The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
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In Europe, estimates suggest that around 80% of all long-term care is provided by informal caregivers (Zigante, 2018). Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia) (Chiao, Wu & Hsiao, 2015). Hereby, sleep disturbance is common (Bubu et al., 2017) and an important factor for a higher care burden for the informal caregiver. We performed a project to find out in which way supportive technologies can be implemented in people’s homes.
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Purpose People with dementia (PwD) often present Behavioral and Psychological Symptoms of Dementia, which include agitation, apathy, and wandering amongst others, also known as challenging behaviors (CBs). These CBs worsen the quality of life (QoL) of the PwD and are a major source/reason of (increased) caregiver burden. The intricate nature of the symptoms implies that there is no “one size fits all solution”, and necessitates tailored approaches for both PwDs and caregivers. To timely prevent these behaviors assistive technology can be utilized to guide caregivers by enabling remote monitoring of contextual, environmental, and behavioral parameters, and subsequently alarming nurses on early-stage behavioral changes prior to the presentation of CBs. Eventually, the system should propose an intervention/action to prevent escalation. In turn, improvement in QoL for both caregivers and PwD living in nursing homes (NHs) is expected. In the current project “MOnitoring Onbegrepen Gedrag bij Dementie met sensortechnologie” (MOOD-Sense), we aim to develop such a monitoring system. The strengths of this new monitoring system lie in its ability to align with the individual needs of the PwD, utilization of a combination of wearables and ambient sensors to obtain contextual data, such as location or sound, and predict or monitor CBs individually rather than in groups, thus facilitating person-centered care, based on ontological reasoning. The project is divided into three parts, Toolbox A, B and C. Toolbox A focuses on obtaining insight in which behaviors are challenging according to nurses and how they are described. Previous studies utilize clinical terminology to describe or classify behavior, we aim to employ concrete descriptions of behavior that are observable and independent of clinical terminology, aligning with nurses who are often the first to notice behavior and can be operationalized such that it can also be aligned with sensor data. As a result, an ontology will be developed based on the data such that sensor data can be integrated into the same conceptual information that standardizes the communication in our monitoring system. Toolbox B focuses on translating data coming from various sensors into the concepts expressed in the ontology, and timely communicate situations of interest to the caregivers. In Toolbox C the focus is exploring interventions/actions employed in practice to prevent CBs. Method In Toolbox A we used a qualitative approach to collect descriptions of CBs. For this purpose, we employed focus groups (FGs) with nursing staff who provide daily care to PwD. In Toolbox B pilot studies were conducted. A set of experiments using sensors in NHs were performed. During each pilot, multiple PwD with CBs in NHs were monitored with both ambient and wearables sensors. The pilots were iteratively approached, which means that insights from previous pilot studies were used to improve consecutive pilot studies. Lastly, the elaboration of Toolbox C is ongoing. Results and Discussion Regarding Toolbox A four FGs were conducted during the period from January 2023 to May 2024. Each FG was comprised of four nurses (n = 16). From the FGs we gained insights into behavioral descriptions and the context of CBs. Although data analysis has to be performed yet, there are indications that changes preceding CBs can be observed, such as frowning or clenching fists for agitation or aggression. Further results will be available soon. Regarding Toolbox B a monitoring system, based on sensors, is developed iteratively (see Figure 1) and piloted in three consecutive NHs from January 2021 to December 2023. Each pilot was comprised of two PwD (n = 6). Analysis of sensor data is ongoing.
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Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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IntroductionObservable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.MethodsCare professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.ResultsSurvey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.ConclusionIncreased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
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Most people with dementia (PwD) are cared for by unpaid family carers, many of whom must balance caring with paid work. This regularly entails dealing with care-related emergencies (CRE). This study aims to explore the impact of carers’ autonomy at work regarding breaks, schedule, and place on their ability to manage CRE, and use technology to that end. We conducted interviews with 16 working carers of PwD in Scotland. Data were analysed thematically to identify key themes. Autonomy at work appeared on a spectrum from no to complete autonomy. Carers’ position on this spectrum was often dynamic and determined by the nature of their work, their workplace culture and regulations, and their line managers’ support – or clients in the case of self-employed carers. Break autonomy allowed carers to use technology to be notified of and delegate the CRE response. Schedule autonomy allowed for an in-person response to CRE. Place autonomy allowed carers to work and care simultaneously, which enabled them to manage CRE immediately but presented them with additional challenges. Distance between workplace and PwD’s residence impacted carers’ ability to manage CRE, despite having complete autonomy. Implications for healthcare professionals, service providers, employers, policymakers, and technology developers are presented.
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Aim Life expectancy of people with severe or profound intellectual disability (SPID) increases, which contributes to the risk of developing dementia. However, early detection and diagnosing dementia is complex, because of their low-level baseline functioning. Therefore, the aim is to identify observable dementia symptoms in adults with SPID in available literature. Method A systematic literature search, in line with PRISMA guidelines, was conducted in PubMed, PsycINFO and Web of Science using a combination of search terms for SPID, dementia/aging and aged population.Results In total, fifteen studies met inclusion criteria. Cognitive, behavioral and psychological symptoms (BPSD) and a decline in the ability to perform activities of daily living as well as neurological and physical changes were found. This presentation gives an overview of reported symptoms of (possible) dementia-related symptoms in SPID. Conclusions Despite growing attention for dementia in people with ID in literature, only very few studies have studied dementia symptoms in SPID. Given the complexity of signaling and diagnosing dementia in SPID, dedicated studies are required to unravel the natural history of dementia in SPID, specifically focusing on observable symptoms for caregivers of (early) dementia in this population.
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