Life Of People With Dementia Research Articles

The use of therapeutic lying in dementia care from the perspective of Brazilian caregivers

AbstractBackgroundTherapeutic lying (TL) is a strategy that aims at the safety and well‐being of people with dementia (PwD), especially when they present behavioral changes. James et al. (2006) developed a protocol of guidelines on how to use the technique, demonstrating that its use requires trained professionals and caregivers. Considering that caregivers are the primary stakeholders in the daily life of PwD, it is critical to obtain their views on the use of TL in care practice. This study is part of a sequence of investigations into different public views on the use of TL with PwD, having already published the study with speech‐language pathologists. Thus, the purpose of this study was to verify the use and knowledge of TL among caregivers of PwD.MethodThis is a cross‐sectional study carried out through an online questionnaire. This is a cross‐sectional study carried out through an online questionnaire. The questionnaire was spread on social networks and collected sociodemographic data and information on knowledge, use and opinion regarding TL among PwD caregivers. The results were presented descriptively and the association between the frequency of the answers and the category of caregivers (formal or informal) was verified using the Chi‐square test with 5% significance.ResultsTwenty caregivers (17 informal and 3 formal), with a mean age of 48.6 years (±14.6), were included in the study. 90% of them had lied to PwD to benefit the patients and 25% had lied to benefit themselves. 20% had heard about TL, only 10% learned about the strategy in their training, and 75% would like to learn more about it. Also, 70.6% of caregivers think it is very valid to use TL, but 50% think it is very ethical. There was no significant difference for the responses when compared between formal or informal caregivers.ConclusionThe use of TL is widespread among caregivers, even without appropriate training to use this technique. Many caregivers question how ethical it can be to lie to PwD, even if it is to benefit them. Clearly, there is a need for education and training on TL in this population.

The influence of everyday acoustic environments on the challenging behaviour in dementia: a participatory observation study in Nursing Homes

AbstractObjectiveDementia is a progressive illness characterized by cognitive and functional decline and often co‐occurs with a behaviour change. ‘Challenging behaviour’ (CB) is a group of behaviours, reactions and symptoms due to dementia, which can be challenging for the (professional) caregivers. The study aims to research the influence of acoustic on CB in people with dementia (PwD).DesignAn ethnographic design was used to study the daily life of PwD in their nursing homes with a specific focus on how people react to everyday environmental sounds.Setting/participantsThirty‐five residents were included in the sample based on a purposeful, homogeneous group characteristics sampling. Empirical data were collected using 24/7 participatory observations. The collected data were analyzed using a phenomenological‐hermeneutical Method: a naïve understanding, a structural analysis, and a comprehensive understanding.ResultsThe onset of CB depends on whether the resident feels safe and is triggered by an excess or lack of stimuli. The excess or shortage of stimuli and whether and when it affects a person is highly personal. It depends on various factors, such as the person’s state and the time of day. In addition, the nature of the stimuli, familiarity or strangeness is also a determining factor for the onset and progression of CB.ConclusionCB is an indirect consequence of something that threatens the well‐being of the PwD. This unsettling feeling can find its cause in the acoustic environment. The results can form an essential basis for developing soundscapes to make the PwD feel safe and reduce CB.

The Influence of Everyday Acoustic Environments on the Challenging Behavior in Dementia: A Participatory Observation Study in Nursing Homes.

Challenging behavior (CB) is a group of behaviors, reactions and symptoms due to dementia, which can be challenging for the caregivers. The study aims to research the influence of acoustics on CB in people with dementia (PwD). An ethnographic method was used to study the daily life of PwD in their nursing homes with a specific focus on how people react to everyday environmental sounds. Thirty-five residents were included in the sample based on purposeful, homogeneous group characteristics and sampling. Empirical data were collected using 24/7 participatory observations. The collected data were analyzed using a phenomenological-hermeneutical method: a naïve understanding, a structural analysis and a comprehensive understanding. The result shows that the onset of CB depends on whether the resident feels safe and is triggered by an excess or lack of stimuli. The excess or shortage of stimuli and whether and when it affects a person is personal. It depends on various factors, the person's state and the time of day, the nature of the stimuli, familiarity, or strangeness is also a determining factor for the onset and progression of CB. The results can form an essential basis for developing soundscapes to make the PwD feel safe and reduce CB.

Adapting the World Health Organization iSupport Dementia program to the Indonesian socio-cultural context.

Providing care for people with dementia (PwD) without sufficient understanding of the condition might negatively affect the wellbeing of the caregivers, given the lengthy care and progressive nature of the disease. The iSupport for dementia developed by World Health Organization (WHO) is a self-administered training manual for caregivers of PwD, adaptable to local cultures and contexts. This manual needs translation and adaptation to produce a culturally appropriate version for use in Indonesia. This study reports the outcomes and lessons learnt from our translation and adaptation of iSupport content into Bahasa Indonesia. The original iSupport content was translated and adapted using the WHO iSupport Adaptation and Implementation Guidelines. The process included forward translation, expert panel review, backward translation, and harmonization. The adaptation process included Focus Group Discussions (FGD), involving family caregivers, professional care workers, professional psychological health experts, and Alzheimer's Indonesia representatives. The respondents were asked to express their opinions about the WHO iSupport program, which comprises five modules and 23 lessons covering well-established topics on dementia. They were also asked to suggest improvements and their personal experiences compared to the adaptations applied in the iSupport. Two experts, 10 professional care workers, and eight family caregivers participated in the FGD. Overall, all participants had positive views of the iSupport material. The expert panel identified the need to reformulate definitions, recommendations, and local case studies to fine-tune the original contents to local knowledge and practices. Based on the feedback in the qualitative appraisal, several improvements regarding the language and diction, additional relevant and concrete examples, personal names and cultural habits, and customs and traditions were addressed. The translation and adaptation of the iSupport into the Indonesian context have shown some changes needed to make the iSupport content culturally and linguistically appropriate for Indonesian end users. In addition, given the broad spectrum of dementia, various case illustrations have been added to improve the understanding of care in particular situations. Future studies are needed to evaluate the efficacy of the adapted iSupport in improving the quality of life of PwD and their caregivers.

What evidence is there for implicating the brain orexin system in neuropsychiatric symptoms in dementia?

Neuropsychiatric symptoms (NPS) affect people with dementia (PwD) almost universally across all stages of the disease, and regardless of its exact etiology. NPS lead to disability and reduced quality of life of PwD and their caregivers. NPS include hyperactivity (agitation and irritability), affective problems (anxiety and depression), psychosis (delusions and hallucinations), apathy, and sleep disturbances. Preclinical studies have shown that the orexin neuropeptide system modulates arousal and a wide range of behaviors via a network of axons projecting from the hypothalamus throughout almost the entire brain to multiple, even distant, regions. Orexin neurons integrate different types of incoming information (e.g., metabolic, circadian, sensory, emotional) and convert them into the required behavioral output coupled to the necessary arousal status. Here we present an overview of the behavioral domains influenced by the orexin system that may be relevant for the expression of some critical NPS in PwD. We also hypothesize on the potential effects of pharmacological interference with the orexin system in the context of NPS in PwD.

Impact of Actual Use Behavior of Healthcare Wearable Devices on Quality of Life: A Cross-Sectional Survey of People with Dementia and Their Caregivers in Ghana.

The increasing prevalence of dementia has necessitated the introduction and use of healthcare wearable devices to augment the healthcare services delivered to people with dementia (PWDs). Unfortunately, evidence on user feedback and the real impact of the actual use of these devices on the quality of life of PWDs has not been fully explored, especially in the context of developing countries. This study, therefore, seeks to evaluate the impact of actual use behavior (AUB) of healthcare wearable devices on the quality of life (QoL) of PWDs in Ghana by using constructs from the extended Unified Theory of Acceptance and Use of Technology (UTAUT2) model and the SF-36 quality of life instrument. Data were collected from people with dementia and, in some cases, caregivers (acting as proxies) in three administrative regions of Ghana using structured questionnaires. Of the 420 questionnaires distributed, 356 were returned, giving a response rate of (356/420, 84.8%). Three hundred and twenty (320) responses were used for further analysis, employing the Partial Least Squares based on Structural Equation Modeling. The results showed a significant positive relationship between AUB and QoL (p < 0.001). Other predictors such as behavioral intention, facilitating conditions, effort expectancy and social influence were also found to significantly impact the actual use behavior of healthcare wearable devices among PWDs. The study also revealed that 4% (14) of patients rated their reported health transition associated with the use of healthcare wearable devices as excellent, 42.5% (136) as very good, and 39.4% (126) as good, respectively at the time of the study compared to a year ago. This study provided empirical evidence of the positive impact of the actual use of healthcare wearable devices on the quality of life of PWDs and further highlighted the factors that drive actual use behavior among PWDs in Ghana. Based on the findings of this study, stakeholders need to create the necessary conditions that will facilitate the adoption and use of healthcare wearable devices, as this will help improve the quality of life, reduce the burden of the disease on caregivers, and enable independent living of PWDs.

Design and Implementation of a Smart Home in a Box to Monitor the Wellbeing of Residents With Dementia in Care Homes.

There is a global challenge related to the increasing number of People with Dementia (PwD) and the diminishing capacity of governments, health systems, and caregivers to provide the best care for them. Cost-effective technology solutions that enable and ensure a good quality of life for PwD via monitoring and interventions have been investigated comprehensively in the literature. The objective of this study was to investigate the challenges with the design and deployment of a Smart Home In a Box (SHIB) approach to monitoring PwD wellbeing within a care home. This could then support future SHIB implementations to have an adequate and prompt deployment allowing research to focus on the data collection and analysis aspects. An important consideration was that most care homes do not have the appropriate infrastructure for installing and using ambient sensors. The SHIB was evaluated via installation in the rooms of PwD with varying degrees of dementia at Kirk House Care Home in Belfast. Sensors from the SHIB were installed to test their capabilities for detecting Activities of Daily Living (ADLs). The sensors used were: (i) thermal sensors, (ii) contact sensors, (iii) Passive Infrared (PIR) sensors, and (iv) audio level sensors. Data from the sensors were collected, stored, and handled using a ‘SensorCentral’ data platform. The results of this study highlight challenges and opportunities that should be considered when designing and implementing a SHIB approach in a dementia care home. Lessons learned from this investigation are presented in addition to recommendations that could support monitoring the wellbeing of PwD. The main findings of this study are: (i) most care home buildings were not originally designed to appropriately install ambient sensors, and (ii) installation of SHIB sensors should be adapted depending on the specific case of the care home where they will be installed. It was acknowledged that in addition to care homes, the homes of PwD were also not designed for an appropriate integration with ambient sensors. This study provided the community with useful lessons, that will continue to be applied to improve future implementations of the SHIB approach.

Effects of coach robot pepper versus tablet training on psychosocial and physical outcomes of persons with dementia: A mixed‐methods study

AbstractBackgroundThe evidence of social robots for people with dementia (PwD) living at home is unclear. The aim was to explore the effects of Coach Pepper (socially assistive humanoid robot system “AMIGO” combined with external tablet‐based training) versus an exclusively tablet‐based training on quality of life, motivation, cognition, mobility, care dependency, depression, and neuropsychiatric symptoms, as well as the user experience with Coach Pepper.MethodsThe study (2019‐2020) includes a randomized controlled trial with complementary interviews using content analysis. The intervention group (16 PwD) received Coach Pepper and the control group (16 PwD) an exclusively tablet‐based training for three weeks. Data were collected using standardized questionnaires (AES, MOCA, DEMQOL, PAS, TUG, GDS, NPI) and interviews.ResultsIn both groups, PwD were &gt;80 years old and mainly female. The mild stage of Alzheimer's was predominant in both groups. The comparison of quality of life (DEMQOL questionnaire) between the groups showed a significantly greater increase in the Coach Pepper group (X̅: 5.48 vs. ‐0.31; med: 4 vs. 2 points, p = 0.0226). Furthermore, global quality of life increased significantly in the Coach Pepper group (X̅: 0.4 vs. ‐0.2; med: 1.0 vs. 0.0 points; p = 0.013). All other outcomes did not differ significantly. Main qualitative results: Attitude/feelings ‐ PwD reacted mainly positively to Pepper. The PwD were generally not afraid of Pepper and did not feel repulsed. They found Pepper nice/pleasant and funny. Communication, social contacts ‐ Pepper was received well and integrated as a family member. His presence was not disturbing, more an enrichment. PwD regarded Pepper as a friend, child and contact person. He promoted communication in PwD. The life of PwD “bloomed” and they bonded with Pepper, which caused feelings of sadness after Pepper moved out. Meaningful activities‐ music and dance activities stimulated PwD particularly positively.ConclusionCoach Pepper significantly increased the quality of life of the PwD in the robot group. As the additional qualitative results demonstrate, this increase can be attributed in particular to the promotion of communication and social contacts by Pepper. Further research should focus on the increase of Pepper’s communication skills and program content.

515 - Developing an observational instrument for people with somatic care needs to review Person-Centred Care in Nursing Homes

Healthcare professionals working with people with dementia (PwD) increasingly apply a person-centred care (PCC) model instead of task-oriented models of healthcare. Several studies have shown positive results of PCC on the quality of life of PwD. The PCC-model has not only shown positive results in the quality of life of PwD, but also for people with somatic needs.Dementia Care Mapping (DCM) is a dementia-specific observational tool that is used worldwide in long- term care facilities (LTCFs) for developing PCC-practice, but also to review staff development- and training needs. LTCFs providing care for people with somatic needs also have the need of a instrumentlike DCM, but nothing specific is available. In this project we develop, together with a Dutch nursing home and DCM-Netherlands, a method that suits this target group with the same aims as DCM.An iterative design has been applied. Based on a literature search and experience of the project group, a method has been developed. This method consists of three main components: (1)group observation with components of DCM, (2)structured interviews with residents and (3)feedback sessions with professionals and individual feedback for residents. To determine if the method meets the needs of practice, several expert groups (residents, informal caregivers and nursing staff) where asked about the content and feasibility using interviews/focus group. Furthermore in a pilot, the method will be tested by experienced DCM-mappers in practice, based on the outcomes of this pilot adjustments will be made.We are currently in the pilot phase and expecting to finalise the method with instruction manual coming summer. First feedback of the project- and expert groups are very positive. The nursing staff endorse the need of this instrument, and also feel it contributes to a better PCC-attitude. On the other hand, they emphasize that implementation can be challenging, because of time constraints in daily care.

514 - Practice-based intervention to implement Person Centered care in long-term care facilities for people with Dementia

Healthcare professionals working with people with dementia (PwD) have increasingly been moving away from task-oriented models of healthcare towards person-centered care (PCC). Several studies have showed positive results of PCC on quality of life of PwD. Also, it shows positive effects on self-esteem and work satisfaction of healthcare professionals (HCP).We developed an successful practice-oriented intervention to implement PCC in long-term care facilities (LTCFs), based on the theory of Kitwood. The intervention consists of different components and learning methods: 1)Management of the facility is trained. They have an important role in motivating HCPs and safeguarding PCC-policy in the future.2)Dementia Care Mapping (DCM)-observations are carried out to gain understanding of the LTCF. DCM is an evidence-based observational method and aims to give a good understanding of the quality of life of PwD.3)The training of staff starts with a Kick-off-meeting. During a ‘Mirror theater’ with professional actors, an act representing a familiar care situation is performed. Staff participates in the act to become aware of PCC. The kick-off also serves as a warming-up on PCC knowledge.4)After this, staff complete an interactive e-learning on the basic theory of PCC. The e-learning contains practical videos and exercises.5)Finally, staff follow two consecutive, practical-oriented team-trainings. They will learn what PCC means for their daily practice and how to reflect on it. The most effective part is the reflection on examples of their own clients, and get more aware of their own behavior. In between trainings, HCP will carry out a practice exercise and provide feedback in session two.In an early stage of the intervention we discuss the possibilities and adjust the approach to the needs and situation (culture, level of knowledge etc.) of the LTCF. Involvement of all the staff in the intervention is essential, so everyone speaks the same ‘language’ and staff can rely on each other. Based on experience, these factors contributes to a sustainable way to implement PCC in LTCFs.

Primary dementia care based on the individual needs of the patient: study protocol of the cluster randomized controlled trial, DemStepCare

BackgroundMost people with dementia (PwD) are cared for at home, with general practitioners (GPs) playing a key part in the treatment. However, primary dementia care suffers from a number of shortcomings: Often, diagnoses are made too late and therapies by GPs do not follow the guidelines. In cases of acute crises, PwD are too often admitted to hospital with adverse effects on the further course of the disease.The aim of this study is to implement and evaluate a new GP-based, complex dementia care model, DemStepCare. DemStepCare aims to ensure demand-oriented, stepped care for PwD and their caregivers.Methods/designIn a cluster randomized controlled trial, the care of PwD receiving a complex intervention, where the GP is supported by a multi-professional team, is compared to (slightly expanded) usual care.GPs are clustered by GP practice, with 120 GP practices participating in total. GP practices are randomized to an intervention or a control group. 800 PwD are to be included per group. Recruitment takes place in Rhineland-Palatinate, Germany. In addition, a second control group with at least 800 PwD will be formed using aggregated routine data from German health insurance companies. The intervention comprises the training of GPs, case management including repeated risk assessment of the patients’ care situation, the demand-oriented service of an outpatient clinic, an electronic case record, external medication analyses and a link to regional support services. The primary aims of the intervention are to positively influence the quality of life for PwD, to reduce the caregivers’ burden, and to reduce the days spent in hospital. Secondary endpoints address medication adequacy and GPs’ attitudes and sensitivity towards dementia, among others.DiscussionThe GP-based dementia care model DemStepCare is intended to combine a number of promising interventions to provide a complex, stepped intervention that follows the individual needs of PwD and their caregivers. Its effectiveness and feasibility will be assessed in a formative and a summative evaluation.Trial registrationGerman Register of Clinical Trials (Deutsches Register Klinischer Studien, DRKS), DRKS00023560. Registered 13 November 2020 - Retrospectively registered. HTML&TRIAL_ID=DRKS00023560.

Focusing on Emotional and Social Intelligence Stimulation of People With Dementia by Playing a Serious Game—Proof of Concept Study

Context: Dementia is one of the top five chronic diseases, which has an overwhelming impact on patients' life quality, family, and caregivers. Currently, research relating to people with dementia (PwD) focuses on the deterioration of cognitive abilities. A more innovative approach, and the one taken by this paper, is focusing on methods to maintain and improve functionality, communication and quality of life of PwD by building on remaining capacities in the yet unexplored domain of emotional and social intelligence (ESI). The use of serious games for PwD (SG4D) aimed at building social and emotional capacity is a budding field of research.Objectives: Proof of concept that the, low cost, easy to deploy SG4D, called “My Brain Works” (MBW), co-designed with PwD, enhances ESI, based on the Bar-On ESI model.Methods: 27 PwD, clients at MELABEV dementia day center, participated in a mixed methods 12 weeks pilot, proof of concept study using a tablet SG4D co-designed with PwD. Quantitative performance data was collected automatically by the tablet during game sessions. In this paper we focus on the analysis of the qualitative and quantitative data related to ESI, observed by 10 different researchers, during each game session.Results: Quantitative data revealed: both the PwD with high and low MoCA scores had similar average ESI scores. Qualitative analysis revealed that the PwD demonstrated 9 sub-components of the Bar-On ESI Model.Conclusion: While there is no drug to stop cognitive decline associated with dementia, interventions related to ESI, on the other hand, may improve functioning and quality of life. Despite declines in cognitive abilities, our study shows that a tablet based SG4D can stimulate their ESI and evoke responses in self-awareness, empathy, social and communication capacities. Using SG4D to exercise and maintain social skills is an area that may be promising in the future and may help counter the negative effects of social isolation and loneliness. Such games, while not focusing on cognitive improvement, may also impact on cognitive functioning and help bridge the gap between caregiver and PwD. More research is needed with larger sample sizes.

415 - Evaluation of an e-learning aiming to improve person-centered attitude in healthcare professionals working with people with dementia

Introduction Healthcare professionals working with people with dementia (PwD) have increasingly been moving away from task-oriented models of healthcare towards a more person-centered care (PCC) model. Several studies have showed positive results of PCC on the quality of life of PwD. Also, it shows positive effects on self -esteem and work satisfaction of healthcare professionals. An effective way to educate professionals in PCC and improve their knowledge and person-centered attitude is by using online learning tools.We developed an e-learning in co-creation with end users focusing on well-being and (changing) behavior of PwD. The interactive e-learning supports healthcare professionals in developing a person-centered attitude, by using practical videos and exercises.Methods In the current pilot study, the e-learning is evaluated. To date, 33 healthcare professionals working in Dutch care homes from different care organizations participated in the study and completed the e-learning. In addition, they filled in online questionnaires before and after completing the e-learning. The questionnaires include the Approach to Dementia Questionnaire, Dementia Knowledge, Person Centered Care, Sense of Competence in Dementia Care Questionnaire. Post-measurement also included questions about satisfaction with the e-learning and user-friendliness.Results The final participants are currently completing their post-measurement questionnaires and final results are expected in September 2019. Preliminary data-analysis shows promising results. Positive effects on knowledge about dementia, person-centered attitude and sense of competence are expected. Also, user-friendliness, especially the flexibility of the e-learning (being able to follow the e-learning at home or at work and being able to stop and continue at any time) and the practice-oriented videos are positively evaluated.Conclusion Preliminary results of this pilot study suggest that the e-learning might contribute to developing a more person-centered attitude in healthcare professionals and indicate that participants have positive experiences with the e-learning module.

Effects of Exergaming on Cognitive and Social Functioning of People with Dementia: A Randomized Controlled Trial

ObjectivesPhysical activity in people with dementia (PwD) may enhance physical and mental functioning. Exergaming, which combines physical exercise with cognitive stimulation in a gaming environment, was developed to overcome barriers in performing physical activities. We evaluated the effects of exergaming in day care centers (DCCs) for PwD and informal caregivers (ICs). DesignA randomized controlled trial among 23 DCCs across the Netherlands randomized to exergaming (interactive cycling during 6 months) or a care-as-usual control group. Setting and ParticipantsA total of 112 (73 exergaming, 39 control) community-dwelling dyads (PwD, IC), with the PwD visiting a DCC at least twice per week. MethodsAll outcomes were assessed using structured questionnaires during interviews with PwD and ICs at baseline (T0), 3 months (T1), and 6 months (T2). Primary outcomes: physical activity and mobility of the PwD. Secondary outcomes: physical, cognitive, emotional and social functioning, and quality of life for PwD. For ICs: experienced burden, quality of life, and positive care experiences. ResultsMixed-model analyses showed no statistically significant effects on primary outcomes. There were statistically significant positive effects on PwD's secondary outcomes at T2 on cognition [Mini-Mental State Examination (MMSE): r = 2.30, 95% confidence interval (CI): 0.65, 3.96, P = .007; and Trail Making Test part A (TMT-A): r = −28.98, 95% CI: −54.89, −3.08, P = .029], social functioning (Behavior Observation Scale for Intramural Psychogeriatrics subscale 1 (GIP): r = −1.86, 95% CI: −3.56, −0.17, P = .031), and positive post-test effects in ICs on distress caused by the PwD's neuropsychiatric symptoms (NPI-Q total distress: r = −3.30, 95% CI: −6.57, −0.03, P = .048) and on sense of competence (SSCQ: r = 2.78, 95% CI: 0.85, 4.71, P = .005). Conclusions and ImplicationsExergaming appeared not effective on the primary outcomes. Despite the study being underpowered, we found positive effects on secondary outcomes for PwD and ICs, and no negative effects. We therefore recommend further study, dissemination, and implementation.

E-LEARNING FOR IMPROVING PERSON-CENTERED ATTITUDE IN PROFESSIONALS WORKING WITH PEOPLE WITH DEMENTIA: PILOT STUDY

Healthcare professionals working with people with dementia (PwD) have increasingly been moving towards a person-centered care (PCC) attitude. Several studies have showed positive results of PCC on quality of life of PwD. Also, it shows positive effects on self-esteem and work-satisfaction of professionals. An effective way to educate professionals in PCC is by using online-learning-tools. We developed an e-learning - in co-creation with end-users - focusing on well-being and challenging behavior of PwD. The interactive e-learning supports healthcare professionals in developing a PCC-attitude, using practical videos and exercises. In the current pilot-study, the e-learning is evaluated. To date, 32 professionals working in Dutch care homes from different care organizations participated in the study and completed the e-learning. In addition, they filled in online questionnaires before and after completing the e-learning. The questionnaires include the Approach to Dementia Questionnaire, Dementia Knowledge, Person Centered Care, Sense of Competence in Dementia Care Questionnaire. Post-measurement also included questions about satisfaction with the e-learning and user-friendliness. The final participants are currently completing their post-measurement questionnaires and final results are expected in October 2019. Preliminary data-analysis shows promising results. Although no significant effects were found, two-thirds of the participants indicated they had more knowledge about dementia, could better deal with challenging behavior and understood better how their own behavior and actions influence the behavior of PwD. The user-friendliness was also positively evaluated. Preliminary results suggest that the e-learning helps professionals in their approach to PwD and indicate that participants have positive experiences with the e-learning.

A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability.

BackgroundThe increasing number of people with dementia (PwD) drives research exploring Web-based support interventions to provide effective care for larger populations. In this concept, a Web-based platform (CAREGIVERSPRO-MMD, 620911) was designed to (1) improve the quality of life for PwD, (2) reduce caregiver burden, (3) reduce the financial costs for care, and (4) reduce administration time for health and social care professionals.ObjectiveThe objective of this study was to evaluate the usability and usefulness of CAREGIVERSPRO-MMD platform for PwD or mild cognitive impairment (MCI), informal caregivers, and health and social care professionals with respect to a wider strategy followed by the project to enhance the user-centered approach. A secondary aim of the study was to collect recommendations to improve the platform before the future pilot study.MethodsA mixed methods design was employed for recruiting PwD or MCI (N=24), informal caregivers (N=24), and professionals (N=10). Participants were asked to rate their satisfaction, the perceived usefulness, and ease of use of each function of the platform. Qualitative questions about the improvement of the platform were asked when participants provided low scores for a function. Testing occurred at baseline and 1 week after participants used the platform. The dropout rate from baseline to the follow-up was approximately 10% (6/58).ResultsAfter 1 week of platform use, the system was useful for 90% (20.75/23) of the caregivers and for 89% (5.36/6) of the professionals. When users responded to more than 1 question per platform function, the mean of satisfied users per function was calculated. These user groups also provided positive evaluations for the ease of use (caregivers: 82%, 18.75/23; professionals: 97%, 5.82/6) and their satisfaction with the platform (caregivers: 79%, 18.08/23; professionals: 73%, 4.36/6). Ratings from PwD were lower than the other groups for usefulness (57%, 13/23), ease of use (41%, 9.4/23), and overall satisfaction (47%, 11/23) with the platform (P<.05). Qualitative comments related to both improvements for functionality and the platform interface.ConclusionsAlthough caregivers and professionals were overall satisfied with the platform, further adaptations were recommended by PwD. This reiterates the importance of the involvement of end users in the development of Web-based interventions. Recommendations from users in this paper apply for the interface and functionality of a wider range of Web-based support interventions.

Using multimedia information and communication technology (ICT) to provide added value to reminiscence therapy for people with dementia : Lessons learned from three field studies.

In the care of people with dementia (PwD), occupational therapies and activities aiming at maintaining the quality of life of PwD, such as reminiscence therapy (RT), are taking on amore and more important role. Information and communication technology (ICT) has the potential to improve and to facilitate RT by facilitating access to and selection of biographical information and related contents or by providing novel multimodal interaction forms to trigger memories; however, interactive multimedia technology is barely used in practice. This article presents three exploratory field studies that evaluated different aspects of RT technology use for PwD in care homes, including the utilization of online movie databases, interactive surface touch computers as well as natural user interfaces allowing gestures and haptic interaction. In these studies, the usage of prototype systems was observed in occupational sessions by 5, 12 and 16 PwD. The results indicate positive effects of technology use, e. g. in the form of verbally elicited reminiscence statements, expressed joy and playful interaction. Lessons learned for the design of technology-based RT interventions are presented and discussed.

Situation Model for Situation-Aware Assistance of Dementia Patients in Outdoor Mobility.

Background:Dementia impairs spatial orientation and route planning, thus often affecting the patient’s ability to move outdoors and maintain social activities. Situation-aware deliberative assistive technology devices (ATD) can substitute impaired cognitive function in order to maintain one’s level of social activity. To build such a system, one needs domain knowledge about the patient’s situation and needs. We call this collection of knowledge situation model.Objective:To construct a situation model for the outdoor mobility of people with dementia (PwD). The model serves two purposes: 1) as a knowledge base from which to build an ATD describing the mobility of PwD; and 2) as a codebook for the annotation of the recorded behavior.Methods:We perform systematic knowledge elicitation to obtain the relevant knowledge. The OBO Edit tool is used for implementing and validating the situation model. The model is evaluated by using it as a codebook for annotating the behavior of PwD during a mobility study and interrater agreement is computed. In addition, clinical experts perform manual evaluation and curation of the model.Results:The situation model consists of 101 concepts with 11 relation types between them. The results from the annotation showed substantial overlapping between two annotators (Cohen’s kappa of 0.61).Conclusion:The situation model is a first attempt to systematically collect and organize information related to the outdoor mobility of PwD for the purposes of situation-aware assistance. The model is the base for building an ATD able to provide situation-aware assistance and to potentially improve the quality of life of PwD.

Quality of life ratings in dementia care--a cross-sectional study to identify factors associated with proxy-ratings.

ObjectiveQuality of life (QoL) is one major outcome parameter in the care for people with dementia (PwD); however, their assessment is lacking a gold standard. The purpose of this study was to evaluate potential factors associated with nurse-rated quality of life of PwD in nursing homes in Berlin, Germany.MethodAn explorative cross-sectional study was performed in five nursing homes to evaluate QoL. Nurses rated the QoL for all residents with dementia by completing two different standardised assessments (ADRQL, QUALIDEM). Potential associated factors were evaluated concerning resident and nurse related factors. A fixed-effects models of analysis of co-variance (ANCOVA) was used to analyse effects of assumed associated factors of the major outcome parameters ADRQL and QUALIDEM. Associated factors were severity of dementia (GDS), challenging behaviour (CMAI), and other characteristics. Regarding the nurses, burnout (MBI), satisfaction with life (SWLS), attitude (ADQ) and empathy toward residents (JSPE), as well as circumstances of the ratings and days worked in advance of the ratings were assessed.ResultsIn total, 133 PwD and 88 nurses were included. Overall, the ratings show moderate to high QoL in every subscale independent of the instrument used. Assumed confounders relevantly influenced 14 out of 17 ratings. Predominantly, residents’ challenging behaviour, nurses’ burnout and satisfaction with life as well as the circumstances of the ratings are significant and clinically relevant associated factors.ConclusionAssessing QoL of PwD is acknowledged as a central component of health care and health care research. In later stages of dementia, proxy-reported information obtained from quality of life questionnaires is and will continue to be essential in this research. However, methodological issues that underline this research - matters of measurement and instrument validity - must receive more attention. Associated factors in proxy-ratings have to be routinely assessed in order to get more valid and comparable estimates.

Unmet needs, quality of life and support networks of people with dementia living at home

BackgroundThere is lack of evidence about the unmet needs of people with dementia (PWD) living at home and the predictors of high levels of unmet needs. The main aim of this study was to identify the relationship between unmet needs, social networks and quality of life of PWD living at home.MethodsOne hundred and fifty two community dwelling PWD and 128 carers were interviewed about PWD's needs, social networks, quality of life and other functional and psychological factors. All the interviews with PWD were carried out at their homes. Interviews with carers were undertaken either at PWD's home, their own home or at the health centre. Whenever possible, PWD and carers were interviewed separately. The data collection took place between November 2005 and July 2007. The majority of participants (129, 84.9%) were recruited from National Health Services (NHS) and the rest (23, 15.1%) were recruited from other organisations such as social services and voluntary organizations in the UK.ResultsThe most frequent unmet needs for PWD were daytime activities (77, 50.7%), company (60, 39.5%), and help with psychological distress (47, 30.9%). Higher number of behavioural and psychological symptoms, low-community involvement social networks, having a younger carer and higher carer's anxiety were found to be predictors of higher unmet needs in PWD. Social networks and behavioural and psychological symptoms had an indirect effect on PWD's self-rated quality of life through unmet needs.ConclusionsInterventions aiming to reduce unmet needs, through the treatment of behavioural and psychological symptoms and the involvement of PWD in the community, would potentially improve PWD's quality of life.