Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performa...

Personhood in dementia care: Developing a research agenda for broadening the vision

The ‘Older People’s Exercise intervention in Residential and nursing Accommodation’ (OPERA) cluster randomised trial evaluated the impact of training for care home staff together with twice-weekly, physiotherapist-led exercise classes on depressive symptoms in care home residents, but found no effect. We report a process evaluation exploring potential explanations for the lack of effect. The OPERA trial included over 1,000 residents in 78 care homes in the UK. We used a mixed methods approach including quantitative data collected from all homes. In eight case study homes, we carried out repeated periods of observation and interviews with residents, care staff and managers. At the end of the intervention, we held focus groups with OPERA research staff. We reported our first findings before the trial outcome was known. Homes showed large variations in activity at baseline and throughout the trial. Overall attendance rate at the group exercise sessions was low (50%). We considered two issues that might explain the negative outcome: whether the intervention changed the culture of the homes, and whether the residents engaged with the intervention. We found low levels of staff training, few home champions for the intervention and a culture that prioritised protecting residents from harm over encouraging activity. The trial team delivered 3,191 exercise groups but only 36% of participants attended at least 1 group per week and depressed residents attended significantly fewer groups than those who were not depressed. Residents were very frail and therefore most groups only included seated exercises. The intervention did not change the culture of the homes and, in the case study homes, activity levels did not change outside the exercise groups. Residents did not engage in the exercise groups at a sufficient level, and this was particularly true for those with depressive symptoms at baseline. The physical and mental frailty of care home residents may make it impossible to deliver a sufficiently intense exercise intervention to impact on depressive symptoms.

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Whole home exercise intervention for depression in older care home residents (the OPERA study): a process evaluation

Background: A large and growing number of people with dementia are being cared for in long-term care. The empirical literature on the design of environments for people with dementia contains findings that can be helpful in the design of these environments. A schema developed by Marshall in 2001 provides a means of reviewing the literature against a set of recommendations. The aims of this paper are to assess the strength of the evidence for these recommendations and to identify those recommendations that could be used as the basis for guidelines to assist in the design of long term care facilities for people with dementia. Methods: The literature was searched for articles published after 1980, evaluating an intervention utilizing the physical environment, focused on the care of people with dementia and incorporating a control group, pre-test-post-test, cross sectional or survey design. A total of 156 articles were identified as relevant and subjected to an evaluation of their methodological strength. Of these, 57 articles were identified as being sufficiently strong to be reviewed. Results: Designers may confidently use unobtrusive safety measures; vary ambience, size and shape of spaces; provide single rooms; maximize visual access; and control levels of stimulation. There is less agreement on the usefulness of signage, homelikeness, provision for engagement in ordinary activities, small size and the provision of outside space. Conclusions: There is sufficient evidence available to come to a consensus on guiding principles for the design of long term environments for people with dementia.

/pdf/long-term-care-for-people-with-dementia-environmental-design-25x0txebzq.pdf

Long-term care for people with dementia: environmental design guidelines.

Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

/pdf/living-well-with-dementia-a-systematic-review-and-35wn0o4234.pdf

Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia.

In Western societies, the vast majority of people with dementia live at home and wish to remain doing so for as long as possible. Aging in place can be facilitated through a variety of environmental interventions, including home modifications. This article provides an overview of existing design principles and design goals, and environmental interventions implemented at home, based on literature study and additional focus group sessions. There is a multitude of design principles, design goals, and environmental interventions available to assist with activities of daily living and functions, although few systematic studies have been conducted on the efficacy of these goals and interventions. The own home seems to be a largely ignored territory in research and government policies, which implies that many problems concerning aging in place and environmental interventions for dementia are not adequately dealt with.

https://journals.sagepub.com/doi/pdf/10.1177/1533317509358885

Environmental interventions and the design of homes for older adults with dementia: an overview.

Older people living in residential and nursing care homes spend a large proportion of their time within the boundaries of the home, and may depend on the environment to compensate for their physical or cognitive frailties. Regulations and guidelines on the design of care buildings have accumulated over time with little knowledge of their impact on the quality of life of building users. The Design in Caring Environments Study (DICE ) collected cross-sectional data on building design and quality of life in 38 care homes in and near Sheffield, Yorkshire. Quality of life was assessed using methods which included all residents regardless of their frailty, and staff morale was also assessed. The physical environment was measured on 11 user-related domains using a new tool, the Sheffield Care Environment Assessment Matrix (SCEAM). Significant positive associations were found between several aspects of the built environment and the residents’ quality of life. There was evidence that a focus on safety and health requirements could be creating risk-averse environments which act against quality of life, particularly for the least frail residents. Staff morale was associated with attributes of a noninstitutional environment for residents rather than with the facilities provided for the staff. The new tool for assessing building design has potential applications in further research and for care providers.

/pdf/quality-of-life-and-building-design-in-residential-and-2m22m5ue8n.pdf

Quality of life and building design in residential and nursing homes for older people

Guidelines for the design of lighting in residential buildings used by people with dementia are derived from the results of two research projects and a literature review. General guidance on lighti...

Lighting for people with dementia

Two projects in the EQUAL programme explore aspects of the influence of building design on the quality of life of people with dementia Design in Caring Environments (DICE) examined the quality of life of people in residential care homes in relation to building design features INDEPENDENT (Investigating Enabling Environments for People with Dementia) is a current project with the aim of developing technologies to enhance quality of life by supporting enjoyable activities One aspect of INDEPENDENT is an exploration of the interaction between spatial settings and meaningful activity, to highlight factors that support and enable activity and to identify barriers Findings from both projects suggest that a more creative approach to the management of buildings would enhance the well‐being of residents; under‐use of facilities is common Meaningful space that supports activity is therapeutic but spaces that give confused messages are common in buildings used by older people Tools to evaluate buildings have a potential role in the long‐term management of facilities to help identify underused spaces, spatial confusion and barriers to activity Quality of life was shown to be poorer in buildings that prioritise safety and health; buildings that support activity positively by providing good assistive devices, giving people control of their environment and affording good links with the community have a positive association with well‐being

What has architecture got to do with dementia care?: Explorations of the relationship between quality of life and building design in two EQUAL projects

The study objective was to explore the views of residents and relatives concerning the physical design of extra-care housing. Five focus groups were conducted with residents in four extra-care schemes in England. One focus group was carried out with relatives of residents from a fifth scheme. Schemes were purposively sampled to represent size, type, and resident tenure. Data were analysed thematically using NVivo 8. Two over-arching themes emerged from the data: how the building supports the lifestyle and how the building design affects usability. Provision of activities and access to amenities were more restrictive for residents with disabilities. Independent living was compromised by building elements that did not take account of reduced physical ability. Other barriers to independence included poor kitchen design and problems doing laundry. Movement around the schemes was difficult and standards of space and storage provision were inadequate. The buildings were too hot, too brightly lit and poorly ventilated. Accessible external areas enabled residents to connect with the outside world. The study concluded that, while the design of extra-care housing meets the needs of residents who are relatively fit and healthy, those with physical frailties and/or cognitive impairment can find the building restrictive resulting in marginalisation. Design across the dependency spectrum is key in meeting the needs of residents. Inclusive, flexible design is required to benefit residents who are ageing in situ and have varying care needs.

https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S0144686X11000791

Does the design of extra-care housing meet the needs of the residents? A focus group study

One result of a policy in the UK of providing support for older people to remain in their own homes has been an increase in frailty in the residents of care homes, many of whom suffer from dementia. The importance of enabling these residents to enjoy a good quality of life is recognized. Results from two research projects show that the physical environment can affect a person's quality of life, but it is one of a number of interrelated factors. Design in Caring Environments (DICE) and INDEPENDENT, both funded by the EPSRC EQUAL programme, use different methods to examine the impact of design on quality of life. The tools and methods developed are discussed, as are the implications of the findings for policy and practice. The Sheffield Care Environment Assessment Matrix (SCEAM) is a method for recording the characteristics and use of a care home building. The effects of the building on well-being can be unpicked by a multilevel analysis of building data against measures of quality of life. Used in a study ...

Judith Torrington

Papers

Quality of life and building design in residential and nursing homes for older people

Lighting for people with dementia

What has architecture got to do with dementia care?: Explorations of the relationship between quality of life and building design in two EQUAL projects

Does the design of extra-care housing meet the needs of the residents? A focus group study

Evaluating quality of life in residential care buildings