Multisensory environments (MSE) in dementia care : the role of design : an interdisciplinary research collaboration between design and health care

An interdisciplinary research project has evolved from a broad consideration in respect to the rising number of people with dementia, rapid growth of an ageing population, over-prescribed use of antipsychotic medication and the need for cost-effective interventions supporting dementia care. Within this context, this research aims to explore the quality of multisensory stimulation offered in homes for residents living with dementia, focusing on Multisensory Environments (MSEs) in particular, and whether design can improve such experiences and maximise therapeutic benefits. MSEs are widely used in dementia care as a meaningful leisure activity and a therapeutic intervention. However, evidence suggests that they often fail to address the specific needs of people with dementia due to inadequate design and poor facilitation. Also, little research has considered the impact of MSE design on engagement and wellbeing. Hence, this research investigates the aesthetic and functional qualities of MSEs currently provided, such as material, colour, imagery, spatial set-up, usability, and accessibility, with the aim of establishing reasons for success and failure. The research includes learning about the approach and challenges care home staff face in their daily work and exploring how they can be supported in providing improved care. Care homes have been visited to examine and record how they facilitate MSEs, applying ethnographic methods that incorporate structured interviews with care staff and managers, observations of sensory sessions and a focus group workshop with care home staff. The results of this study will inform the development of design recommendations for MSEs for people with dementia, potentially maximising the benefits for residents through improved design providing a person-centred experience. At the time of the conference the project was in its early stage and only preliminary results were available. The paper therefore focuses on the research context and discusses the process of identifying and setting the problem and research question. This research, a collaboration between researchers from design and occupational therapy, is funded by the Arts and Humanity Research Council (AHRC) and supported by Care UK

How to make a sensory room for people living with dementia: a guide book

This guide offers advice on best practice regarding the engagement of residents living with dementia in daily activities that support their health and sense of wellbeing. Our aim is to equip carers, care workers and staff in care homes with ideas and materials in order to provide multi sensory spaces and stimulation appropriate for people living with dementia (in particular mid and late stages). We also offer guidance on the design of sensory spaces to meet the specific needs and preferences of individuals, their families and care homes

“How to make a Sensory Room for people living with dementia” – developing design guidance for health care practitioners

This paper reports the results of a recent study funded by the AHRC into the current provision of multisensory stimulation for people with dementia living in care homes, in particular the design of multisensory spaces - often referred to as ‘Sensory Rooms’ or ‘Multisensory Environments’ (MSEs). The investigation aimed to establish new knowledge from which coherent, user-centred design solutions supporting improved dementia care could be developed. Previous research has shown that the use of Sensory Rooms in dementia care has beneficial effects as a resource for meaningful engagement and they are established in many UK care homes. However, evidence suggests that they often fail to benefit the people with dementia resulting in staff becoming discouraged, perceiving the space of little value, and subsequently becoming unused. Sixteen care homes with some type of sensory space were recruited for a study. Data were collected using ethnographic methods including semi structured interviews with 32 care home staff and observations were made from the perspective of the person with dementia. Results suggested that existing Sensory Rooms had inadequate design, inappropriate set-up and poor facilitation by staff. A focus group workshop was conducted further exploring design and methods of multisensory stimulation with staff from 4 care homes. Based on these results, design criteria and recommendations were identified that can potentially improve accessibility for people with dementia, and published in a Guide book “How to make a Sensory Room for people living with dementia” (accessible online ). The Guide is a tool for health care practitioners, care home staff and carers enabling them to create a sensory environment that is appropriate for residents with dementia and their families

Sensory design for dementia care - the benefits of textiles

The journal article discusses the role of textiles in facilitating sensory enriched environments and meaningful occupation for people living with dementia. It is based on recent interdisciplinary research, a collaboration between design and healthcare, that investigated the provision of multi-sensory experience for people with dementia living in care-homes, particularly the quality and design of Multi-Sensory Environments (MSEs). Through an ethnographic study this investigation unveiled significant design deficiencies of existing facilities in UK care-homes and profound lack of information amongst care professionals and care givers. The absence of textiles and its appropriate use was noticeable. From this research essential design criteria emerged which informed the development of initial design recommendations for setting up MSEs tailored to the specific needs of people living with dementia and their carers. Further, the article discusses the benefits of employing textiles in dementia care – either for occupation or within the environment. Sensorial qualities and psychological benefits are highlighted as well as the potential of applying advanced textile technologies. Further work is suggested regarding three aspects: proof-of-concept and prototyping implementing the developed design recommendations for sensory enhanced spaces to establish more evidence from end-user feedback as requested by stakeholders; investigating ways of how to achieve sustainable impact through adapting participatory design methods and conveying design skills and knowledge to care practitioners; exploring the potential of textiles and advanced textile technology for design for dementia

Introducing a designing attitude in dementia care

This paper discusses how design can enhance the wellbeing of people living with dementia, their carers and caregivers. It refers to two examples of recent design research that focus on supporting the provision and facilitation of appropriate activities and environments for individuals with advanced dementia in residential care. The projects use interdisciplinary co-design approaches and ethnographic methods to establish new knowledge and develop user-centred design solutions to improve care. Questioning how to REDO design research to create a sustainable impact on the lives of those affected by dementia, the paper concludes that active involvement and continued participation of users, carers and care practitioners in the design process is essential. Training on design skills and making will enable carers to adapt a designing attitude. Exploring how such training can be delivered is a chance for the design community, in collaboration with experts from health care, to take the lead in solving this problem

Novel pathogenic COX20 variants causing dysarthria, ataxia, and sensory neuropathy.

COX20/FAM36A encodes a mitochondrial complex IV assembly factor important for COX2 activation. Only one homozygous COX20 missense mutation has been previously described in two separate consanguineous families. We report four subjects with features that include childhood hypotonia, areflexia, ataxia, dysarthria, dystonia, and sensory neuropathy. Exome sequencing in all four subjects identified the same novel COX20 variants. One variant affected the splice donor site of intron-one (c.41A>G), while the other variant (c.157+3G>C) affected the splice donor site of intron-two. cDNA and protein analysis indicated that no full-length cDNA or protein was generated. These subjects expand the phenotype associated with COX20 deficiency

Evaluation of Variation in the Performance of GFR Slope as a Surrogate End Point for Kidney Failure in Clinical Trials that Differ by Severity of CKD

BACKGROUND: The GFR slope has been evaluated as a surrogate end point for kidney failure in meta-analyses on a broad collection of randomized controlled trials (RCTs) in CKD. These analyses evaluate how accurately a treatment effect on GFR slope predicts a treatment effect on kidney failure. We sought to determine whether severity of CKD in the patient population modifies the performance of GFR slope. METHODS: We performed Bayesian meta-regression analyses on 66 CKD RCTs to evaluate associations between effects on GFR slope (the chronic slope and the total slope over 3 years, expressed as mean differences in ml/min per 1.73 m2/yr) and those of the clinical end point (doubling of serum creatinine, GFR &lt;15 ml/min per 1.73 m2, or kidney failure, expressed as a log-hazard ratio), where models allow interaction with variables defining disease severity. We evaluated three measures (baseline GFR in 10 ml/min per 1.73 m2, baseline urine albumin-to-creatinine ratio [UACR] per doubling in mg/g, and CKD progression rate defined as the control arm chronic slope, in ml/min per 1.73 m2/yr) and defined strong evidence for modification when 95% posterior credible intervals for interaction terms excluded zero. RESULTS: There was no evidence for modification by disease severity when evaluating 3-year total slope (95% credible intervals for the interaction slope: baseline GFR [-0.05 to 0.03]; baseline UACR [-0.02 to 0.04]; CKD progression rate [-0.07 to 0.02]). There was strong evidence for modification in evaluations of chronic slope (95% credible intervals: baseline GFR [0.02 to 0.11]; baseline UACR [-0.11 to -0.02]; CKD progression rate [0.01 to 0.15]). CONCLUSIONS: These analyses indicate consistency of the performance of total slope over 3 years, which provides further evidence for its validity as a surrogate end point in RCTs representing varied CKD populations.</p

Change in Albuminuria and GFR Slope as Joint Surrogate End Points for Kidney Failure:Implications for Phase 2 Clinical Trials in CKD

Significance Statement: Changes in albuminuria and GFR slope are individually used as surrogate end points in clinical trials of CKD progression, and studies have demonstrated that each is associated with treatment effects on clinical end points. In this study, the authors sought to develop a conceptual framework that combines both surrogate end points to better predict treatment effects on clinical end points in Phase 2 trials. The results demonstrate that information from the combined treatment effects on albuminuria and GFR slope improves the prediction of treatment effects on the clinical end point for Phase 2 trials with sample sizes between 100 and 200 patients and duration of follow-up ranging from 1 to 2 years. These findings may help inform design of clinical trials for interventions aimed at slowing CKD progression.Background Changes in log urinary albumin-To-creatinine ratio (UACR) and GFR slope are individually used as surrogate end points in clinical trials of CKD progression. Whether combining these surrogate end points might strengthen inferences about clinical benefit is unknown.Methods Using Bayesian meta-regressions across 41 randomized trials of CKD progression, we characterized the combined relationship between the treatment effects on the clinical end point (sustained doubling of serum creatinine, GFR &lt;15 ml/min per 1.73 m2, or kidney failure) and treatment effects on UACR change and chronic GFR slope after 3 months. We applied the results to the design of Phase 2 trials on the basis of UACR change and chronic GFR slope in combination.Results Treatment effects on the clinical end point were strongly associated with the combination of treatment effects on UACR change and chronic slope. The posterior median meta-regression coefficients for treatment effects were-0.41 (95% Bayesian Credible Interval,-0.64 to-0.17) per 1 ml/min per 1.73 m2per year for the treatment effect on GFR slope and-0.06 (95% Bayesian Credible Interval,-0.90 to 0.77) for the treatment effect on UACR change. The predicted probability of clinical benefit when considering both surrogates was determined primarily by estimated treatment effects on UACR when sample size was small (approximately 60 patients per treatment arm) and follow-up brief (approximately 1 year), with the importance of GFR slope increasing for larger sample sizes and longer follow-up.Conclusions In Phase 2 trials of CKD with sample sizes of 100-200 patients per arm and follow-up between 1 and 2 years, combining information from treatment effects on UACR change and GFR slope improved the prediction of treatment effects on clinical end points.</p

A meta-analysis of GFR slope as a surrogate endpoint for kidney failure

Glomerular filtration rate (GFR) decline is causally associated with kidney failure and is a candidate surrogate endpoint for clinical trials of chronic kidney disease (CKD) progression. Analyses across a diverse spectrum of interventions and populations is required for acceptance of GFR decline as an endpoint. In an analysis of individual participant data, for each of 66 studies (total of 186,312 participants), we estimated treatment effects on the total GFR slope, computed from baseline to 3 years, and chronic slope, starting at 3 months after randomization, and on the clinical endpoint (doubling of serum creatinine, GFR