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In Elegy for Iris, John Bayley’s poignant memoir chronicling life with his wife, Iris Murdoch, as she struggled with Alzheimer’s disease, the author writes, “Alzheimer’s is, in fact, like an insidious fog, barely noticeable until everything around has disappeared. After that, it is no longer possible to believe that a world outside the fog exists.”
Alzheimer’s disease, a progressive and irreversible neurodegenerative brain disorder, currently affects more than five million Americans. The disease causes formation of plaques in the brain’s cortex, and leads to degeneration of neurons, a reduction in key neurotransmitters such as acetylcholine, serotonin, and norepinephrine, and a loss of synaptic activity—the means by which neurons communicate. This brain atrophy causes symptoms that begin with simple memory loss and gradually advance to widespread, persistent cognitive impairment that may include problems with critical reasoning and sensory perception, general confusion, and social withdrawal. Because of this overwhelming loss of function, people with the disease will eventually need round-the-clock care, often provided by nursing homes or assisted-living facilities. Even the best of these facilities, however, can be a tremendous adjustment for people struggling with the disease, as well as for their families.
But what if we could create assisted-living spaces for people with Alzheimer’s that could make life easier despite the “insidious fog”? What if, by bringing together knowledge of architectural design and knowledge of what goes on inside the brain of the person with Alzheimer’s, we could design buildings and interiors that will help people stay more capable over longer stretches of time, remember the outside world, and successfully interact with it? Furthermore, what kind of brain research is needed as a basis for creating facilities that will make the adjustment from home to a care facility less stressful for the patient? To begin asking the questions that could jump-start this process, the Academy of Neuroscience for Architecture (ANFA) held an interdisciplinary workshop, “Neuroscience of Facilities for the Aging and People with Alzheimer’s” in late November 2006. (To read more about ANFA, see “Architecture with the Brain in Mind.”)
“Right now, not very much knowledge is available in neuroscience that is applicable to the design of facilities for people with Alzheimer’s,” says John P. Eberhard, FAIA, founding president of ANFA. “Ninety-nine percent of research in neuroscience is oriented towards disease and the ramifications of that disease. Practically no one looks at research that could be used to improve the facilities such people live in. We’re trying to encourage that to happen.”
Over three days in Washington, D.C., two dozen prominent neuroscientists, architects, and experts on Alzheimer’s disease and aging came together to discuss how to promote neuroscience research that will eventually have tangible application to designing nursing and assisted-living facilities. In this article, we focus mainly on Alzheimer’s disease, but the lessons learned with this disease can be applied to the aging population as a whole.
“The purpose of the workshop was to create hypotheses that potentially can be tested in neuroscience laboratory conditions and eventually yield results that architects can use in design,” says Eberhard. To that end, participants formed small working groups focused on specific issues, among them physiology and physical ability, memory, sensory perception, and cognitive mapping. Each working group developed a series of hypotheses that, if tested, might have great impact on how architects and designers determine design criteria for assisted-living spaces in the future.
Although Alzheimer’s disease affects many facets of cognition, memory is the ability that is first noticeably diminished. People with Alzheimer’s often have difficulty placing names and words and recalling events, as well as problems with planning and organization. The workshop’s memory working group formulated several hypotheses that the members believe can help provide design guidelines for future Alzheimer’s facilities. Most of these hypotheses had to do with understanding how the human brain, both the normal brain and the brain affected by disease, uses sensory information to cue memory retrieval.
Orienting toward activity. How does the brain recognize information out in the world and figure out what to do with it? Can the presence of immediately accessible visual information help people know where they are and orient them toward activities that are appropriate? Members of this working group would like to find out whether direct visual contact can bring about desired activities. For example, having a toilet in direct line of sight might cue people with Alzheimer’s to use it and thereby avoid accidents. Similarly, having a window in the room might help orient people to the time of day and appropriate activities, such as getting dressed in the morning or going to the dining area for meals. An understanding of how the brain recognizes objects and applies that recognition to their use would be a great benefit in design.
Engaging procedural memory. The group hypothesized that providing culturally relevant activities and spaces can increase social engagement and improve quality of life. The members believe that lifelong activities such as family meals and social events may have become hardwired in the brain as habitual procedures. These procedural memories might be stored in brain regions such as the basal ganglia, which research has shown is a key structure for encoding habits. The basal ganglia are less affected by Alzheimer’s disease than are regions such as the hippocampus, which supports memories for facts and events. Therefore, the right cues and activities might help people with Alzheimer’s to more easily retrieve those habits and behavioral routines, even if retrieval of other kinds of memory is impaired. The ability to read words or simple phrases appears to be retained far into the course of dementia, which suggests that signage might provide a useful cue for the retrieval of procedural memories. If the hypothesis that procedural memories are preserved is borne out, architects can incorporate this knowledge into design of spaces that integrate the right kinds of visual and other sensory cues to help people with Alzheimer’s retrieve these memories and engage more in daily activities.
Finding the way. People with Alzheimer’s disease often lose the ability to find their way. This critical skill requires a great deal of what is called executive function, such as planning and selective attention, as well as the ability to coordinate and direct one’s movements. As the prefrontal cortex deteriorates, however, executive function becomes diminished and such tasks cannot be performed as usual.
The working group hypothesized that specific color and space cues can help people differentiate between personal and public space, as well as help them successfully navigate within a facility. The group would like to see neuroscientists test what kinds of visual cues, as well as cues for other sensory modalities, such as sound and touch, are most salient to people with Alzheimer’s disease, as well as how the cues can best be utilized to help with spatial navigation.
A little daylight. The memory group was also interested in the source and amount of light in facilities. A 1999 study by an architectural consulting firm, the Heschong Mahone Group, showed that students who took classes in rooms with more natural light performed better on standardized tests than those whose classrooms were illuminated by artificial light. It is hypothesized that one of the ways daylight helps learning is by improving memory. Why is this? The members of the working group would like to understand the mechanisms underlying this memory enhancement by daylight and how it might be applied in designing facilities for people with Alzheimer’s.
With better understanding of how memory is cued by the environment in all of these areas, architects may one day be able to use the information to design better environments that make memory cues more noticeable and relevant to people in the various stages of Alzheimer’s.
The Five Senses
As Alzheimer’s progresses into its later stages, people with the disease often develop agnosia, or the loss of ability to identify common objects by sight. Those with this syndrome are not blind—often they can copy drawings of the very objects they cannot identify and can report purely visual information about these objects (such as their perceived color). Nor have they lost their semantic knowledge about objects; when they hear the name of an object, they can give an appropriate definition. Rather, agnosics suffer damage to the high-level visual representations in the occipital and temporal cortices that normally mediate our recognition of objects by sight without effort. Interestingly, however, the other senses can sometimes pitch in to help agnosics recognize objects. By touching the object or hearing it make a sound, people with agnosia can often recognize the same item they were unable to identify by relying on visual input alone.
If environments can be designed to provide additional cues for object recognition, people with Alzheimer’s may able to act independently for longer periods of time. For example, if a person is unable to recognize a shoe by sight, designing closet spaces that place footwear off the floor and within easy reach may encourage touching the shoes and thereby may facilitate identification. Paradoxically, however, too much incoming information has the potential to overwhelm these patients. The workshop participants who focused on sensory perception came up with two sets of questions for neuroscientists that explore this tension.
Is more really more? In an attempt to help activate sensory areas of the brain, designers of many facilities for Alzheimer’s patients have assumed that more sensory information is better. Items such as patterned carpets and brightly colored decorations have been recommended for use without empirical justification. But is more information really helpful to persons with Alzheimer’s?
Although neuropsychological research has shown that multisensory cues aid performance of perceptual tasks in healthy individuals, the situation with people with Alzheimer’s may be different. The disease produces a progressive degeneration of the senses, so people with the disease may be able to process sensory information more easily if they encounter less complexity in their environment. Members of the sensory perception working group would like researchers to examine a series of specific questions related to sensory cues. Do patterned carpets produce more confusion than single-colored ones? Are multiple signs or cues that help direct people to a destination more helpful than single cues? Which sensory cues—visual, auditory, olfactory, touch—are most effective for people with Alzheimer’s disease and how might they be best combined to promote recognition?
In addition, Alzheimer’s specialists have had success in using behavioral conditioning methods to help people with Alzheimer’s re-learn how to perform certain activities. For example, some facilities help residents remember to go to the dining area by playing the same song over the public announcement system at lunchtime each day or training residents to use index cards as cues. In effect, these conditioning methods help people with Alzheimer’s remember information by activating pathways in the brain that have not yet been ravaged by the disease. But facility designers and managers would like to better understand the mechanisms underlying this kind of learning so they can use it with residents more effectively. Are multiple simultaneous cues more effective for patients? Or are they in fact more confusing? Are spatially localized or ambient cues more likely to facilitate this re-learning process? And what is the relationship between the two? By tackling these questions, neuroscientists can help architects balance the benefits of minimizing architectural complexity (thus making the environment simpler for the residents to deal with) with the benefits of providing sensory cues for the residents (thus resulting in a richer environment with more ways for residents to gain understanding).
Providing kitchen-ness. What makes a room a specific type of room? For example, what makes a kitchen a kitchen? Is it the sight of a table and chairs? The hum of the appliances? The smell of fresh-baked bread? The taste of orange juice? What sensory cues can we provide people with Alzheimer’s disease so that they can recognize the category of “kitchen” and retrieve the correct social schemas to know what to do there? Researchers call this kind of knowledge “semantic memory.” Though people with Alzheimer’s disease have some semantic memory impairments, semantic memory tends to be less impaired than spatial or episodic memory. If the right number and type of recognition cues are incorporated into the design of an environment, persons with Alzheimer’s may be able to more easily retrieve memory of semantic categories, like kitchen-ness, and thus be encouraged to engage in the behaviors appropriate to that room.
All of these questions have a profound impact on design. For example, many assisted-living facilities market small apartments to help residents live more independently. However, it is possible that studio apartments that attempt to include facets of several different rooms in one space (for example a half kitchen on the wall of a living room), which are often very different from a resident’s previous home, may cause more confusion for residents in the long run. Greater education on how Alzheimer’s affects semantic memory has the potential to provide designers with the ability to create spaces that will be readily recognized and useful to these patients.
Room to Move
In people with Alzheimer’s, decline of physical abilities usually begins with minor problems in coordinating movement as a result of deterioration in the frontal and motor cortex. As the disease progresses, however, physical abilities degenerate to the point where people require assistance with simple, everyday tasks such as getting dressed or feeding themselves. This physical deterioration is closely linked with other physiological symptoms, including weight loss, sleep disruption, and loss of muscle control. Members of the physiological and physical ability working group came up with four hypotheses that might be tested.
Let there be light. Like the memory group, the physiological and physical ability working group was interested in light. As Alzheimer’s advances, weight loss becomes a serious issue. Brain deterioration in areas such as the orbitofrontal and occipital cortices makes it more difficult for patients to interpret social, physiological, and other cues reminding them to eat. How might this problem be postponed or averted? One possibility is increasing the level of light in dining areas. The thinking is that brighter lights may allow people with Alzheimer’s, who often suffer visual impairment, to see better and therefore to obtain visual cues that will stimulate appetite. Members of the group hypothesized that increased visual contrast achieved by brighter lighting would allow patients to see not only the food itself but also other people around them who are eating, thus evoking additional social cues that stimulate hunger.
The great outdoors. Increased physical activity has long been known to enhance overall health and increase life expectancy. However, along with the declining mental and physical abilities of people with Alzheimer’s comes less spontaneous physical activity. This problem is exacerbated because of safety concerns such as the danger of falls or that an unaccompanied patient might wander off the premises, and consequently many assisted-living facilities do not provide outdoor spaces for residents.
The Woodside Place Alzheimer’s Residence in Oakmont, Pennsylvania, however, is one facility mentioned at the workshop that has had great success with allowing the residents to have access to the outdoors. Outside, a system of looping paths was designed so that residents can safely wander on the grounds. And residents are taking advantage of this, frequently spontaneously deciding to take a walk outside.
But this success leads to several questions that need to be answered scientifically. Do people have an innate need to be outside or to explore? How can we help motivate people with Alzheimer’s to increase their physical activity? The physiological and physical ability working group would like to see such questions tested in people with Alzheimer’s to see if these needs exist, and if so, whether they increase or decrease as the disease progresses. Greater understanding may help architects to design outdoor areas that not only engage the interest of people with Alzheimer’s but also are safe enough for continued use as the disease progresses.
Pets and children. Pets have long been thought to benefit the health of elderly people in retirement communities or facilities. Several studies have shown that the presence of a pet can reduce stress, lower blood pressure and cholesterol, and increase physical activity. Those benefits also apply to persons with Alzheimer’s disease. In a landmark study in 1989, Jacqueline Stolley of the Trinity College of Nursing and Health Sciences and colleagues found that the presence of a dog significantly increased the number of social behaviors exhibited by a group of twelve institutionalized people with Alzheimer’s. This finding has been replicated several times in the past two decades, and as a result, many long-term-care facilities have resident or visiting pets available as “pet therapy.”
Similarly, anecdotes from caregivers, as well as empirical research, have shown that having children around can benefit people with Alzheimer’s. Several studies have demonstrated that intergenerational activities that include the elderly and children increase social behaviors and improve affect in people with dementia. But why is this so? Why are animals and children able to reach people with dementia when adults are not? Might it have something to do with the neural deterioration that occurs in people with Alzheimer’s, often reducing them to a childlike state? Or is it that dogs and children provide such clear social cues that they are obvious even to people in the advanced stages of the disease? To date, the benefits of these kinds of therapies have not been studied from a neuroscientific perspective.
Although facilitating activities involving children or pet therapy in a nursing home may seem to be an operational issue, it is not without architectural impact. Greater understanding of the brain basis for the benefits of these activities could be leveraged to design buildings that facilitate introducing children and pets, both for their effects on physical health and as cues to evoke social behavior. Architects and designers might consider, for example, providing easier access to the outdoors, concealing potentially intimidating medical equipment, and creating pet- and child-friendly spaces within assisted-living facilities that are safe and comfortable both for residents and for children and animals.
The magic number. Residents in long-term-care facilities are often put into groups to stimulate physical activity and social interaction. But how many people should be in these groups to give the most benefit? Members of the physiology and physical abilities working group hypothesized that smaller groups (for example, nine people) would elicit greater benefits than larger groups (of fifteen or more). They suggested that the greater memory demands necessary for understanding the social relationships within the larger groups might be overwhelming to people with Alzheimer’s. Smaller groups may be less confusing, allowing people with Alzheimer’s to be able to interact with one another better.
When regulations or other imperatives necessitate large-group activities, it may be possible to address this problem by arranging multiple smaller groups to be conducted at the same time. Pilot research has even shown that people with early dementia are capable of successfully leading small-group activities for those with more-advanced dementia, making this “multiple small groups” approach more feasible. Workshop participants suggested that scientists examine group size to measure the effect on social behavior and other abilities. The knowledge could be applied to planning social therapy and also to the design of spaces for social activities.
Cognitive Mapping and Design
The ability to get from point A to point B is a critical cognitive skill. Wayfinding was important enough to garner its own working group but was also of great interest to those in the memory and sensory perception working groups. The seemingly simple act of finding one’s way comprises many smaller tasks, such as knowing where we want to go, understanding how to get there, having the ability to coordinate our movements in order to physically make our way to the desired destination, and recognizing the destination once we reach it. All of these aspects of wayfinding can be severely diminished in people with Alzheimer’s disease. Workshop members concerned with cognitive mapping—the ability to internally represent the spatial relationships between different locations in the environment—discussed how to make environments easier to interpret.
The impact of legible environments. Once again, discussion came back around to salient cues. Working group participants hypothesized that environments that are easier to interpret (“legible”) would be easier to navigate, thus increasing social engagement and affect and decreasing disruptive behavior in people with Alzheimer’s disease. But before this specific hypothesis can be tested, neuroscientists must be able to define just what sensory information is legible to those with the disease. A greater understanding of the types of cues that facilitate learning and re-learning, memory, and wayfinding is necessary before architects and designers can create environments that are easier for people with Alzheimer’s to interpret.
Balancing Challenges and Abilities
The late M. Powell Lawton, Ph.D., a pioneering researcher in the psychological and social aspects of aging, identified the construct of “environmental press,” defining it as the challenges existing in an environment that can make activities difficult. These challenges must always be balanced with the coping abilities of the people for whom one is designing. For example, something as simple as a short staircase may offer too great an environmental press for residents of an assisted-living facility, given their declining movement coordination and physical strength. The idea is that a well-designed facility reduces environmental press in such a way as to improve the daily quality of life.
But defining environmental press for Alzheimer’s disease can be difficult, because the disease progresses in stages and along a very individualized timeline. Each person with the disease will have different levels of ability and different challenges to overcome at different times, making it difficult to apply generalized strategies for reducing environmental press.
Many aspects of facility design affect the environmental press, among them the layout and design of rooms, grounds, and common areas. The working group focused on social interaction as the primary driver for reducing challenges for people with Alzheimer’s disease. In doing so, they came up with two hypotheses they would like to see tested.
Dining in style. Nutrition and caloric intake, a serious issue in the care of people with Alzheimer’s disease, was discussed not only by the physiology and physical ability group but by the environmental press working group as well. This group wanted to know if the way people dine affects how much they eat and therefore increases or decreases their overall level of health. Members of the group were interested in comparing family-style and restaurant-style dining, defining “restaurant style” as two to four people who are served by waitstaff and “family style” as a larger group of eight to ten people who pass around large platters of food and serve themselves. The working group hypothesized that family-style dining might promote better socialization, eating habits, and overall health.
Social interactions for health. How do the behaviors that make up social interaction affect health? Evidence has shown that people who frequently engage in social activity tend to be healthier than those that do not. Given this information, the working group also hypothesized that settings that foster social interactions among large groups of people are associated with better health outcomes. This was in direct contrast with the physiological and physical ability group, who felt that smaller social groups would be more beneficial. Clearly, optimal group size for people with Alzheimer’s is an area that needs further research.
From a neuroscience perspective, social interaction is a compilation of many complex behaviors that are difficult to tease apart. But perhaps greater understanding of the neuroscience of social behavior and social interaction can lead to a model of how the neural systems that mediate these behaviors decline with the progress of Alzheimer’s. Such a model would provide evidence-based design criteria for many different aspects of care for residents of assisted-living facilities.
Paving the Way
More than a hundred years ago, before doctors had an understanding of germs and how they were spread, epidemics of disease ran rampant through hospitals. Once germs were discovered, however, and medical and biological researchers worked together to determine how they were spread, changes were made. Nurses began washing their hands. Medical waste was properly disposed of. Antiseptics were introduced. And the rate of infection decreased in response to these measures. By working together in a cooperative, interdisciplinary fashion, medical doctors, biologists, and other critical groups of interest were able to change the way patients were treated and, in turn, improve their quality and even their length of life.
ANFA hopes that a similar shift will occur in the worlds of architecture and neuroscience. “The interface of architecture and neuroscience is fertile ground for innovation. I think there will be some interesting collaborative work that proceeds from this workshop,” says workshop participant Cameron J. Camp, Ph.D., director and senior research scientist at the Myers Research Institute in Ohio.
As more professionals realize the importance of knowledge-driven and empirically based design, experts from the fields of neuroscience, architecture, and Alzheimer’s research can join forces to formulate the right questions—and, in time, discover their answers—to help construct long-term-care facilities that will improve the quality of life for people living in the insidious fog of Alzheimer’s disease, as well as for their aging peers.
And given the growth in the numbers of people living well into advanced age, coupled with the resulting exponential increase in Alzheimer’s disease, this collaborative effort is something from which we may all one day benefit.