Observe once again:dementia in people with severe/profound intellectual (and multiple) disabilities

Let’s not forget dementia in people with severe/profound intellectual (and multiple) disabilitiesDementia is increasingly prevalent among people with intellectual disabilities as their life expectancy has increased. A major challenge in intellectual disability care is to observe symptoms and diagnose dementia in people with severe/profound intellectual (and multiple) disabilities (abbreviated to SPI(M)D). Until recently, knowledge and dementia screening instruments dedicated to people with SPI(M)D were scarce. Dementia in people with SPI(M)D was a forgotten topic, which had to be changed.We have brought about a change by conducting practice-oriented research examining the relevance of a dementia diagnosis and identifying observable dementia symptoms in people with SPI(M)D. Based on the results, training modules and an instrument to aid diagnosis of dementia in this population were developed. Results showed that a dementia diagnosis in people with SPI(M)D is important for a better understanding and to be able to make informed choices. However, dementia cannot be diagnosed if symptoms are not recognized. Caregivers and family members need specialized knowledge to recognize subtle dementia symptoms. The novel, freely accessible training modules could offer them such knowledge as it provides information about observable dementia symptoms in people with SPI(M)D (vb-dementie.nl/kennismodules). These training modules show that dementia manifests as a set of cognitive symptoms, activities of daily living symptoms, behavioral and psychological symptoms, motor symptoms, and medical comorbidities. For psychologists and psychological assistants, we have developed a diagnostic aid for dementia in people with SPI(M)D to identify and monitor those symptoms (vb-dementie.nl/diagnostisch-hulpmiddel). With newly developed knowledge and practical tools at their disposal, it is up to care professionals and family members to observe once again to recognize and diagnose dementia in people with SPI(M)D. This ensures that dementia in people with SPI(M)D is not forgotten

Locomotion Traces Data Mining for Supporting Frail People with Cognitive Impairment

The rapid increase in the senior population is posing serious challenges to national healthcare systems. Hence, innovative tools are needed to early detect health issues, including cognitive decline. Several clinical studies show that it is possible to identify cognitive impairment based on the locomotion patterns of older people. Thus, this thesis at first focused on providing a systematic literature review of locomotion data mining systems for supporting Neuro-Degenerative Diseases (NDD) diagnosis, identifying locomotion anomaly indicators and movement patterns for discovering low-level locomotion indicators, sensor data acquisition, and processing methods, as well as NDD detection algorithms considering their pros and cons. Then, we investigated the use of sensor data and Deep Learning (DL) to recognize abnormal movement patterns in instrumented smart-homes. In order to get rid of the noise introduced by indoor constraints and activity execution, we introduced novel visual feature extraction methods for locomotion data. Our solutions rely on locomotion traces segmentation, image-based extraction of salient features from locomotion segments, and vision-based DL. Furthermore, we proposed a data augmentation strategy to increase the volume of collected data and generalize the solution to different smart-homes with different layouts. We carried out extensive experiments with a large real-world dataset acquired in a smart-home test-bed from older people, including people with cognitive diseases. Experimental comparisons show that our system outperforms state-of-the-art methods

Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials

Improving Care of Assisted Living Residents with Dementia Through a Competency-Based Behavioral Training Curriculum for Assisted Living Caregivers

Behavioral and psychological symptoms of dementia (BPSD) are common among residents of assisted living facilities. Inadequately managed symptoms of BPSD can lead to problematic behaviors with significant consequences for patients and caregivers. Non-pharmacologic approaches to the management of problematic behaviors in individuals with dementia are the preferred management option. Caregiver training and education to enhance knowledge and skills in managing behavioral and psychological symptoms for assisted living caregivers is indicated to provide optimum care for patients with dementia. The purpose of this doctor of nursing practice (DNP) project was to develop and implement a caregiver-training workshop utilizing a competency-based behavioral training curriculum to improve the care of dementia residents and ultimately enhance the physical and mental well-being of both the residents and caregivers. Fifteen assisted living caregivers attended a two-hour training workshop, individualized onsite monitoring, and follow-up. Overall implementation of this quality improvement project resulted in a high level of satisfaction among participating staff. Upon completion of the training workshop, a considerable increase was evident in self-perceived knowledge of dementia and related behaviors (87%), behavior management skills (94%), inter-professional communication skills (73%), and comfort level in managing behavior problems (74%), relative to self-reported pre-training levels. In contrast, an overall reduction appeared in perceived competencies regarding the same four components six weeks after training. These results suggest that this may be an effective model for a training intervention for assisted living caregivers of dementia residents with behavioral symptoms. Additional follow-up concept review and staff support may be required to sustain the changed practice behavior and maintain the benefits of the training

Longer Lives Better Health: Helping Seniors Preserve Their Physical, Mental and Social Well-Being

This ROOTS is intended to celebrate the work the Foundation has done with many good partners to re-envision aging. By addressing the physical, social, technological, and environmental factors that minimize disability and foster prevention, we aim to change the trajectories of decline and dependence. But our aspirations go further. We believe that the years post-65 can be truly golden. Worries and challenges of youth and middle age are in the past. There can and should be much joy in the present. But our systems of care must change to better meet the needs of those who want independent living and community engagement. My hope is that this ROOTS will inspire others to join us in enhancing the well-being of older adults. And I encourage other foundations -- if not already engaged -- to contemplate the satisfactions of an aging agenda. If we do it right, while advances in medicine and technology are adding years to life, we can also add life to years

Effectiveness of Team Member Education on Fall Prevention Techniques, Management of Dementia-Related Behaviors, and Safe Transfer Completion

Introduction: There is a significant need to address fall prevention in memory care/assisted living homes due to the high prevalence of falls that occur in these settings. Managing dementia-related behaviors and completing safe transfers support fall prevention in dementia populations. Fall prevention was expressed as a major need by BeeHive Homes of Mount Horeb, a memory care specific assisted living home that served as the community partner for this quality improvement project. Purpose: The quality improvement project provided education and training to team members working at BeeHive Homes of Mount Horeb on safe transfer completion, management of dementia-related behaviors, and fall prevention techniques. Approach: New training, handout packets, and videos were created throughout this experience as well as hands-on training provided to team members. A survey was created to evaluate the effectiveness of the education and training provided to team members. Results: All survey results were positive. As well as creating a survey, fall incident reports were obtained and results yielded a decrease in falls through the progression of the quality improvement project. Recommendations: Increasing the organization of team member training, maintaining an adequate supply of gait belts, having strong team member to resident staffing ratios, and making required environmental changes will all continue to support fall prevention at BeeHive Homes of Mount Horeb

Living at home with dementia: a client-centered program for people with dementia and their caregivers

Thesis (O.T.D.)--Boston UniversityThe number of elderly Americans is increasing rapidly, and dementia is prevalent within this population, especially among the growing group of people over the age of 90 (National Institutes of Health, 2011; Plassman, et al., 2007). The majority of elderly people, including many with dementia, report that they would like to stay in their own homes, which is cost effective for the family and community (Keenan, 2010; Alzheimer's Association, 2012). In addition, people with dementia who live at home are happier, safer, and more independent than those who have been placed into another setting (Alzheimer's Society, 2013). However, they present with a variety of health and safety concerns which have an impact on both their own and their caregivers' quality of life (Allan, et al., 2009; Etters, et al., 2007, Gitlin, 2010). Described in this doctoral project is a caregiver- and client-centered program geared towards delaying or even avoiding long-term care placement of people with dementia by helping to increase client tranquility, independence, and safety, therefore decreasing daily challenges and caregiver feelings of burden. Through this intervention, caregivers will be empowered with skills and strategies with which to engage and support their loved one with dementia, as they are educated regarding the following elements: methods for promoting autonomy in self-care; ways of incorporating meaningful activity into the daily routine; methods for increasing home safety; and strategies for challenging behaviors. This program incorporates a personalized approach, the inclusion of meaningful activity, safe and effective strategies for daily tasks, and an introduction to technology aides and adaptive equipment. A thorough review of the literature was completed in order to ascertain the most effective strategies for addressing the problems affecting informal home caregivers. Best practices are incorporated into the group and individual session structure, and included is a detailed information packet for clients with guidance regarding each of the 14 topics included in the program: information about dementia; fall prevention at home; self-care tasks; successful mealtimes; cooking and kitchen safety; medication management; using the telephone/emergency assistance; wandering and getting lost; rummaging, hiding, and hoarding solutions; sleep strategies; meaningful activity; the preferences worksheet; life story books; and useful resources