Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness

Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness is the International Conference 2019 of the MinD Consortium, the DRS Special Interest Group on Behaviour Change and the DRS Special Interest Group on Wellbeing and Happiness, hosted by the Technische Universität Dresden, in Dresden, Germany. The conference proceedings provide trans-disciplinary contributions for researchers, practitioners, end-users and policy makers from the design and health care professions in terms of new findings, approaches and methods for using design to improve dementia care and to support people with dementia and their carers. The conference has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 691001, and from the DFG German Research Foundation

Impact of Underlying Depression on Treatment of Neuropsychiatric Symptoms in Older Adults with Dementia

This article examines the moderating effect of depression on interdisciplinary treatment approaches for behaviors in dementia. A secondary analysis of data collected on tailored treatment of 105 long-term care residents with dementia found a significant relationship between treatment and passivity (p < 0.001), treatment and agitation (p = 0.001), and the mediating effect of change in passivity on change in agitation (p < 0.001). The moderating effect of depression was found as a significant factor. For participants with depression and agitation, a significant change in passive behavior was related to significant change in agitated behavior. Thus, by focusing treatment on passivity, both types of neuropsychiatric behaviors improved. The implications of thoroughly assessing not only a behavior problem such as agitation but also other neuropsychiatric symptoms that complicate the delivery of the intervention are discussed

Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia's experiences.

Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one's way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers, structured in a hierarchical manner that contributes to social exclusion if not addressed. This study based on focus groups with people with dementia and their family members conducted in Dorset, UK illustrates a range of barriers to leisure participation. How to create or maintain leisure opportunities for those living with dementia where households affected by dementia do not adopt avoidance behaviour, compounding a sense of isolation and exclusion is a challenge. Leisure can be an important strategy framed as a form of resistance to the social disabilities experienced by those living with dementia and it is potentially isolating impact

The Ethical Implications of Personal Health Monitoring

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations

Indoor Nature Interventions for Health and Wellbeing of Older Adults in Residential Settings: A Systematic Review.

This is the author accepted manuscript. The final version is available from Oxford University Press via the DOI in this record.BACKGROUND AND OBJECTIVES: Having contact with nature can be beneficial for health and wellbeing, but many older adults face barriers with getting outdoors. We conducted a systematic review of quantitative studies on health and wellbeing impacts of indoor forms of nature (both real and simulated/artificial), for older adults in residential settings. RESEARCH DESIGN AND METHODS: Search terms relating to older adults and indoor nature were run in 13 scientific databases (MEDLINE, CINAHL, AgeLine, Environment Complete, AMED, PsychINFO, EMBASE, HMIC, PsychARTICLES, Global Health, Web of Knowledge, Dissertations and Theses Global, and ASSIA). We also pursued grey literature, global clinical trials registries, and a range of supplementary methods. RESULTS: Of 6,131 articles screened against eligibility criteria, 26 studies were accepted into the review, and were quality-appraised using the Effective Public Health Practice Project (EPHPP) tool. The participants were 930 adults aged over 60. Nature interventions and health/wellbeing outcomes were heterogeneous, which necessitated a narrative synthesis. The evidence base was generally weak, with 18 of 26 studies having a high risk of bias. However, several higher-quality studies found indoor gardening and horticulture programs were effective for cognition, psychological wellbeing, social outcomes, and life satisfaction. DISCUSSION AND IMPLICATIONS: There is inconsistent evidence that indoor nature exposures are beneficial for older care residents. We expect that successful interventions were, at least partly, facilitating social interaction, supporting feelings of autonomy/control, and promoting skill development, that is, factors not necessarily associated with nature per se. Higher-quality studies with improved reporting standards are needed to further elucidate these mechanisms.European CommissionNational Institute for Health Research (NIHR

Patterns of behavior in Alzheimer units: examining the role of the physical environment interface

Includes bibliographical references.2015 Summer.The purpose of this study was to examine the relationship among the physical environment and behaviors within individuals with Alzheimer’s in a Special Care Unit (SCU). The SCU was located in a skilled nursing facility in Fort Collins, CO providing care for individuals with mid to late stage dementia, including individuals with Alzheimer’s. Of interest in this research study was the impact of this relationship to influence positive, and negative, behaviors contributing to positive quality of life, or positive behaviors supported by one’s physical surroundings creating a living environment directed at acknowledging the person’s life experiences, opportunities for choice and decision, and activities replicating prior home/work activities for residents with Alzheimer’s or dementia. This study sought to enhance the existing body of knowledge about environmental impacts on behavior in care for individuals with Alzheimer’s. Day, Carreon, and Stump (2000) suggested design of the physical environment should be therapeutic, promoting well-being and functionality for individuals with Alzheimer’s or dementia. The research design was an instrumental case study investigating issues surrounding a specific phenomenon (i.e., the relationship of environment and behavior in the SCU) and collected both qualitative and quantitative data. Data collection began with a physical inventory documenting the environment through photographs noting furniture locations, lighting, colors, contrast, materials and finishes, and wear within the space. Observational data were collected over a 10 week consecutive period, during non-randomized times to accommodate the facility (three times a week) for 30 minutes each. Finally, the e-Survey with qualitative and quantifiable data obtained from staff (ns = 6) perceptions of the physical environment and residents’ (nr = 9) behaviors. Findings suggested staff behavior reinforcing a medical model of care in contrast to contemporary approaches providing person-centered care; staff perceptions of communications differed from observed instances of communication; resident wandering and communication were the two most frequently occurring behaviors recorded during observations. Instances where the physical environment impacted resident behaviors considered: a flooring transition strip instigated frustration by a resident in a wheelchair unable to move over the height difference; areas with greater levels of lighting, whether natural or artificial, appeared to promote greater socialization; and furniture placement and corridor planning in the unit shaped the pathways for movement through the unit. Two specific behaviors, not identified in the empirical literature, were found in the study to potentially contribute to a positive quality of life for residents with Alzheimer’s: physical touch and cleaning. Observed body language and facial expressions, of residents, during these behaviors suggest possible connection supporting in individual’s positive quality of life. The study revealed positive quality of life and person-centered care to be interlaced and not separate entities due to their concentration on personalization of care and establishing a connection to the individual’s past experiences

De concentv amisso qvaerendo: An investigation into the relative benefits of three different types of ambient music on the observed agitated behaviour and quality of life of dementia sufferers in residential aged care facilities

There is an increasing body of research evidence to support the use of music as a therapeutic modality in reducing the agitated behaviour frequently associated with late-stage dementia. Although much of this evidence suggests that music interventions are most effective when they are “individualized”, this type of intervention is often difficult to implement in large, busy, aged care facilities where residents may be located together in communal areas during the day. The challenge therefore is to try and identify a particular musical genre which, when played as “ambient” or “background” music, demonstrates a consistent capacity to reduce agitated behaviour in late-stage dementia across resident populations in multiple facilities. This study was designed to test the comparative utility of three different types of background music identified in the existing research literature as being of possible benefit in this context. These three types of music were: gentle classical music, familiar music and baroque music. Using a sample of 65 older people with late-stage dementia living in a total of eight residential aged care facilities, this quasi-experimental study used quantitative measures to assess a specific range of agitated behaviours over a one week intervention period. The specific agitated behaviours were documented using the Scale for the Observation of Agitation in Persons with Dementia (SOAP-D) scale (Hurley, Volicer, Camberg, Ashley, Woods, Odenheimer, Ooi, McIntyre, & Mahoney, 1999). In addition, the Quality of Life in Alzheimer’s Disease (QoL-AD) tool (Logsdon, 1999) was used to collect collateral information from family members or experienced care staff at each of the participating facilities about whether they perceived that the playing of music exerted any influence on the quality of life of participants. Participants were randomly assigned to one of five experimental subgroups of equal size. Participants in three of the five groups received exposure to audio recordings of music. Participants in one of the two remaining sub-groups were exposed to a non-musical intervention (audio recordings of storybooks) at the same time of day as the participants in the three music groups. Data relating to behaviour and perceived quality of life were recorded in the same manner for this group. The final group of participants acted as the control group for the study. Quantitative data were collected in the same manner for this group: however, they were exposed to no intervention. In addition, a series of structured interviews was undertaken with experienced care providers at each of the participating residential aged care facilities. The purpose of this procedure was to determine whether the experiences and subjective opinions of staff regarding the utility of music as an intervention to settle agitated behaviour in late-stage dementia and improve quality of life were consistent with the observational data recorded using the SOAP-D scale in conjunction with the proxy-rated QoL-AD scale. Results of the study indicated that overall levels of agitated behaviour were less within the three groups exposed to music compared with the nonmusic intervention group and the control. However, perceived quality of life was not measurably improved in any of the three music intervention groups. This study supports the continued use of music as a therapeutic intervention in the management of maladaptive behaviour associated with late-stage dementia, although the results do not support the preferential use of any of the three selected music forms

A Tailored Smart Home for Dementia Care

Dementia refers to a group of chronic conditions that cause the permanent and gradual cognitive decline. Therefore, a Person with Dementia (PwD) requires constant care from various classes of caregivers. The care costs of PwDs bear a tremendous burden on healthcare systems around the world. It is commonly accepted that utilising Smart Homes (SH), as an instance of Ambient Assisted Living (AAL) technologies, can facilitate the care, and consequently improve the quality of PwDs well-being. Nevertheless, most of the existing platforms assume dementia care is a straight application of standard SH technology without accommodating the specific requirements of dementia care. A consequence of this approach is the inadequacy and unacceptability of generic SH systems in the context of dementia care. Contrary to most of the existing SH systems proposed for dementia care, this study considers the specific requirements of PwDs and their care circle in all development steps of an SH. In addition, it investigates how utilising novel design and computing approaches can enhance the quality of SHs for dementia care. To do so, the requirements of dementia care stakeholders are collected, analysed and reflected on in an SH system design. Extensions and adaptation of existing frameworks and technologies are proposed to implement a prototype based on the resulting design. Finally, thorough evaluations and validation of the prototype are carried out. The evaluations by a group of stakeholders show the suitability of the proposed methodology and consequently the resulting prototypes for reducing dementia care difficulties as well as its potential for deployment in the real-world environment