Caregivers Of Patients Research Articles

The Impact of Metrifonate Therapy on Caregivers of Patients with Alzheimer's Disease: Results from the MALT Clinical Trial

To assess the impact on burden reported by caregivers of patients with mild to moderate Alzheimer's disease (AD) who were treated with metrifonate during a randomized double blind clinical trial. Randomized clinical trial, with a 2-week screening period and a 26-week double blind, placebo controlled, treatment phase. Caregivers were assessed at baseline, at 12 weeks, and at end of trial. Caregivers were interviewed at clinics as part of the assessment of the patients. Six hundred and three caregivers of AD patients who were enrolled in the MALT trial; 591 (98%) provided data suitable for analysis at baseline, and 546 (91%) provided data allowing for inclusion in the analysis of change scores. The Caregiver Burden Assessment consisted of the Screen for Caregiver Burden, including both subjective (SCB-subj) and objective (SCB-obj) scores; the cognitive subscale of Poulshock and Deimling (PD); an abridged version of the Relatives Stress Scale (aRSS); assessments of time spent in providing care, including the Caregiver Activity Time Scale (CATS); and demographic and background variables on both the patient and caregiver. Treatment of mild to moderate AD patients with metrifonate for a duration of 26 weeks significantly reduced the psychological burden of care to the caregivers, as measured by the SCB-subj, the PD, and the aRSS. There were no statistically significant differences on the measures assessing the time spent in caregiving, except for the caregiver's subjective impression of the change in time spent providing care during the trial. When comparing individual dose groups, most of the measures of burden showed the largest benefits in burden for the 60/80 mg group, followed by the 40/50 mg group, and then the placebo group. However, there was no statistically significant dose effect. This study provides the first evidence from a randomized clinical trial of any acetylcholinesterase inhibitor used in the treatment of AD demonstrating a positive impact on the patient's caregiver as well as benefits to the patient. These results were shown consistently across several measurement scales and were observed after six months of treatment. These findings reinforce the clinical significance of research that has shown that metrifonate has beneficial impacts on the cognitive, behavioral, and functional abilities of AD patients. Because caregiver burden is a leading factor in the decision for institutional care placement, the ability to favorably impact that burden through pharmacological treatment of the patient is important.

Outcome after complex neurosurgery: the caregiver's burden is forgotten.

The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers. Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities. Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial-hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died--outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work. After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound-a burden perhaps not fully appreciated by the surgeon.

Weight Gain in FTT Population Post RD Intervention

Three months of outcome data on failure to thrive patients demonstrated the positive effects of intervention by an RD via improved weight status. All patients included in the study had to meet the criteria: 1) have a primary diagnosis of FTT, and 2) must be free from other diseases that have an impact on weight Within the data collection period 8/13/98-11/17/98,12 subjects met this criteria, to include 4 females and 8 males. Subjects ranged in age from 14 months to 9 years of age. The primary interventions provided to the subjects during the visit were nutritional counseling and medical intervention to rule out any organic causes for FTT. Weight information prior to the visit was obtained from the patient's medical record. Each patient's care giver was counseled for a 20-30minute period of time using an individualized education approach appropriate for the age of the patient The mam outcome, growth, was measured by weighing the child and converting to a percentage of expected weight gain based on Foman's expected weight gain for age data. Descriptive statistics to include percent of net change in weight were derived from this data. The z score was calculated to assess discrete changes in growth. Comparing baseline to post RD intervention data the percentage of children exhibiting > 100% of expected growth (catch up growth) improved from 16.7% (2/12) to 58.3% (7/12). The patients exhibiting weight gain of 50-100% of expected growth changed from 41.7% (5/12) to 16.7% (2/12). The patients exhibiting weight gain of 50% or less of expected growth changed from 33.3% (4/12) to 25% (3/12). The z score statistical analysis demonstrated that 75% (9/12) of patients experienced an improvement in weight status (z score increased post intervention.) The results illustrate a marked increase in the number of patients experiencing catch up growth (>100% of expected), as well as an increase in z score, a sensitive monitor of discrete weight changes. The integral role of RD intervention in the FTT population can be defined not only as improvement in patient care, but also as a significant cost savings per case. The ADA has derived that upwards of $13,758 can be saved when the complications of Pediatric FTT ( hospitalizations, and resulting mental and physical retardation) are treated.

Caring for the caregivers.

Although direct care of the patient with Alzheimer's disease remains the focus of the physician's concern, the importance of evaluating and responding to the needs of that patient's caregivers cannot be ignored. Osteopathic physicians provide a truly holistic approach to treatment of the patient with Alzheimer's disease when that treatment includes the care of the entire family. This article provides a brief overview of the major issues affecting caregiving for the patient with Alzheimer's disease. It describes the warning signs of caregiver burnout; and it provides guidelines for accessing resources available to assist the caregivers.

Outcome after complex neurosurgery: the caregiver's burden is forgotten

Object The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers. Methods Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities. Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial-hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died--outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work. Conclusions After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound--a burden perhaps not fully appreciated by the surgeon.

Loracarbef versus clarithromyin in children with acute otitis media with effusion

Two multicenter, randomized, singlemasked, paralle1-group studies compared loracarbef and clarithromycin with regard to efficacy, tolerability, and patient acceptance. Three hundred thirty-four children aged 6 months to 3 years with acute otitis media with effusion received loracarbef (15 mg/kg) or clarithromycin (7.5 mg/kg) orally twice daily for 10 days. Patients were assessed for the presence of the diagnostic signs and symptoms of otitis media with effusion by physical examination and pneumatic otoscopy at 48 hours pretreatment, 3 to 5 days after initiation of treatment, 0 to 3 days after the final dose (posttreatment), and 14 to 21 days later (termination). Symptoms were assigned numeric values. Symptomatic response was assessed at the posttherapy and termination visits. Tolerability was determined by assessing adverse events, and a patient acceptance survey was completed by each patient's caregiver. The combined results of these 2 studies showed that the efficacy and tolerability of loracarbef were comparable to those of clarithromycin. Adverse events were reported by 46.4% of loracarbef patients and 41.0% of clarithromycin patients, with no statistically significant difference between groups. In the intent-to-treat analysis, 57.9% of loracarbef patients were cured at the termination of the study, compared with 55.7% of clarithromycin patients. Improvement was seen in 4.1% of loracarbef patients and 2.7% of clarithromycin patients. Results of the patient acceptance survey showed a clear preference for loracarbef over clarithromycin. Difficulties with administration of treatment were reported by 36.3% of clarithromycin caregivers, compared with 7.8% of loracarbef caregivers ( P < 0.001). A desire to stop treatment was reported by 23.8% of clarithromycin caregivers, compared with 7.8% of loracarbef caregivers ( P < 0.001). Taste and texture issues were most frequently cited as reasons for nonacceptance.

Alzheimer Disease 1999

Although the cause of Alzheimer disease (AD) remains a mystery, a great deal of progress has been made over the past 15 years. A large body of evidence suggests that beta amyloid (Abeta) deposition and toxicity are critical steps leading to neuronal death in AD. Evidence is beginning to show that antioxidant and antiinflammatory drugs and estrogen may prevent, delay onset, or slow the progression of AD. Until a cure is found it will be necessary to provide high-quality long-term and palliative care in the community or in specialized treatment centers. The AD patient's caregiver often suffers in silence and research is needed to better understand disease burden to design appropriate interventions for these victims of AD.

Elder abuse: a call to action.

An estimated 2 million people a year are victims of elder abuse, which ranges from neglect and mistreatment to physical abuse. By the year 2020, a full 22% of the population will be aged 65 or older. This demographic explosion demands that we identify and protect those at risk. To investigate the incidence of elder abuse or neglect (EAN) and to determine clinician awareness of associated risk factors, we conducted a 1-year retrospective review of thermally injured patients aged 60 or older. Data included age, total body surface area burned, mechanism of injury, length of hospital stay, mortality, abuse or neglect risk factors, and referral to the appropriate social agency. We found that our elderly patients (n = 28) were poorly screened for EAN. While 64% to 96% of patients were screened for cognitive impairment, overall health, and financial resources, none were screened for risk factors of emotional isolation. None of the patient's caregivers, including any spouses, roommates, or guardians, were screened for risk factors of substance abuse, familial violence, dependency needs, or external stresses. With the use of available data, we were able to place 11 patients on the following levels of abuse or neglect: 1) low risk for abuse; 2) self-neglect; 3) neglect; and 4) abuse. By this scale, 7 patients (64%) were victims of self-neglect, 3 patients (27%) were victims of neglect, and 1 patient (9%) was a victim of abuse. Adult Protective Services intervened in 2 cases. Recognizing that all cases of EAN should be preventable, we cannot accept the socioeconomic impact of this entity. The 11 patients identified as victims of neglect, self-neglect, or abuse accounted for 135 hospital days and 8 fatalities. Before we can address EAN, health care personnel must be made aware of the problem and routine screening for risk factors must be implemented. The true incidence of EAN is likely underestimated because health care providers have difficulty recognizing its features. A standard assessment tool to screen for neglect or abuse should be used for each older adult admission.

The promise of a good death

The promise of a good death

The Development and Use of Codes for Chaplain Interventions (Procedures and Products) in the Veterans Affairs Healthcare System

Patient care outcomes and fiscal impact are of crucial importance to chaplains in the VA. The time has passed in the VA when chaplains can feel secure simply by providing quality spiritual/pastoral care. It is crucial that this care now be recorded, reported, measured, and evaluated for efficacy of overall patient outcomes. Chaplains must become known as direct patient care givers who effect positive outcomes in not only the measurable spiritual/religious areas, but overall positive patient efficacy. The development and use of these chaplain product and procedure codes is crucial in that recording and evaluation process.

OPTIONS FOR LONG-TERM VENTILATORY SUPPORT

Long-term mechanical ventilator support for patients with chronic respiratory failure is becoming more common. This article reviews the common causes for chronic ventilator dependence, and offers an approach to weaning these patients from the ventilator. In addition, the details for preparing these patients for prolonged mechanical ventilation outside of the acute-care hospital setting are discussed. Appropriate education of the patient's caregivers is key to the success of long-term ventilatory support outside of the acute-care hospital.

The Neuropsychiatric Inventory: assessing psychopathology in dementia patients.

The Neuropsychiatric Inventory (NPI) was developed to assess psychopathology in dementia patients. It evaluates 12 neuropsychiatric disturbances common in dementia: delusions, hallucinations, agitation, dysphoria, anxiety, apathy, irritability, euphoria, disinhibition, aberrant motor behavior, night-time behavior disturbances, and appetite and eating abnormalities. The severity and frequency of each neuropsychiatric symptom are rated on the basis of scripted questions administered to the patient's caregiver. The NPI also assesses the amount of caregiver distress engendered by each of the neuropsychiatric disorders. A total NPI score and a total caregiver distress score are calculated, in addition to the scores for the individual symptom domains. Content validity, concurrent validity, inter-rater reliability, and test-retest reliability of the NPI are established. Different neurologic disorders have characteristic neuropsychiatric manifestations and distinctive NPI profiles. The NPI is sensitive to treatment effects and has demonstrated the amelioration of behavioral symptoms in Alzheimer's disease by cholinergic agents. The NPI is a useful instrument for characterizing the psychopathology of dementia syndromes, investigating the neurobiology of brain disorders with neuropsychiatric manifestations, distinguishing among different dementia syndromes, and assessing the efficacy of treatment.

Perspectives of an Institution-Based Research Nurse

Behavioral disturbance of dementia are described in the literature as related to brain damage and premorbid personality. This perspective, however, does not consider that a patient with dementia is a human being who feels, thinks, wishes, and behaves. It also does not consider that the dysfunctional behavior may be related to the patient's other behaviors or to the behaviors of the patient's caregivers. Although rating scales are commonly used to assess behavioral disturbances, an assessment that a patient shouts, for example, is meaningless unless the situation in which the patient shouts is considered. What provoked the patient to shout? How does the caregiver react when the patient shouts? Understanding the context in which the behavioral disturbance occurs is important for developing effective care plans. Effective treatment is necessary because behavioral disturbances can negatively affect the quality of care received by institutionalized patients with dementia.

Customizing Patient Diet Lists by Downloading Mainframe Data to a Local Computer Network

Registered Dietitians (RDs), like nurses, doctors and other patient care givers in the hospital environment, rely on the gathering and processing of information and data as an essential component of their clinical practice. Computers can streamline this process by freeing the care giver from the repetitive task of gathering data from multiple sources RDs at a large teaching hospital have traditionally relied on diet lists produced from the hospital mainframe Diet Order Entry System (DOES). These lists contain basic information such as the patient's name, location, current diet order, information regarding snacks and whether a nutritional consultation is required. This information is then supplemented by additional data collected by the RD from other mainframe computer databases and medical records.Mainframe diet lists have recently been replaced by customized diet lists. The Food and Nutrition Services (FANS) department developed a program to download, combine, sort and filter data from several mainframe computer applications in order to build a single database on the department's local network of personal computers. Applications such as the DOES, the Patient Management System, and the Pharmacy Medication Order System are “tapped” in order to include the patient's registration number, birth and admission dates, the medical service, the nature of the RD consult, and the diagnosis.The RDs worked together to define a format for the presentation of this data. They found that changing fonts in the printed report to highlight critical information and emphasizing messages by the addition of graphic images made the report easier to use. The flexibility of having a database on the network also allows the FANS department to filter data needed by a specific RD, such as a list of all patients on tube feedings or a list of all patients followed by the trauma service. In the near future, data will be incorporated into the database to identify medications that have significant nutrient interactions so they can be noted and flagged on the diet list in accordance with the standards of the Joint Commission on Accreditation of Healthcare Organizations.The customized diet list enables RDs to have relevant information, such as admission date, mode of feeding, and diagnosis, contained in one source. This increases efficiency and productivity and streamlines the prioritization of daily work.

Sleep Disorders in Dementia

Sleep-wake cycle abnormalities are often the greatest source of disruption in the lives of the demented patient's caregivers.

The head nurse role in redesign.

As administrators review how best to meet patient's needs and redesign patient care givers' job content, as well as introduce multiskilled workers to the patient care unit, the head nurse role must be reviewed and revamped at the same time. The author describes the experiences of two different institutions in overloading the head nurses with reporting relationships that they were ill-equipped to supervise. The solution in both institutions was the same, and emphasizes the need for interactive planning for these complex and interdependent models.

Culture and cancer: the relevance of cultural orientation within cancer edcation programmes

Health professionals are frequently called upon to care for those whose cultural backgrounds are unfamiliar and different from their own. The impact of the family's cultural values and beliefs in their response to a diagnosis of cancer are not emphasized in health professionals' education and consequently, may be underestimated, leading to less effectsivce care. Analysis of the experiences of 12 immigrant families in a western health care setting reveals that culturally embedded meanings are attached to illness, and this frequently affects patient and family responses to care. For instance, in certain cultures, the occurrence of cancer may be attributed to insufficient use of herbal medicine, an insult to an ancestor ordue to a perceived punishment. Thus, standard medical approaches may not always appeatr releveant to certain groups in multicltural patient populations. The purpose of this paper is to describe patient and family coping experiences and stress-related factors in Italian, Portuguese and Chinese immigrant families as they have been described during routine family assessment interviews. It is argued that there is need for an expanded knowledge of health professionals who manage those with cancer so that culturally embedded meanings can be adequately understood. It is maintained that models of patient and family care should allow for possible discrepancies in patient-care giver understandings, and encourage a collaborative approach towards treatment and care. The paper concludes that cultural content must be an integral part of cancer education programmes in order for health professionals to be effective in their practice and care.

Long-term survival, prognosis, and life-care planning for 29 patients with chronic locked-in syndrome.

We present a life-table analysis of a cohort of 29 locked-in syndrome (LIS) patients followed for a minimum of five years, and we report on the status of the chronic LIS patient. Twenty-nine LIS patients who remained locked-in for more than one year were identified. Inpatient charts were reviewed for demographic, medical, and functional data. Telephone followup was obtained to examine medical complications after discharge, survival, neurologic recovery, care issues, and permanent disposition. A life-table analysis was performed on survival data. Cerebrovascular disease was the most common cause of LIS. Survival ranged from 2.02 to 18.15 years. Twenty of the 26 patients available for five-year followup survived; hence, five-year survival was 81%. An alternative method of communication and emotional stress for the patient's caregiver was the key issue in patient care. Most patients were cared for in their own homes. Although minimal late neurologic recovery occurs in chronic LIS, survival may, nonetheless, be prolonged with adequate supportive care. Modern computerized technology offers LIS patients the ability to interact with their environment. This information may assist physicians in making ethical and long-term care decisions with the patient rather than for the patient with LIS.

Working Group Recommendations: Measuring Outcomes of Care in Geriatric Evaluation and Management Units

Issues related to measuring outcomes of care in geriatric evaluation and management (GEM) units were identified by the outcomes working group of the GEM evaluation conference. GEM units have as a major goal the improvement or maintenance of both physical and psychosocial function. Suggested outcome measures for physical health included survival, restricted activity days, general health perceptions, comprehensive physical function, and miscellaneous specific types of functioning. In the area of psycho-social function, the working group suggested measuring cognitive function, affect/life satisfaction, social function, and satisfaction with care. The patient's caregiver (eg, spouse or child) is often an important target of GEM care, and the group suggested measuring caregiver burden, life satisfaction, and assessment of patient behavior problems. While the primary goal of GEM units is to improve health status, their effects on the utilization and cost of health care are important to decisions about wide-spread implementation and funding. The group therefore suggested a comprehensive assessment of these outcomes. Among the large array of recommended outcomes, the most important were thought to be mortality, function, and cost.

The Natural History of Functional Morbidity in Hospitalized Older Patients

This study provides data on changes in the functional status of older patients that are associated with acute hospitalization. Seventy-one patients over the age of 74 admitted to the medical service of Stanford University Hospital between February and May 1987 received functional assessments covering seven domains: mobility, transfer, toileting, incontinence, feeding, grooming, and mental status. Assessments were obtained by report from the patient's caregiver (or the patient when he or she lived alone) for 2 weeks before admission; from the patient's nurse on day 2 of hospitalization and on the day before discharge; and again from the caregiver (or patient) 1 week after discharge. The sample had a mean age of 84, covered 37 Diagnostic Related Groups, and had a median length of stay of 8 days. Between baseline and day 2, statistically significant deteriorations occurred for the overall functional score and for the individual scores for mobility, transfer, toileting, feeding, and grooming. None of these scores improved significantly by discharge. In the case of mobility, 65% of the patients experienced a decline in score between baseline and day 2. Between day 2 and discharge, 67% showed no improvement, and another 10% deteriorated further. These data suggest that older patients may experience a burden of new and worsened functional impairment during hospitalization that improves at a much slower rate than the acute illness. An awareness of delayed functional recovery should influence discharge planning for older patients. Greater efforts to prevent functional decline in the hospitalized older patient may be warranted.