Margaret Calkins, PhD, EDAC, FGSA

IDEAS

Abstract

The almost50-year history of evolution of specialized shared residential care for individuals living with Alzheimer’s disease or other dementias will be traced in this paper. The most commonly cited theories and models about the relationship between individuals experiencing progressive cognitive deterioration and the settings they live in will be explored, followed by a description of the literature in the form of both major design guides and reviews of the research literature, followed by a very brief exploration of the most common environmental assessment tools that are in use. Finally, the history of key aspects of the design of residential settings, focusing primarily on nursing homes and assisted living communities in the US, will be discussed.

Introduction

Alois Alzheimer first presented a report on “A peculiar severe disease process of the cerebral cortex” in 1906 to the 37th Meeting of South-West German Psychiatrists in Tubingen(Alzheimer, 1987). He described a 50-year-old woman whom he had followed from her admission for paranoia, progressive sleep and memory disturbance, aggression, and confusion, until her death 5 years later. He later followed this up with several additional interesting cases with similar pathology. What is of interest here is that she only came to Dr. Alzheimer’s attention because she was so young (50), and not yet expected to show signs of “senility”. In the early part of the twentieth century, it was expected that “old people” might normally lose their cognitive faculties—this was considered if not expected then certainly common enough not to need to be studied. But once it was discovered in a younger person, then it became medically interesting—thus reflecting the pervasive (and still prevalent) ageist bias that is common in many cultures. Over the subsequent 65 years, medical research continued, but attention to what could be done to help in caring for these individuals on a daily basis was seldom explored.

Theoretical Frameworks

This changed with the pioneering work of Dr. M. Powell Lawton, a psychologist who was deeply interested in the quality of life of older adults. Lawton was prolific in his writing and research, and provided some of the most profound theories, models and frameworks for understanding the complex interwoven set of factors that influence positive or successful aging. The ecological model of aging, also referred to as the Competence-Press model, developed with Lucille Nahemow (M.P. Lawton & Nahemow, 1973) is probably the most cited theoretical framework. It is based on the work of Kurt Lewin (Lewin, 1951) who formalized the equation B=f (P, E), or that behavior is a function of the person and the environment. Lawton and Nahemow further developed this framework by better defining the individual as a set of competencies in the domains of biological health, cognitive skill, sensorimotor functioning, and ego strength, and the environment as a personal environment, group environment, suprapersonal environment, social environment, and physical environment. They also modified to the equation, arguing that there is a unique interaction of a person within a given environment, thus changing the equation to B=f (P, E (PxE))(M.P. Calkins, 2018). While this model is not dementia-specific, it is dementia-inclusive and has been widely applied in work on environments for people living with dementia.

The first dementia-specific model is the Progressive-Lowered Stress Threshold (PLST) by Hall and Buckwalter (G. Hall & Buckwalter, 1987). Based on the competence-press model, the PLST posits that as an individual is exposed to environmental press over the course of the day, it builds, and without relief, will exceed the person’s stress threshold, which results in significant negative behavioral/emotional distress (sometimes referred to as a catastrophic reaction). Relief comes in the form of reducing the demand or press—e.g., reducing environmental stimulation. The main difference between the Competence-Press model and the PLST is that insufficient press is associated maladaptive behaviors in the former, while the latter argues that lower press, which keeps individuals below their stress threshold, is always better. This led to the development of several “low-stimulus units” which, unfortunately were never seriously evaluated.

There are several other theories that have been cited in relation to environments for individuals living with dementia, though they are much less commonly used. These include Kahana’s Person-Environment Fit (Kahana, 1981) which suggests people are most likely to seek and be found in environments that are congruent with their need. If the fit isn’t congruent, either the person leaves, of if that isn’t possible, the individual must function in a dissonant milieu and discomfort will follow (Kahana, Liang, & Felton, 1980). Goodness of fit is seen as an antecedent of well-being rather than synonymous with it. Another model is the “behavior-constraint approach” (Edgerton & Richie, 2010). This is commonly used in environmental psychology research and is concerned with a person's perceived control over his/her environment. Individuals may experience negative affect and discomfort if they perceive that they are losing control over their environment as a result of a constraint being present; an example of this for people living with dementia are many and varied, and would include the inability to find a particular room or location due to a lack of visual access because of the presence of doors without windows (Edgerton & Richie, 2010).

What is perhaps unique about the work in this arena is the early focus on guiding principles, or therapeutic goals, as they were originally referred to. Starting with the work of Calkins (M. Calkins, 1988)and supplemented by several others(Cohen & Weisman, 1991; M. P. Lawton, Fulcomer, & Kleban, 1984; Regnier, 2002; P.D. Sloane, Weisman, Calkins, Teresi, & Ramirez, 1993; Zeisel, Hyde, & Levkoff, 1994). Several sets of largely overlapping principles were developed, including: orientation, social engagement, functional independence, and homelike/non-institutional character. For more details on various sets of therapeutic goals, see Calkins (1991).These principles were used to describe the features of an environment that would be good or supportive of individuals living with dementia. They are also the basis of one ofthe more commonly used assessment protocols, the Professional Environmental Assessment Protocol (PEAP) described in more detail later in this article. It is worth noting that considerably less attention has been focused on aspects of the environment that would support care partners—either professional or family, though this is beginning to change (van Hoof, Kort, van Waarde, & Blom, 2010).

Literature

In parallel with the development of these therapeutic goals was a gradual burgeoning of literature on the design of environments for people living with dementia, as well as research studies to evaluate the impact of the environment on residents living with dementia. It is not possible to try to categorize or summarize the full body of work in this paper, so only some of the more influential publications will be cited. In addition to Lawton (M.P. Lawton, 1989; M. P. Lawton, 2001), another early contributor to the field was Hiatt (L. Hiatt, 1981, 1985, 1987, 1988, 1994; L. G. Hiatt, 1991). As an environment-gerontology consultant, she worked with many clients, talked with staff, observed residents and noted how they responded to different environmental characteristics and features.

The first design guide for individuals living with dementia is Calkins’ Design for Dementia: Planning Environments for the Elderly and the Confused (M. Calkins, 1988). This was followed shortly thereafter by Holding Onto Home (Cohen & Weisman, 1991). Both these guides were deeply grounded in therapeutic goals, discussed above, as a way of structuring out understanding of how the environment influences—positively or negatively—people living with dementia. Three slightly later design guides were Brawley’s Designing for Alzheimer’s Disease: Strategies for Better Care Environments(E. Brawley, 1997; E. C. Brawley, 2006), Warner’s The Complete Guide to Alzheimer’s Proofing Your Home (Warner, 1998) which is one of the few design guides that addressed homes in the community, and Designing a Better Day (Moore, Geboy, Weisman, & Mleziva, 2001) which focused on day care settings.

There were also a number of different case study-based publications, which systematically evaluated and compared different dementia care settings. The earliest was Contemporary Environments for People with Dementia (Cohen & Day, 1994), followed by Design for Dementia(Judd, Marshall, & Phippen, 1998) which was published in Australia and examined sites in Australia and Europe. There have also been some design guides that have explored the design of outdoor spaces for individuals living with dementia (Chalfont, 2008; Rodeik, 1999, 2002; Rodiek & Schwarz, 2006).

Concurrent with the development of the various design guides was an expansion of research into the impact of designed environment on people living with dementia. The research took several forms, some of which attempted to examine the impact of the whole environment (typically a post-occupancy evaluation or pre-post study after relocation to a new setting) while others examined the impact of a single environmental element (e.g., highly visible bathrooms, signage and cues to find one’s bedroom). The first such study was a post-occupancy evaluation in, appropriately, the first dementia-specific designed setting, the Weiss Pavilion at the Philadelphia Geriatric Institute(M. P. Lawton et al., 1984). More than a decade would pass before another setting was studied extensively, the Dolan Center at Heather Hill, which was specifically designed with the intent of being able to modify discrete elements of the environment to study their impact on the behavior and functioning of the residents(K. Namazi et al., 1991; K.H. Namazi & Johnson, 1991; K.H. Namazi & B.D. Johnson, 1992a, 1992b; K.H. Namazi & B.D. Johnson, 1992; K.H. Namazi & B.D. Johnson, 1992c, 1992d). These landmark studies demonstrated the value of personalized cues at bedroom entrances to help residents identify their own rooms; the positive impact of direct visibility to the toilet in the bedroom (high contrast and highly visible) on maintaining continence; and the increase in distress shown by residents when the doors to the outside were locked, among other results. It also served as a model for clearly articulating hypotheses in a building design to allow more detailed environmental studies to take place. Several other projects conducted post-occupancy evaluations (Hoglund, Dimotta, Ledewitz, & Saxton, 1994)(Broughton & McDonnell, 1996; Rule, Milke, & Dobbs, 1992; P.D. Sloane, Lindeman, Phillips, Mortiz, & Koch, 1995; Zarit, Zarit, & Rosenberg-Thompson, 1990)

It is not feasible to summarize the whole body of research in this paper, so the focus will be on several excellent literature reviews that have been published. The first comprehensive review of research literature on environments for people living with dementia was by Day and colleagues in 2000(Day, Carreon, & Stump, 2000). They identified 71 studies that met their criteria, and grouped them by planning principles (e.g., segregation vs integration, group size), general attributes of the environment, building organization and specific rooms and activity spaces.Another significant literature review was in 2014 by Marquardt and colleagues(Marquardt, 2014), who identified 169 studies. Their review organized the references in a matrix of environmental features (SCU/non-SCU, small scale environment, low social density, building layout) against outcomes of interest (behavior, cognition, function, wellbeing, social abilities, orientation, care outcomes). Chaudhury and colleagues (Chaudhury, 2017) identified 94 studies and nine literature reviews, which they organized by space (dining area, bathing area, outdoor area, but no kitchen, living room or bedroom sections) and environmental characteristic (unit size, spatial layout and orientation cues, homelike/institutional character, sensory stimulation). They then linked the studies to a set of therapeutic goals (maximize safety and security, maximize awareness and orientation, support functional abilities, facilitation of social contact, provision of privacy, opportunities for personal control, regulation and quality of stimulation).

Environmental Assessment Tools

As mentioned above, the body of research reflects very different approaches to how to study the impact of the environment on individuals living with dementia. Some studies examine the impact of single feature, while others encompass the whole setting, as in relocation or site comparison studies. The former studies primarily rely on a description of the environment (though at times even that is quite limited, as in sleep research that doesn’t even track whether the person lives in a private or shared room, which might be an important factor to sleep quality). Studies that focus on a single new setting also primarily use descriptive approaches, with some being more descriptive and objective than others. It is worth noting that a common conclusion in the literature reviews is that the quality of the description/assessment of the environment is low. It is primarily with multi-site comparison studies that validated environmental assessment tools are developed and used.

The first validated tool was the Therapeutic Environment Screening Scale(P. D. Sloane & Mathew, 1990), which has gone through several developmental iterations, and is now comprised of the TESS 2+ and the Special Care Unit Environmental Quality Scale (SCUEQS) sub-scale(Philip D. Sloane et al., 2002). The tool is structured to assess the following domains: exit control, maintenance, cleanliness, safety, orientation/cueing, privacy, unit autonomy, outdoor access, lighting, noise, visual/tactile stimulation, space/seating, and familiarity/homelikeness. The final instrument contains 84 discrete items and one global rating. The SCUEQS, considered a summary scale, consists of 18 items(Philip D. Sloane et al., 2002). This is likely the most widely used environmental assessment tool, and has been validated several times or used to validate other instruments (Bicket et al., 2010; Slaughter, Calkins, Eliasziw, & Reimer, 2006; Philip D. Sloane et al., 2002). Much of the same team that developed the TESS also developed the Professional Environmental Assessment Protocol (PEAP)(M.P. Lawton et al., 2000). This tool takes a very different approach, and rather than count or rate discrete elements of the environment, it creates a global quality score across nine dimensions (referred to above as therapeutic goals):Maximizing Awareness and Orientation; Maximizing Safety and Security; Provision of Privacy; Stimulation and Coherence (Regulation); Stimulation and Coherence (Quality); Support Functional Abilities; Opportunities for Personal Control; Continuity of the Self. Each dimension is defined, with an expanded conceptual discussion of its meaning, followed by a rater's guide to what to observe and inquire about at the time of the walk-through. Finally, each point of the scale is described to highlight the differences among the five points of the rating scale. Thus, it provides a method for describing different qualities of the designed environment, based on common set of therapeutic goals. The PEAP can stand on its own or be used in conjunction with other assessment tools. Despite their early development, these remain to two most commonly used dementia-specific environmental assessment tools.

There are other tools, which are either not dementia-specific but dementia-inclusive, or where the environment is but one component of the assessment tool. A brief description of these follows. It is worth noting that several of these focus on assessing the extent to which a care setting reflects person-centered values. Without going into deep detail, it has been argued that person-centered care values are a direct outgrowth of the therapeutic goals that were developed for SCUs for people living with dementia(Margaret P Calkins, 2018).

The Artifacts of Culture Change(Bowman, 2006) is a self-assessment tool (meaning care communities use it to evaluate themselves) designed to determine the extent to which a care community has adopted person-centered care principles and practices. The Eden Warmth Surveys (one each for residents, families and staff)assess the culture of an organization, going beyond standard satisfaction surveys to assess levels of optimism, trust, and generosity across an organization(Yeung et al., 2016). The Experience of Home (EOH) instrument focuses specifically on the quality of person-environment transaction rather than the more global concept of QOL(Molony, 2007). “Home is defined as an existential place rather than a physical or geographic place, and the term at-homeness is used to convey the experience rather than the location of home.”(Molony, 2007, p. 519, p. 519). The Sheffield Care Environment Assessment Matrix (SCEAM) is a method of linking aspects of the designed environment to quality of life of the residents(Parker et al., 2004). Three hundred individual items, clustered into eleven domains, are rated as present/not-present. The SCEAM was developed in England for research on care homes for people with dementia but can be applied directly to other care buildings and adapted to many building types(Parker et al., 2004). The Environmental Audit Tool (EAT), developed in Australia, is based on 10 principles, which are similar to the therapeutic goals that form the basis of the PEAP, described above(Fleming, 2011). The EAT was validated against the TESS-NH and SCUEQS (Fleming, 2011).

Evolution of the Design of Share Residential Settings for Individual Living with Dementia

Of course, all the literature and research relate to the actual settings that are designed, built, and operated to provide a supportive home for individuals living with dementia who choose (or whose families choose) to relocate into a shared residential setting. There have been several different generations or approaches to the overarching design parti which will be explored.

Prior to the opening of the first dementia-specific setting, nursing homes were almost always designed similar to hospitals with bedrooms, typically shared between 2 and 6 individuals, along long corridors with centrally located common rooms and prominent, centrally located nursing stations(G. Hall, Kirschling, & Todd, 1986). Units almost always accommodated 60 residents, since the licensing rules allowed for a ratio of one nurse to 60 residents at night. “Patients” (not residents) were expected to basically stay in bed or sit in the common lounge/dining room located across from the nursing station. Activities were not a focus(M. Calkins & Keane, 2008; G. Hall et al., 1986).

In 1974 the Philadelphia Geriatric Institute opened the Weiss Pavilion. Powell Lawton and a team of staff, behavioral scientists and designers spent two years in design development, incorporating the input of nurses, the “more articulate residents” and families in the design (which was a new concept at the time)(B. Liebowitz, M.P. Lawton, & A. Waldman, 1979a). They decided that the “design strategy should aim at compensating wherever possible for the disorientation, memory loss, loss of social skills and sense of self typically displayed by organically brain damaged older persons.” (Liebowitz et al., 1979a) (p59). The design drew on a plan originally developed by Osmond and Izumi to increase social interaction among schizophrenic patients and provide them with a choice of private, small group or public spaces. The basic spatial organization of the Weiss Pavilion, which was radically different from the traditional corridor plan, includes a large central space with residents’ rooms located around its periphery (referred to as an open plan). The central area is 40’x100’ with10 single and 15 shared bedrooms shared by only 2 people (versus 4 and 6-person shared rooms, which were common at the time). The central area is flexible by moving furniture around, except that the dining room was defined by a gazebo-style railing and “roof”. The nurses’ station is an open counter near the center of, and projecting into the central space, allowing direct surveillance of all areas. Across from the dining room gazebo is a ‘therapeutic kitchen’ that can be kept locked, but may be used by residents with staff supervision.” (Liebowitz et al., 1979a; B. Liebowitz, M.P. Lawton, & A. Waldman, 1979b) After the post-occupancy evaluation, they identified a number of challenges of the design: the bedrooms and bathrooms were too small; noise was often a problem; the absence of daylight, was, they thought, a necessary compromise; lighting was sufficient but dull/too uniform; the nurses’ station was too large, making it easy for staff to work behind it; the dining room was too small once a majority of residents started using wheelchairs.

For the 15 years following the opening of the Weiss Pavilion, few examples of dementia-specific care settings were designed and open. A relatively small number of dementia-specific units were opened, typically referred to as Special Care Units (SCUs), but they were almost exclusively a wing of a nursing home that had the doors secured to prevent what was termed at the time “elopement”. They might have been a little additional staff training in dementia, and some indicated that they offered special programming for the residents. Only one other early example of a nursing home purposely designed and constructed for individuals living with dementia is known to the author – Friendship House at Cedar Lake Home Campus, which opened in 1976. Shortly after the Weiss Pavilion. This project took a very different approach from the Weiss Pavilion, and consisted of eight small wings of 16 residents each with its own small living room and dining room. This is arguably the earliest example of a “household” model for nursing level of care, though it lacks many of the elements consider necessary today to be considered a household (e.g., a front door that opens to shared living areas and a functional kitchen).

Cohen and Day identify 15 dementia-specific care communities, both nursing homes and assisted living (and excluding day care and respite program) that opened between 1987 and 1993(Cohen & Day, 1994). They range in size from 12 to 128, with residents living in groups of 12 (five projects), 15-16 (three projects) 20-24 (three projects) with the remaining (four projects) having larger groups of residents sharing living and dining spaces. The plans for these projects varied, with some still being primarily corridor-based plans and others reflecting a more open plan with rooms arranged around a central gathering space. However, the fact that fully half the projects were designed so that fewer than 16 residents shared their social and dining spaces is a dramatic and remarkable shift in fundamental thinking about how people who are living with dementia might be best accommodated in a shared residential setting. Also, the inclusion of kitchens in several of these projects is another dramatic shift: this signals the shift from a more institutional mind-set to one that is more reflective of home. These key design factors indicate the extent to which the therapeutic goals described previously have been deeply embraced by both designer and providers. Development of new care settings for individuals living with dementia, most commonly now in assisted living communities as opposed to nursing homes, has continued to be strong. According to the National Investments Center for Seniors Housing and Care (NIC) there were 65,594 memory care living areas in the US by the second quarter of 2016, the majority of which were free-standing properties (not part of a larger CCRC, assisted living or nursing home community)(Standish, 2019). While it is not possible to describe all the design characteristics in these properties, there are some trends that are common to many projects, especially in not-for-profit communities.

1. Small scale: Following the trend identified by Cohen and Weisman, many memory care programs are designed to accommodate 12-16, sometime up to 20 residents, sharing their living spaces. There are, of course, projects where 24-30 residents live together, but these are either less common, or not found in the published literature as frequently.

2. Household design: Designing to recreate home, with a front door, kitchen, living room and dining room as the central gathering space, as well as interior décor that reflects a more familiar residential style, is common – though some projects are better at this than others. Some projects reflect a more upscale, hospitality style décor, while other are less formal.

3. Meals coming from the kitchen: A hallmark of traditional institutional culture is preparing and plating meals in a commercial kitchen that is remote from where the residents live. Some care communities now prepare virtually all of the meals in the kitchen in the areas where residents live, while others rely on a hybrid meal preparation system where some of the meals (e.g. breakfast) are prepared in the household kitchen as residents awake and other meals are prepped in a commercial kitchen, but served, often from steam tables, in the household kitchen. It is worth noting that kitchens and support pantries are one of the most common design elements that are shared between households.

4. Private bedrooms: Having to share a room with someone who is not a spouse, sibling or good friend is another icon of the traditional institutional culture. There is significant research that demonstrates the importance of having a place one can call one’s one—a place one can control who enters (or doesn’t) and that can be personalized to one’s own liking(M. Calkins & Cassella, 2007). Some care communities create what is referred to as enhanced shared rooms or companion rooms that can allow a couple to sleep in the same room or adjacent to each other. Sometimes this type of room is provided to allow for a more affordable cost.

5. Three-fixture bathrooms: While probably not yet the norm, many care providers are looking at their future clients – the baby-boomers—and recognizing that their expectations are different and that they will expect to be able to take a shower in their private space, as opposed to going to a bathing/showering room down the hall.

6. Natural daylighting: Research continues to demonstrate the benefits, both for sleep and for well-being, of getting daily exposure to natural daylight. Some plans ring all the bedrooms around the central shared space thus limiting the amount of daylight residents have easy access to. More creative projects are finding ways to bring daylight into the living areas on at least two and sometimes three sides of the building.

7. Access to nature: The research is clear that both visual and physical access to nature and outdoor spaces is important(Cross & Kuller, 2004; Gharaveis, Shepley, & Gaines, 2016; Lu, Park, & Ahrentzen, 2019; Reid, 2006; Rodeik, 2003). Unfortunately, it seems that outdoor spaces are often underutilized, in part because staff are afraid to let people go outside on their own for safety reasons, and they often don’t make the time to take people outside on a regular basis. This is an example of an “environment-in-use” issue, where the design of the outdoor space might be wonderful, but policies or staff perceptions limit people’s ability to access the outdoor areas.

8. Orientation: This remains one of the hallmarks of dementia that is readily influenced by the designed environment. Numerous research projects have demonstrated that appropriate placement of unique and meaningful cues can aid in finding important destinations such as ones own bedroom, bathrooms, and key social spaces (Brush & Calkins, 2008; K.H. Namazi, Rosner, & Rechlin, 1991; Nolan & Mathews, 2001; Watson, 1999; Zeisel et al., 1994).

9. Support for the caregivers: both families who want to remain engaged in meaningful ways with their relative and staff who are providing most of the care and support for individuals living with dementia need to have their environmental needs considered. Including living spaces of different sizes that accommodate one-on-one interactions as well as small group activities, with easy access to props and things to do, can make it easier for families to feel welcome. Staff need spaces that support between-shift communication and a place to retreat to when things get tough.

10. “Wandering” path: This is one of the few design aspects that was incorporated into early designs and is not as common anymore. A number of early plans (including Weiss Pavilion and Dolan Center) worked to include a looping corridor path that residents who spent a significant amount of time walking, apparently aimlessly, could travel without encountering dead-ends which had been noted to be frustrating to some individuals. The first evidence that this walking behavior was more a consequence of poorly designed environments and programs was when this research topic was dropped from the series of studies at the Dolan Center. The building was designed with two “racetrack” walking paths and the intent was to study whether a continuous loop was less frustrating than one that had dead-ends. Ultimately, it was not possible to conduct the research because there were virtually no residents who spent a considerable amount of time just walking the corridors. The daily program was sufficiently engaging and appropriate to residents’ desires for engagement that people were either engaged in an activity, or content to sit in the living or dining room and look at the paper or chat with others casually. Further the designed environment did not appear to put excess demands on people, making them feel that they needed to try to leave an overstimulating setting. What is seen in current designs is a focus on eliminating long, double-loaded corridors which seem to be confusing, and greater emphasis on the daily routine meeting the social needs of residents.

The Future

A significant amount of the environmental research on settings for people living with dementia was conducted in the 1990’s and since then it has tapered off to some extent. There are still very focused research activities on design elements such as tunable LED lighting, but many of the key questions that are being asked by designers and providers aren’t being addressed by the research. Are there different outcomes (quality of life, well-being, clinical, cognitive, functional)between households comprised of 10 vs 12 vs 16 residents? Does it make a difference to have meals fully prepared in the kitchens in the living area, or does serving from a steam table (or similar) achieve equal results in terms of both nutritional intake and meal experience? Do households need to be operationally separate from each other, or can they share some services and spaces without jeopardizing the quality of the experience of living at home. What designed elements contribute the most to well-being and quality of life. In 2020, National Institutes of Health will hold the second National Research Summit on Care, Services, & Supports for Persons with Dementia and their Caregivers. I think it’s time to argue persuasively for more research funding on these types of topics, so the future accommodations for people who are living with dementia are truly evidence-based.

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https://doi.org/10.1093/geront/40.4.397

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