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Wearable Technology to Garner the Perspective of Dementia Family Caregivers
Abstract
Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses. [Journal of Gerontological Nursing, xx(x), xx-xx.].
... The proposed IADL/CAT system embraces contextual and environmental cueing functionalities, including navigation cueing for indoor wayfinding and task cueing, which directly address the prevalent IADL challenges (Matthews et al., 2016;Meditskos et al., 2018). The caregiver can program a selection of objects in the room for which the care recipients need assistance (i.e. ...
... While other CAT and intelligent systems are being developed to support various assistive tasks, there is a persistence of structural limitations to successful adoption due to a lack of clinical validation and insufficient focus on user needs. There is often a mismatch between the user's cognitive profile and the CAT developed, which may be the consequence of top-down approach to technology design (Matthews et al., 2016). A bottom up (usercentered) approach is needed to develop technologies that are useful and valuable for PWD and their caregivers to understand what kind of assistance is needed. ...
... A bottom up (usercentered) approach is needed to develop technologies that are useful and valuable for PWD and their caregivers to understand what kind of assistance is needed. This requires a thorough understanding of experiences and coping mechanisms and the continuously changing circumstances of the dementia journey (Matthews et al., 2016). The NIH funded IADL/CAT research will involve (1) studying users, (2) designing for the problem, (3) testing the IADL system components and (4) evaluating the IADL/CAT system. ...
5.5 million Americans have Alzheimer’s disease or some form of dementia and by mid-century, the number of people living with dementia in the United States is projected to grow to 13.8 million. About half of the persons with dementia currently live at home, 43% require occasional support, 47% daily support, and 10% continuous support; with most of this support provided by informal family caregivers. Caregivers face on-going significant risk throughout the ebb and flow of providing care, as care recipients may lose grasp of their understanding of their circumstances, relying heavily on caregivers for all aspects of support. This support includes prompting and cueing through the multi-step instrumental activities of daily living (IADLs) such as meal preparation and house-keeping which require complex cognitive processing and are cognitively demanding. This paper describes the preliminary pilot study work laying the groundwork for ongoing development of a cognitive assistive technology (CAT) to support IADLs in dementia homecare. Through a user-centered design methodology, an online survey for caregivers identified areas of the home with the highest levels of IADL needs, aiding in the development of an 800 sq ft mock-up apartment for preliminary testing of the mobile interface for the CAT tool.
... As dementia progresses and the cognitive and functional abilities of affected individuals decline, behavioral symptoms such as agitation and aggression become increasingly prominent [24]. These behaviors place a large burden on the families and caregivers helping to manage the disease [23]. However, it is common for patients with dementia to present differently in the clinic than they do at home, leaving clinicians with an incomplete picture of the dementia symptoms. ...
... However, it is common for patients with dementia to present differently in the clinic than they do at home, leaving clinicians with an incomplete picture of the dementia symptoms. This discrepancy may affect the accuracy of a clinician's assessment and decrease the efficacy of a treatment plan [23]. Given the limited amount of time during which clinicians directly observe their patients, and the substantial burden that poor symptom management has on caregivers, there is a clear need for improvements in the quality and volume of objective data available to guide clinical decision-making. ...
... Rather, two caregivers reported that wearing the vest in front of the patient actually increased cooperation [34]. Additionally, clinicians were able to use the footage to offer feedback to caregivers, which caregivers often welcomed [23]. ...
Purpose of review:
Recent advances in technology have changed the landscape of treatment for adults with mental illness. This review highlights technological innovations that may improve care for older adults with mental illness and neurocognitive disorders through the measurement and assessment of physical motion. These technologies include wearable sensors (such as smart watches and Fitbits), passive motion sensors, and smart home models that incorporate both active and passive motion technologies.
Recent findings:
Clinicians have evaluated motion measurement technologies in older adults with depression, dementia, anxiety, and schizophrenia. Results from studies in dementia populations suggest that motion measurement technologies can assist clinicians in diagnosing dementia earlier through the evaluation of gait, balance, and postural kinematics. Motion detection technologies can also be used to identify mood episodes at an earlier stage by detecting subtle behavioral changes. Clinicians may use the objective data provided by technologies such as accelerometers to identify illnesses earlier, which may inform treatment decisions. The data may be used as a suitable surrogate marker for detecting depression in older adults, predicting the likelihood of falls, or quantifying physical activity in older adults with chronic mental illnesses or anxiety. Motion-based technologies also have the potential to detect physical activity for older adults residing in nursing homes. Wearable technologies are generally well tolerated in older adults, although the use of new technology and electronic health data could involve privacy and security concerns among this vulnerable population.
... One study used a custom-made wearable camera system, worn by caregivers, to monitor patients' dementia-related behaviour. 30 The system was piloted with 18 patients with dementia and their caregivers over two weeks or for one 3-5-day period. Three hundred and forty-one hours of usable video was collected, containing 248 salient events (dementia-related behaviour or caregiving interactions). ...
... Three hundred and forty-one hours of usable video was collected, containing 248 salient events (dementia-related behaviour or caregiving interactions). 30 Further development may lead to this technology being used to provide validation of caregiver observations, and accessible, unbiased monitoring of changes in patients' behaviour, cognition and needs over time. 30 Cognitive assistance Smartwatches One study investigated commercially available smartwatch technology to provide ADL assistance for patients with dementia, 31 implementing smartwatch apps, and a paired smartphone, to assist scheduling, navigation, orientation to time and communication, as well as monitor activity levels. ...
... 30 Further development may lead to this technology being used to provide validation of caregiver observations, and accessible, unbiased monitoring of changes in patients' behaviour, cognition and needs over time. 30 Cognitive assistance Smartwatches One study investigated commercially available smartwatch technology to provide ADL assistance for patients with dementia, 31 implementing smartwatch apps, and a paired smartphone, to assist scheduling, navigation, orientation to time and communication, as well as monitor activity levels. The system was tested by five memory clinic patients and their spouses in a controlled lab setting. ...
Dementia is the most widespread form of neurodegenerative disorder and is associated with an immense societal and personal cost. Prevalence of this disorder is projected to triple worldwide by 2050 leading to an urgent need to make advances in the efficiency of both its care and therapy research. Digital technologies are a rapidly advancing field that provide a previously unavailable opportunity to alleviate challenges faced by clinicians and researchers working in this area. This clinical review aimed to summarise currently available evidence on digital technologies that can be used to monitor cognition. We identified a range of pervasive digital systems, such as smartphones, smartwatches and smart homes, to assess and assist elderly demented, prodromal and preclinical populations. Generally, the studies reported good level of agreement between the digital measures and the constructs they aimed to measure. However, most of the systems are still only in the initial stages of development with limited data on acceptability in patients. Although it is clear that the use of digital technology to monitor and support the cognitive domains affected by dementia is a promising area of development, additional research validating the efficacy, utility and cost-effectiveness of these systems in patient populations is needed.
... This population typically experiences complex health and social care needs, often resulting in adverse events and costly emergency department visits and hospitalizations. National expenditures for older adults with MCCs represent more than half of Medicare spending (Matthews et al., 2016). Furthermore, older adults and their families interact with a fragmented health care system, commonly experience significant barriers to critical information and, thus, are unable to participate in decision-making. ...
... A second example is the Transitional Care Model (Naylor, 2012) which incorporates a nurse-led, team-based care delivery system innovation that aligns care services with the preferences, needs, and values of high-risk individuals and their family caregivers while achieving higher quality outcomes at a reduced cost. Other nurse-led innovations include the use of hardware tools such as wearable devices that accurately capture communication barriers and facilitators for caregivers of persons with dementia (Matthews et al., 2016) and software tools such as a decisionsupport software and underlying algorithm (Bowles et al., 2016) that identifies patients who need postacute care, ensuring that high-risk patients receive adequate postacute care plans at home. Innovation can also be found in the redesign of processes or elements of the built environment such as the conceptualization of the acuity-adaptable hospital room (Hendrich, Fay, & Sorrells, 2004). ...
Background:
Our health care system is facing unprecedented and complex challenges in caring for older adults and their families. A paradigm shift is needed that recognizes new roles and competencies for nurses to play a leadership role in the design and implementation of high value care models.
Purpose:
The purpose of this paper is to introduce a series of recommendations for leveraging nurses to generate innovative tools and solutions for the delivery of value-based care for older adults living with complex health and social needs and their families.
Methods:
These recommendations were generated by a Think-Tank of national experts based on review of current evidence and focus groups with older adults.
Discussion:
The generated recommendations focus on positioning nurses to assume leadership roles in implementing evidence-based care models, preparing nurses to serve as health innovators and catalysts of system transformation, and fostering system-level infrastructure that leverages the contributions of nurses for current and emerging roles.
Conclusion:
Nurses as innovators can address the challenges in providing high quality care for older adults with complex needs and their families. System-level infrastructure, including resources for training and implementation of well-established programs, is necessary to leverage the contributions of nurses and facilitate innovative approaches to care.
... Finally, new interest in wearables that send signals to phones or tablets has spurred the development of interventions to help caregivers address persons with dementia (Mahoney, Coon, & Lozano, 2016), and to share caregiver perspectives (Matthews et al., 2016). Chen and Schulz (2016) offer analysis on how technology can reduce social isolation. ...
Since the late 1990s, family caregiving theories have contributed significantly to improve our understanding of the dynamic and diverse experiences of caregivers. Some theories have been translated into best practices to deliver a broad range of programs for family caregivers. However, researchers still have not been able to translate most of these theories into interventions for low-income and culturally diverse caregivers. This chapter highlights current knowledge, research, and practice available and, for the most part, based on stress and coping conceptual models, for Latino older adults with dementia and their family caregivers. More specifically, we discuss how existing support services for Latino caregivers are able to address multiple threats associated with their experience of dementia, their cultural family context, and the everyday challenges associated with their low-income status and limited available resources. Several salient theoretical frameworks and innovative efforts that led to development of evidence-based knowledge are examined along with interventions to meet the needs of Latino family dementia caregivers.
Technology provides new opportunities for interventions to improve quality and access to health care. This study evaluated a telehealth application to support family dementia caregivers providing homecare. We explored feasibility of in-home video monitoring and feedback to help caregivers and reduce caregiving burden. A caregiver-patient dyad was recruited from a Midwestern University Alzheimer's Disease Center. The caregiver triggered video recordings on a laptop computer using a remote control that also recorded 5 min prior to pressing "record." Recordings were automatically uploaded via the Internet for interdisciplinary team review and feedback. Issues related to Internet transfer and storage of health information and computer security were addressed. Professionals reported the value of video recordings for identifying antecedents and evaluating caregiver responses. The caregiver reported improved communication and behavior management and ease of use. This study developed protocols, processes, and contractual arrangements and established the feasibility and benefits of home monitoring as a basis for ongoing research.
Cognitive impairments influence the possibility of persons with dementia to remember daily events and maintain a sense of self. In order to address these problems a digital photo diary was developed to capture information about events in daily life. The device consisted of a wearable digital camera, smart phone with Global Positioning System (GPS) and a home memory station with computer for uploading the photographs and touch screen. The aim of this study was to describe professional caregiver's perceptions on how persons with mild dementia might experience the usage of this digital photo diary from both a situation when wearing the camera and a situation when viewing the uploaded photos, through a questionnaire with 408 respondents. In order to catch the professional caregivers' perceptions a questionnaire with the semantic differential technique was used and the main question was "How do you think Hilda (the fictive person in the questionnaire) feels when she is using the digital photo diary?". The factor analysis revealed three factors; Sense of autonomy, Sense of self-esteem and Sense of trust. An interesting conclusion that can be drawn is that professional caregivers had an overall positive view of the usage of digital photo diary as supporting autonomy for persons with mild dementia. The meaningfulness of each situation when wearing the camera and viewing the uploaded pictures to be used in two different situations and a part of an integrated assistive device has to be considered separately. Individual needs and desires of the person who is living with dementia and the context of each individual has to be reflected on and taken into account before implementing assistive digital devices as a tool in care.
Optimal treatment to postpone functional decline in patients with dementia is not established.
To test a nonpharmacologic intervention realigning environmental demands with patient capabilities.
Prospective 2-group randomized trial (Care of Persons with Dementia in their Environments [COPE]) involving patients with dementia and family caregivers (community-living dyads) recruited from March 2006 through June 2008 in Pennsylvania.
Up to 12 home or telephone contacts over 4 months by health professionals who assessed patient capabilities and deficits; obtained blood and urine samples; and trained families in home safety, simplifying tasks, and stress reduction. Control group caregivers received 3 telephone calls and educational materials.
Functional dependence, quality of life, frequency of agitated behaviors, and engagement for patients and well-being, confidence using activities, and perceived benefits for caregivers at 4 months.
Of 284 dyads screened, 270 (95%) were eligible and 237 (88%) randomized. Data were collected from 209 dyads (88%) at 4 months and 173 (73%) at 9 months. At 4 months, compared with controls, COPE patients had less functional dependence (adjusted mean difference, 0.24; 95% CI, 0.03-0.44; P = .02; Cohen d = 0.21) and less dependence in instrumental activities of daily living (adjusted mean difference, 0.32; 95% CI, 0.09-0.55; P = .007; Cohen d = 0.43), measured by a 15-item scale modeled after the Functional Independence Measure; COPE patients also had improved engagement (adjusted mean difference, 0.12; 95% CI, 0.07-0.22; P = .03; Cohen d = 0.26), measured by a 5-item scale. COPE caregivers improved in their well-being (adjusted mean difference in Perceived Change Index, 0.22; 95% CI, 0.08-0.36; P = .002; Cohen d = 0.30) and confidence using activities (adjusted mean difference, 0.81; 95% CI, 0.30-1.32; P = .002; Cohen d = 0.54), measured by a 5-item scale. By 4 months, 64 COPE dyads (62.7%) vs 48 control group dyads (44.9%) eliminated 1 or more caregiver-identified problems (chi(2/1) = 6.72, P = . 01).
Among community-living dyads, a nonpharmacologic biobehavioral environmental intervention compared with control resulted in better outcomes for COPE dyads at 4 months. Although no group differences were observed at 9 months for patients, COPE caregivers perceived greater benefits.
clinicaltrials.gov Identifier: NCT00259454.
Research suggests that caregivers appreciate support from primary care physicians (PCPs) regarding dementia care; however, there remains a need for studies examining the role that PCPs play in behavior management. The purpose of this study was to quantitatively characterize the discussion on dementia-related behaviors (DRBs) during PCP visits and compare findings to an independently administered assessment of DRBs exhibited within a period of 4 weeks prior to the PCP visit. Twenty-five PCP visits of persons with dementia, in which caregivers coattended the visit, were audio-recorded and analyzed for occurrence of DRB discussion. Disruptive behaviors were reported by 80% of caregivers via independent assessment, yet discussed in 23% of medical visits. Dementia-related behavior discussion occurred in visits where caregivers independently reported significantly higher behavior frequency and behavior-related burden. Implications of findings for ways PCPs can assist the caregiver in behavior management are discussed.
Although technological products are unavoidable in contemporary life, studies focusing on them in the consumer behavior field have been few and narrow. In this article, we investigate consumers' perspectives, meanings, and experiences in relation to a range of technological products, emphasizing lengthy and repeated interviews with 29 households, including a set of first-time owners. We draw on literatures spanning from technology, paradox, and postmodernism to clinical and social psychology, and combine them with data collection and analysis in the spirit of grounded theory. The outcome is a new conceptual framework on the paradoxes of technological products and their influences on emotional reactions and behavioral coping strategies. We discuss the findings in terms of implications for theories of technology, innovation diffusion, and human coping, and an expanded role for the paradox construct in consumer research. Copyright 1998 by the University of Chicago.
Behavioural and psychological symptoms have a high prevalence amongst patients with dementia and can be a significant source of distress to both patients and carers. The present study explored the relationships between quality of life and behavioural and psychological symptoms in dementia (BPSD) from both patient and carer perspectives. Contextual factors surrounding the occurrence of BPSD were explored.
Forty-six patients and 116 carers completed questionnaire measures of BPSD and quality of life.
BPSD were negatively associated with both patient and carer ratings of patient quality of life. The symptoms related to lower quality of life differed between patient and carer ratings: depression and irritability were found to predict lower carer ratings of quality of life, whilst delusions and apathy indicated lower patient ratings. Carers were found to be poor at identifying antecedents and consequences of BPSD.
The presence of BPSD is associated with lower quality of life in dementia. Interventions designed to improve the quality of life for patients should focus on the BPSD specifically associated with the patient's rating of quality of life. Information regarding the role of contextual factors in behaviour management should be made available to carers.
The Revised Memory and Behavior Problems Checklist (RMBPC), a 24-item, caregiver-report measure of observable behavioral problems in dementia patients, provides 1 total score and 3 subscale scores for patient problems (memory-related, depression, and disruptive behaviors) and parallel scores for caregiver reaction. Data were obtained from 201 geriatric patients and their caregivers. Factor analysis confirmed 3 first-order factors, consistent with subscales just named, and 1 general factor of behavioral disturbance. Overall scale reliability was good, with alphas of .84 for patient behavior and .90 for caregiver reaction. Subscale alphas ranged from .67 to .89. Validity was confirmed through comparison of RMBPC scores with well-established indexes of depression, cognitive impairment, and caregiver burden. The RMBPC is recommended as a reliable and valid tool for the clinical and empirical assessment of behavior problems in dementia patients.
Analyzing data from more than 1,500 family caregivers from the 1996 National Caregiver Survey, this study documents the ways in which dementia care is different from other types of family caregiving. Not only do dementia caregivers spend significantly more hours per week providing care than nondementia caregivers, they also report greater impacts in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict. Differential impacts remain even after controlling for intensity of caregiving involvement and sociodemographic factors. Study findings suggest the need to tailor programs and services to the unique challenges faced by dementia caregivers.
The decision to institutionalize a patient with dementia is complex and is based on patient and caregiver characteristics and the sociocultural context of patients and caregivers. Most studies have determined predictors of nursing home placement primarily according to patient or caregiver characteristics alone.
To develop and validate a prognostic model to determine the comprehensive predictors of placement among an ethnically diverse population of patients with dementia.
The Medicare Alzheimer's Disease Demonstration and Evaluation study, a prospective study at 8 sites in the United States, with enrollment between December 1989 and December 1994 of 5788 community-living persons with advanced dementia.
Time to nursing home placement throughout a 36-month follow-up period, assessed by interview and review of Medicare records, and its association with patient and caregiver characteristics, obtained by interview at enrollment.
Patients were divided into a development (n = 3859) and validation (n = 1929) cohort. In the development cohort, the Kaplan-Meier estimates of nursing home placement throughout 1, 2, and 3 years were 22%, 40%, and 52%, respectively. After multivariate adjustment, patient characteristics that were associated with nursing home placement were as follows: black ethnicity (hazard ratio, 0.60; 95% confidence interval [CI], 0.48-0.74), Hispanic ethnicity (HR, 0.40; 95% CI, 0.28-0.56) (both ethnicities were inversely associated with placement), living alone (HR, 1.74; 95% CI, 1.49-2.02), 1 or more dependencies in activities of daily living (HR, 1.38; 95% CI, 1.20-1.60), high cognitive impairment (for Mini-Mental Status Examination score < or =20: HR, 1.52; 95% CI, 1.33-1.73), and 1 or more difficult behaviors (HR, 1.30; 95% CI, 1.11-1.52). Caregiver characteristics associated with patient placement were age 65 to 74 years (HR, 1.17; 95% CI, 1.01-1.37), age 75 years or older (HR, 1.55; 95% CI, 1.31-1.84), and high Zarit Burden Scale score (for highest quartile: HR, 1.73; 95% CI, 1.49-2.00). Patients were assigned to quartiles of risk based on this model. In the development cohort, patients in the first, second, third, and fourth quartile had a 25%, 42%, 64%, and 91% rate of nursing home placement at 3 years, respectively. In the validation cohort, the respective rates were 21%, 50%, 64%, and 89%. The C statistic for 3-year nursing home placement was 0.66 in the development cohort and 0.63 in the validation cohort.
Patient and caregiver characteristics are both important determinants of long-term care placement for patients with dementia. Interventions directed at delaying placement, such as reduction of caregiver burden or difficult patient behaviors, need to take into account the patient and caregiver as a unit.
This study developed and tested two 24-month primary care interventions to alleviate the psychological distress suffered by the caregivers of those with Alzheimer's disease. The interventions, using targeted educational materials, were patient behavior management only, and patient behavior management plus caregiver stress-coping management. We hypothesized that the addition of the stress-coping component would improve caregiver outcomes.
A randomized clinical trial of 167 caregiver-care recipient dyads was run, of whom 76 completed the study without bereavement or placement.
During 24 months, caregivers who received the patient behavior management component only, compared with those who also received the stress-coping component, had significantly worse outcomes for general well-being and a trend toward increased risk of depression (i.e., a score of >16 on the Center for Epidemiological Studies Depression scale). There was a studywide improvement for bother associated with care recipient behaviors (according to the Revised Memory and Behavior Problems Checklist).
Our data suggest that brief primary care interventions may be effective in reducing caregiver distress and burden in the long-term management of the dementia patient. They further suggest that interventions that focus only on care recipient behavior, without addressing caregiving issues, may not be as adequate for reducing caregiver distress.
Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse caregivers.
The pressing need for interventions to improve outcomes for vulnerable caregivers of individuals with Alzheimer's disease (AD) is hindered by inadequate knowledge of variables affecting intervention delivery, receipt, and enactment.
To analyze intervention implementation issues encountered within the Bathing Persons with Alzheimer's Disease at Home (BATH) study.
The BATH study, a home-based, randomized, controlled trial of interventions to improve behavioral symptoms and caregiver self-efficacy, consisted of 130 intervention visits to 42 care recipients-caregiver dyads. Data include direct observation, nurse interventionist field notes, case analyses, and caregiver journals, reflecting various perspectives. Content analysis was used to identify key treatment process themes.
Issues that affected the delivery, receipt, and enactment of interventions reflect the intersection of in vivo caregiving and research design.
The primary lessons learned were: (a) early identification of caring dyads prior to crisis must be improved; (b) in vivo observation is essential to individualized interventions targeting behavioral etiologies and developing caregiver skills; (c) intervention delivery depends on the nurse interventionist's skills and a flexible, trusting researcher-dyad relationship; (d) complex caregiver situations affect treatment receipt and enactment; and (e) intervention enactment requires coaching, practice, and support over time. These findings help to explain issues impacting intervention implementation to a vulnerable population. Recommendations for intervention research design to maximize internal and external validity in real-life care contexts can inform future outcome studies, aid in the search for improved care, and lead to supportive public policy for families living with AD.
The successful adoption of technology is becoming increasingly important to functional independence. The present article reports findings from the Center for Research and Education on Aging and Technology Enhancement (CREATE) on the use of technology among community-dwelling adults. The sample included 1,204 individuals ranging in age from 18–91 years. All participants completed a battery that included measures of demographic characteristics, self-rated health, experience with technology, attitudes toward computers, and component cognitive abilities. Findings indicate that the older adults were less likely than younger adults to use technology in general, computers, and the World Wide Web. The results also indicate that computer anxiety, fluid intelligence, and crystallized intelligence were important predictors of the use of technology. The relationship between age and adoption of technology was mediated by cognitive abilities, computer self-efficacy, and computer anxiety. These findings are discussed in terms of training strategies to promote technology adoption.
We sought to assess longitudinal association between self-monitoring of blood glucose (SMBG) and glycemic control in diabetic patients from an integrated health plan (Kaiser Permanente Northern California).
Longitudinal analyses of glycemic control among 1) 16,091 patients initiating SMBG (new-user cohort) and 2) 15,347 ongoing users of SMBG (prevalent-user cohort). SMBG frequency was based on pharmacy use (number of blood glucose test strips dispensed), and glycemic control was based on HbA(1c) (A1C). In the new-user cohort, ANCOVA models (pre- and posttest design) were used to assess the effect of initiating SMBG. In the prevalent-user cohort, repeated-measure, mixed-effects models with random-intercept and time-dependent covariates were used to assess changes in SMBG and A1C. All models were stratified by therapy (no medications, oral agents only, or insulin) and adjusted for baseline A1C, sociodemographics, insulin injection frequency, comorbidity index, medication adherence, smoking status, health care use, and provider specialty.
Greater SMBG practice frequency among new users was associated with a graded decrease in A1C (relative to nonusers) regardless of diabetes therapy (P < 0.0001). Changes in SMBG frequency among prevalent users were associated with an inverse graded change in A1C only among pharmacologically treated patients (P < 0.0001).
These observational findings are consistent with short-term benefits of initiating SMBG practice for all patients but continuing benefits only for pharmacologically treated patients. Differences in effectiveness between new versus prevalent users of SMBG have implications for guideline development and interpretation of observational outcomes data.
Dementia is a clinical state characterized by loss of function in multiple cognitive domains. It is a costly disease in terms of both personal suffering and economic loss. Frontotemporal dementia (FTD) is the term now preferred over Picks disease to describe the spectrum of non-Alzheimers dementias characterized by focal atrophy of the frontal and anterior temporal regions of the brain. The prevalence of FTD is considerable, though specific figures vary among different studies. It occurs usually in an age range of 35-75 and it is more common in individuals with a positive family history of dementia. The risk factors associated with this disorder include head injury and family history of FTD. Although there is some controversy regarding the further syndromatic subdivision of the different types of FTD, the three major clinical presentations of FTD include: 1) a frontal or behavioral variant (FvFTD), 2) a temporal, aphasic variant, also called Semantic dementia (SD), and 3) a progressive aphasia (PA). These different variants differ in their clinical presentation, cognitive deficits, and affected brain regions. Patients with FTD should have a neuropsychiatric assessment, neuropsychological testing and neuroimaging studies to confirm and clarify the diagnosis. Treatment for this entity consists of behavioral and pharmacological approaches. Medications such as serotonin reuptake inhibitors, antipsychotics, mood stabilizer and other novel treatments have been used in FTD with different rates of success. Further research should be directed at understanding and developing new diagnostic and therapeutic modalities to improve the patients' prognosis and quality of life.
Despite the high efficacy of continuous positive airway pressure (CPAP) to reverse upper airway obstruction in sleep apnea, treatment effectiveness is limited by variable adherence to prescribed therapy. When adherence is defined as greater than 4 hours of nightly use, 46 to 83% of patients with obstructive sleep apnea have been reported to be nonadherent to treatment. Evidence suggests that use of CPAP for longer than 6 hours decreases sleepiness, improves daily functioning, and restores memory to normal levels. The decision to embrace CPAP occurs during the first few days of treatment. Although many strategies in patient interface with CPAP or machine modality are marketed to improve CPAP usage, there are few data to support this. No single factor has been consistently identified as predictive of adherence. Patient perception of symptoms and improvement in sleepiness and daily functioning may be more important in determining patterns of use than physiologic aspects of disease severity. Emerging data suggest that various behavioral interventions may be effective in improving CPAP adherence.
We address an anomaly detection setting in which training sequences are unavailable and anomalies are scored independently of temporal ordering. Current algorithms in anomaly detection are based on the classical density estimation approach of learning high-dimensional models and finding low-probability events. These algorithms are sensitive to the order in which anomalies appear and require either training data or early context assumptions that do not hold for longer, more complex videos. By defining anomalies as examples that can be distinguished from other examples in the same video, our definition inspires a shift in approaches from classical density estimation to simple discriminative learning. Our contributions include a novel framework for anomaly detection that is (1) independent of temporal ordering of anomalies, and (2) unsupervised, requiring no separate training sequences. We show that our algorithm can achieve state-of-the-art results even when we adjust the setting by removing training sequences from standard datasets.
Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.
Background. The pressing need for interventions to improve outcomes for vulnerable caregivers of individuals with Alzheimer's disease (AD) is hindered by inadequate knowledge of variables affecting intervention delivery, receipt, and enactment. Objective: To analyze intervention implementation issues encountered within the Bathing Persons with Alzheimer's Disease at Home (BATH) study. Methods: The BATH study, a home-based, randomized, controlled trial of interventions to improve behavioral symptoms and caregiver self-efficacy, consisted of 130 intervention visits to 42 care recipients-caregiver dyads. Data include direct observation, nurse interventionist field notes, case analyses, and caregiver journals, reflecting various perspectives. Content analysis was used to identify key treatment process themes Results: Issues that affected the delivery, receipt, and enactment of interventions reflect the intersection of in vivo caregiving and research design. Discussion: The primary lessons learned were: (a) early identification of caring dyads prior to crisis must be improved; (b) in vivo observation is essential to individualized interventions targeting behavioral etiologies and developing caregiver skills; (c) intervention delivery depends on the nurse interventionist's skills and a flexible, trusting researcher-dyad relationship; (d) complex caregiver situations affect treatment receipt and enactment; and (e) intervention enactment requires coaching, practice, and support over time. These findings help to explain issues impacting intervention implementation to a vulnerable population. Recommendations for intervention research design to maximize internal and external validity in real-life care contexts can inform future outcome studies, aid in the search for improved care, and lead to supportive public policy for families living with AD.
Any system designed for people to use should be (a) easy to learn; (b) useful, i.e., contain functions people really need in their work; (c) easy to use; and (d) pleasant to use. In this note we present theoretical considerations and empirical data relevant to attaining these goals. First, we mention four principles for system design which we believe are necessary to attain these goals; Then we present survey results that demonstrate that our principles are not really all that obvious, but just seem obvious once presented. The responses of designers suggest they may sometimes think they are doing what we recommend when in fact they are not. This is consistent with the experience that systems designers do not often recommend or use them themselves. We contrast some of these responses with what we have in mind in order to provide a more useful description of our principles. Lastly, we consider why this might be so. These sections are summaries of those in a longer paper to appear elsewhere (Gould & Lewis, 1983). In that paper we elaborate on our four principles, showing how they form the basis for a general methodology of design, and we describe a successful example of using them in actual system design (IBM's Audio Distribution System).
The role of technology in customer-company interactions and the number of technology-based products and services have been growing rapidly. Although these developments have benefited customers, there is also evidence of increasing customer frustration in dealing with technology-based systems. Drawing on insights from the extant literature and extensive qualitative research on customer reactions to technology, this article first proposes the construct of technology readiness of people and discusses its conceptualization. It then describes a program of research that was undertaken to operationalize the construct, develop and refine a multiple-item scale to measure it, and assess the scale’s psychometric properties. The article concludes with a discussion of potential practical applications of the scale and an agenda for additional research aimed at deepening our understanding of technology’s role in marketing to and serving customers.
Advances in electronics have brought the promise of wear- able computers to near reality. Previous research has inves- tigated where computers can be located on the human body - critical for successful development and acceptance. How- ever, for a location to be truly useful, it needs to not only be accessible for interaction, socially acceptable, comfortable and sufficiently stable for electronics, but also effective at conveying information. In this paper, we describe a study that evaluated reaction time performance to visual stimuli at seven different body locations. Results indicate numer- ous and significant differences in the reaction time per- formance characteristics of these locations.
This article is both theoretical and empirical. Theoretically, it describes three principles of system design which we believe must be followed to produce a useful and easy to use computer system. These principles are: early and continual focus on users; empirical measurement of usage; and iterative design whereby the system (simulated, prototype, and real) is modified, tested, modified again, tested again, and the cycle is repeated again and again. This approach is contrasted to other principled design approaches, for example, get it right the first time, reliance on design guidelines. Empirically, the article presents data which show that our design principles are not always intuitive to designers; identifies the arguments which designers often offer for not using these principles—and answers them; and provides an example in which our principles have been used successfully.
Technology aimed at enhancing function and enabling independent living among older and disabled adults is a growing field of research. Privacy concerns are a potential barrier to adoption of such technology. Using data from a national Web survey (n=1,518), we focus on perceived acceptability of sharing information about toileting, taking medications, moving about the home, cognitive ability, driving behavior, and vital signs with five targets: family, healthcare providers, insurance companies, researchers, and government. We also examine acceptability of recording the behaviors using three methods: video with sound, video without sound, and sensors. Results show that sharing or recording information about toileting behavior; sharing information with the government and insurance companies; and recording the information using video were least acceptable. Respondents who reported current disability were significantly more accepting of sharing and recording of information than nondisabled adults, controlling for demographic variables, general technology attitudes, and assistive device use. Results for age were less consistent, although older respondents tended to be more accepting than younger respondents. The study provides empirical evidence from a large national sample of the implicit trade-offs between privacy and the potential for improved health among older and disabled adults in quality of life technology applications.
Anxiety is common in dementia and is associated with decreased independence and increased risk of nursing home placement. However, little is known about the treatment of anxiety in dementia. This article reports results from two patients who were treated with a modified version of cognitive-behavioral therapy for anxiety in dementia (CBT-AD). Modifications were made in the content, structure, and learning strategies of CBT to adapt skills to the cognitive limitations of these patients and include collaterals (i.e., family members, friends, or other caregivers) in the treatment process. The patients received education and awareness training and were taught the skills of diaphragmatic breathing, coping self-statements, exposure, and behavioral activation. The Clinical Dementia Rating (CDR) Scale was used to characterize dementia severity and determine eligibility for treatment (a CDR score of 0.5 to 2.0 was required for participation). Other measures included the Rating Anxiety in Dementia scale, the Neuropsychiatric Inventory Anxiety subscale, and the Mini International Neuropsychiatric Interview. Outcome data showed improvement in anxiety as measured by standardized rating scales. We conclude that CBT-AD is potentially useful in treating anxiety in dementia patients and that this technique merits further study.
To estimate the quantity of informal care associated with neuropsychiatric symptoms in older adults with cognitive impairment.
Cross-sectional analysis.
The Aging, Demographics, and Memory Study.
A sample (n=450) of adults aged 71 years and older with cognitive impairment drawn form the Health and Retirement Study.
The presence of neuropsychiatric symptoms (delusions, hallucinations, agitation, depression, apathy, elation, anxiety, disinhibition, irritation, and aberrant motor behaviors) was identified using the neuropsychiatric inventory. Cognitive category [normal, cognitive impairment without dementia (CIND), or dementia] was assigned by a consensus panel. The hours per week of active help and supervision were ascertained by informant questionnaire.
Among older adults with CIND or dementia, those with no neuropsychiatric symptoms received an average of 10.2 hours of active help and 10.9 hours of supervision per week from informal caregivers. Those with 1 or 2 neuropsychiatric symptoms received an additional 10.0 hours of active help and 12.4 hours of supervision per week, while those with 3 or more symptoms received an additional 18.2 hours of active help and 28.7 hours of supervision per week (P<0.001). The presence of irritation (14.7 additional hours) was associated with the greatest number of additional hours of active help. The presence of aberrant motor behaviors (17.7 additional hours) and disinhibition (17.5 additional hours) were associated with the greatest number of additional hours of supervision.
Neuropsychiatric symptoms among those with CIND or dementia are associated with a significant increase in the provision of informal care. This care represents a significant time commitment for families and a significant economic cost to society.
The individual contributions of behavior problems to key and related outcomes in dementia, such as nursing home admission (NHA) or caregiver burden, remain unclear.
This study sought to determine the ramifications of temporal change in individual behavior problems when accounting for increases in caregiver burden and time to NHA. Although burden is sometimes conceptualized as an antecedent to NHA, it has also emerged as a relevant outcome in dementia caregiving research.
A sample of 4545 dementia caregivers who participated in the Medicare Alzheimer disease Demonstration Evaluation was selected for this secondary analysis. Various patterns of change in individual behavior problems were considered as predictors of increases in caregiver burden and time to NHA over a 3-year period via mixed effects and Cox proportional hazards models, respectively.
Caregivers who did not indicate a care recipient's dangerous behavior initially but did so subsequently (ie, an "incident" behavior problem) were more likely to experience increases in burden (P < 0.0026). Alternatively, the persistent occurrence of behavior disturbances (particularly memory problems) emerged as the strongest predictors of time to NHA.
The findings of this study suggest the benefit of examining temporal patterns of individual behavioral disturbances, and that incident and persistent problems account for different dementia outcomes over time. Considering the temporal ramifications and potency of specific behavior problems can facilitate the targeted and timely delivery of effective clinical interventions.
Frontotemporal dementia (FTD), once thought to be a rare cause for dementia, is now acknowledged to be the most common presenile (before age 65 years) cause of dementia. Frontotemporal dementia is associated with profound changes in behavior, personality, emotions, and cognition. The purpose of this article is to describe 2 cases of patients with FTD to illustrate salient aspects of the caregiving experience. Issues faced by caregivers are organized into 6 categories: diagnosis, behavioral symptoms, function, communication, long-term management and care, and maintenance of the caregiver's emotional and physical health. Examples of interventions directed by advanced practice nurses are described. We suggest that management of FTD requires expertise as scientific advances and discoveries about FTD continually change the landscape of care.
To test the effects of an intervention that helps families manage distressing behaviors in family members with dementia.
Two-group randomized trial.
In home.
Two hundred seventy-two caregivers and people with dementia.
Up to 11 home and telephone contacts over 16 weeks by health professionals who identified potential triggers of patient behaviors, including communication and environmental factors and patient undiagnosed medical conditions (by obtaining blood and urine samples) and trained caregivers in strategies to modify triggers and reduce their upset. Between 16 and 24 weeks, three telephone contacts reinforced strategy use.
Primary outcomes were frequency of targeted problem behavior and caregiver upset with and confidence managing it at 16 weeks. Secondary outcomes were caregiver well-being and management skills at 16 and 24 weeks and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined.
At 16 weeks, 67.5% of intervention caregivers reported improvement in targeted problem behavior, compared with 45.8% of caregivers in a no-treatment control group (P=.002), and reduced upset with (P=.03) and enhanced confidence managing (P=.01) the behavior. Additionally, intervention caregivers reported less upset with all problem behaviors (P=.001), less negative communication (P=.02), less burden (P=.05), and better well-being (P=.001) than controls. Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, P=.02). Similar caregiver outcomes occurred at 24 weeks. Intervention caregivers perceived more study benefits (P<.05), including ability to keep family members home, than controls. Blood and urine samples of intervention patients with dementia showed that 40 (34.1%) had undiagnosed illnesses requiring physician follow-up.
Targeting behaviors upsetting to caregivers and modifying potential triggers improves symptomatology in people with dementia and caregiver well-being and skills.
To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving.
Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996-2006 of peer-reviewed journals using keywords CB and dementia.
Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization.
The ability to properly assess the dementia patient-caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.
The purpose of this paper is to provide a comprehensive review of information accumulated over the past 26 years regarding the psychometric properties and utility of the Mini-Mental State Examination (MMSE).
The reviewed studies assessed a wide variety of subjects, ranging from cognitively intact community residents to those with severe cognitive impairment associated with various types of dementing illnesses.
The validity of the MMSE was compared against a variety of gold standards, including DSM-III-R and NINCDS-ADRDA criteria, clinical diagnoses, Activities of Daily Living measures, and other tests that putatively identify and measure cognitive impairment.
Reliability and construct validity were judged to be satisfactory. Measures of criterion validity showed high levels of sensitivity for moderate-to-severe cognitive impairment and lower levels for mild degrees of impairment. Content analyses revealed the MMSE was highly verbal, and not all items were equally sensitive to cognitive impairment. Items measuring language were judged to be relatively easy and lacked utility for identifying mild language deficits. Overall, MMSE scores were affected by age, education, and cultural background, but not gender.
In general, the MMSE fulfilled its original goal of providing a brief screening test that quantitatively assesses the severity of cognitive impairment and documents cognitive changes occurring over time. The MMSE should not, by itself, be used as a diagnostic tool to identify dementia. Suggestions for the clinical use of the MMSE are made.
Using the grounded theory approach, 39 family caregivers were theoretically sampled using newspaper advertising to explore their perceptions of providing home care for frail elders and to generate a theoretical model that describes the dynamics of good quality and poor quality family caregiving; explains the relationships among certain contextual and perceptual variables and the behaviors exchanged by elders and caregivers; and identifies points where interventions by nurses could be effective. The model consists of five constructs that were identified from the data and were staged within the framework provided by symbolic interactionism and social exchange theory. The five constructs and two related driving forces provide a partial explanation for the quality of family caregiving and a beginning explanation for the phenomenon of elder abuse.
We investigated the range of behavioral abnormalities in patients with Alzheimer's disease (AD) compared with normal age-matched control subjects. The range of behavioral disturbances manifested and the relationship between specific abnormalities with the level of cognitive impairment have not been established. Fifty consecutive outpatients with mild (n = 17), moderate (n = 20), and severe (n = 13) AD and 40 age-matched normal controls were evaluated for behavioral abnormalities occurring in the month preceding the interview. The caregivers of the patients and the spouses of the control subjects were interviewed with the Neuropsychiatric Inventory (NPI). The frequency and severity of the following 10 behaviors were assessed: delusions, hallucinations, agitation, dysphoria, anxiety, euphoria, apathy, disinhibition, irritability, and aberrant motor behavior. Correlations among these 10 behaviors and their relationship with cognitive impairment were also investigated. Eighty-eight percent of AD patients had measurable behavioral changes. All 10 behaviors were significantly increased in the AD patients compared with normal subjects. The most common behavior was apathy, which was exhibited by 72% of patients, followed by agitation (60%), anxiety (48%), irritability (42%), dysphoria and aberrant motor behavior (both 38%), disinhibition (36%), delusions (22%), and hallucinations (10%). Agitation, dysphoria, apathy, and aberrant motor behavior were significantly correlated with cognitive impairment.
NEUROLOGY 1996;46: 130-135
The purpose of the study was to develop a short and a screening version of the Zarit Burden Interview (ZBI) that would be suitable across diagnostic groups of cognitively impaired older adults, and that could be used for cross-sectional, longitudinal, and intervention studies.
We used data from 413 caregivers of cognitively impaired older adults referred to a memory clinic. We collected information on caregiver burden with the 22-item ZBI, and information about dependence in activities of daily living (ADLs) and the frequency of problem behaviors among care recipients. We used factor analysis and item-total correlations to reduce the number of items while taking into consideration diagnosis and change scores.
We produced a 12-item version (short) and a 4-item version (screening) of the ZBI. Correlations between the short and the full version ranged from 0.92 to 0.97, and from 0.83 to 0.93 for the screening version. Correlations between the three versions and ADL and problem behaviors were similar. We further investigated the behavior of the short version with a two-way analysis of variance and found that it produced identical results to the full version.
The short and screening versions of the ZBI produced results comparable to those of the full version. Reducing the number of items did not affect the properties of the ZBI, and it may lead to easier administration of the instrument.
Pick's disease is a progressive illness that affects brain function, eventually causing loss of verbal skills and problem-solving abilities. Pick's disease accounts for 5% of all dementias. The most common symptoms involve personality, behavior, and language changes. Diagnosis can be difficult; a differential diagnosis often requires several years. Frequently, the disorder is initially diagnosed as stress, depression, or Alzheimer's disease. A magnetic resonance imaging scan will show atrophied portions of the frontal and temporal lobes. One of the most difficult aspects of care for someone with Pick's disease is communication. The communication styles of nurses can alleviate the anxiety experienced by a person with Pick's disease. Nurses should try different strategies as an approach to communicating and caring for someone with Pick's disease, remembering that each person suffering from dementia is different. Pick's disease can be emotionally devastating to the families of those who develop this disease. Working with families confronting the disability of a loved one is perhaps the greatest challenge for nurses. Nurses have the responsibility of educating the primary caregiver about nutrition, skin protection, incontinence care, safety, and end-of-life decisions.
The purpose of this study was to examine the effects that changes in behavioral and psychological symptoms of dementia of persons with Alzheimer's disease have on their caregivers' mental health and physical health. The research design was a prospective, longitudinal follow-up study conducted in a major medical center and in participants' homes. Longitudinal analysis linking change in behavior to caregiver outcomes was based on 64 cases. Care recipients were assessed at the time of diagnosis with the Mini-Mental State Examination (MMSE). To provide information on the care recipient's behaviors, caregivers participated in an interview with the Modified Neuropsychiatric Inventory at diagnosis and at follow-up. Caregivers also completed a battery of established instruments to measure stress appraisal, mental health, and perceptions of their physical health at follow-up. Results showed that increases in problem behaviors among persons living with dementia, along with residence status, were significant predictors of caregivers' mental health and also their physical health. However, these relationships were mediated through stress appraisal. Variables such as MMSE score of the person with dementia, number of years caregiving, relationship status, and education level were not significant predictors of caregivers' health when behavior change was in the model.
Increasing attention has been given to testing clinical trials with family caregivers of the elderly. More recent intervention studies indicated that caregiver skill-building interventions may be more effective than information/support interventions. Researchers have given considerable attention to the content and support needed by family caregivers, but we know less about how this content and support translates into caregiver skills. This is the first in a series of three articles on a study in which qualitative methods were used to analyze summaries from the group component of a larger caregiver clinical trial. In this article we identify content and skills that dementia family caregivers need in addressing three major care recipient issues and concerns: (a) difficult behaviors and emotional responses, (b) personal and instrumental activities of daily living, and (c) cognitive decline.
In recent years researchers have carried out an increasing number of clinical trials with family caregivers of the elderly. The results of these interventions have suggested that caregiver skill-building interventions may be more effective than information/support interventions. Although researchers have given considerable attention to the information and support needed by family caregivers, less is known about how this information and support translates into caregiver skills or into changes in behavior. This is the second in a series of three articles on a study in which researchers used qualitative methods to analyze summaries from the group component of a larger caregiver clinical trial. In this article we describe caregiver issues and concerns in five major areas: (a). dealing with change, (b). managing competing responsibilities and stressors, (c). providing a broad spectrum of care, (d). finding and using resources, and (e). experiencing emotional and physical responses to care. We identify specific skills needed by caregivers in addressing these caregiving issues and concerns, and we compare and contrast skilled with less skilled caregivers. Further work is needed concerning the focus and methods of future caregiver skill-based interventions.
The authors summarize the dementia caregiving literature and provide recommendations regarding practice guidelines for health professionals working with caregivers. Family caregiving of older persons with disability has become commonplace in the United States because of increases in life expectancy and the aging of the population, with resulting higher prevalence of chronic diseases and associated disabilities, increased constraints in healthcare reimbursement, and advances in medical technology. As a result, family members are increasingly being asked to perform complex tasks similar to those carried out by paid health or social service providers, often at great cost to their own well-being and great benefit to their relatives and society as a whole. The public health significance of caregiving has spawned an extensive literature in this area, much of it focused on dementia caregiving because of the unique and extreme challenges associated with caring for someone with cognitive impairment. This article summarizes the literature on dementia caregiving, identifies key issues and major findings regarding the definition and prevalence of caregiving, describes the psychiatric and physical health effects of caregiving, and reviews various intervention approaches to improving caregiver burden, depression, and quality of life. Authors review practice guidelines and recommendations for healthcare providers in light of the empirical literature on family caregiving.
To estimate the contribution of behavioral and psychological symptoms of dementia (BPSD) to the costs of care.
A one-year prospective study of resource utilization recorded monthly by 500 caregivers of community dwelling patients with dementia. The effect of behavior on total, direct and indirect costs of care was examined.
The total cost of care was 30 per month (95% CI: 41).
BPSD contribute significantly to the overall costs of dementia care. Interventions targeted at BPSD may help to reduce the staggering societal costs of this illness.
Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge.
To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups.
Randomized, controlled trial.
In-home caregivers in 5 U.S. cities.
212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders.
Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief "check-in" telephone calls during the 6-month intervention.
The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months.
Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months.
The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups.
A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers. ClinicalTrials.gov identifier: NCT00177489.
Unlabelled:
A qualitative tool was recently developed for evaluation of dependency in a demented population. This tool assesses the impact of cognitive impairment on functional status, taking into account disability in both the basic and the instrumental activities of daily living. The purpose of the present paper was to study the impact of dependency on informal caregivers who assist demented patients at home, with this new useful tool.
Methods:
A cross-sectional analysis was undertaken of the subgroup of 145 demented patients of the National Dementia Economic Study, aged > or = 65 years, living in the community, with an available caregiver. A neuropsychological assessment of patients (Mini-Mental State Examination) and a comprehensive evaluation of caregivers (quality of life, Short Form Health Survey-36, depression, Sense of Competence) were recorded. A total of 32.4% were dependent, disabled in both basic and instrumental functions, 42.1% were non-dependent but with instrumental functional disabilities and 25.5% were non-dependent. Impact of dependency on the caregiver's experience was significant for different aspects (satisfaction with caregiving, subjective burden, quality of life, depression). Medical and non-medical costs increased with the severity of functional disability. Findings indicate that this tool is also useful to assess the impact of progression of functional disability in patients with dementia, on the caregiver issues. The consequences appeared both on personal feelings and on quality of life and financial involvement in management of the patient. Cognitive impairment appears to have more moderate repercussions in these areas.
The purpose of this study was to describe adherence to recommended preventive health practices among middle-aged and older male and female family caregivers of individuals receiving home health services. Perceptions of the burden and benefit of caregiving, wellness orientation, social participation, and community resource use by the caregiving dyad (caregiver and carereceiver) were also explored using the t test and the chi2 test to detect gender differences. A sample of 319 participants 50 and older was recruited from a home health agency in southwestern Pennsylvania to participate in a telephone survey. Results revealed that caregivers had performed 86% of age- and gender-appropriate preventive health practices, but they currently adhered to guidelines for 63% of such behaviors, regardless of gender. Men experienced less burden than women, and were more likely to acknowledge that caregiving made them feel useful and appreciated and gave more meaning to their lives. The study suggests that family caregivers may be as vigilant in their preventive health behavior as the general population, despite their responsibilities. Nurses in contact with middle-aged and older family caregivers are well positioned to encourage health promotion and disease prevention behaviors in this accessible population.