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We examined how family caregivers react, and what interventions they use in response to delusions exhibited by relatives with dementia in a community setting. Structured interviews were conducted with 68 family caregivers whose relatives were described as experiencing delusions based on the BEHAVE-AD or the NPI. Quantitatively, we cross-tabulated the type of response to delusion by the type of person providing the response and by the type of delusion manifested. Qualitatively, we analyzed open-ended responses to understand the types of caregivers' responses to delusions, the contextual circumstances, and the impact of the responses. Caregiver responses to delusions included "Explaining that the delusion was wrong" (34% of responses), "Trying to calm down" (27%), "Agreeing with the delusion" (13%), "Distracting" (12%), and "Ignoring" (10%). Responses including "Anger, yelling or scolding," were rare. The vast majority of reactions were by family caregivers of the persons with dementia. The relative frequency of the type of reaction tended to be consistent across delusion types. The qualitative analyses added some categories of reactions, but mostly highlighted issues to be considered when examining responses and their efficacy, including the use of multiple responses, and the manner and mood in which responses are conveyed. To cope with delusions, family caregivers develop intuitive intervention techniques. Understanding those interventions and reactions by caregivers and their relative efficacy can inform guidance programs for family caregivers. Improved support for family caregivers has the potential to positively influence the behavior of caregivers and older adults with dementia and improve their respective quality of life.

This study examines nursing home employees' perspectives concerning barriers to quality care for people with dementia. Data were derived from observations of care units and interviews with forty-one employees, including chief executive officers, social workers, nurses, occupational therapists, activity workers and nursing assistants at five Israeli nursing homes. Residents' behavior was reported as challenging for staff. Physical restraints and psychotropic medication were commonly used to address behavioral challenges, while few staff acknowledged these practices as problematic. Staff complained that some co-workers were insufficiently caring and wages and overall funding were inadequate, resulting in unsatisfactory staffing levels and insufficient activities for residents. Rigid care routines failed to meet resident needs, and staff failed to notice the relationship between care practices and resident behavior. While problems were described concerning multiple aspects of care, the root causes seemed to include the need for additional funding and for greater expertise in dementia care., Competing Interests: Declaration of Competing Interests None., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: This paper describes barriers to engagement in the context of group activities attended by nursing home residents with dementia., Objective: The goal is to clarify the presence and types of barriers to group activities for persons with dementia., Methods: Therapeutic recreation staff (TRs) who conducted the group activities, and trained research observers (ROs) independently identified barriers occurring during group activity sessions through ratings and open-ended comments, which were analyzed via a mixed-method approach., Results: Barriers were related to specific participant, environmental, and group session characteristics. Most frequently noted barriers were participant-related, pertaining to apathy and challenging behavior. Noise was the most frequent environmental barrier. Overall, ROs reported more barriers than TRs, yet TRs reported the barrier of inappropriate topic more frequently than ROs., Conclusions: The study suggests that the number and specific types of barriers are associated with negative engagement outcomes. Insight into these barriers is the first step toward addressing them and minimizing their effects.

Concern about the lack of human rights afforded to persons living with dementia has emerged in recent years. Although the literature addresses certain rights, it does not include a holistic framework of rights in terms of the lived experience of older persons with cognitive impairment. Inspired by the 20 rights advocated for children by physician-educator Janusz Korczak, this article analyzes his formulation of rights in the context of persons with dementia, linking them to the ethical principles of Beneficence, Autonomy, and Justice. The analysis thus provides a holistic framework for addressing the human rights of persons with dementia, and their meanings for the lived experiences of persons with dementia and their caregivers. It offers new insights into the philosophy and practice of care, with implications for dementia care research, public health policy, practice guidelines for health care professionals, and the instruction of family and other caregivers of persons with dementia., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: The experience of pain is aggravated among older persons with advanced dementia (OPAD). It is often undetected and therefore untreated because of their limited capacity to identify and report their symptoms. Therefore, it is crucial to improve the pain identification skills of those who know and live with them., Objectives: To compare the identification of pain among OPAD between family members and paid care workers and to compare the detection of pain through the use of two common assessment tools., Methods: This study is a cross-sectional comparison conducted between 82 dyads of informants: the family member of OPAD and the paid care worker, a total of 164 individuals., Measurements: The study used two previously validated pain assessment tools for persons suffering from dementia: the Pain Assessment in Noncommunicative Elderly persons tool (PAINE) and Pain Assessment in Advanced Dementia tool (PAINAD), and a general impression question., Results: Both family members and paid care workers were able to successfully use both tools. The correlation between family members' ratings and paid care workers' ratings was statistically significant for all the assessments. The correlations between raters were higher when family members lived with the OPAD. The correlations between PAINE and PAINAD scores were moderate and significant, both among family members and paid care workers., Conclusion: This study shows that it is feasible to improve the assessment and identification of pain among OPAD, through the use of validated tools by family members and paid care workers, suggesting the potential to improve quality of care and quality of life of OPAD., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: The Comprehensive Process Model of Group Engagement posits that personal factors (eg, cognitive function), stimulus factors (eg, group activity content and group size), and environmental factors (eg, light and noise) impact the response to group activities. This paper reports the impact of environmental and group characteristics on engagement, mood, and sleepiness of persons with dementia attending group activities., Methods/design: The sample included 69 nursing home residents. Environmental contexts of activities included time of day, location, noise, light, and temperature. Outcome variables captured engagement, mood, and sleepiness, observed during 20 group activity sessions. Mixed model analyses were used to examine the impact of environmental and group attributes on the outcome variables., Results: Background noise and time of day significantly affected outcome variables after controlling for participants' cognitive functioning and group topic. Background noise was related with decreased engagement and increased sleepiness. Activities conducted before noon were associated with increased sleepiness. Group size did not affect the outcome variables. There was little variation concerning temperature and light., Conclusions: These findings have implications for architectural and ongoing planning. The methodology presents a model for continuous quality improvement. The main components of the Comprehensive Process Model of Group Engagement significantly impacted group activity engagement., (© 2019 John Wiley & Sons, Ltd.)

Conduct of research is an essential tool for the evaluation and improvement of health services. In Israel, research on persons with dementia is very limited, with the largest portion of such research involving a few surveys and examining risk factors for dementia. Very few studies describe clinical research, and those that do either include participants at early stages of dementia, or rely completely on caregivers' perceptions and experiences, often without reference to any individual with dementia. This dearth of research is due, to a substantial extent, to Ministry of Health regulations which do not permit family proxy consent for research involving persons with dementia. Alternative models for regulation of consent for research exist in other countries, including the U.S., and these allow for proxy consent under certain conditions. This paper presents such a model and its underlying ethical principles. It contends that the current state of affairs, which stands in the way of clinical research concerning persons with advanced dementia, is contrary to the interests of such persons, their caregivers, and Israeli society. Therefore, this paper calls for a change in the present regulations and/or law in the cause of advancing knowledge and improving care for persons with dementia.

Objectives: Participation in group activities can benefit persons with dementia, alleviating boredom, improving affect, maintaining function, and decreasing problematic behaviors., Methods: We describe patterns of attendance of residents with dementia at nursing home activity groups and investigate stimulus and environmental factors that may affect attendance., Results: Residents participated in 60.8% of the activities, with reasons for nonattendance including refusal (9.7%), not being on the unit (7.8%), being asleep (6.8%), and being involved in activities of daily living and other activities (8.3%). On average, 3.5 other residents not recruited for the study chose to participate in each group session. Group attendance was significantly related to group topic., Implication: The need for activities was evident by the attendance of both invited and other residents. Understanding the factors that affect attendance is the first step toward developing procedures to maximize participation in activities in order to decrease loneliness and boredom in this population.

Background: Individuals suffering from dementia and residing in nursing homes often feel lonely and bored. This study examined the engagement and mood of people with dementia in group activities, and how personal characteristics, such as cognitive function, may impact on an individual's responses to group activities., Methods: The study included 102 participants, who took part in group activities while their mood and engagement levels were observed. Participants were invited to attend 10 different types of group activities, each of which was offered twice., Results: Results found improved engagement and mood during group activities as compared to control no-group times. Significant relationships between the type of activity and ratings of engagement and mood were also found. Although participants with higher levels of cognitive functioning manifested greater responsiveness to groups, the pattern of response to different contents did not differ by cognitive function., Conclusions: This study shows the potential utility of group activities for improving quality of life of persons with dementia and demonstrates a methodology that can be used for quality improvement to optimize group contents. Future research should expand the range of contents of group activities in order to enhance the options for improving mood and engagement of individuals with dementia.

This study examined the relationship between personal characteristics and attendance, engagement, sleep, and mood outcomes of persons with dementia participating in group activities. The purpose of this study is to examine which persons with dementia benefit most from group interventions. Sixty-nine persons with dementia were observed by research and therapeutic recreation staff during 10 types of group activities (reading aloud with discussion, choral-singing, baking, creative storytelling, brain games, active games, exercise, reminiscence poetry, holiday newsletter, and holiday discussions) on multiple outcomes (attendance duration, sleep, engagement, active participation, attitude, and positive mood). Correlations between these outcomes and personal characteristics (demographics, functional and medical characteristics, personal preferences for group activities) were conducted. Variables with significant correlations were then entered into regression analyses. Many of the personal characteristics were significantly correlated with the outcomes. Cognitive function was the most consistent predictor of all outcomes. Personal characteristics, particularly cognitive function, can predict the responses of persons with dementia during group activities., (Copyright © 2017 Elsevier B.V. All rights reserved.)

An in-depth analysis of qualitative data regarding antecedents, consequences, and descriptions of delusions of persons with dementia (PwD) provided by family caregivers is presented. Three broad classifications of reasons given behind types of delusions are included, namely environmental factors, personal factors, and dementia, with dementia being the most prominent factor. We observed an overlap between known cognitive symptoms of dementia and the characteristics of the reported "delusions" in dementia. It therefore appears that what is often classified as a delusion of a seemingly psychotic nature is in fact the PwD's disorientation combined with an attempt to fill in gaps caused by cognitive deficiencies.

People with dementia (PwD) attending dementia day care often experience the death of others. Little research exists regarding whether PwD should be informed of the death, and if so, how? In this qualitative research, the authors explored, through semistructured interviews, the beliefs and practices of 52 staff members of adult day centers for PwD about these issues. Themes that emerged are that many staff members feel their clients have emotional capacity to mourn, despite their cognitive impairments. There are many different ways to tell PwD about the death of others. Each case should be judged individually. Eighty percent of staff feels sad when a group member dies and 92% desires more training on how to enable their clients to grieve. Research is needed on mourning and PwD, staff training, and ways to help staff with the burden of their own grieving. These methods may improve quality of care and decrease staff burnout.

Although a few papers documented benefits of group therapeutic activities for individuals with dementia, there is a dearth of studies that have investigated the effects of group activities on persons with dementia. This paper introduces a theoretical framework of studying group therapeutic recreational activity, the Comprehensive Process Model of Group Engagement, and an assessment tool, the Group Observational Measurement of Engagement (GOME). We also report the psychometric properties of this assessment. One hundred and four persons with dementia took part in ten different group activities, with each activity conducted twice at random order so that 20 activities were observed for each group of participants. Following each group activity, research and therapeutic recreation staff members used the GOME assessment to independently rate participants on individual-level measures of attendance duration and engagement, and group level measures (e.g., positive and negative interactions among group members). Reliability and validity analyses comparing observer ratings for each group activity on the individual-level measures of attendance and engagement showed good psychometric properties. Different measures collected on a group level differed with respect to their psychometric quality. We present a theoretical framework to understand group engagement and present measures that could be used in future research and practice., (Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.)

Background: Transitional care units aim to assist caregivers who cannot manage the care for persons with dementia who manifest behavioral and psychological symptoms of dementia (BPSD). However, there is a dearth of research on such care units., Objective: The current study reviewed one specialized transitional unit to better understand the characteristics of the persons with dementia and behavioral symptoms entering such unit. The study also looked at the change in terms of (a) BPSD, (b) use of psychotropic medications and (c) function of the patients in this unit., Method: A retrospective chart review of 73 residents of a transitional care unit was conducted. Background and outcome information were collected on electronic data entry sheets., Results: Patients had an average age of 75.0 years, 74.0% were men. Mean Cognitive Performance Scale score was 4.7. Comparing admission to discharge, there was a significant decrease in BPSD, and a significant increase in number of central nervous system medications. There were no significant changes in cognition or ability to perform activities of daily living., Conclusion: Patient characteristics differed from those of other long term care settings. This unique population requires further study to optimize the outcomes., (Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.)

Objective: To portray the emotional and behavioral reactions of persons with dementia to the delusions and hallucinations they experience, according to the reports of their family caregivers. The article also explores the relationship between those reactions and background variables., Methods: Study participants were family caregivers of 74 older persons with a diagnosis of dementia (aged ≥ 65) residing in the community recruited from adult day centers and support groups for caregivers of persons with dementia and by advertising online. Assessments included the Behavioral Pathology in Alzheimer's Disease, the Neuropsychiatric Inventory, the Etiological Assessment of Psychotic Symptoms in Dementia, Activities of Daily Living questionnaire, and the Mini-Mental State Examination., Results: Findings concerning emotional reactions reveal that close to half of the delusions resulted in discomfort, whereas around 40% did not. We found significant differences in the discomfort associated with different types of delusions, with delusions of abandonment, danger, and infidelity associated with more discomfort than other delusions. Around half of the delusions were associated with a behavioral manifestation., Conclusion: The findings highlight the need to examine the emotional impact of delusions and hallucinations as part of their assessment and as a consideration in treatment decisions., (Copyright © 2016 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

A systematic review was conducted to identify, categorize and summarize available research on planned care transitions or relocations for persons with dementia (PWD) in order to help guide best practice. Articles were identified by keyword searches of electronic databases, and a soft search of references of relevant articles. The review found that planned care transitions in PWD are associated with an increase in undesirable outcomes, particularly immediately post-transition, and that caregivers are often underutilized in care planning and underprepared for care transitions. It is recommended that transitional care interventions for PWD make explicit efforts to enhance caregiver involvement, provide social and pragmatic support for PWD and their caregivers and offer assistance in managing behavioral and psychological symptoms of dementia.

The Unmet Needs Model states that problem behaviors of people with dementia result from unmet needs stemming from a decreased ability to communicate those needs and to provide for oneself. The purpose of this study is to describe the unmet needs of persons with dementia exhibiting behavior problems. Eighty-nine residents with dementia from six Maryland nursing homes were assessed by research assistants and nursing assistants for their unmet needs using multiple assessment tools. Three unmet needs per resident were identified on average, with informants rating boredom/sensory deprivation, loneliness/need for social interaction, and need for meaningful activity as the most prevalent needs. Discomfort was associated with higher levels of verbally agitated behaviors (e.g., complaining). Based on results and independent ratings of pain, the authors estimate notable under-detection of discomfort and pain by both types of informants. The study demonstrates methodologies for uncovering unmet needs among persons with dementia and highlights the importance of developing programs that address those unmet needs, especially social and activity needs of nursing home residents. The detection of pain, and possibly that of discomfort, may require a different methodology., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

Objective: This study compares different nonpharmacological interventions for persons with behavioral symptoms and dementia on frequency of use and perceived efficacy in terms of change in behavior and interest., Methods: Participants were 89 nursing home residents from six Maryland nursing homes with a mean age of 85.9 years (SD: 8.6 years). Research assistants presented interventions tailored to the participants' needs and preferences in a pre-intervention trial phase and in an intervention phase. The impact of each intervention on behavioral symptoms and on the person's interest was rated immediately after the intervention by a research assistant., Results: The most utilized interventions in both trial and treatment phases were the social intervention of one-on-one interaction, simulated social interventions such as a lifelike doll and respite video, the theme intervention of magazine, and the sensory stimulation intervention of music. In contrast, the least utilized interventions in both phases were sewing, fabric book, and flower arrangement. Interventions with the highest impact on behavioral symptoms included one-on-one social interaction, hand massage, music, video, care, and folding towels. Other high impact interventions included walking, going outside, flower arranging, food or drink, sewing, group activity, book presentation, ball toss, coloring or painting, walking, and family video., Conclusions: The results provide initial directions for choosing specific interventions for persons with dementia and also demonstrate a methodology for increasing knowledge through ongoing monitoring of practice., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

The Sources of Discomfort Scale (SODS) assesses discomfort manifestations based on source of discomfort, thus making it both distinct from and complementary to pain assessments for persons with dementia. Sources were categorized as pertaining to physical discomfort, to body position, and to environmental sources. Body position sources of discomfort were related to poor functional status and to pain. The SODS scores were not related to cognitive functioning, and sources of discomfort other than those pertaining to body position were not correlated with pain. This paper demonstrates a direct and enhanced method to detect the manifestations of discomfort separately from pain indicators in a population with advanced dementia. The determination of the source of discomfort has direct implications for intervention.

Objectives: Behavioral disturbances and pain are common in nursing home (NH) patients with dementia. An association between pain and increased agitation has been suggested, and recently a significant reduction of agitation has been demonstrated by pain treatment in patients with moderate to severe dementia. We now examined which specific agitated behaviors respond to individualized pain treatment., Design: Cluster randomized clinical trial., Setting: 60 clusters (i.e., clusters defined as single independent NH units) in 18 NHs within five municipalities of Western Norway., Participants: 352 patients with moderate to severe dementia and clinically significant behavioral disturbances., Intervention: The control group received usual treatment and care. According to a predefined scheme for 8 weeks, all patients in the intervention group received individual daily pain treatment with acetaminophen, extended release morphine, buprenorphine transdermal patch, and/or pregabaline., Measurements: Cohen-Mansfield Agitation Inventory subscales and items., Results: Analyses demonstrated that Factor 3 (Verbally agitated behaviors) showed the largest significant difference (DF = 1204.0, t = -4.308, p <0.001), followed by Factor 2 (Physically non-aggressive behaviors) (DF = 1198.0, t = -2.672, p = 0.008), and Factor 1 (Aggressive behaviors) (DF = 1196.0, t = -2.093, p = 0.037) after 8 weeks, by a linear random intercept mixed model in two-way repeated-measures configuration with adjustment for heteroscedasticity., Conclusion: We found that verbal agitation behaviors such as complaining, negativism, repetitious sentences and questions, constant request for attention, and cursing or verbal aggression responded to pain treatment. In addition, restlessness and pacing were sensible to analgesics. Such behaviors should therefore lead to an assessment of pain, and pain treatment. Further studies comparing how pain treatment should be balanced against other strategies including psychotropic drugs are needed., (Copyright © 2014 American Association for Geriatric Psychiatry. All rights reserved.)

Objective: Research is needed to determine specific factors that contribute to the success of nonpharmacologic interventions. In this study, we examined the influence of personal characteristics (demographic, medical, and functional variables) and possible barriers (eg, staff or family barriers) on the efficacy of nonpharmacological interventions in reducing agitation., Method: Agitation was systematically observed at baseline and intervention stages using the Agitation Behavior Mapping Instrument (ABMI) in a sample of 89 residents from 6 Maryland nursing homes (mean age = 85.9 years). Each participant received interventions based on an individualized algorithm (TREA-Treatment Routes for Exploring Agitation), which identifies unmet needs and matches interventions to needs and to the participant's sensory, cognitive, and functional abilities, as well as to self-identity and preferences. The study was conducted between June 2006 and December 2011., Results: Analyses revealed that decreased levels of agitation during intervention correlated significantly with higher levels of cognitive function (r = 0.36, P < .001), with fewer difficulties in the performance of activities of daily living (r = 0.29, P < .01), speech (r = 0.47, P < .001), communication (r = 0.23, P < .05), and responsiveness (r = 0.28, P < .01). In addition, less reduction of agitation during intervention was significantly related to the presence of staff barriers (eg, refusals, interruptions) (r = -0.38, P < .001) and the occurrence of pain (r = -0.21, P ≤ .05)., Conclusions: The findings elucidate the characteristics of those who are most likely to respond to TREA intervention, and point to the need of systemic changes to reduce staff-related barriers and to improve methodologies for increasing the impact of intervention on those at the lowest levels of functioning., (© Copyright 2014 Physicians Postgraduate Press, Inc.)

This is a qualitative and quantitative study examining institutional staff members' reactions to delusions experienced by nursing home residents. Participants were 38 nursing home residents aged 65 and older, diagnosed with dementia. Data were collected from 8 nursing homes in Israel between June 2007 and January 2009. Assessments included Behavioral Pathology in Alzheimer's Disease Rating Scale, Neuropsychiatric Inventory: Nursing Home version, Etiological Assessment of Psychotic Symptoms In Dementia, Activities of Daily Living, and Mini-Mental State Examination. A wide variety of interventions with dementia-related symptoms was found to be effective to varying degrees. This included general approaches for a variety of symptoms as well as symptom-specific interventions. Caregivers do not always seem to be aware that multiple approaches are available to them when dealing with dementia. The most effective approaches may be those tailored to the individual. Combining interventions may increase overall effectiveness. Caregiver's experience and the institutional culture may affect the choice of intervention used, either positively or negatively., (© The Author(s) 2014.)

This paper challenges the assumptions underlying many reviews and offers alternative criteria for examining evidence for nonpharmacological interventions. We evaluated 27 reviews examining interventions for persons with dementia as they relate to the issues of selection based on randomized controlled trial (RCT) design. Reviews were described by type of intervention, level of cognitive function, and criteria for inclusion. Of the 27 reviews, 46% required RCTs for inclusion and most had stringent inclusion criteria. This resulted in poor utilization of the literature and low ecological validity. Eliminating most of the available data poses a critical problem to clinical and research development. Studies meeting strict methodological criteria may not generalize to the greater population or may exclude sub-populations and interventions. Limitations of double-blind RCTs and potential design solutions are set forth based on appropriate populations, problems, interventions, and settings characteristics.

This study compares formal and informal caregivers' perceptions of delusions and hallucinations in older persons with dementia (PWDs). The study population consisted of 151 community-dwelling PWDs aged 65 and older, 90 formal caregivers, and 151 informal caregivers residing in Israel. Assessments included the Behavioral Pathology in Alzheimer's Disease Rating Scale, Neuropsychiatric Inventory, Etiological Assessment of Psychotic Symptoms in Dementia, Activities of Daily Living, and Mini-Mental State Examination. Informal caregivers reported higher rates and a higher level of severity of delusions and hallucinations than formal caregivers. Different caregivers showed varying degrees of emotional involvement, empathy, and efforts to find the meaning of the delusion for the person experiencing it. Family members and staff members may see different parts of the total picture. The combination of both points of view is essential in order to establish an accurate, comprehensive assessment of dementia symptoms and to enhance the understanding of the reality of the different parties.

Background: To clarify physicians' actual practice in treating agitation in the nursing home and to elucidate the relationship between background factors, familiarity with interventions, and practice., Methods: A survey of actual practice for agitation in persons with dementia was administered to 67 physicians aged 31-70+ working in nursing homes in Israel. Questionnaires were administered by personal interview, self-completed, or a combination of the two., Results: Psychotropic medications are prescribed by 92.5% of physicians for treating agitation, most notably, Haloperidol (39%). Non-pharmacological treatment was also reported to be common, though to a lesser extent, with environmental change being the most prevalent non-pharmacological intervention. Generally, physicians showed low familiarity levels with non-pharmacological interventions, with higher levels noted for physicians with a specialty in geriatrics compared to those who were non-specialized. Physicians who were non-Israeli and younger also reported higher familiarity levels compared to their respective counterparts (i.e. Israeli and older) but this difference did not reach significance., Conclusion: The findings indicate that, despite current guidelines, psychotropic medications are the treatment of choice among nursing home physicians in Israel. While rates of use of non-pharmacological interventions are substantial, their in-practice application may be hindered by lack of familiarity as well as system barriers. The results have implications for system and education changes.

Background: A randomized, placebo-controlled clinical trial was undertaken to determine the efficacy of nonpharmacologic individualized interventions (individualized to address unmet needs such as boredom or pain) in decreasing agitation in persons with dementia., Method: Agitated nursing home residents with advanced dementia (from 9 nursing homes in 5 locations in Maryland, United States) were randomized into an intervention group (n = 89) and a placebo control group (n = 36). On the basis of data from baseline assessment, a systematic methodology for individualizing nonpharmacologic interventions, Treatment Routes for Exploring Agitation (TREA), was used with the intervention group: an unmet need was hypothesized, a corresponding treatment category was identified, and specifics of the treatment were chosen to fit the person's need, past identity, preferences, and abilities. (Unmet needs were hypothesized based on physician evaluations, structured staff interviews, relative questionnaires, direct observations of agitation with the Agitation Behavior Mapping Instrument [the primary outcome measure] and affect with Lawton's Modified Behavior Stream [the secondary outcome measure], and resident assessments.) TREA interventions were implemented for 2 weeks, and observations of agitation and affect were recorded. The study was conducted from June 2006 until December 2011., Results: Relative to a control group, TREA interventions for unmet needs produced statistically significant declines in total (P < .001), physical nonaggressive (P < .001), and verbal agitation (P = .004) and significant increases in pleasure (P < .001) and interest (P < .05)., Conclusions: This is the first large randomized controlled trial to demonstrate the efficacy of TREA and one of only a few such trials of nonpharmacologic interventions for agitation in persons with dementia. The translation of these findings into practice is sorely needed and would require structural changes dedicating staff time to observing each agitated resident, determining unmet needs, obtaining appropriate intervention materials, conducting the individualized nonpharmacologic interventions, and evaluating results., Trial Registration: ClinicalTrials.gov identifier: NCT00820859., (© Copyright 2012 Physicians Postgraduate Press, Inc.)

This study investigated the meanings and etiologies of hallucinations in persons with dementia. Participants were 74 nursing home residents aged ≥ 65 diagnosed with dementia. Most of the reported visual and auditory hallucinations involved talking to persons who are not present, a phenomenon described as either a visual or auditory hallucination, or both. All participants who were reported to experience a hallucination had poor vision. Current results suggest that hallucination was a term staff caregivers used for the phenomena they could not easily explain, demonstrating their lack of understanding of the resident and/or the phenomena they termed hallucination. The classification of hallucinations into subtypes may not be meaningful, and most visual and auditory hallucinations were not associated with negative affect. Some hallucinations occurred out of boredom, which exacerbated the sensory deprivation experienced by these persons, thereby increasing the likelihood of hallucinations.

Objective: Behavioral symptoms are common in persons with dementia, and nonpharmacological interventions are recommended as the first line of therapy. We describe barriers to conducting nonpharmacological interventions for behavioral symptoms., Design: A descriptive study of barriers to intervention delivery in a controlled trial., Settings: The study was conducted in six nursing homes in Maryland., Participants: Participants were 89 agitated nursing home residents with dementia., Intervention: Personalized interventions were developed using the Treatment Routes for Exploring Agitation decision tree protocol. Trained research assistants prepared and delivered the interventions. Feasibility of the interventions was determined., Measurements: Barriers to Intervention Delivery Assessment, activities of daily living, cognitive functioning, depressed affect, pain, observed agitation, and observed affect., Results: Barriers were observed for the categories of resident barriers (specifically, unwillingness to participate; resident attributes, such as unresponsive), barriers related to resident unavailability (resident asleep or eating), and external barriers (staff-related barriers, family-related barriers, environmental barriers, and system process variables). Interventions pertaining to food/drink and to 1-on-1 socializing were found to have the fewest barriers, whereas higher numbers of barriers occurred with puzzles/board games and arts and crafts activities. Moreover, when successful interventions were presented to participants after the feasibility period, we noted fewer barriers, presumably because barrier identification had been used to better tailor interventions to each participant and to the environment., Conclusion: Knowledge of barriers provides a tool by which to tailor interventions so as to anticipate or circumvent barriers, thereby maximizing intervention delivery., (Copyright © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Affect, behavior, and cognition can be considered as basic constructs that dictate human functioning, with intricate and bi-directional relationships among them. Prior to the present study, relationships among these constructs have not been systematically examined within the context of dementia., Methods: Sample 1 contained 185 nursing home residents with a diagnosis of dementia. Sample 2 contained 117 residents with dementia, all of whom manifested agitated behaviors. Outcome measures included stimulus engagement (assessed via the Observational Measure of Engagement), affect (measured using Lawton's Modified Behavior Stream), and agitation/problem behavior (recorded via the Agitated Behaviors Mapping Instrument). Real time direct observations were collected during both stimulus presentation and control conditions., Results: The relationship of engagement with positive affect, represented by the variables of interest and pleasure, were high and positive. No relationship emerged for engagement with negative affect or agitated behavior. A consistent positive relationship was found between agitated behavior and negative affect, and in Sample 2, a negative relationship between agitated behavior and both pleasure and interest., Conclusion: This is the first study to examine relationships among variables that are typically examined individually and, in doing so, has clarified the nomenclature used to describe the constructs of affect, engagement, and agitated behaviors in persons with dementia. The finding that the constructs of engagement, agitated behavior, and affect are multidimensional and that relationships among these constructs occur for some of the dimensions is important for the development of interventions and for clear communication in practice and research.

Many elderly people experience pain and regularly take analgesic medication. Pain is also frequent in people with dementia, particularly those with severe disease. As no robust clinical guidelines are available for the treatment of pain in the context of dementia, the risk of inadequate treatment in individuals with this condition is high. Furthermore, our understanding of the aetiology of pain and the potential role of dementia-associated neuropathology in pain is limited. These issues are important in the clinical management of individuals with dementia, as untreated pain is a major contributor to reduced quality of life and disability, and can lead to increased behavioural and psychological symptoms. Assessment scales to identify pain in people with dementia have been highlighted in recent studies, but there is little evidence for consistency between these tools. Numerous studies have evaluated various approaches for the treatment of pain, including stepped-care protocols and/or administration of paracetamol and opioid medications. In this Review, we summarize the best-available evidence regarding the aetiology, assessment and treatment of pain in people with dementia. Further validation of assessment tools and large-scale trials of treatment approaches in people with dementia are needed to improve clinical guidance for the treatment of pain in these individuals.

We examined the impact of environmental, person, and stimulus characteristics on pleasure in persons with dementia. Study participants were 193 residents of 7 Maryland nursing homes who were presented with 25 stimuli from these categories: live human social stimuli, live pet social stimuli, simulated social stimuli, inanimate social stimuli, a reading stimulus, manipulative stimuli, a music stimulus, task and work-related stimuli, and two different self-identity stimuli. Systematic observations of pleasure in the natural environment were conducted using Lawton's Modified Behavior Stream. Analysis showed that pleasure is related to stimulus category, personal attributes and environmental conditions. In the multivariate analyses, all types of social stimuli (live and simulated, human and nonhuman), self-identity stimuli, and music were related to significantly higher levels of pleasure than the control condition. Females and persons with higher ADL and communication functional status exhibited more pleasure. Pleasure was most likely to occur in environments with moderate noise levels. These results demonstrate that these nursing home residents are indeed capable of showing pleasure. Caregivers of nursing home residents with dementia should incorporate social, self-identity, and music stimuli into their residents' care plans so that eliciting pleasure from each resident becomes the norm rather than a random occurrence., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: To explore the impact of personal attributes, environmental attributes, and the presentation of 9 categories of stimuli on agitation in nursing home residents with dementia., Method: Participants in this randomized, controlled, observational cross-sectional study were 193 residents of 7 nursing homes, all with a diagnosis of dementia, for whom we obtained data pertaining to cognitive functioning (via the Mini-Mental State Examination), performance of activities of daily living (Minimum Data Set), and role-identity/activities of past interest (Self-Identity Questionnaire). Environmental attributes (eg, noise, lighting) and direct observations of agitation (primary outcome) were recorded via the Agitation Behavior Mapping Inventory. Engagement was measured using the Observational Measurement of Engagement. Both agitation and engagement were assessed for each stimulus (including a control condition)., Results: Univariate findings (ie, for 1 explanatory variable at a time) showed agitation to be related to several personal attributes--ie, female gender was related to verbal agitation (P < .0001); low cognitive function was related to total, verbal, and physical agitation (P < .001 for each); low performance of activities of daily living was significantly related to all types of agitation (P < .01 for total agitation and P < .05 for each type of agitation); and unclear speech was significantly related to total agitation (P < .01). Eight of the 9 stimulus categories were significantly related to decreased levels of agitation, with ORs ranging from 0.37 (live human stimuli, P < .001) to 0.79 (inanimate social stimuli, P < .05). Higher levels of engagement were related to lower levels of agitation (P < .001 for total agitation). In the multivariate analyses, higher cognitive function (P < .001), male gender (P < .05), level of engagement with stimuli (eg, duration of engagement for 3 minutes or longer, P < .05), and all 9 stimulus categories, with the exception of music, were independently predictive of lower levels of agitation (P < .001)., Conclusions: The finding that both type of stimuli and engagement level with the stimuli were significant predictors of agitation underscores the importance of engagement as a determinant of agitation levels., (© Copyright 2012 Physicians Postgraduate Press, Inc.)

Objective: To compare physicians (MDs), psychologists (PhDs), and nurse practitioners (NPs) regarding their approach to dementia-associated behavior problems in nursing home residents., Methods: A web-based questionnaire solicited information about symptoms, assessment methods, suspected etiologies, and interventions with respect to the last resident treated for dementia-associated behavior problems., Results: Responses were obtained from 108 MDs, 38 PhDs, and 100 NPs. All groups relied similarly on information from the nursing staff, speaking with nursing assistants, and care team meetings in assessment; NPs were more likely to consult with family members. A standard assessment instrument was used most frequently by PhDs (50%), but this generally assessed cognitive status rather than problem behaviors. PhDs most frequently noted depression in residents. Groups were similar in attributing the behavioral symptoms to dementia and to underlying medical conditions, but PhDs were more likely to indicate depression, loneliness/boredom, staff-resident communication, and insufficient activities as etiologies. Use of pharmacological and nonpharmacological interventions of MDs and NPs were similar. PhDs reported least satisfaction with treatment., Conclusion: Awareness of similarities and differences in the approaches of different health professionals can facilitate interdisciplinary interaction in providing care for dementia-associated behavior problems in nursing home residents., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: Engagement refers to the act of being occupied or involved with an external stimulus. In dementia, engagement is the antithesis of apathy., Objective: The Comprehensive Process Model of Engagement was examined, in which environmental, personal, and stimulus characteristics impact the level of engagement., Methods: : Participants were 193 residents of 7 Maryland nursing with a diagnosis of dementia. Stimulus engagement was assessed via the Observational Measure of Engagement, measuring duration, attention, and attitude to the stimulus. Twenty-five stimuli were presented, which were categorized as live human social stimuli, simulated social stimuli, inanimate social stimuli, a reading stimulus, manipulative stimuli, a music stimulus, task and work-related stimuli, and two different self-identity stimuli., Results: All stimuli elicited significantly greater engagement in comparison to the control stimulus. In the multivariate model, music significantly increased engagement duration, whereas all other stimuli significantly increased duration, attention, and attitude. Significant environmental variables in the multivariate model that increased engagement were: use of the long introduction with modeling (relative to minimal introduction), any level of sound (especially moderate sound), and the presence of between 2 and 24 people in the room. Significant personal attributes included Mini-Mental State Examination scores, activities of daily living performance and clarity of speech, which were positively associated with higher engagement scores., Conclusions: Results are consistent with the Comprehensive Process Model of Engagement. Personal attributes, environmental factors, and stimulus characteristics all contribute to the level and nature of engagement, with a secondary finding being that exposure to any stimulus elicits engagement in persons with dementia.

One of the common symptoms of dementia is delusions. Due to a biological conceptualization of the behaviors represented as delusions, these are classified as psychotic symptoms. This is a qualitative and quantitative study aiming to describe the delusions experienced by older persons with dementia and the context of occurrence, and to elucidate their etiology. Participants were 74 nursing home residents aged 65 and over, diagnosed with dementia, from nine nursing homes in Israel. Participants with delusions were found to have significantly more difficulties in performing ADLs, and poorer vision and hearing. Based on assessment using the BEHAVE-AD, six categories of delusions were examined: 1. One's house is not one's home, 2. Theft, 3. Danger, 4. Abandonment, 5. Misidentification, and 6. Other non-paranoid. Common themes appeared across delusions including reality, disorientation, re-experience of past events, loneliness and insecurity, boredom, and trigger. Current results suggest that delusions may not represent psychotic symptoms for most participants, because they sometimes represented reality, or were neither firm nor incontrovertible. Thus, utilizing the term delusion relegates the person's behavior to the domain of severe psychiatric phenomena and precludes understanding its true meaning., (Copyright © 2011. Published by Elsevier Ireland Ltd.)

Objective: To examine how presentation of different stimuli impacts affect in nursing home residents with dementia., Method: Participants were 193 residents aged 60 to 101 years from 7 Maryland nursing homes who had a diagnosis of dementia (derived from the medical chart or obtained from the attending physician). Cognitive functioning was assessed via the Mini-Mental State Examination (MMSE), and data pertaining to activities of daily living were obtained through the Minimum Data Set. Affect was assessed using observations of the 5 moods from Lawton's Modified Behavior Stream. Baseline observations of affect were performed for comparisons. During the study, each participant was presented with 25 predetermined engagement stimuli in random order over a period of 3 weeks. Stimuli were categorized as live social, simulated social, manipulative, work/task-related, music, reading, or individualized to the participant's self-identity. The dates of data collection were 2005-2007., Results: Differences between stimulus categories were significant for pleasure (F(6,144) = 25.137, P < .001) and interest (F(6,144) = 18.792, P < .001) but not for negative affect. Pleasure and interest were highest for the live social category, followed by self-identity and simulated social stimuli for pleasure, and for manipulative stimuli in terms of the effect on interest. The lowest levels of pleasure and interest were observed for music. Participants with higher cognitive function had significantly higher pleasure (F(1,97) = 6.27, P < .05). Although the general trend of the impact of the different categories was similar for different levels of cognitive function, there were significant differences in pleasure in response to specific stimuli (interaction effect: F(6,92) = 2.31, P < .05). Overall, social stimuli have the highest impact on affect in persons with dementia., Conclusions: The findings of the present study are important, as affect is a major indicator of quality of life and this study is the first to systematically examine the impact of specific types of stimuli on affect. As live social stimuli are not always readily available, particularly in busy nursing home environments, simulated social stimuli can serve as an effective substitute, and other stimuli should have a role in the activity tool kit in the nursing home. The relative ranking of stimuli was different for interest and pleasure. The findings demonstrate the differential effect of presentation of different types of stimuli on the affect of persons with dementia, and that, while the impact is greater on persons with higher levels of cognitive function, there is a different effect of varying stimuli even in persons with MMSE scores of 3 or lower. Future research should attempt to ascertain a person's degree of interest in stimuli prior to developing an intervention., (© Copyright 2011 Physicians Postgraduate Press, Inc.)

The precise operational definition of psychosis in dementia lacks consensus, partially owing to incongruence in the various assessment tools used. This study compares assessments of psychotic symptoms in persons with dementia, specifically of hallucinations and delusions, through the 4 most frequently used assessments. Participants were 74 nursing home residents from 9 nursing homes in Israel, diagnosed with dementia. Assessment tools used included the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD), the Neuropsychiatric Inventory-Nursing Homes (NPI-NH), the Consortium to Establish a Registry for Alzheimer's Disease Behavior Rating Scale for Dementia (CERAD-BRSD), and the Columbia University Scale for Psychopathology in Alzheimer's Disease (CUSPAD). The highest prevalence rates of delusions were found through the CUSPAD, and the lowest through the CERAD-BRSD. Rates identified by the BEHAVE-AD were intermediate and similar to those of the NPI-NH. As for hallucinations, rates indicated by the BEHAVE-AD, the NPI-NH, and the CUSPAD were similar, with small sample-based differences, and higher than those found through the CERAD-BRSD. The CERAD-BRSD, soliciting reports of the fewest specific symptoms, detected the fewest psychotic symptoms. The CUSPAD, soliciting the most items, presented the highest prevalence rates. The BEHAVE-AD and the NPI-NH had similar rates and showed a high convergent validity.

Background: Psychosocial interventions in long-term care have the potential to improve the quality of care and quality of life of persons with dementia. Our aim is to explore the evidence and consensus on psychosocial interventions for persons with dementia in long-term care., Methods: This study comprises an appraisal of research reviews and of European, U.S. and Canadian dementia guidelines., Results: Twenty-eight reviews related to long-term care psychosocial interventions were selected. Behavioral management techniques (such as behavior therapy), cognitive stimulation, and physical activities (such as walking) were shown positively to affect behavior or physical condition, or to reduce depression. There are many other promising interventions, but methodological weaknesses did not allow conclusions to be drawn. The consensus presented in the guidelines emphasized the importance of care tailored to the needs and capabilities of persons with dementia and consideration of the individual's life context., Conclusions: Long-term care offers the possibility for planned care through individualized care plans, and consideration of the needs of persons with dementia and the individual life context. While using recommendations based on evidence and consensus is important to shape future long-term care, further well-designed research is needed on psychosocial interventions in long-term care to strengthen the evidence base for such care.

The present study examined the impact of different attributes of social stimuli using the stimulus attributes aspect of the Comprehensive Process Model of Engagement ( Am J Geriatr Psychiatry. 17:299-307). Participants were 193 residents of 7 Maryland nursing homes with a diagnosis of dementia. Stimuli were chosen to represent different levels of the following social attributes: social versus not social, realistic versus not realistic, animated versus nonanimated, human versus nonhuman, and alive versus not alive. Participants had significantly longer engagement, were significantly more attentive, and displayed a significantly more positive attitude with social stimuli than with nonsocial stimuli. Longer durations and higher ratings of attention and attitude were seen with realistic and animated stimuli as compared to their counterparts. Human and live stimuli resulted in significantly more engagement than their counterparts. Giving any social stimulus to the residents is preferable to providing none, and the social attributes of stimuli should be maximized.

Objectives: To assess the relative effect of different types of stimuli on agitated behaviors of nursing home residents with dementia., Design: Repeated-measures design with randomized assignment of conditions., Setting: Seven Maryland nursing homes., Participants: One hundred eleven nursing home residents with a diagnosis of dementia who exhibited agitation., Intervention: Different types of stimuli (music, social stimuli, simulated social stimuli, and individualized stimuli based on the person's self-identity) were presented., Measurements: Agitation was directly observed and recorded using the Agitation Behavior Mapping Instrument., Results: All stimulus categories were associated with significantly less physical agitation than baseline observations, and all except for manipulative stimuli were associated with significantly less total agitation. Live social stimuli were associated with less agitation than music, self-identity, work, simulated social, and manipulative stimulus categories. Task and reading stimulus categories were each associated with significantly less agitation than work, simulated social, and manipulative stimulus categories. Music and self-identity stimuli were associated with less agitation than simulated social and manipulative stimuli., Conclusion: Providing stimuli offers a proactive approach to preventing agitation in persons with dementia, with live social stimuli being the most successful., (© 2010, Copyright the Authors. Journal compilation © 2010, The American Geriatrics Society.)

In a previous article, we discussed a theoretical framework asserting that a combination of stimulus attributes, personal attributes and environmental attributes as well as interactions among these affects engagement with stimuli by persons with dementia [Cohen-Mansfield, J., Dakheel-Ali, M., Marx, M.S., 2009. Engagement in persons with dementia: The concept and its measurement. American Journal of Geriatric Psychiatry 7, 299-307]. Based on this framework, we tested the impact on engagement of the personal meaning of stimuli, specifically examining work-like stimuli, stimuli based on the person's identity, and gender role-based activities. We hypothesized that having such meanings will render stimuli more engaging than stimuli without these meanings. Participants were 193 residents of 7 Maryland nursing homes. All participants had a diagnosis of dementia. Results confirmed the hypotheses, demonstrating that the meaning of the stimulus impacts engagement shown by persons with dementia. Interventions that involve objects or tasks with meaning specific to the person with dementia will be more likely to engage that person. Future research could explore more identity roles as well as other mechanisms affecting engagement., (Copyright 2009 Elsevier Ltd. All rights reserved.)