Caregiver Outcomes of a Dementia Care Program

The University of California, Los Angeles Alzheimer’s and Dementia Care (ADC) program enrolls people with dementia (PWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, the PWDs’ behavioral and depressive symptoms improved. In addition, at one-year, caregiver depression, distress related to behavioral symptoms, and caregiver strain also improved. Not all dyads enrolled in the ADC program appear to experience benefit. Although strain and distress remained stable or decreased for the majority of caregivers, a portion reported an increase in both. Semi-structured interviewed were completed with 12 caregivers over the telephone. Based on their answers seven themes were identified. These themes included: caregiver perception of being provided recommendations that did not match perceived care needs, existence of barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, received behavioral recommendations that the caregiver felt did not work, and dementia expert had poor rapport with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers did feel that the program was beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program

Expert-based development of a generic HACCP-based risk management system to prevent critical negative energy balance in dairy herds

The objective of this study was to develop a generic risk management system based on the Hazard Analysis and Critical Control Point (HACCP) principles for the prevention of critical negative energy balance (NEB) in dairy herds using an expert panel approach. In addition, we discuss the advantages and limitations of the system in terms of implementation in the individual dairy herd. For the expert panel, we invited 30 researchers and advisors with expertise in the field of dairy cow feeding and/or health management from eight European regions. They were invited to a Delphi-based set-up that included three inter-correlated questionnaires in which they were asked to suggest risk factors for critical NEB and to score these based on 'effect' and 'probability'. Finally, the experts were asked to suggest critical control points (CCPs) specified by alarm values, monitoring frequency and corrective actions related to the most relevant risk factors in an operational farm setting. A total of 12 experts (40 %) completed all three questionnaires. Of these 12 experts, seven were researchers and five were advisors and in total they represented seven out of the eight European regions addressed in the questionnaire study. When asking for suggestions on risk factors and CCPs, these were formulated as 'open questions', and the experts' suggestions were numerous and overlapping. The suggestions were merged via a process of linguistic editing in order to eliminate doublets. The editing process revealed that the experts provided a total of 34 CCPs for the 11 risk factors they scored as most important. The consensus among experts was relatively high when scoring the most important risk factors, while there were more diverse suggestions of CCPs with specification of alarm values and corrective actions. We therefore concluded that the expert panel approach only partly succeeded in developing a generic HACCP for critical NEB in dairy cows. We recommend that the output of this paper is used to inform key areas for implementation on the individual dairy farm by local farm teams including farmers and their advisors, who together can conduct herd-specific risk factor profiling, organise the ongoing monitoring of herd-specific CCPs, as well as implement corrective actions when CCP alarm values are exceeded

Overwhelmed: a Dementia Caregiver Vital Sign.

BackgroundThe emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program.ObjectiveTo examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes.DesignLongitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia.ConclusionsA single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources

Chronic disease management: why dementia care is different.

With the rise in the population of older adults, the number of individuals living with chronic diseases that need management will increase dramatically. Successful programs have been developed for chronic conditions (eg, heart failure, diabetes, asthma, chronic obstructive pulmonary disease) that use principles of self-management, monitoring, and care coordination. However, because of the effects of dementia on the mind including behavioral complications, the progressive loss of capacity for affected individuals to participate in care or decision-making, the devastating effects on care partners, and the scope of disease management beyond medical issues, the management of dementia is different and demands different approaches. The success of dementia management will depend upon how well the care provided is able to maximize the function, independence, and dignity of the individual living with dementia while minimizing care partner strain and burnout

The University of California at Los Angeles Alzheimer's and Dementia Care program for comprehensive, coordinated, patient-centered care: preliminary data.

Dementia is a chronic disease that requires medical and social services to provide high-quality care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poorer than that for other diseases that affect older persons. The University of California at Los Angeles (UCLA) Alzheimer's and Dementia Care (UCLA ADC) program partners with CBOs to provide comprehensive, coordinated, patient-centered care for individuals with Alzheimer's disease and other dementias. The goals of the program are to maximize function, independence, and dignity; minimize caregiver strain and burnout; and reduce unnecessary costs. The UCLA ADC program consists of five core components: recruitment and a dementia registry, structured needs assessments of individuals in the registry and their caregivers, creation and implementation of individualized dementia care plans based on needs assessments and input from the primary care physicians, monitoring and revising care plans as needed, and around-the-clock access for assistance and advice. The program uses a comanagement model with a nurse practitioner Dementia Care Manager working with primary care physicians and CBOs. Based on the first 150 individuals served, the most common recommendations in the initial care plans were referrals to support groups (73%) and Alzheimer's Association Safe Return (73%), caregiver training (45%), and medication adjustment (41%). The program will be evaluated on its ability to achieve the triple aim of better care for individuals, better health for populations, and lower costs

Caregiver outcomes of a dementia care program.

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs' behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers' perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program

Recommendations to Improve Payment Policies for Comprehensive Dementia Care.

Access to comprehensive dementia care is limited. Recent changes in billing for professional services, including new physician fee schedule codes, encourage clinicians to provide new services; however, current reimbursement does not cover costs for all needed elements of dementia care. The Payment Model for Comprehensive Dementia Care Conference convened more than 50 national experts from diverse perspectives to review promising strategies for payment reform including ways to accelerate their adoption. Recommendations for reform included payments for services to family caregivers; new research to determine success metrics; education for consumers, providers, and policymakers; and advancing a population health model approach to tier coverage based on risk and need within a health system

Dementia care navigation: Building toward a common definition, key principles, and outcomes

Abstract INTRODUCTION As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient‐, provider‐, and systems‐level barriers. Due to its high incidence, duration, and medical–social complexity, dementia is an ideal candidate for a patient‐centric health care delivery model such as care navigation. METHODS The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence‐based guidelines. RESULTS Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long‐term care placement. Well‐being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self‐reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs. DISCUSSION This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs. Highlights Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems. The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence‐based guidelines or principles. These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs