Welcome to the educational program Activity-Focused Dementia Care: Preventing Excess Disability and Difficult Behaviors. This program will teach you about excess disability and help you understand how activity-focused care can prevent it. It will also provide some strategies for using meaningful activities to reduce agitation and other difficult behaviors and to promote overall well-being. Lastly, it will show you how activity-focused care can enhance caregiver satisfaction and well-being.
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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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Models of Dementia Care
Activity-focused dementia care incorporates meaningful activities into the daily lives of those with dementia. It can include any kind of activity that is meaningful to a person and meets that person’s needs or wants. Therefore an activity can be any personally meaningful occupation. When we broaden our understanding of the full range of activities that can be included in activity-focused care, we become better able to enrich the daily lives of those with dementia.
Activity-focused care is part of person-centered care, which focuses on individual needs and wants. In person-centered care, caregivers interact with care recipients based on knowledge of and deep respect for them as a unique human beings. It takes into consideration their personal preferences, characteristic habits and routines. Caregivers should learn about the person’s meaningful life experiences, past roles and accomplishments, and cultural norms.
Activity-focused care is also abilities-focused care. In abilities-focused care, caregivers deliberately identify and encourage the use of an individual’s retained skills and capacities including physical, motor, cognitive, emotional, social and communicative. The goal of abilities-focused care is to compensate for dementia-related problems and limitations and to focus on using remaining abilities to allow for successes.
The very best activity-focused care occurs when all those involved in caregiving participate to provide meaningful activities throughout the day.
Need for Occupation
Engaging in meaningful occupations is important for maintaining health and well-being. This need for occupation doesn’t disappear just because a person is old or has dementia.
Imagine if we were forced to do nothing at all for a day, a week, a month, or a year! As time went on, we would grow more and more miserable and agitated and would question if we were losing our minds. This is because the human body needs to engage in activities to maintain physical and mental health. Not doing things over long periods of time can diminish one’s health and well-being. Additionally, having nothing to do can lead to agitation and other difficult behaviors.
Engaging in meaningful activities can provide a sense of usefulness and enrich daily life. It enables continuation of familiar lifestyles, lifelong habits, and supports values and interests.
Excess disability refers to any disability or functional decline that is over and above what is expected from the brain damage associated with the dementia. One way of describing excess disability is that it is caused by the lack of use of one’s skills — and not by dementia-related changes. It often results when use of existing skills is repeatedly discouraged or not encouraged. When people with dementia are discouraged from participating in activities, they quickly lose their skills and become more disabled than they otherwise would be.
Excess disability also hastens functional decline. When people with dementia suffer from excess disability, they experience much faster declines in functional abilities than they would if their remaining skills were regularly used in meaningful activities.
Excess disability is also associated with passivity, social withdrawal and depression.
Case Study 1Why do you think Robert has stopped trying to dress himself?
- A) Robert has forgotten how to dress himself.
- B) Robert has become more confused about what to wear.
- C) Robert is depressed.
- D) Robert isn’t encouraged to dress himself.
- E) All of the above.
Choice A: “Robert has forgotten how to dress himself” is a possibility.
People with dementia can experience apraxia and forget how to perform activities of daily living.
Apraxia refers to the loss of the ability to carry out automatic movements and actions, such as those needed for dressing. Before Robert’s Alzheimer’s disease had progressed to its current stage, he could still dress himself without having to think about every step that was required. Due to progressive brain damage, however, Robert has lost some of the automatic actions and skills needed for dressing himself.Choice B: “Robert has become more confused about what to wear” is another possibility.
The progressive nature of Alzheimer’s disease has made Robert less able to make good judgments about clothes. For example, he may not be able to associate being cold with the need to put on a sweater or jacket. Or he may not remember that it is socially inappropriate to go to dinner in a public dining room in his underwear. Robert’s abilities to sequence the actions involved in dressing may also have become more limited. So for example, he may no longer be aware that his underwear should be worn under his pants and not over them.
Choice C: “Robert has become more depressed” is another strong possibility.
He may no longer have any interest in getting himself dressed or even in getting out of bed in the morning.
Using Activity-Focused Care
Activity-focused care helps prevent excess disability. When a person with dementia is helped to remain as physically, mentally, and socially active as possible, it will help maintain that person’s skills and interests in life for as long as possible, even with the progression of dementia. In fact, some skills can be regained if a person is enabled to use those skills in meaningful activities. This is called reverse excess disability.
Activity-focused care is able to prevent and even reverse excess disability because it is abilities-focused care. Abilities-focused care deliberately and strategically identifies a person’s retained skills and capacities and encourages their use to compensate for dementia-related limitations.
Caregivers must recognize these dementia-related limitations and compensate for them by providing positive environments with activities that are modified for success using those retained capacities. So activities should be set up so that those with dementia can perform the tasks that they are still capable of doing. Furthermore, caregivers should only assist with the tasks that care recipients can’t do for themselves. For example, in a craft project, if some people are not able to use scissors safely, then pieces can be precut for them so that they can assemble them for themselves.
Abilities-focused care can be used to both prevent and to treat excess disability after it has occurred. Thus, were Robert once again encouraged to dress himself and provided only with the help necessary to complete the task successfully, his dressing skills and motivation to dress would likely increase again. So Mary could offer Robert choices between two preselected shirts and two different pants. Then she should encourage him to put on his clothes by himself and assist with fastening buttons, for example, if he needed help.
Doing ‘With,’ Not ‘For’
“Doing with, not for” is a good way of understanding why activity-focused care is also abilities-focused care. By doing with and not for other people, caregivers treat their care recipients with dignity and respect.
In our previous example, Mary did things for Robert, and not with him. Mary should have intervened only enough to help Robert through each step of dressing as was necessary to compensate for his dementia-related problems and impairments, instead of doing everything for him.
Though Mary was only trying to help by doing things for Robert, she prevented him from using his remaining skills and capacities.
Use It or Lose it
The link between using ones skills and abilities, and maintaining or losing them can be summed up in a simple phrase: Use it or lose it!
When people use abilities in activities that have meaning to them, their abilities are maintained and perhaps even improved. But if people stop doing these activities, their skills grow weaker and may even disappear. Exercise is a great example. People who exercise are far more likely to maintain a high level of physical fitness and coordination abilities than those who don’t. But if a woman who used to exercise regularly becomes inactive, her fitness level and movement skills will decline.
Even doing something seemingly as simple as shaving with a safety razor blade would be more difficult after months of using an electric razor, because one wouldn’t be as well-practiced and coordinated for that particular task.
People with dementia are highly vulnerable to losing whatever skills they still have when they stop participating in activities that use those skills. Like all people, they naturally lose skills that aren’t being used. They are additionally vulnerable, because they are dependent on knowledgeable and compassionate caregivers to help them keep participating in everyday activities to the best of their abilities. This is where activity-focused care comes in.
Using Retained Capacities
Caregivers should carefully assess their care recipients’ retained capacities in the categories of physical, motor, cognitive, social, and communicative capacities.
Retained physical and motor capacities include walking safely without physical assistance, reaching for and holding onto a familiar tool, and coordinating the use of the tool to accomplish a purposeful task. Motor skills include movements for meaningful activities (like raking) and the physical strength and conditioning to complete the activity.
Retained cognitive capacities include selective attention, or the ability to maintain attention on a task; sequencing, which is the ability needed for executing tasks that have multiple steps; and recognition of purpose, which helps people to carry out activities from beginning to end and to sustain engagement in a task.
Retained social and communicative capacities refer to the ability to understand verbal and nonverbal language and to demonstrate appropriate social behavior.
Retained emotional skills and capacities include the ability to experience the positive emotions of interest and pleasure as well as the ability to control negative emotions and calm down when given reason to do so.
After assessing a person’s remaining capacities, caregivers should try to modify their caregiving and plan activities to encourage and promote these capacities.
Case Study 2
Let’s look at an example with Robert, who has early to mid-stage Alzheimer’s and lives with his wife, Mary.
Robert is still able to dress himself and eat all of his meals without assistance. Outside of mealtime and planned activity time, Robert spends much of his day pacing anxiously up and down the hallways and rummaging in his bedroom and in other rooms.
- A) No, Mary should not try to do anything because she provoked Robert by coming into the room.
- B) No, there’s nothing that Mary can do because brain damage caused by Alzheimer’s disease has made Robert agitated.
- C) Yes, Robert could be given calming medications.
- D) Yes, Robert could be given something meaningful to do.
Case Study 2 Answers:
Choice A: “No, Mary should not try to do anything because she provoked Robert by coming into the room” is not a good answer.
This answer conveys some misunderstandings about agitation and its causes. While it is possible that Robert and Mary may have had angry interactions in the past, this answer doesn’t explain why Robert was agitated even before Mary approached him. Robert was anxiously rummaging through her belongings, a sign of agitation that suggests that Robert was looking for something or needed something to do. But because of his dementia, Robert wasn’t able to properly communicate his needs or meaningfully occupy his time without help.
Choice B: “No, there’s nothing that Mary can do because brain damage caused by Alzheimer’s disease has made Robert agitated” is also not a good answer.
We know that as Alzheimer’s progresses, causing more and more damage to the brain, affected individuals are more likely to become frightened, because they no longer recognize their surroundings. As a result, agitated behaviors often increase. Those with dementia have a much harder time coping with everyday life and behaving in socially acceptable ways. It is similar to how irritable you feel when you are extremely tired and can’t think straight.
Robert’s agitated behavior is strongly related to the fact that his brain has been damaged by the progression of Alzheimer’s. However, what is incorrect about this answer is the idea that nothing can be done to prevent Robert from becoming agitated or to help him calm down after he has become agitated.
Choice C: “Yes, Robert could be given calming medications” is not the best answer.
It is a better answer than choices A or B, because it acknowledges that something can be done to reduce Robert’s agitation. However, giving medication to prevent agitation or to calm people down after they have become agitated should be an intervention of last resort.
In the past, agitation and other difficult behaviors associated with dementia were often treated mainly with medications. Today, however, we understand that sedatives—as a first and primary line of defense against agitation—may seriously limit the quality of life of those with dementia by limiting their ability to engage in satisfying life activities. Medications can also have negative side effects.
Choice D: “Yes, Robert can be given something meaningful to do” is the best answer.
As is true for most people, those with dementia experience boredom and anxiety when they have nothing to do. Unlike those of us without dementia, however, people with dementia are dependent on caregivers to help them participate in activities that have meaning to them. In Robert’s case, Mary could have asked him if he needed something and then tried to distract him by suggesting another activity such as gardening or painting.
Activity-focused dementia care can help reduce restlessness, agitation and other difficult behaviors.
It is important to remember that all behaviors have meaning. Persons with dementia often lose their verbal communication skills, so caregivers must learn to read non-verbal messages to determine what may have caused the difficult behavior. Check for unmet needs, and look for environmental triggers.
Knowing the person you care for and understanding what happens to the brain as the disease progresses will help you to realize why certain behaviors are occurring. There are many difficult and challenging behaviors observed in persons with dementia, which for the most part, occur because they are frustrated or frightened. Physical aggression, delusions, agitation, sleep disturbance, and anxiety are common difficult behaviors that affect the quality of life for caregivers and care recipients.
Preventing Difficult Behaviors
One way that activity-focused care helps to prevent difficult behaviors from occurring is by addressing a person’s need to engage in meaningful activities. When someone with dementia is helped to do meaningful things throughout the day, that person will be less likely to become anxious, restless, or distressed.
If someone is agitated, activity-focused care is also often helpful in redirecting that person towards positive and satisfying experiences. Redirecting people by using meaningful activities to engage them is a useful technique for reducing distress or agitation before difficult behaviors escalate. This benefits both the person with dementia and the caregiver.
Enhancing Caregiver Well-Being
Not only does activity-focused care improve the quality of life for those with dementia, it also helps caregivers experience greater satisfaction, reward and joy from helping others live as well as possible.
Activity-focused care helps to support positive emotional experiences and shifts negative emotional states like anxiety and anger into positive ones. Caregivers can also find gratification in helping people to use their remaining capacities, which reduces caregiver burden and stress. It reduces difficult behaviors such as crying out, repeated questioning, shouting, hitting, and pacing. This provides caregivers with more opportunities for pleasant and rewarding experiences. Although memories of past events and interactions may be quite limited, people with dementia nevertheless come to trust caregivers who treat them with dignity and respect. This trust helps both parties do what they want or need to do. When caregivers respect the wants and needs of their care recipients and enable their optimal participation in meaningful activities, then strong, mutually satisfying relationships develop.
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. When using this approach, caregivers deliberately seek to identify and encourage the use of an individual’s retained skills and capacities by creating opportunities to participate in meaningful activities and social interactions. Activity-focused care compensates for dementia-related problems and limitations by putting individuals into more positive situations and modifying activities to cater to an individual’s retained capacities. Activity-focused care can prevent and even reverse excess disability through the continued use of skills in meaningful activities. Without encouragement in activities, those with dementia quickly lose their abilities and motivation.
Activity-focused dementia care can also help reduce agitation and other difficult behaviors. It addresses the need to engage in meaningful activities, reduces restlessness, and provides positive and satisfying experiences.
This approach to caregiving will lead to greater satisfaction and quality of life for all those involved.
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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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