Building Ideas - This is the inaugural column of BUILDING IDEAS, which is dedicated to exploring the various ways the environment influences and impacts on individuals with dementia and the settings they inhabit/experience. While the major topics covered in each column will be related to the theme of each issue, I invite you to write in with your quirky questions, sticky issues, persnickety problems, and creative or brilliant ideas. Let this be a forum for sharing with others as we travel along our journeys with Alzheimer’s disease and related dementias.

This issue is dedicated to caregiving, and so we’ll focus on ways of helping caregivers understand how the individuals with dementia that they care for may perceive the world around them. Much has been written about physiological changes, both those associated with aging and those which result as a consequence of dementia. These changes fundamentally impact how individuals with dementia perceive and make sense of their surroundings—having potentially as great an impact as the cognitive changes they experience. It is—or should be—an integral part of every staff education program. Yet getting caregivers to understand how these changes are experienced by people with dementia—how it impacts them on a daily basis—is challenging. This column will focus on ways to sensitive caregivers to how some physiological changes affects daily life of the people they care for. It is my belief that people have a greater understanding of something when they experience it for themselves. The classic example is having a baby. One can describe it in great detail, but it will never be the same thing as actually having a baby. Therefore, this column describes a series of reasonably simple experiential exercises that will sensitive caregivers to how some basic physiologic changes are experienced—and how they affect an individual’s perception of their environment. It should be noted that none of these exercises will exactly replicate the physiological changes they relate to. Rather, they are meant to give a sense of how different daily life can be if someone is experiencing a variety of physiologic changes. After each exercise, ask the caregivers to describe what the experience was like, to think about what would be hard for them to do on a regular basis with that type of impairment, and the changes that caregivers can make to compensate for these changes.

VISION – There are a variety of diseases which significantly impact vision, diminishing peripheral vision, clouding central vision, or limiting all vision. Slides or photos of what these changes “look like” can only give a limited sense of how these changes actually impact a person. Buy inexpensive, low correction glasses (easily available at variety and dollar stores), and lightly smear the lens with a little petroleum jelly or chap stick, using a circular motion around the lens. The goal is to still be able to see basic shapes, but impair ability to recognize faces. Have caregivers wear the glasses for 10 minutes while walking around the facility. To mimic some eye diseases which affect one eye more than another, try modifying only one lens. Alternative modifications include applying the petroleum jelly/chap stick to only the outside edges of the lens, or only to the center of the lens. To mimic the change in pupil size, which limits the amount of light which enters the eye, have caregivers wear sunglasses inside for about 30 minutes (you don’t want to induce real eye strain). Once they’ve walked around the facility for a while, and tried to read the signs, or see what food is being served to them, or walked into the tub room, or walked outside and back inside again, bring them back together to discuss what the experience was like. What was hardest? What was most startling? How did they feel? Can they think of residents whose behavior might be explained somewhat by their vision impairments?

HEARING – There are two aspects of hearing changes that are important to sensitize staff to. The first relates to the loss of hearing acuity in the range of normal conversation. Have caregivers wear ear plugs (your maintenance department may have some, a local pharmacy may sell them, or they can be inexpensively ordered in quantity from most medical supply companies). They should wear them around the facility for at least an hour, if that is possible. This will get them somewhat acclimated to how some sounds are screened out and very hard to hear. The second aspect of hearing is more specific to dementia, and relates to the decreased ability to filter or tune out noises that are common in any caregiving setting, but particularly present in long-term care settings. Find two tape recorders, and set them to record for 30 minutes in two commonly noisy areas (such as the dining room during a meal, near the speaker for the call bells or alarms, near the nurses stations, or wherever it happens to be noisy in your setting). Then, during a meeting or training session, set these tape recorders on opposite side of the room, and let them play at a moderately high volume. After 30 minutes discuss whether people were distracted, have a headache, or are particularly tired. Did they have a hard time concentrating on the meeting? And how did they feel after they wore the ear plugs for an hour. Many people begin to screen out a lot of what is going on when they cannot hear well. Discuss how these two changes in hearing—together—might make people with dementia feel.

TASTE & SMELL – The sense of taste is linked to the ability to smell. Have a caregiver wear a nose plug (often available at pharmacies or local sport stores) and be fed a meal by another caregiver. If you serve a pureed diet, have them try this food as well. Add one of the pairs of modified glasses to give this activity even more reality.

TOUCH – Give caregivers a pair of thin cotton gloves (available from most medical supply companies) to wear for at least an hour. Cotton is better than latex, but if they are not available, large latex gloves will do (it is important that they not be skin tight). Additionally, wrap tape or a rubber band around the knuckles to mimic arthritis (be sure not to cut off the circulation!). Try taping the thumb across the palm of the hand, and ask people to go about their normal duties for 20 minutes or so. Ask them to think creatively about how the environment could be modified to make it easier for the residents to pick things up and use them.

MOVEMENT – The variety of conditions which affect movement and balance are extensive and affect people in myriad ways. Some simple exercises to try include wearing training weights (1-2 pounds each) on the ankles and wrists for several hours (if they can be tolerated for that long). Alternatively, have people spend time in a wheelchair or a geri-chair. Preferably, this should be at least 4 hours, although a full day is best to give a sense of the multiple barriers even a well designed environment can place on wheelchair users. Alternatively, have caregivers put 15-20 navy beans or unpopped popcorn in their shoes and walk around for a while. They will quickly see why distances that do not seem long to them may be very long indeed for the people they care for. Again, discuss how these impairments are likely to be experienced by the residents, particularly those with cognitive impairments.

These are only a few experiential exercises that can sensitive caregivers to how differently the world may be experienced by people with different abilities and conditions. We focused here on ones that relate to how changes in an individual’s senses influence his or her overall experience of the world around them. There are, of course, a variety of experiential exercises that relate to specific caregiving activities such as meals or bathing or incontinence. We also did not discuss experiential exercises that reflect cognitive changes associated with dementia. We’d like to be able to feature some of these issues in future columns. If you have an interesting experiential exercise that you use, send it in and we’ll share it with others in the future. Or if you have other environmental questions or issues you’d like to see explored in this column, let us know. We’ll try to include as many as possible.

Margaret P. Calkins, Ph.D. Chair of the Board, IDEAS Institute: Reprinted with permission from Aspen Publishers, Inc., Alzheimer's Care Quarterly (ACQ), Volume 2, Issue 1. Order by calling 1-800-638-8437 or on-line at www.aspenpublishers.com/journals/acq.