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Spring 2003
Featured Article

Sensory Loss, Dementia, and Environments

What is it like to grow old with dementia? Imagine that you are experiencing age-related sensory loss, in addition to changes in judgment, behavior, and memory. Not only is your visual acuity less sharp in dim lighting, but you also see frightening images in shadows. It is harder to hear conversations when you are in noisy environments, and loud sounds are agitating. You bruise easily and fail to attend to cuts and wounds. Your taste receptors are slow to detect spoilage, and you forget to throw away rotten food. You sometimes leave meals that you are cooking unattended, and more time than usual elapses before you smell the burning pan. Not only do you forget recent events as if they had never happened, but, frighteningly, you do not know what to expect will happen next. Days and nights blend together because you no longer can impose structure on your day. Navigational skills lost, you cannot find your way home, even in your own neighborhood. This is the reality of aging with dementia--without intervention.

Alzheimer's disease and related dementias significantly change how people interpret what they see, hear, taste, feel, and smell (National Institutes of Health, 2002). The extent of these changes is highly individual and in constant flux, depending on neuropathological changes, sensory loss, time of day, medication management, and the social and physical environment. A consistent observation, however, is that people with dementia are particularly affected by their physical environment (Alzheimer's Association, 2000). The amount, type, and variety of stimuli really matter; both under- and overstimulation cause confusion, illusions, frustration, and agitation.

An environment that is suited for people with cognitive impairments does not happen spontaneously; it takes research, understanding, planning, and an abundance of individualized care. Although significant losses are associated with dementia, people with dementia retain many talents and capabilities--but these capabilities lie dormant unless they are purposely brought out. Appropriate sensory stimulation is a main avenue to awakening latent memories and abilities.

In this paper, I will discuss key environmental elements that encourage people, objects, and spaces to interact in healthy ways. I speak from personal and professional experience. I am the daughter of someone with Alzheimer's. I am also an environmental gerontologist with a private practice and a faculty position in geriatrics and gerontology at a large urban medical college and the president of the family council at the assisted living facility where my mother resides.

Seeing

People with dementia often experience a number of changes in visual abilities because of neurological impairments, including problems with depth perception, glare, and visual misinterpretations, which are exacerbated by visual disorders (Mendez, Cherrier, and Meadows, 1996). Moreover, because of memory impairment, they may forget to wear glasses or not have up-to-date prescriptions. These sensory changes increase fall risk and pose many challenges for individuals, caregivers, and family members.

Familiar sights. Our world is primarily a visual one, and we all are dependent on sight to recognize and find our way in the environment, but this is especially true for people with dementia. For them, an uncluttered and small-scale environment is visually easier to navigate. My mother, who is in mid-stage Alzheimer's, lives in a dementia-specific assisted living facility (ALF) that is divided into small "households" of eight to ten residents. When she leaves her room, she sees a living and dining area, which cues her that she is in someone's home. Because there are no long hallways to get lost in, she finds her way back independently. On her door, a large photograph of a grandson, along with her own name in bold type, visually cues her that this is her room. Such "way-finding" cues vary in their effectiveness, depending on the stage of the disease and cueing materials used (Calkins, 1991). The image and text must be large enough to capture the person's attention and must be tailored to the individual. Images that connect people to their past are highly individual. For example, a large arrangement of dried corn, not a personal portrait, enabled a former corn researcher to identify his room.

Problems with depth perception and contrast sensitivity. This dysfunction makes it harder to identify objects that are set against a background consisting of similar colors. Patterned carpeting or dark contrasting carpet borders may also increase visual-spatial difficulties; some individuals may not perceive a floor with this type of carpet to be level and may attempt to jump or step over patterns or borders. As people with dementia also lose the ability to screen out unnecessary stimuli, significant environmental features need to be highlighted. Strong color contrasts should be used between the following objects:

  • Utensils and tabletop
  • Floors and walls (People may actually walk into the wall if there is no contrast.)
  • Chair or bed and flooring
  • Toilet against wall and floor
  • Doors and adjoining walls

If they cannot see it, it does not exist. As people with dementia often get lost, it is important to control a building's exits. Many caregivers have been able to control the ability of the person with dementia to leave a dwelling unattended by camouflaging the exit with a mural or drape or by painting or wallpapering the door the same as the adjoining wall. Installing locks high or low and out of the usual sightlines may also be helpful. This "seeing is believing" concept also applies to both the physical and the social environment. Like many other people with dementia, my mother has no awareness that anything exists outside her room when she is in her room with the door closed. At the end of a visit, she usually gets agitated when I attempt to leave. "I am all alone here. What do I do next?" she asks. Now I make sure that an aide always accompanies me into her room as I say goodbye, serving as a visual bridge to what comes next.

Poor design, not dementia. At times, loss of function is incorrectly blamed on dementia, when poor design is the real cause. For instance, on a very hot summer day, after I reported that my mother was in her room without air conditioning, the staff replied that she could no longer operate her air conditioner. Upon further investigation, however, we found that this inability was not due to dementia. Rather, my mother simply could not read the lettering on the air conditioner's control panel because the lettering was too small and the color of the letters was too similar to the color of the background. My mother asks, "Why do they do that? Why do they make your brain work so hard?" Applying an on-off label in large black type on a white background quickly restored her ability to function.

Lighting for vision and sleep disorders. It is important to keep lighting even throughout a space so that people can see what they are doing and where they are going. The agitation of people with dementia increases, especially during activities, if there is inadequate lighting. Similarly, dimly lit rooms go unused. Additional fixtures may be needed for general light and for lighting for tasks. Today's fluorescent light bulbs are energy efficient and offer excellent color rendition. Bulbs with a color-rendering index of 80 or higher (CRI is a numerical measurement of how well a light source renders color as compared to daylight, which has a CRI of 100) will have a warmer, more natural light. Research also shows that very high levels of light can be an effective therapy for reducing agitation and increasing nighttime sleeping (Van Someren, Kessler, and Swaab, 1997). A recent pilot study has found that blue light (which has a very short wavelength) from light-emitting diodes (electrical devices for making alternating currents direct) is maximally effective at influencing the circadian system (Figueiro, Eggleston, and Rea, 2003).

Visual misperceptions and agitation. Some people with dementia have difficulty differentiating reality from representation. They may perceive even treasured family photos that adorn walls or dressers as "watching" them undress. Turning those pictures toward the wall during dressing can be an effective solution. People with dementia sometimes mistake television shows for reality. Families commonly complain that their relative with dementia is subjected to both too much television viewing and inappropriate programs. For example, during one of my visits to my mother's residence, "Xena the Warrior Princess" was on television in the activity room. The program featured a warlord pointing a large snake-like dagger against his opponent's throat. At my request, the aide turned the program off. A resident who was walking restlessly around the room came over to me and said, "I'm glad it's off. I was scared, but I was afraid to say anything."

Reflected glare on glossy surfaces interferes with visual perception among older adults. In addition, glare may cause illusions, especially for people with dementia who also have low vision. Sheer drapes filter daytime light without blocking the view, while heavier drapes or blinds can be used at night. Matte finishes on the floor and walls can also reduce reflections that may cause misperceptions.

Hearing

People with dementia may have normal hearing, but they can lose the ability to interpret what they hear accurately. Underlying hearing disorders can also predispose a person to auditory hallucinations. For example, the sound of a telephone may be perceived as a small dog barking. Excess noise can result in confusion, overstimulation, and difficulty communicating.

Reducing distressing sounds. Noise is a known stressor, especially to people with dementia. Many people living in care homes and nursing facilities are subjected to loud and disturbing sounds of alarms, call bells, and overhead paging systems throughout their day. Frequently, the negative effects of noise are controlled by giving the residents drugs, when the correct treatment would be a noise-reduction program. Fortunately, state regulations and individual facilities are beginning to address acoustical control. For example, Maine and Arkansas require that overhead paging systems in dementia units be used only for emergencies. Windows, wood, and linoleum and other hard surfaces will be particularly noisy, as they do not absorb sound but rather bounce it back into the room. Individuals with dementia can also have age-related hearing loss, so reducing background noise improves communication. Several interventions can help reduce environmental noise, for example:

  • Drapes with lining
  • Walls hung with quilts or acoustical panels
  • Place mats on dining tables
  • Upholstered furniture
  • Large rooms renovated into smaller rooms
  • Wireless vibrating call systems
  • Quiet periods without overhead paging system
  • Carpeting

Introducing pleasant sounds. Music is generally regarded as one of the most enjoyable and therapeutic activities for all older adults. More than the spoken word, familiar music helps retrieve lost memories and feelings for people with dementia, in particular, as melodies use different neural pathways not generally affected by dementia (Tomaino, 1996; Steckler, 1998), and the effects of music are profound. A person who no longer remembers her name can belt out "Oh Susannah"; seemingly unresponsive individuals tap their feet to the rhythm of familiar melodies; people sitting in a once silent dining room now hum along to Frank Sinatra tunes; and agitation at bath time is reduced when church music or favorite melodies are played. For therapeutic results, however, content and volume really do matter; musical events presented with the best of intentions can easily turn disastrous. For example, loud bagpipe music or discordant sounds can easily trigger violent reactions among people with dementia.

Touch

Many people enjoy the warm touch of a family member, friend, or caregiver, but others do not and require that permission be granted even for a hug goodbye. Knowing who, when, where, and how to touch is key.

Design affects bathing comfort. The design of the bathing room and the equipment used in many care facilities would provoke agitation in the average person--sitting naked on a cold metal lift, being jostled about and lowered into a cavernous tank, having a stranger's hands poking and prodding one's private places. The background view of unfamiliar equipment and commodes adds to the agitation. In this type of room--which I have seen all too often--bathing is a humiliating and frightening experience. Fortunately, more facilities are now retrofitting their bathing rooms with less institutional bathing fixtures. Research shows that the type of bathing unit used in these facilities is critical, that the design of certain tubs triggers more agitation than the design of others (Sloane, 1995).

Incorporating pleasant sensory stimulation helps ease the trauma of assisted bathing, making the experience more akin to a visit to a spa (Sloane et al., 1995; Whall, 1997). The following are suggestions for creating an attractive, sensory stimulating atmosphere at a low cost:

  • Walls painted in rich apricot, yellow, or blue
  • Pictures of nature placed in the bather's direct line of sight
  • Bathwater with fragrance (if appropriate)
  • Bather's favorite music on cassette
  • Dimmer switches to control light levels
  • Colorful plush towels, hung on the wall
  • Electronic controls camouflaged with a decorative cloth

As many older adults have impaired thermoregulators, heat lamps are recommended to increase their thermal comfort before and after bathing. Terrycloth robes also keep elders from getting chilled and reduce the need for rubbing a towel against delicate skin. For individuals who shower, agitation may be lessened if caregivers hold the handheld showerhead starting at the feet, slowly work up the body, and explain the procedure to the bather (Olsen, Ehrenkrantz, and Hutchings, 1993).

Therapeutic touch. Hand massage and other forms of touch can have a very therapeutic effect, as can the presence of animals, especially cats and dogs. Not only are they wonderfully silky to the touch, but they also provide people with an opportunity to give and receive affection. I took along my golden retriever, Goldie, to visit my friend Burt, who was in the late stages of dementia during the last year of his life. Goldie would jump up onto his bed, where Burt touched and petted her nonstop for the duration of our visit. Burt spoke very little during those days, but after a few visits, he exclaimed, "Life is wonderment--I love you, Goldie." Then, to the amazement of his wife and me, Burt proceeded to reminisce about his life in West Virginia with his childhood dog.

Those adults in advanced stages of dementia who do not have access to animals may derive tremendous comfort from holding a stuffed animal close to their body. As individuals may become very oral in the end stages, picking at and putting objects into their mouths, it is important to choose an animal with the eyes and nose securely attached and to monitor them frequently.

Taste and Smell

Taste and smell are related senses, and individuals with dementia often experience a decrease in both and thus are at increased risk for food and carbon monoxide poisoning (National Institutes of Health, 2002). Refrigerators should be cleaned out weekly, harmful chemicals locked away, and carbon monoxide and smoke detectors installed and maintained. Instructions on what to do if an alarm sounds should be printed in large letters and displayed alongside detectors.

Design influences nutritional status. Nutritional status can be affected by a myriad of factors that include lighting, table and tableware, food choice and appearance, cueing, and tablemates.

  • Smaller, residential dining rooms are preferable, since too many people and too much noise is both overstimulating and distracting. If renovation is not possible, half walls or sturdy planters can divide large spaces into smaller areas.
  • Inadequate lighting and color contrast between the tabletop and the dinnerware can result in problems that lead to inadequate nutritional intake (Koss and Gilmore, 1998; Calkins and Brush, 2002).
  • Square tables and place mats define personal territory and may reduce the frequency of people taking their tablemate's wares by mistake. Plain tablecloths or place mats are recommended to avoid confusion. Drinking glasses and utensils should be easy to grasp; a variety of glass sizes and built-up handles is important.
  • Choice of food items and texture, portion, and arrangement of food is critical for encouraging the appetite of a person with dementia. Some individuals will refuse to eat from a plate piled high with food or if more than one food is served at a time. Jitka Zgola (2001), an occupational therapist specializing in long-term care for people with dementia, recommends tasting groups to find the specific flavors to which individuals respond. In her video, she tells the story of an undernourished client whose appetite was awakened when honey mustard sauce accompanied every meal. As the enjoyment of food is also dependent on sight, pureed food can be made visually appealing if it is formed into shapes by using molds or pasty bags.
  • Caregivers can encourage independence at mealtimes by using verbal cueing ("Place the fork in your hand") and physical cueing (placing a fork in the person's hand). Some individuals who can no longer manipulate utensils may be able to eat independently if finger foods like baked fries or fish sticks are offered.
  • The right choice of tablemates is critical. Seating assignments should be quickly changed if residents are agitated. A table placed away from other residents is helpful for those who wish to dine solo.

Improving pleasant smells. Infusing an environment with pleasant smells is important for both the caregiver and the person with dementia. Fragrant plants and herbs, inside and out, can easily provide these smells, as can preparation of coffee and baked cookies and bread.

Conclusion

What is it like growing old in an environment that is designed and maintained for the comfort and well-being of people with dementia? Interesting sights, smells, sounds, tastes, and tactile sensations are specifically chosen to support or increase functional abilities and elicit pleasant memories. Small-scale rooms, well-defined architectural features, and memory cues aid navigation. Appropriate light levels illuminate the environment, eliminate disturbing shadows, increase activity participation, and enhance sleep. Sound-absorbing materials and wireless paging systems reduce disturbing noise levels. Home-style bathtubs and a warm, colorful room make bathing less stressful. The small portions of tasty food, spiced to your liking, encourage appetite. You enjoy your aromatic hand massage and the silky, tactile sensations from a pet animal. Familiar artwork, music, and television programs contribute to a sense of identity. Even though you do not remember recent events, caregivers inform you of what to expect. You still get agitated when pushed beyond your capabilities, and simple tasks can still be confounding, but the sparkle of life is kept alive in a comforting environment that stimulates you without being overwhelming.

As caregivers, we have an exciting opportunity to create this kind of dementia-friendly environment.

Rosemary Bakker, M.S., A.S.I.D., is a research associate in gerontological design in medicine, Division of Geriatrics and Gerontology, Weill Medical College, Cornell University, New York City, N.Y.

 

References

Alzheimer's Association. 2000. Guidelines: to Assess and Improve the Quality of Special Care Units and Nursing Homes. Boston.

Calkins, M. 1991. "Design for Dementia." Journal of Healthcare Design 3: 159-71.

Calkins, M., and Brush, J. 2002. "Designing for Dining: The Secret of Happier Mealtimes." Journal of Dementia Care 10(2): 24-6.

Figueiro, M., Eggleston, G., and Rea, M. In press. Effects of Light Exposure on Behavior of Alzheimer's Patients--A Pilot Study.

Koss, E., and Gilmore, C. G. 1998. " Environmental Interventions and Functional Abilities of AD Patients." In B. Vellas, J. Filten, and G. Frisoni, eds., Research and Practice in Alzheimer's Disease, 185-91. Paris, New York: Serdi/Springer.

Mendez, M., Cherrier, M., and Meadows, R. 1996. "Depth Perception in Alzheimer's Disease." Perceptual and Motor Skills 83: 987-95.

National Institutes of Health. 2002. "Home Safety for People with Alzheimer's Disease." U.S. Department of Health and Human Services. National Institute on Aging Alzheimer's Disease Education and Referral (ADEAR) Center. NIH Publication No. 02-5179.

Olsen. R., Ehrenkrantz, E., and Hutchings. B. 1993. Homes That Help: Advice from Caregivers for Creating a Supportive Home. Newark: New Jersey Institute of Technology Press.

Sloane, P. 1995. "Bathing the Alzheimer's Patient in Long Term Care: Results and Recommendations From Three Studies." American Journal of Alzheimer's Disease 10(4): 3-11.

Sloane, P., et al. 1995. "Bathing Persons with Dementia." Gerontologist 35(5): 672-8.

Smallwood, J., et al. 2001. "Aromatherapy and Behaviour Disturbances in Dementia." International Journal of Geriatric Psychiatry 16: 1010-13.

Steckler, M. 1998. "The Effects of Music on Healing." Journal of Long-Term Home Health Care 17(1): 42-8.

Tomaino, C. 1996. Lecture presented at the Geriatric Occupational, Physical, Speech Therapies Module, sponsored by Columbia University-New York Geriatric Educational Center, New York.

Van Someren, E., Kessler, A., and Swaab, D. 1997. "Indirect Bright Light Improves Circadian Rest-Activity Rhythm Disturbances in Demented Patients." Biological Psychiatry 41: 55-63.

Whall, A. 1997. "The Effect of Natural Environment Upon Agitation and Aggression in Late Stage Dementia Patients." American Journal of Alzheimer's Disease 12(5): 216-20.

Zgola, J. 2001. Bon Appetit, How to Create Meaningful Mealtimes in Long Term Care. Los Angeles: Terra Nova Films.

From Generations Spring 2003 issue, 27(1): 46-51. © 2003 American Society on Aging


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