The Alzheimer’s Caregiver®

Activity-Focused Dementia Care: Person-Centered Care and Environments

Welcome to the educational program Activity-Focused Dementia Care: Person-Centered Care and Environments. This program will provide a foundation for understanding the importance of relating activity-focused care to a person-centered approach, and how to modify environments to create the best possible occupational space.

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This is Lesson 14 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section.

We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.

Let’s get started.

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Case Study 1

Let’s start with an example of Robert, who has Alzheimer’s disease. Robert is 75 years old and has always been a night owl, because he enjoys staying up late doing things.

Why did Mary want Robert to get up early in the morning?

A) Robert likes getting up early in the morning.
B) If Robert gets up early, he’ll sleep better at night and be more engaged during the day.
C) Getting up early is generally helpful to people with dementia.
D) Mary likes to start the day early.

Case Study 1 Answers:

Choice A: “Robert likes getting up early in the morning” is an unlikely answer, because we know that he has been a night owl for most of his adult life. This long-term habit and preference hasn’t changed simply because Robert has dementia.

Choice B: “If Robert gets up early, he’ll sleep better at night and be more engaged during the day” is also unlikely.

Because Robert likes to stay up late, waking him up early will only deprive him of much needed sleep. In turn, Robert will be more likely to nap during the day, which may make getting a good night’s sleep more difficult for him. Like all of us, if Robert doesn’t get enough sleep, he will be less alert and engaged, not more.

Choice C: “Getting up early is generally helpful to people with dementia” is incorrect.

There is no reason to believe that, as a group, people with dementia generally do better when they get up early. As is true for all people, some people with dementia function best when they get up early and go to bed early; others function best when they get up late and go to bed late.

Choice D: “Mary likes to start the day early” is the most likely answer.

Robert’s caregiver, Mary, is likely used to getting up and starting the day early herself. So it is more convenient for her to wake up Robert in time for the breakfast she has prepared.There is no therapeutic reason for waking Robert up that early in the morning.

Person-Centered Care

Now let’s learn more about person-centered care. The most important principle of activity-focused care is that it is part of person-centered care. Person-centered care is the opposite of batch treatment, where everybody is treated in the same way without respect to individual autonomy and preferences. Person-centered care is individualized and considers each individual’s wants and needs.

Activity-focused care is best when customized to each individual. Caregivers must get to know care recipients as unique individuals and take into consideration their personal preferences, characteristic habits and routines. In the case with Robert, he likes to stay up late into the evening and get up late in the morning. Knowing this about Robert can help caregivers work with his preferences rather than assuming that he is a grumpy person who is hard to get out of bed in the mornings.

Person-centered care also means that caregivers need to respect the person’s values and beliefs. This includes respecting and facilitating spiritual and religious practices whether they are similar or different from our own. Cultural norms can also be very powerful in influencing the kind of care that someone wants or expects. Therefore caregivers should try to learn about each individual’s cultural norms and practices.

Meaningful Life Experiences

As part of person-centered care, caregivers should learn about their care recipients’ meaningful life experiences, past roles and accomplishments. Having this information shows people that they are well-known and respected for who they are and what they did in their lives.

To learn about someone’s meaningful life experiences, caregivers can ask questions like: Has the person been a parent or grandparent? What sort of work did she or he do? Was the person involved in meaningful volunteer work like coaching, being a mentor, or contributing to a church, temple, or synagogue? What other accomplishments are important to this person?

Once caregivers know who their care recipients were in the past before they developed dementia, then they can find more ways of individualizing care. For example, caregivers can use photographs, albums, and scrap books to help someone reconnect with their loved ones, memorable events, and important accomplishments. Posting a brief life biography and supporting pictures on the door of someone’s bedroom can remind that person that she or he is a unique individual. It can also help people identify their own rooms.

Respecting Values and Beliefs

Person-centered care respects cultural norms and expectations of individuals as much as possible.

Cultural norms can be very powerful in influencing the kind of care that someone wants or expects. For example, while independence and autonomy are highly valued in Western societies, interdependence and community with others are more highly valued in many Latino, Asian and Pacific Islander societies. Someone whose culture places a high value on independence and autonomy may feel disrespected and embarrassed when given assistance from others. Yet someone whose culture more highly values interdependence and community may feel appreciated and respected when offered the exact same kind of assistance. Learning about the cultural norms and expectations of a care recipient helps the caregiver better understand why the exact same approach may work well on one individual but not another.

Person-centered care also respects values and beliefs, including spiritual and religious preferences. Understanding a person’s values and beliefs conveys respect for that person. For example, helping individuals with a particular faith get to religious services that they want to attend would be a positive thing to do. Such support would indicate respect for their religious beliefs and a willingness to help them continue to have positive religious experiences. Yet it would not convey respect or support if we expected all individuals to attend a particular religious service regardless of whether they were religious or not, or whether they practiced that particular religion.

Case Study 2

Let’s look at another example of Robert, who is in the middle stages of Alzheimer’s and lives with his wife, Mary. Mary sees that Robert is wandering around, so she invites Robert into the kitchen to do a puzzle, because she knows that he enjoys putting them together every day.

What is the main reason why Robert failed to engage in putting the puzzle together?

A) Robert failed because he became more interested in the TV rather than putting the puzzle together.
B) Robert failed because of his cognitive problems caused by Alzheimer’s.
C) Robert failed because of hearing and vision problems.
D) Robert failed because his environment was not set up to increase his chances of success at the activity.

Case Study 2 Answers:

Choice A: “Robert failed because he became more interested in the TV rather than putting the puzzle together” may seem like a reasonable answer at first glance. After all, Robert did look in the direction of the TV several times.

However, knowing that Robert enjoys doing puzzles, there is little reason to believe that he preferred the TV over doing puzzles. Also, Robert seemed to understand and respond favorably when Mary invited him to do the puzzles. So choice A seems unlikely.

Choice B: “Robert failed because of his cognitive problems caused by Alzheimer’s” may be partially correct.

It is tempting to think that Robert failed at the activity because of cognitive problems caused by Alzheimer’s, because it causes memory loss, confusion, and disorientation to varying degrees.

However, we know that Robert is usually able to participate in putting puzzles together. So on the one hand, it may be possible that Robert’s cognitive problems at that moment prevented him from undertaking and completing the activity, but on the other hand, Robert’s cognitive problems should not have been so severe that day to prevent him from participating at some level with assistance from Mary.

Choice C: “Robert failed because of hearing and vision problems” may also be partially correct.

Having hearing and vision loss may make it more difficult for Robert to understand what Mary was saying to him, but that explanation does not take into account that Robert can follow conversations and instructions reasonably well when in quiet environments without background noise.

People who are hard of hearing have a difficult time understanding what is said to them when there is a lot of background noise. Yet, when background noise is eliminated, persons with hearing loss can often hear well enough to follow a conversation.

Choice D: “Robert failed because his environment was not set up to increase his chances of success at the activity” is the best answer.

Robert failed because his physical environment failed him. The environment in which he undertook the activity was not modified to compensate for his cognitive, hearing, and visual problems and thus failed to provide a positive occupational space.

Along with his cognitive and hearing problems, Robert’s visual problems may have also contributed to his failure to engage in puzzle making. His low vision was due not only to common age-related visual problems, but also to having Alzheimer’s disease.

Robert’s difficulties with seeing were made worse by the environment in which he was trying to perform the activity. Recall that the table was cluttered. The visual clutter probably made it more difficult for Robert to concentrate on the task at hand, in the same manner that the loud background noise from the TV made it more difficult for him to concentrate. Also, many of the puzzle pieces were about the same color as the table, which provided little contrast and made it very hard for Robert to distinguish between the puzzle and the table.

Barriers to Participation

Some of the barriers to participating in activities are caused by age-related changes vision loss. Changes include cataracts, damage to the retina (the inner lining of the eye that senses light and color), and drying and scarring of the cornea (the clear surface of the eye). Aging also causes increased density of the eye’s lenses, decreased size of the pupils and increased sensitivity to glare. Glare can severely interfere with seeing well. Even older adults without dementia may mistake glares off shiny floors as pools of shimmering water (known as an illusion). For someone with Alzheimer’s, a floor that looks like it has water on it can be disorienting or even frightening. Similarly, the reflection of an overhead light on a table with a shiny surface may produce so much glare that it makes it hard to locate objects or perform tasks.

Aging also causes peripheral vision loss. Peripheral vision loss is a bit like wearing blinders on the sides of the head so that one can only see what is directly in front of oneself. Glaucoma, or increased pressure within the eye, is the most common cause of peripheral vision loss. Strokes may also reduce peripheral vision. In contrast, with central vision loss, people can see things in the periphery of their vision but not directly in front of themselves. What they see may even appear distorted. Central vision loss most often occurs due to macular degeneration, which is deterioration of the central area of the retina.

People with Alzheimer’s disease often experience reduced perception of contrasts, because they have poor depth perception and can’t distinguish well between different colors, especially closely matched colors. In addition, they can easily become visually distracted, especially if trying to do things in cluttered and visually busy spaces.

Another common barrier to activities is hearing loss, which often occurs with aging. With hearing loss, it is very difficult to separate background noise from people’s voices. So following conversations and instructions is even more difficult in a noisy setting.

Modifying the Environment

Modifying environments for optimal participation in activities includes removing, or reducing any barriers to participation.

One sensory barrier that can be easily removed is excessive background noise. When competing sounds from TVs, radios, stereos, or other appliances are kept to a minimum, it is easier for people with dementia, especially those who are hard of hearing, to function.

One way to reduce visual barriers is by eliminating glare. Glare can be so severe that it can cause eye strain and discomfort, and prevent a person from being able to do tasks. Good lighting will not help a person with Alzheimer’s to function if lighting conditions cause glare. Understanding the causes of glare helps in finding effective ways to eliminate it. Direct glare occurs when light sources are not properly shielded, so it is helpful to use shades, blinds and sconces. Direct glare can also result when natural light coming in through windows is much stronger than the ambient light in a room, so it is important to balance the intensity of natural daylight with the intensity of indoor light.

Reflected glare occurs when strong light bounces off hard, smooth surfaces. Polished vinyl floors and waxed table tops can appear like pools of water or as blinding hot spots to older people with dementia. It is best to use non-reflective floor and table coverings. Area rugs can be used on shiny wood or linoleum floors, though when used, it is strongly suggested that their edges be firmly attached to the floor to prevent fall hazards. Shiny table surfaces can be covered with fabrics and tablecloths.

Modifying the Environment (Continued)

To improve participation, begin by reducing clutter in the activity environment. Visual clutter makes it much harder for those with Alzheimer’s to pick out what they should focus on.

Set out only those objects needed to accomplish a task. For example, to help someone dress as independently as possible, set out, on a bed or a dresser, only the clothes the individual will wear that day.

Present objects one at a time in the order needed. For example, hand clothing items one at a time, ensuring that they are put on in the proper order.

Put like objects with like objects. For example, assign one drawer of a dresser for underwear, one for socks, one for t-shirts, and one for pants. Similarly, the same kind of items can be grouped together in closets.

Provide orienting signs and cues. For example, use post-it notes or labels on doors around the home or residential facility to remind people which rooms are what, like the bathroom or their bedroom.

Ensure that any medical necessities like hearing aids are operable and being used, and that eye glasses are clean and positioned properly. You may also want to provide handheld magnification for detailed tasks.

Provide visual contrasts. For example, use light letters on dark backgrounds. You can also reduce visual barriers by creating a consistent and even distribution of light in a room to avoid shadows and glare. Shadows and dark areas may be frightening to someone with Alzheimer’s.

Combine ambient lighting with focused lighting for tasks. Ambient lighting is that which lights an entire room or space, such as the natural light of the sun or overhead lighting. Focused lighting provides light to a specific area of space. If possible, lamps used for task lighting should be flexible, allowing for control over the direction of the lighting.

Occupational Spaces

Creating Individual Spaces

Positive environments provide places for individualized activity and work. Create special, personalized workspaces to encourage individuals to engage in familiar activities. Try setting up comfortable chairs around a small work table with good task lighting in someone’s living space, and put favorite items within reach. By providing objects for use that are simple and familiar, you increase the likelihood that people with dementia will continue to engage in activities that they can still successfully do on some level.

Such an arrangement can be sufficient for some people to initiate activities on their own. For example, a woman who loves flowers may spontaneously water a plant in her room. A man who used to do jigsaw puzzles or play cards may, of his own initiation, start working on a simple puzzle or deal himself a hand of solitaire if those items are within reach on or near a table. A person who enjoys handling money may take pleasure in the tasks of sorting and counting change and putting it into wrappers. Having ready access to a jar of change and wrappers makes such activities possible. Someone who loves to knit, but cannot anymore, may take pleasure in rolling or sorting yarn by color. Someone who enjoys physical activity may, of their own accord, sweep a floor if a broom is within reach.

Creating Social Environments

Occupational spaces often encourage social interactions and gatherings. They should allow for people to sit and interact with one another in a comfortable setting. Something as brief and fleeting as petting an animal or holding a young child can bring immediate pleasure to those with dementia, eliciting their engagement and reminding them what they love about life. Planned, special events such as birthday celebrations or holiday gatherings are also great sources of pleasure and socialization.

It may help to create interest points around the occupational space to encourage exploration and observation. Outdoor bird feeders and inside aviaries or aquariums provide opportunities to watch living creatures. Religious symbols or altars provide opportunities to pray, meditate, and reminisce. Tapestries and other artwork that are designed to be touched and explored can be mounted on walls. Indoor plants and flowers offer opportunities for touch, smell and visual appreciation.

Any of these activities can be meaningful to people.

Summary

In summary, activity-focused dementia care includes activities that are meaningful to a person and meets that person’s needs or wants. Activity-focused care is person-centered and abilities focused care. Person-centered care focuses on individual needs and wants. It takes into consideration the care recipient’s history, personal preferences, habits and routines. Caregivers should learn about the person’s meaningful life experiences, past roles and accomplishments, cultural norms, and values. Part of person-centered care is incorporating personally meaningful activities into the daily lives of those with dementia.

To create an optimal environment or occupational space for activities, modifications should be made to compensate for an individual’s vision and hearing loss as well as the mental limitations due to Alzheimer’s disease. Positive occupational spaces should provide access to familiar tasks that use retained skills and abilities, and are consistent with former roles or interests. Activities tend to be easier if they are repetitive in nature and have clear outcomes. Spaces should have comfortable chairs, a work table, good lighting, easy access to favorite items and activities, provide interesting objects for enjoyment and discussion, and accommodate social interactions.

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Written by: Wendy Wood, PhD, OTR, FAOTA (University of New Mexico)

Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)

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