Rait Greta,Walters Kate,Iliffe Stephen,Ross Jamie,Davies Nathan
Journal of medical Internet research
BACKGROUND:Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. OBJECTIVE:In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. METHODS:We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. RESULTS:We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. CONCLUSIONS:Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.
10.2196/jmir.9548
Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial.
Boots Lizzy Mm,de Vugt Marjolein E,Kempen Gertrudis Ijm,Verhey Frans Rj
Journal of medical Internet research
BACKGROUND:The benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages. OBJECTIVE:The current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group. METHODS:A single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale). RESULTS:A significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress. CONCLUSIONS:This study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia. TRIAL REGISTRATION:Netherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg).
10.2196/10017