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This course has been approved by the Florida Department of Elder Affairs, Florida Policy Exchange Center on Aging. Approval number SAADC 8461.
Certified Trainer: The author is certified as an ADRD trainer by the Florida Department of Elder Affairs and is available via e-mail at Lauren@ATrainCeu.com or by phone Monday-Friday from 9 a.m. to 5 p.m. (Pacific Time) at 707 459 1315.
This training is for those who have direct contact with clients in specialized Alzheimer's adult day care centers. It is designed to increase your awareness and understanding of Alzheimer's disease and related dementias.
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This course will be reviewed every two years. It will be updated or discontinued on August 28, 2020.
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Approved by the Florida Department of Elder Affairs, Florida Policy Exchange Center on Aging. Approval #SAADC 8461.
When you finish this course you will be able to:
Alzheimer’s disease (AD) is the most common cause of dementia. About 5 million people in the United States live with the effects of Alzheimer’s, making it our sixth leading cause of death. About two-thirds of Americans with Alzheimer’s disease are women (Alzheimer’s Association, 2017).
Adult day service centers provide non-residential coordinated services in a community setting for less than a day. There are three types: (1) social, (2) medical/health, and (3) specialized (providing programs for people with dementia) (Siegler et al., 2015). In Florida, a specialty license is needed to provide services as a Specialized Alzheimer’s Services Adult Day Care Center (O’Keefe, 2014). There are approximately 4,800 adult day service centers in the United States (Rome et al., 2015) serving nearly 300,000 people (Harris-Kojetin et al., 2016).
Did You Know. . .
Adult day care is a program of therapeutic social and health services as well as activities for adults who have functional impairments. Services are provided in a protective, non-institutional environment. Participants may utilize a variety of services offered during any part of a day, but for less than a 24-hour period.
The social model is designed for individuals who need supervision and activities but not extensive personal care and medical monitoring. The medical model provides more extensive personal care, medical monitoring, and rehabilitative services in addition to structured and stimulating activities (O’Keefe et al., 2014)
In Florida, there are approximately 287 adult day care centers, that provide therapeutic programs, social services, and health services, as well as activities for adults in a non-institutional setting (AHCA, 2017). Overall, approximately one-third of adult day care clients have Alzheimer’s disease or a related disorder (Harris-Kojetin et al., 2016). Although it is common for adult day care centers to cater to a significant number of clients with dementia, there are approximately 15 specialized adult day care centers in Florida specifically designated to treat clients with dementia. The specialized centers enroll a higher percentage of clients with dementia and require specialized dementia training for their staff.
Adult day care clients are younger and more racially and ethnically diverse than users of other long-term care services. More than one-third of adult day care clients are non-white, 17.3% of services users are non-Hispanic black, and 20.3% of services users are Hispanic (Harris-Kojetin et al., 2016).
Two-thirds of participants attend at least 3 days/week (Siegler et al., 2015). Normally the client is collected by a transport service and brought home again at the end of the day. Day care relieves the family caregiver of nursing duties and is effective in reducing caregivers’ subjective burden and depression. The degree of usage of day care varies from 4.2% to 61.0% (Donath et al., 2011).
In this course we will discuss Alzheimer’s disease and other common types of dementia from the perspective of workers and clients in a specialized adult day center. We will describe how dementia affects the brain and how Alzheimer’s disease differs from other types of dementia. We will go over behaviors you may see in people with mild, moderate, and severe dementia and discuss communication issues you might see at different stages of dementia.
The course will also describe activities you can do with your clients and how to assist them with their activities of daily living. We will describe family issues and stressors for people caring for someone with dementia and will share some innovative ideas about “therapeutics environments” as well as how to recognize and handle ethical issues in your clients with dementia.
Alzheimer’s disease and other types of dementia are caused by damage to the brain. The most significant and obvious damage occurs in the critically important part of the brain called the cerebrum. The cerebrum fills up most of our skull and is divided into four lobes (one on each side of the brain):
The four lobes of the cerebrum, plus the cerebellum and the brainstem. Alzheimer’s disease starts in the temporal lobe. Copyright, Zygote Media Group, Inc. Used with permission.
The cerebrum allows us to think, form memories, communicate, make decisions, plan for the future, and act morally and ethically. It also controls our emotions, helps us make decisions, and helps us tell right from wrong. The cerebrum also controls our movements, vision, and hearing. When dementia strikes, brain cells in the cerebrum begin to shrink and die. As the damage progresses, brain cells are no longer able to communicate with one another as well as they did in the past. Not surprisingly, as more and more brain cells are damaged, connections are lost, pathways are disrupted, and eventually people with dementia lose many brain functions.
The human brain has two other important parts: the cerebellum and the brainstem. Touch the back part of your head just below the occipital lobes. The cerebellum is right there. It is involved with coordination and balance.
The cerebellum and brainstem are at the back of your head below the cerebrum. Used with permission.
Now move your hand a little down and stop before your get to your spine. The brainstem is right there—at the back of the head, above your spine. It connects the brain to the spinal cord. The brainstem oversees automatic functions such as breathing, digestion, heart rate, and blood pressure. Although it is possible for the brainstem and cerebellum to be damaged by stroke or traumatic injury, they are generally not affected by dementia.
The brain is a communications center consisting of billions of neurons, or nerve cells. It is the most complex organ in the body. This three-pound mass of gray and white matter is at the center of all human activity—you need it to drive a car, to enjoy a meal, to breathe, to create an artistic masterpiece, and to enjoy everyday activities. The brain regulates your body’s basic functions; it enables you to interpret and respond to everything you experience and shapes your thoughts, emotions, and behavior (NIDA, 2014).
Networks of neurons pass messages back and forth among different structures within the brain, the spinal cord, and the nerves in the rest of the body (the peripheral nervous system). These nerve networks coordinate and regulate everything we feel, think, and do (NIDA, 2014). Dementia interrupts the efficient function of these networks, affecting every aspect of a person’s life.
Dementia is a group of symptoms impacting cognitive functions such as memory, judgment, reasoning, and social skills as well as interfering with the ability to function in daily life. It is progressive, meaning it gets worse over time. Alzheimer’s disease (AD) is the most common kind of dementia. AD begins in the area of the brain that makes new memories. That’s why someone with AD forgets something that happened just a moment ago.
Alzheimer’s disease isn’t the only cause of dementia and, unfortunately, there is no way to know for sure what type of dementia a person has. There is no blood test or x-ray that can diagnose Alzheimer’s or other types of dementia. The only sure way to know if someone had Alzheimer’s disease is to examine their brain after they die.
Symptoms are a little different in each type of dementia. It’s good to know the difference to help you understand why someone is acting the way they are. Characteristics of Alzheimer’s dementia will be described in module 2.
Look at the picture of the brain below. Put your hand on your forehead. The part of your brain just behind your forehead is called the frontal lobe. Now slide your fingers from the front to the side of your head (your temple). This part of the brain is called the temporal lobe.
Damage to the brain’s frontal and temporal lobes causes forms of dementia called frontotemporal disorders. Copyright, Zygote Media Group, Inc. Used with permission.
There is a type of dementia that affects this part of the brain. It is called frontal-temporal dementia. It is thought to be the most common type of dementia in people under the age of 60. It’s not nearly as common as Alzheimer’s and it starts at a much younger age.
We use the front part of our brain to make decisions, to tell right from wrong, to control our emotions, and to plan for the future. Someone with dementia in this part of the brain will have poor judgment and lose the ability to tell right from wrong. They also have less control over their behavior.
So instead of losing short-term memory like people with Alzheimer’s disease, a person with frontal-temporal dementia might start doing things that are confusing to their friends and family. They might steal, even though they have never stolen in the past. They might make inappropriate sexual remarks or engage in inappropriate sexual behaviors, even though they’ve never done these things in the past.
Vascular dementia is caused by lots of small strokes. This can happen when people don’t control their high blood pressure. Generally, vascular dementia doesn’t affect memory as much as Alzheimer’s. This is because the damage is spread throughout the brain. Vascular dementia causes mood changes that are stronger than the mood changes you might see in someone with Alzheimer’s. It can also affect judgment—but not as strongly as in someone with frontal-temporal dementia.
You might have cared for more than one client with vascular dementia because many older adults have high blood pressure that isn’t under good control. You may also see vascular dementia in someone who has had a stroke.
Microscopic image of a Lewy body. Courtesy of Carol F. Lippa, MD, Drexel University College of Medicine. Source: Alzheimer’s Disease Information and Referral Center.
Lewy body dementia is less common than Alzheimer’s dementia, frontal-temporal dementia, or vascular dementia. It is responsible for a little less than 5% of all cases of dementia. People with Parkinson’s disease can have this type of dementia. Lewy body dementia happens when tiny unwanted molecules form in the brain. These unwanted molecules (Lewy bodies) become scattered throughout the brain.
People with Lewy body dementia usually don’t have problems with memory, at least at first. But they can have hallucinations, mental changes, and sudden confusion. These symptoms can come and go throughout the day. Lewy body dementia can also affect sleep and cause a person to suddenly faint or pass out. This means a person with Lewy Body dementia is at high risk for unexpected falls.
Comparison of Dementia Types
Type of Dementia
Characteristics and Symptoms
Alzheimer’s disease (AD)
Dementia with Lewy bodies
A view of how Alzheimer’s disease changes the whole brain. Left side: normal brain; right side, a brain damaged by advanced AD. Source: Courtesy of The Alzheimer’s Association. Used with permission.
Dementia changes the entire brain. In Alzheimer’s disease, nerve cells in the brain die and are replaced by abnormal proteins called plaques and tangles. As the nerve cells die, the brain gets smaller. Over time, the brain shrinks, affecting nearly all its functions.
Alzheimer’s disease usually affects memory and emotional control before other symptoms are obvious. Other types of dementia, because the damage is to another part of the brain, will have different symptoms. Although dementia can start in one part of the brain, eventually it will affect the entire brain.
We all experience physical and mental changes as we age. Some people become forgetful when they get older. They may forget where they left their keys. They may also take longer to do certain mental tasks. They may not think as quickly as they did when they were younger. These are called age-related changes. These changes are normal—they are not dementia.
Age-related changes don’t affect a person’s life very much. Someone with age-related changes can easily do everything in their daily lives—they can prepare their own meals, drive safely, go shopping, and use a computer. They understand when they are in danger and continue to have good judgment. They know how to take care of themselves. Even though they might not think or move as fast as when they were young, their thinking is normal—they do not have dementia.
The table below describes some of the differences between someone who is aging normally and someone who has dementia.
Normal Aging vs. ADRD
AD or other dementia
Occasionally loses keys
Cannot remember what a key does
May not remember names of people they meet
Cannot remember names of spouse and children—don’t remember meeting new people
May get lost driving in a new city
Get lost in own home, forget where they live
Can use logic (for example, if it is dark outside it is night time)
Is not logical (if it is dark outside it could be morning or evening)
Dresses, bathes, feeds self
Cannot remember how to fasten a button, operate appliances, or cook meals
Participates in community activities such as driving, shopping, exercising, and traveling
Cannot independently participate in community activities, shop, or drive
In some older adults, memory problems are a little bit worse than normal age-related changes. When this happens, the person has mild cognitive impairment, also called MCI.
Mild cognitive impairment isn’t dementia. You won’t generally see personality changes, just a little more difficulty than is normal with thinking and memory. For some people, mild cognitive impairment gets worse and develops into dementia, but this doesn’t happen with everyone.
Other Causes of Dementia. http://teepasnow.com/resources/teepa-tips-videos/dementia-101/
Diagnosis of Alzheimer’s disease and other types of dementia is based on symptoms; no test or technique that can diagnose dementia. Nevertheless a thorough examination that includes a physical exam, blood work, biopsychosocial interview, family interview, and a neuropsychological evaluation should be completed.
Neuroimaging shows promise is assisting with early diagnosis of Alzheimer’s disease by detecting visible, abnormal structural and functional changes in the brain (Fraga et al., 2013). Magnetic resonance imaging (MRI) can provide information about the shape, position, and volume of the brain tissue. It is being used to detect brain shrinkage, which is likely the result of excessive nerve death. Positron emission tomography (PET) is being used to detect the presence of beta amyloid plaques in the brain.
To guide clinicians, the National Institute on Aging and the Alzheimer’s Association (NIA-AA) has developed the following diagnostic guidelines indicating the presence Alzheimer’s disease:
Each type of dementia has its own set of characteristics. A characteristic is a feature or quality you would typically expect to see in a disease. One characteristic of frontal-temporal dementia is that it starts at an earlier age than Alzheimer’s.
One of the first things you will notice in someone with Alzheimer’s disease is that they have trouble making new memories. This is called short-term memory loss. This happens because the part of the brain that forms new memories is damaged by dementia. You may also notice that long-ago memories are still intact—this is because the areas of the brain that store long-term memories are not as affected by Alzheimer’s dementia. Especially at first, people can remember and talk about events from earlier times in their lives. As the dementia progresses and more parts of the brain are affected, long-term memories may also start to fade.
One way to describe the progression of Alzheimer’s disease, as well as other types of dementia, is in “stages.” Stages are usually described as mild, moderate, and severe or early, middle, and late. Even though disease progression differs from person to person, we nevertheless associate certain symptoms and behaviors with these stages. The type of dementia, along with a person’s underlying medical condition, general health, family support, and co-morbid conditions can affect how fast and how far the dementia progresses from one stage to another.
Did You Know. . .
Although this course will discuss the stages of dementia as mild, moderate, or severe, the National Institute on Aging and the Alzheimer’s Association have published guidelines aimed at improving current diagnosis, strengthening autopsy reporting of Alzheimer’s brain changes, and promoting research into the earlier detection of Alzheimer’s disease. The guidelines describe three stages of Alzheimer’s disease: (1) preclinical Alzheimer’s disease, (2) mild cognitive impairment, and (3) Alzheimer’s dementia.
In the early stages of AD, before symptoms can be detected, plaques and tangles form in and around the hippocampus, an area of the brain responsible for the formation of new memories (shaded in blue). Source: The Alzheimer’s Association. Used with permission.
In the early, mild stage of Alzheimer’s disease, plaques and tangles begin to damage the temporal lobes in and around the hippocampus. The hippocampus is part of the brain’s limbic system and is responsible for the formation of new memories, spatial memories, and navigation—and is also involved with emotions.
At this stage, changes that have been developing over many years begin to affect memory, decision-making, and complex planning. A person with mild dementia can still perform all or most activities of daily living such as shopping, cooking, yard work, dressing, bathing, and reading but will likely begin to need help with complex tasks such as balancing a checkbook and planning for the future.
In a study by the National Institutes on Aging involving 62 participants, researchers used neuroimaging to assess changes in brain volume and cerebrospinal fluid amyloid levels. Immediate recall (the ability to remember events that occurred in the past few minutes) was the first memory function to show signs of deterioration. Delayed recall (the ability to remember more distant events) declined at a later stage of the disease, but at a more rapid rate than immediate recall. This finding suggests that tests of immediate recall may be more useful for detecting Alzheimer’s during early stages of the disease, while tests of delayed recall may be better suited to tracking it at later stages (NIA, 2015).
In mild to moderate stages, plaques and tangles (shaded in blue) spread from the hippocampus forward to the frontal lobes. Source: The Alzheimer’s Association. Used with permission.
As Alzheimer’s disease progresses from the mild to moderate stage, plaques and tangles spread forward to the areas of the brain involved with language, judgment, and learning. Speaking and understanding speech, spatial awareness, and executive functions such as planning, judgment, and ethical thinking are affected. Many people are first diagnosed with Alzheimer’s disease in this stage.
In the moderate or middle stage, work and social life become more difficult and confusion increases. Damage spreads to the areas of the brain involved with:
In advanced Alzheimer’s, plaques and tangles (shaded in blue) have spread throughout the cerebral cortex. Source: The Alzheimer’s Association. Used with permission.
In the advanced or severe stage of Alzheimer’s disease, damage is spread throughout the brain. At this stage, because so many areas of the brain are affected, people’s ability to communicate, to recognize family and loved ones, and to care for themselves is severely affected.
People with severe dementia lose memory of recent events although they may still remember events from long ago. They are easily confused, are unable to make decisions, cannot clearly communicate their needs, and can no longer think logically. Speech, communication, and judgment are severely affected. Sleep disturbances and emotional outbursts are very common.
Although in general dementia gets worse over time, other types of dementia can progress differently from Alzheimer’s disease. Because vascular dementia is caused by a stroke or series of small strokes, dementia may worsen suddenly and then stay steady for a long period of time. If the underlying cardiovascular causes are successfully addressed, dementia may stabilize.
In Lewy body dementia, which is often associated with Parkinson’s disease, symptoms—including cognitive abilities—can fluctuate drastically, even throughout the course of a day. Nevertheless, the dementia is progressive and worsens over time. In the later stages, progression is similar to that of Alzheimer’s disease.
In frontal-temporal dementia, which starts at an earlier age than Alzheimer’s disease, symptoms nevertheless progress over time. In the early stages, people may have difficulty with just one type of symptom, such as planning, prioritizing, or multitasking. Other symptoms appear (inappropriate behaviors and comments, difficulty recognizing and responding to emotions) as more parts of the brain are affected.
In frontal-temporal dementia, which lobe of the brain is affected affects which symptoms first appear. If the disease starts in the part of the frontal lobe responsible for decision-making, then the first symptom might involve difficulty managing finances. If it begins in the part of the temporal lobe that connects emotions to objects, then the first symptom might be an inability to recognize potentially dangerous objects—for example, a person may not fear reaching for a rattle snake or plunging a hand into boiling water (NIH, 2014).
A symptom is a change in the body or the mind. A behavior is how we act, move, and react to our environment. Symptoms change as dementia progresses, often affecting behavior. For some people symptoms can worsen quickly. For others, symptoms progress more gradually—over 10 to 20 years. A good way to understand this is to look at how symptoms and behaviors change in the early, middle, and late stages of dementia.
The early or mild stage of dementia begins with mild forgetfulness, especially memories of recent events. Forgetfulness might be the most obvious symptom at this stage, especially in Alzheimer’s disease. Logical thinking and judgment are mildly affected, especially in frontal-temporal dementia.
In the early stage of Alzheimer’s disease, as well as in other types of dementia, there might be a little confusion with complex, multi-step tasks. People naturally try to cover up mild confusion so friends, coworkers, and family might not notice that something is wrong. This behavior can be tiring, frustrating, and concerning for the person experiencing the first signs of cognitive change.
Even when symptoms are mild, people’s behavior can begin to change, especially in Alzheimer’s disease. People with mild dementia often know something is wrong, which can cause depression, stress, and anxiety. Mood changes are common, particularly in someone with vascular dementia.
People struggling with the effects of mild dementia may become angry or aggressive. They might have difficulty making decisions. They will ask for help more often. They still might be able to work, drive, and live independently, but they will begin to need more help from family or coworkers.
In the moderate stage of dementia, people become more forgetful and confusion worsens. Speech and communication are obviously affected. Judgment and logical thinking are much worse than in the early or mild stage.
Because of memory problems and confusion, caregivers must take over tasks that the person with dementia was able to do in the past. In this stage, travel, work, and keeping track of personal finances are much more difficult.
In the moderate stage, behavior changes are much more obvious. Inappropriate behaviors such as cursing, kicking, hitting, and biting are not uncommon. Some people may begin repeat questions over and over, call out, or demand your attention. Sleep problems, anxiety, agitation, and suspicion can develop.
A person with moderate dementia is usually still able to walk. This is because the part of the brain that controls movement is not affected. If a person can still walk or if they can get around easily in a wheelchair, they might begin to wander. More direct monitoring is needed than during the early stage of dementia. During this stage, people are no longer safe on their own. Caregiver responsibilities increase. This causes stress, anxiety, and worry among family members and caregivers.
My mom is 96 years old and has pretty severe dementia. She lives at home with 24/7 care. If we put her in a nursing home she would not survive. Loud noises, people that don’t know her needs and habits, boredom, loneliness—those things would drive her crazy. I’m sure she’d wander, yell, swear, shout, hit, and cry. At home she almost never does any of these things but we work pretty hard to keep things quiet, warm, and steady for her.
Family Caregiver, Fremont, CA
People with severe dementia lose most or all memory of recent events although they may still remember events from long ago. They are easily confused, lose much of their ability to think logically and sequentially, and find decision-making very difficult. Speech, communication, and judgment are severely affected. Sleep disturbances are very common.
All sorts of challenging behaviors can occur in people with severe dementia—especially if caregivers are untrained, easily frustrated, or highly stressed. Wandering, rummaging, or hoarding can occur. A person may become paranoid or have delusions or hallucinations. Screaming, swearing, crying, shouting, loud demands for attention, negative remarks to others, and self-talk are common. These outbursts are often triggered by frustration, boredom, loneliness, depression, cold or heat, loud noises, and pain.
In the severe stage, a great deal of independence has been lost and around-the-clock care may be needed. Caregivers will likely need to oversee and directly assist with eating, bathing, walking, dressing, and other daily living activities.
As people with dementia approach the end of life they may lose all memory—not just memory of recent events. They are startled by loud noises and quick movements. They can no longer communicate their needs and desires using speech. At this stage, people can develop other illnesses and infections. They may experience agitation, psychosis,* delirium,** restlessness, and depression.
*Psychosis: loss of contact with reality.
**Delirium: a sudden, severe confusion that can be caused by infections, a reaction to medications, surgery, or illness.
At the end of life, people are completely dependent on caregivers. They may be unable to eat, swallow fluids, or move without help. Dementia becomes so severe that people may become bedridden. Severe dementia frequently causes complications such as immobility, swallowing disorders, and malnutrition that significantly increase the risk of serious acute conditions that can cause death. One such condition is pneumonia, which is the most commonly identified cause of death among elders who have Alzheimer’s or other dementias (Alzheimer’s Association, 2017).
I’ve been hired to help care for a woman with mild dementia. She has five kids who come to their mother to discuss their personal problems. When they talk about their problems I noticed the mom always agrees with them but when they leave she turns around and says “I can’t stand to hear all their complaints.”
She gets really agitated after they visit. Sometimes she sits and cries for the rest of the day I can’t snap her out of it. She didn’t used to be like this. I get so tired it almost isn’t worth it—I never get any sleep when I’m there. I finally had to cut back from 7 to 4 days—it was really difficult caring for this woman.
Professional Caregiver, Los Altos, CA
A caregiver is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Each year, nearly 16 million family members and friends provide over 18 billion hours of unpaid care to those with Alzheimer’s and other dementias (Alzheimer’s Association, 2017).
Caregivers help with basic activities such as bathing, dressing, walking, and cooking. They also help with more complex tasks such as managing medications and taking care of the home. Caregiver’s can provide direct care or manage care from a distance. Dementia caregiving is usually the responsibility of the spouse or an adult child.
Caring for aging adults with dementia is associated with increases in burden, distress, and declines in mental health and well-being. Caregiving for individuals with dementia is more stressful than caregiving for individuals with many other diseases. This is because dementia caregiving is characterized by specific problems such as the lack of free time, isolation from others, behavioral problems and personality changes, and fewer positive experiences resulting from the lack of expressed gratitude by the care recipient (Elnasseh et al., 2016).
The responsibilities of caregiving can be overwhelming. More than half of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high. About 40 percent of caregivers report symptoms of depression. One in five caregivers cut back on their own doctor visits because of their care responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver (Alzheimer’s Association, 2017).
Family dynamics are an important part of the caregiving experience. Family communication, adaptability/flexibility, and marital cohesion have all been connected to the emotional functioning of caregivers. Depression and anxiety are more likely to occur among caregivers in families with poor functioning, and conflicted family dynamics can intensify caregiver depression and caregiver strain. The poor functioning of families is likely to result in a decrease in the time spent on patient care, potentially impacting the quality of care the individual with dementia receives (Elnasseh et al., 2016).
Conversely, healthier family dynamics, such as family support, are associated with lower levels of caregiver strain. When families give more support to primary caregivers, they are often able to provide more help to the individual with dementia. Caregivers experience less burden and depression when family cohesion is high, and greater family communication also plays an important role in reducing caregiver burden (Elnasseh et al., 2016).
Even though the majority of research has focused on burden and other negative aspects of family caregiving, positive aspects have been presented, including a sense of meaning, a sense of self-efficacy, satisfaction, a feeling of accomplishment, and improved wellbeing and quality of relationships. These positive experiences can help sustain family members in their work as caregivers (Tretteteig et al., 2017).
In the early stage of dementia, family caregivers may not know much about dementia and may not seek help. They may be confused and frustrated when their family member “acts funny.”
During this time, caregiving responsibilities and duties can usually be handled by family members. The person with dementia may only need help with complex activities such as banking, bill paying, medical appointments, and medications. People with mild dementia may still live alone, drive, and even have a job. They can usually handle activities of daily living such as bathing, eating, and cooking.
In the moderate stage, the time needed to care for a previously independent person increases. It can cause anxiety, stress, sleep disruption, anger, and depression. Loss of free time, work conflicts, and family issues may seem impossible to resolve. Often the responsibility of caregiving falls mostly on one person—generally a woman—leading to anger and frustration with other family members.
In the later stages of dementia, when fulltime care is needed, family members face difficult decisions and primary caregivers can become overburdened. Should the person with dementia move in with a family member? Should a full-time caregiver be hired? Should their loved one be admitted to a long-term care facility?
Behaviors such as agitation, irritability, obscene language, tantrums, and yelling are embarrassing, tiring, and frustrating for caregivers. Caregivers can be injured if a person throws things, strikes out, or bites. Caregivers may react out of fear and strike back or yell to stop these behaviors, creating guilt and more frustration.
I’m exhausted. I can’t sleep because I have to watch out for my wife. She wanders around the house, takes out all kinds of stuff from the kitchen. I never know what she’s going to do.
Family Caregiver, 2017
In this stage, safety is a challenge for caregivers. A one-on-one caregiver may be needed during the day. Spouses and family members become exhausted tending to a person who needs constant supervision. Jobs, hobbies, friendships, travel, and exercise fall to the side. Caregivers often neglect their own health, causing more stress.
If the person with dementia is still living at home, caregivers try to provide more support. Family members may find it impossible to continue to provide care and may decide to move their loved one to an assisted living or skilled nursing facility. Although this reduces caregiver burden, it does not relieve spouses and family members of the stress of continuing to worry about and manage care for their loved one.
My mom struggles for words—she tries to explain something by saying “you know—that thing” and then gets frustrated when I don’t understand. When I read the newspaper to her, the articles get jumbled up in her head and she doesn’t know when one article ends and another starts. So I just read short articles, Miss Manners, that sort of thing. I tell her “that’s the end of the article about former President Obama—this is a new article about the weather back east.”
Think about the last conversation you had with a friend or family member. You said what you wanted to say. You understood the conversation and remember what was said. You probably had the conversation while doing something else—fixing breakfast or getting ready for work. You had no trouble understanding the conversation even if there was a lot of noise in the background.
When communicating with a person who has dementia, there are several things to keep in mind. What is the level of the person’s dementia? Is there a hearing loss? What is the setting? Are you having a general, social conversation or do you have a specific goal or task in mind?
A person with dementia has to work harder than you do to say what they want to say. They might not remember what was said a few moments ago and they have trouble talking and doing something else at the same time. Background noise can be confusing and irritating.
General conversations are friendly and informal. They are not usually related to a specific task or goal. General conversations are social, a way to greet people and find out how they are doing. You can begin a general conversation by offering a greeting and asking for an opinion or giving an opinion. You can make a suggestion or ask for an explanation.
A general conversation can be about yourself, about your work day, your hobbies, or your family. It can include positive comments about people you work with or other family members or caregivers. If there is another person nearby you can include that person in the conversation.
You can connect with people by learning about what they liked when they were younger. What music was popular? Who was president? What major events happened in their younger years? Did they serve in the military? Where did they work? Where did they travel? What were their interests and hobbies?
People with dementia—especially moderate or severe dementia—may have difficulty with general conversations. They have difficulty understanding complex questions or statements. For example, instead of stringing together several thoughts or statements it is better to break down your greetings, statements, or questions into short, simple sentences. Listen carefully and use your judgment to determine if the person understood you. Although they may not remember what you talked about yesterday they still want to hear what you have to say, even if you are repeating something said earlier.
Dementia affects goal-directed conversations just as much as it affects general conversations. When you want to complete a specific task, use what is called a “closed question.” This shows interest and invites a person to respond. Ask, for example, “Are you hungry?” or “Are you ready to get dressed?” Closed questions limit the conversation and keep the conversation focused on the task at hand.
Talk slowly and don’t argue. Use gentle persuasion and be positive when giving directions. Share your goals with the resident. Be respectful and relaxed. Keep in mind that the person you are caring for may not share your goal or agree with what you are asking. Or they may not understand what you want. It is very common for caregivers to mistake a response for understanding. At times, we all fake our understanding of a conversation—even those of us without dementia. The following story featuring Randy and Ann illustrates this point. Think about what you would do in this situation.
Randy in the Morning
Randy has moderate dementia. He lives at home with 24-hour care. He can still get up and dress himself without help. This morning Randy got dressed and is resting in a chair next to his bed. Ann, a homecare aide, enters his room and calls out to him, “Come on Randy. Are you hungry? Did you sleep well? Time for breakfast! Stand up. Let’s get you to the kitchen.” Randy doesn’t move, so Ann tries again, “Come on, Randy, get up! You don’t want your breakfast to get cold, do you? I don’t think so. Come on Randy, I’m really busy!” Ann takes his arm and helps him stand up. Randy pulls away and sits back in his chair.
What Is Randy Thinking?
Randy is comfortable and a little sleepy. He’s not sure what time of day it is. He isn’t hungry. A young woman he doesn’t know has barged into his room and is saying something to him in a loud voice. He is trying to figure out what she is saying—when she says something else. Her voice is loud and he grimaces a little. He is not sure what she wants. She grabs his arm and he supposes he should go with her but she is being too pushy and this makes him mad. So he pulls away from the young woman and sits back in his chair. He turns his head and tries to ignore her, hoping she will go away.
What Is Ann Thinking?
Ann is really busy. The regular homecare worker called in sick so she was asked to cover at the last minute despite having just completed a shift at the local nursing home. She is tired and wants to get Randy to the kitchen for breakfast. After breakfast she wants Randy to take a shower. When she enters his room she is relieved to see that Randy is already dressed and up in a chair. She tells him it’s time for breakfast, takes his arm, and tries to help him stand up. Randy seems confused and he pulls away. Ann repeats what she had just said, only more loudly. She reaches for him again but he turns away, crosses his arms, and refuses to budge.
What Could Ann Have Done?
Ann should enter Randy’s room quietly and respectfully after knocking on the door to get Randy’s attention. She should ask “May I come in?” and wait for Randy’s reply. Approaching Randy more slowly, squatting next to him, and introducing herself gives Randy a chance to understand who she is. A pause at the end of each sentence gives Randy time to respond. “Hi, Randy.” Pause. “I’m Ann—I’ll be helping you today.” Pause. “How are you?” Pause. “It’s 9 a.m.” Pause. “Time for breakfast.” Pause. If Randy doesn’t respond, Ann can repeat what she just said in a calm voice or ask another short, closed question: “Randy, are you hungry?” Pause. Now Randy only has one simple statement to think about and he is more likely to understand and respond. Ann must remember that Randy doesn’t have to do what she asks. It’s okay for Randy to have his breakfast in his room or even skip breakfast and eat when he is hungry.
Verbal communication is communication with words. It is an important part of daily life. Verbal communication creates positive relationships and lets us know that someone cares. It allows us to express our feelings and gives us the opportunity to assess the well-being of the person we are caring for.
A conversation with a person with dementia begins with eye contact and an introduction. Starting with something light and conversational such as the weather or what’s happening in the news puts people at ease. Nonverbal gestures such as head nods, a light touch on the arm, and a warm expression create trust.
No matter how severe the dementia, practice these habits:
Nonverbal communication is communication without words. Facial expressions, eye movements, hand gestures, body language, and movements of the arms and legs are examples of nonverbal communication. Tone of voice and how well you listen and pay attention are nonverbal skills that matter just as much verbal conversation.
How you dress, your posture, how you approach a person with dementia and how close you stand to a person are also examples of nonverbal communication. Even silence is a form of nonverbal communication.
Touch is a powerful form of nonverbal communication. Touch can be friendly, frightening, soothing, dominant, or supportive. Touch has different meanings depending upon your culture, gender, age, and situation.
The way you speak carries nonverbal information. Your tone can reveal calmness or impatience, affection or disapproval, confidence or fear. When you are talking, the loudness of your voice and its tone and rhythm are communicating additional information. If you are hurried, frustrated, or angry, a person will pick up on your mood and body language more quickly than your verbal communication.
How the environment looks is a form of nonverbal communication. A clean, nicely decorated room with good lighting is supportive. It encourages people to interact. A drab room with harsh lighting and little decoration has the opposite effect—it shows a lack of support and respect. Some studies have shown that people say they don’t like other people when they see them in unattractive rooms.
Nonverbal communication using hand gestures and unhurried movement reinforces your words. If the person does not answer right away, be patient and wait a bit. It’s okay to be silent, which is calming and reassuring—especially in social conversations.
People in the late stage of dementia may become unresponsive. This means they do not respond to what is happening around them. It does not mean they have no response—only that they can no longer communicate their wishes clearly using speech.
Communicating with a person who is unresponsive can be a challenge for family and caregivers. It’s difficult to know what the person is thinking or feeling. Fortunately, many of the techniques that work in the earlier stages of dementia are useful in this stage as well.
Assume that the person can hear and possibly understand even if they don’t respond. Use gestures and facial expressions to support what you’re trying to say. Give the person time to understand why you are there. Practice a calm, slow, and respectful attitude. You can communicate concern and caring by using pillows for neck, arm, and leg support, a warm blanket, and gentle repositioning. Mild range-of-motion exercises, gentle touching, and massage are reassuring.
Appropriate touch is a powerful form of communication and reassurance. Source: ADEAR, 2017a.
Touch can be a form of therapy and can include massage, therapeutic touch, reflexology, shiatsu, acupressure, and other hands-on techniques. Therapeutic touch can be used to decrease behavioral symptoms of dementia, specifically restlessness and vocalization (Oliveira et al., 2015).
Touch must always be applied appropriately and ethically, providing support and reassurance with the goal of decreasing pain or discomfort, calming anxiety, or relieving depression. As with other interventions, clients have the right to refuse care, including massage and touch.
Massage and touch are among the interventions used in dementia care with the aim of reducing depression, anxiety, aggression and other related psychological and behavioral manifestations. Expressive touch such as patting or holding a client’s hand involves emotional intent, for example, to calm a patient or to show concern, as opposed to instrumental/task–associated touch within nursing care (O’Neil et al., 2011).
A systematic review that examined touch interventions among other treatments for dementia identified a small study that found that an expressive touch intervention that involved 5.5 minutes a day of touching, including 2.5 minutes a day of gentle massage and 3 minutes a day of intermittent touching with someone talking, over a 10-day period decreased disturbed behavior from baseline immediately and for 5 days after the intervention (O’Neil et al., 2011).
Culture and language can impact a person’s response to touch. A person-centered approach encourages you to learn as much as possible about a client’s beliefs and values before providing treatment. Family members are an important resource if there is something you do not understand. Additional suggestions:
Keep the environment peaceful and avoid loud or sudden noises; the person has no way to tell you when a sound is annoying. Reduce discomfort and confusion by keeping the area around the bed or chair free of clutter.
No matter how unresponsive a resident is, practice these habits:
Everyone finds enjoyment engaging in activities they have enjoyed all their lives. An artist or musician may want to continue to paint or play an instrument. A carpenter or contractor might enjoy an activity board with nuts, bolts, screws. Enjoyment depends on the level of dementia, personal interests, and the person’s physical abilities.
A number of studies have suggested that carefully designed activities can have a positive effect on depression, confusion, and challenging behaviors (Ruthirakuhan et al., 2012). Structuring a program to include activities in each of the following three categories can positively influence cognition, general functioning, and overall quality of life:
The Montessori-based Activities for Person with Dementia has had some notable successes in the design of activity programs for people with dementia. This approach emphasizes matching a person’s abilities with the activity. It borrows from the concept of having older children teach younger children by setting up programs in which people with mild dementia serve as group activity leaders for those with advanced dementia.
Montessori-based activities promote engagement in learning by sequencing tasks from simple to complex, providing cues to successful completion, encouraging repetition, and carefully matching demands to individuals’ interests and levels of competence (van der Ploeg et al., 2012).
Montessori-type programs include detailed interviews with family caregivers about the person’s former interests and skills coupled with assessments of cognitive, language, and motor skills. A range of activities are then presented, tested, and refined. As dementia advances, the activities are simplified. Facilitators present tasks deliberately, demonstrating them first, and using language as appropriate. The main objective is to engage participants’ interest and involvement (van der Ploeg et al., 2012).
Individual activities involve a caregiver or family member and the person with dementia. Activities that stimulate the senses, such as cooking, singing, exercise, going for a drive, gardening, and aromatherapy, are encouraged at all stages of dementia. Taking care of an animal gives a sense of purpose and companionship and is a key component of person-centered care.
Successful activity programs for individuals with dementia are based on a person’s likes and interests. This means a caregiver must learn a person’s history and understand their capabilities and preferences. Determine whether a person can still read, write, or use a computer. Learn about the person’s lifestyle and determine what a person is physically capable of doing.
Adults often have a fear of failure (especially those aware of their cognitive decline) and may refuse to participate in activities because of this fear. Be consistent, have fun, and by all means introduce new activities. Look for signs of frustration and agitation and address these behaviors immediately.
Individual Activities for People Who Have Dementia
Knitting or crochet using large needles and bulky yarn
Choose colors, roll balls of yarn
Choose colors, use the items that are created
At home activities
Help with laundry with supervision, put clothes away, assist with housekeeping
Sort and fold laundry
Fold laundry—may want to fold the same items repeatedly
Many people with Alzheimer’s disease sense that their cognitive impairment isolates them from other people. This leads to anxiety, depression, societal withdrawal, and decreased self-confidence. Encouraging social interaction helps those with dementia regain a sense of self-worth and have a better attitude toward life. This may improve eating and exercise habits and social interactions, which in turn may result in improved AD prognosis (Ruthirakuhan et al., 2012).
People in the early stages of dementia may especially enjoy working with others. As dementia progresses, the person may be more likely to enjoy solitary activities. Small groups of 5 to 6 people are generally preferred because they allow more activity and personal attention, although well-planned large-group activities can also be successful.
Group Activities for People Who Have Dementia
Whatever the stage of the dementia, everyone appreciates meaningful activities. We like helping one another, teaching someone a new skill, and contributing to the success of an activity. Caregivers often make the mistake of doing everything for the person they are caring for, stripping them of any meaningful way to contribute, to help, to learn, and to grow as a person. Remember that everyone yearns for meaning in their lives. A good activity program can help accomplish that goal.
Caregiving is the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. It typically involves a significant expenditure of time, energy, and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting.
Richard Schulz and Lynn Martire
A caregiver is someone who provides assistance to a person in need, which can be physical, financial, or emotional in nature. Caregivers help with basic activities of daily living such as bathing, dressing, walking, and cooking, and with more complex tasks such as medication and home management. A caregiver may provide direct care or manage care from a distance and can be a family member, a neighbor, a friend, or a medical professional.
Caregiving is an evolving process with key transition phases. The onset of caring tends to emerge naturally from the customary family transactions that existed before the onset of dementia. Needs for care tend to increase over time, from increased support for household, financial, and social activities, to personal care, to what for some is almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013).
Whether paid or unpaid, most caregivers across most (if not all) cultures are women. Women are already likely to be relatively disadvantaged with respect to education, career opportunities, income, assets and (in older age) pension entitlements. Taking on caring responsibilities for a person with dementia can lead to social isolation, cutting back or stopping work, and risks to physical and mental health (ADI, 2015).
Providing care for a person with dementia places practical, psychological, and emotional stress on caregivers, which can lead to denial, anger, and depression. Caregivers overwhelmed by the demands of caring for someone with dementia can experience irritability, anxiety, and sleep disturbances. Many studies have documented a higher prevalence of depressive symptoms among caregivers, with the highest prevalence among those caring for someone with dementia (ADI, 2013).
The economic impact of caregiving is an additional stressor for caregivers. In an analysis of survey data conducted by the Organization for Economic Co-operation and Development (OECD) of caregivers of older people (not dementia caregivers specifically) a 1% increase in hours of care was associated with a reduction in the employment rate of caregivers by around 10% (ADI, 2013).
In a survey of American caregivers conducted by the Alzheimer’s Association, 13% had to go from working full- to part-time, 11% had to take a less demanding job, and 11% had to give up work entirely. Cutting back or giving up on work is associated with higher caregiver strain, while strain was reduced by hiring a paid caregiver, or having additional informal support (ADI, 2013).
The amount of stress experienced by caregivers is associated with caregiver demographics, personality, and their perception of their role as a caregiver, their coping strategies, and relationships they have outside of their caregiving role.
Factors and Characteristics Associated with Caregiver Strain
Characteristics associated with caregiver strain
Perception and experience of caregiving role
Reducing caregiver strain is possible when the caregiver receives education, training, support, and respite. These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care facility (ADI, 2013). Caregivers can also reduce their stress by paying attention to their own health. This means getting enough sleep, eating properly, seeing their own doctors, and sharing their feelings about their caregiving duties with co-workers, family, and friends.
Adult day care centers offer respite and support services and can provide relief for family caregivers, reduce caregiver burden, and increase caregiver motivation. A primary goal is to develop knowledge and skills in dementia care and prevent early institutional placement (Tretteteig et al., 2017). Adult day care centers:
Reducing caregiver stress
Things to avoid
Throughout the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In many developed countries, the vital caring role of families and their need for support is often overlooked. In developing countries, the reliability and universality of the family care system is often overestimated (ADI, 2013).
Family caregivers provide what is referred to as “informal care.” They are often cast into the role of caregiver unexpectedly and are largely unpaid or “nearly” unpaid. The need for personal care assistance among this population creates a tremendous burden on family and society. Currently, about half of people who need help with personal care have dementia (ADI, 2013).
The system of informal unpaid care provided by family members is under pressure due to declining fertility rates and fewer young people willing to care for older adults. Changing attitudes and expectations among the young as well as increased workforce mobility mean that family members are not always living nearby their older adult relatives. The education of women—the majority of informal caregivers—has led to more workforce participation and less availability for informal care (ADI, 2013).
The majority of people with dementia live in the community, and for approximately 75% of these individuals, care is provided by family and friends. The largest proportion of caregivers is spouses, followed by children and children-in-law, mostly female. The typical profile of a dementia caregiver is a middle-aged or older female child or spouse of the person with dementia (Brodaty & Donkin, 2009). Caring for a person with dementia is time-consuming and, on average, caregivers spend 14 hours per week assisting with basic ADLs and up to 43 hours per week when more complex assistance and supervision are needed (ADI, 2013).
In the early stage of dementia, family members must begin to adjust their own behaviors and manage their own frustrations as they learn about the early effects of dementia. They are often unaware of available dementia-care services and may find their family member’s primary care physician of little help. Spouses who care for a person with dementia may not be in good health themselves and may worry about not being able to provide good care as the dementia progresses. An adult child may have to take over care of the parent and assume a new role in the family.
Nevertheless, caregiver burden is usually manageable in the early stages of dementia. Direct care is generally not needed and caregivers can often leave their family member alone for periods of time.
Early, specialized training is recommended. This is an essential but often neglected component of dementia care. Training can prepare family caregivers for what lies ahead and allow them to partner more easily with healthcare providers to provide competent and compassionate care.
As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, often involving tiring tasks leading to high levels of burnout. Depression, along with symptoms of burnout, poor self-rated health, highly perceived stress, and lower levels of life satisfaction are factors that begin to affect the caregiver’s health. At this stage, perhaps due to a lack of time, family caregivers are also less likely to engage in preventive health behaviors. As a consequence, they are at risk for serious illness, increased emergency department use and hospitalization, and increased risk of mortality (Lykens et al., 2014).
The increased need to handle practical tasks can be a physical burden for family caregivers, especially those in poor health. Many of these caregivers do all the cooking and cleaning and take care of the laundry (Tretteteig et al., 2017). As the need for help increases, family members must decide whether to hire a private caregiver, which can be costly.
At this stage, family caregivers’ cumulative stress is associated with increased nursing home placement, institutionalization, or hospitalization of the patient with dementia. Thus, caring for a patient with dementia can undermine the health and well-being of both the patient and the caregiver (Lykens et al., 2014).
In the late stages, as people lose the ability to communicate clearly, family caregivers will struggle to find new ways to understand the needs of their loved ones. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, and physical gestures such as grasping at undergarments, which may communicate the need to use the bathroom.
One of the most difficult issues—usually in the middle to late stages of dementia—is the decision to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:
Relinquishing full-time care can cause feelings of loss, sadness, resignation, and depression for family caregivers. Paradoxically, placement of a loved one in a care facility may do little to alleviate the stress that caregivers experience.
Once a family member has moved to a care facility, family caregivers must learn to navigate a complicated healthcare system. Healthcare workers can support family members by determining the preferences, abilities, and resources of each family member. Regular face-to-face meetings with family members and facility staff will help families work through difficult conflicts.
The diagnosis of dementia may cause a personal crisis in which the person with dementia experiences grief related to the actual or anticipated losses associated with the diagnosis (Vroomen et al., 2013). Good support following the initial diagnosis helps people adapt and provides opportunities to develop coping responses.
Grief can manifest itself in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. Psychological symptoms associated with grief include clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse.
Losses for the person with dementia include:
Losses for family members and caregivers include:
Supportive interventions to address grief should include counseling, assessment of co-morbid conditions, information about dementia, caregiver training, and development of a care plan. If there is a need to move to a care home, this causes grief and loss for the person with dementia and for caregivers. People with dementia newly admitted to an institution are often disoriented and feel a loss of control over their lives (Vroomen et al., 2013).
When a loved one dies, family members, and especially spouses, experience a period of acute grief that generally includes intrusive thoughts,* intense emotional distress, and withdrawal from normal daily activities. This period, along with the chronic grief that follows, may vary in length and intensity from individual to individual and often resembles clinical depression (Monk et al., 2013).
*Intrusive thoughts: unwanted, involuntary thoughts, images or ideas that can be obsessive, distressing, or upsetting.
When a spouse dies, about 28% of surviving spouses experience major depression. This risk of depression appears to peak during the first six months of bereavement, although depressive symptoms can be present for up to two years. Even bereaved persons with minor depression may suffer, for they have a greater likelihood of functional impairment, poorer health, more physician visits and mental health counseling, and increased use of antidepressants than do non-bereaved individuals (Monk et al., 2013).
When the person enters long-term care, family interactions and communication tend to be reduced. This is particularly the case when work pressures are present, when the family member lives a long distance from the care facility, and when family members feel they have a limited role in the provision of care. The loss of in-depth communication, as well as social conversations, can result in people with dementia feeling socially isolated and unable to express their needs (Moyle et al., 2104).
One way to improve this situation is to encourage family members to become involved in a facility’s dementia care program. Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the daily, individual needs of clients. The quality and success of a dementia care program is strongly influenced by facility’s environment, philosophy of care, available services, and staff experience and training. A dementia care program:
A dementia care program should include cues and themes to help clients remain oriented to their environment, electronic door security for safety, comfortable and familiar furniture, specialized foods and beverages, and regular personalized group and individual activities.
Providers who care for residents with dementia need to be specifically “dementia-trained” because of the unique challenge this group presents. Training should include knowledge of disease trajectory, symptoms, approaches to care, goals of care, palliative care measures, end of life issues, signs of impending death for persons with dementia, and how to interact with residents and families.
Tilly and Fok, 2007
The responsibilities of caregiving can be overwhelming, especially for spouses, family members, and friends. If spouses (and even adult children) are in poor health they may be unable to take on the burdens of fulltime caregiving. Even trained healthcare providers can find it difficult to deal with demented patients day in and day out.
To be successful, caregivers must be able to differentiate dementia from other illnesses and understand how to manage difficult behaviors should they arise. Healthcare providers must be able to take a deep breath, slow down, listen, and find effective ways to communicate.
For both professional and family caregivers, training and education are critical. Training introduces caregivers to resources, support, and equipment to improve health and safety. Education reduces psychological and physical strain while delaying or avoiding transition into care homes (ADI, 2015).
Culture has an impact on the family caregiving experience. In research involving feedback from 35 caregivers representing four groups (African American, Asian American, Hispanic American, and European American) there were significant differences in the cultural values that shaped the caregiver experience. Caregiving was seen as “right and correct” by all of the focus groups. However, for some of the groups, caregiving was an expected part of life that was passed down from generation to generation. In fact, caregiving was so embedded in the life experience for some of the groups that the decision to care or not to care was irrelevant; caregiving was just something that was done without question (Pharr et al., 2014).
To provide care for one’s family or community was deeply rooted in the culture, arising “naturally” without conscious thought. This perspective was shared by Asian American, Hispanic American, and African American focus group participants who reported seeing many examples of caregiving, not just within their own families but throughout their communities. In fact, it was so culturally ingrained to care for family that, when the time came, care was provided without question. For Asian Americans, caregiving was described as just a normal thing to do (Pharr et al., 2014).
The onset of dementia and its gradual progression inevitably leads to changes in personality and behavior. Geriatrics specialists refer to these changes as behavioral and psychological symptoms of dementia (BPSD) or neuropsychiatric symptoms of dementia (NSP). It is estimated that up to 90% of dementia patients will eventually experience challenging behaviors associated with their dementia (Passmore, 2013).
The exact cause of Alzheimer’s disease and other types of dementia is still unknown. In Alzheimer’s disease, and likely in other forms of dementia, damage within the brain is related to a so-called pathologic triad: (1) formation of beta-amyloid plaques; (2) disruption of a protein called tau, leading to the formation of neurofibrillary tangles; and (3) degeneration of cerebral neurons (Lobello et al., 2012).
But these pathologies explain only a part of the cognitive decline in older adults and a large part of the cognitive impairment in late life remains unexplained (White et al., 2017). Approximately a third of Alzheimer’s dementia cases may be attributed to seven potentially modifiable risk factors: diabetes, midlife hypertension and obesity, smoking, depression, cognitive inactivity, and low educational attainment (Killin et al., 2016).
Genetics likely plays a role in the development of some types of dementia, especially early-onset Alzheimer’s disease. Early-onset Alzheimer’s disease occurs between a person’s thirties and mid-sixties and represents less than 10 percent of all people with Alzheimer’s. Some cases are caused by an inherited change in 1 of 3 genes, resulting in a type known as early-onset familial Alzheimer’s disease, or FAD. For other cases of early-onset Alzheimer’s, research suggests there may be a genetic component related to factors other than these three genes (ADEAR, 2017b).
In all, nearly twenty different types of dementia have been identified and symptoms are a little different in each type. Knowing the differences will help you understand why someone with dementia is acting the way they are.
Challenging behaviors increase demands on staff and can increase job-related stress, burnout, and staff turnover. For clients with dementia who are experiencing behavioral and psychological symptoms of dementia, the cost of care is three times higher than that of other nursing home clients. About 30% of these costs are related to the management of disruptive behaviors (Ahn & Horgas, 2013).
Changes in personality and behavior can range from disinterest and apathy to agitation, disinhibition,* and restlessness. Behavioral interventions can be used along with medications to create a structured, safe, low-stress environment that promotes regular sleep and good eating habits, minimizes unexpected changes, and employs redirection and distraction (DeFina et al., 2013).
*Disinhibition: a loss of inhibition, a lack of restraint, disregard for social convention, impulsiveness, poor safety awareness, an inability to stop strong responses, desires, or emotions.
Conditions other than dementia can affect cognition, causing dementia-like symptoms; some of these conditions are reversible with appropriate treatment (NINDS, 2013):
Delirium and depression can also affect cognition and are particularly prevalent and often overlooked or misunderstood in older adults. Both conditions can be superimposed on dementia, particularly in older hospitalized patients.
Delirium is a syndrome with an acute onset and a fluctuating course. It develops over hours or days and is temporary and reversible. The most common causes of delirium are related to medication side effects, hypo or hyperglycemia (too much or too little blood sugar), fecal impactions, urinary retention, electrolyte disorders and dehydration, infection, stress, metabolic changes, an unfamiliar environment, injury, or severe pain.
The prevalence of delirium increases with age, and nearly 50% of patients over the age of 70 experience episodes of delirium during hospitalization. Delirium is under-diagnosed in almost two-thirds of cases or is misdiagnosed as depression or dementia. Early diagnosis of delirium can lead to rapid improvement. However, diagnosis is often delayed, and problems remain with recognition and documentation of delirium by healthcare providers (Hope et al., 2014).
Depression is a disorder of mood involving a disturbance of emotions or feelings. The diagnosis of depression depends on the presence of two cardinal symptoms: (1) persistent and pervasive low mood, and (2) loss of interest or pleasure in usual activities. Depressive symptoms are clinically significant when they interfere with normal activities and persist for at least two weeks, in which case a diagnosis of a depressive illness or disorder may be made.
The terms agitation and aggression are often used in reference to behavioral symptoms associated with dementia. Agitation refers to observable, non-specific, restless behaviors that are excessive, inappropriate, and repetitive. This can include verbal, vocal, or motor activity (Burns et al., 2012).
Aggression is characterized by physically or verbally threatening behaviors directed at people, objects, or self. Aggressive behaviors are generally perceived as a threat to the safety of those with dementia and to those around them, which includes family caregivers, staff, and other residents. Aggression is often described by specific acts and includes:
Agitation and aggression occur in about 50% to 80% of nursing home residents with cognitive impairments (Ahn & Horgas, 2013). Men are more likely than women to engage in overtly aggressive behaviors. Cognitively impaired people are more likely to engage in non-aggressive physical behaviors (such as pacing). Functionally impaired people are more likely to engage in verbally agitated behaviors (complaining, vocal outbursts) (Pelletier & Landreville, 2007).
Agitated and aggressive behaviors almost always result from loss of control, discomfort, or fear and are common ways to communicate discomfort (Pelletier & Landreville, 2007). People may become agitated or aggressive if they feel threatened or feel their personal space is being invaded. This is a common reaction with personal care tasks that require close contact, such as bathing or toileting.
Aggression may have a physiologic basis; it may be related to a decrease in the activity of serotonin or reduced transmission of acetylcholine in the brain. Frontal lobe dysfunction has also been implicated. Aggression may also be related to underlying depression or psychotic symptoms (Burns et al., 2012). Pain severity is positively associated with the frequency of agitated and aggressive behaviors. Nursing home residents with more severe pain are more likely to display these behaviors (Ahn & Horgas, 2013).
At some point during the course of their disease, people with dementia may wander or try to leave their home or facility without a companion, a behavior often called exit-seeking. Although there are no reliable estimates of the percentage of people who do this, more than half of people with dementia may wander at some point during the course of their disease. Wandering is a safety concern and one of the more challenging dementia-related behaviors for family and paid caregivers (Tilly, 2015).
Wandering can include aimless locomotion with a repetitive pattern, hyperactivity, and excessive walking, as well as leaving a safe environment and becoming lost alone in the community. Wandering can be goal-directed, in which a person tries to reach an unobtainable goal, or non-goal-directed, in which a person wanders aimlessly. Wandering patterns can include moving to a specific location, lapping or circling along a path or track, pacing back and forth, or wandering at random. The Alzheimer’s Association estimates that up to 60% of persons with dementia will “wander” into the community at some point during the course of their disease (Rowe et al., 2011).
Those with Alzheimer’s disease are more likely to wander than those diagnosed with other types of dementias. Wandering is more prevalent in men and in younger persons with dementia. Those with frontal-temporal dementia have a greater tendency to pacing and lapping behaviors whereas those with AD are more inclined to wander at random. Restlessness, with a compelling need for movement or pacing, has been linked to side effects of psychotropic medications, particularly antipsychotics (Burns et al., 2012).
Wandering is likely related to boredom, pain, discomfort, disorientation, and memory problems. People may wander out of habit or because they think something needs to be done, such as going home after work, walking the dog, getting exercise, or searching for something they think they have lost. A person’s pre-dementia lifestyle may be a factor in wandering. Studies have indicated that people with certain characteristics are more likely than others to wander:
Rummaging and hoarding refer to behaviors in which a person gathers, hides, or puts away items in a secretive and guarded manner. These actions are considered a type of obsessive-compulsive behavior. Rummaging and hoarding are not necessarily dangerous or unsafe but they can be frustrating for caregivers and clients.
Hoarding can be due to fear of losing money or possessions, lack of control, the need to “save for a rainy day,” or simply out of confusion. Hoarding is associated with insecurity and anger and may be an attempt to hold onto possessions and memories from the past.
Cognitive changes such as memory loss, poor judgment, and confusion can contribute to the impulse to rummage and hoard. People may rummage out of boredom or to find something they think has been misplaced. They may have a fear of being robbed or feel a need to protect their own possessions. Rummaging through familiar items may create a sense of safety and security. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for other clients.
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). Symptoms can include delusions, hallucinations, and paranoia, among others. A delusion is a false idea or belief or a misinterpretation of a situation. Hallucinations are sensory events in which a person hears, tastes, smells, sees, or feels something that is not there.
Delusions and hallucinations can be triggered by health factors such as urinary tract infections or environmental factors such as poor lighting or sensory overload. Changes in the brain can also contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
Visual hallucinations can occur in the moderate to severe stages of dementia and are particularly common in those with Lewy body dementia. While atypical antipsychotics are sometimes used off-label to manage hallucinations, in a person with Lewy body dementia, antipsychotic medications can make hallucinations worse. In a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications the person is receiving should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.
Delirium vs. Psychosis
It may be difficult to distinguish delirium from psychosis but it is important to understand the difference. Delirium (also called acute confusion) is a sudden, severe confusion with rapid changes in brain function and a fluctuating course. Delirium develops over hours or days and is temporary and reversible. Delirium can be caused by urinary tract infections or other simple infections, low sodium, constipation, dehydration, and a number of other underlying medical causes. It is important to review vital signs and check for these causes before concluding that a behavioral change is caused by psychosis.
Sleep disturbances are very common among older adults and are of particular concern in people with dementia. Sleep disturbances may contribute to the onset and severity of some behavioral problems, particularly anxiety, increased confusion, wandering, and sundowning.*
*Sundowning: increased confusion and restlessness in the late afternoon and early evening, possibly due to damage to the part of the brain that regulates sleep patterns.
Sleep disturbances may present with the following features:
Approximately one-quarter to one-third of those with Alzheimer’s disease have problems with sleep, partly due to the degeneration of neurons in the part of the brain that controls circadian rhythms (Deschenes & McCurry, 2009). Disordered sleep in dementia is a common reason for institutionalization and affects cognition, fall risk, agitation, self-care ability, and overall health and quality of life (Brown et al., 2014).
Sleep apnea, restless leg syndrome, medical and psychiatric issues, and environmental and behavioral factors often predate the onset of dementia. Chronic pain also interferes with sleep, and disturbed sleep reduces the pain threshold (Deschenes & McCurry, 2009).
Disordered sleep is also an issue for family caregivers. Providing home-based care to people with dementia can significantly affect the sleep of family members, and therefore their health and ability to cope with the emotional and physical demands of caregiving, all to the detriment of their continued ability to maintain the person with dementia at home. Support for caregivers is now understood as key for preventing institutionalization (Brown et al., 2014).
Medications used to treat the psychological and behavioral symptoms of dementia, as well as those used to slow the progression of dementia, can negatively affect daytime alertness and can cause sleep disturbances. Short-term sleep disturbances in people with dementia are often treated with antidepressants, benzodiazepines, or non-benzodiazepines. There is limited evidence to support their long-term safety in cognitively impaired older adults (Deschenes & McCurry, 2009).
Healthcare providers, service organizations, and care providers lack awareness regarding disordered sleep and sleep interventions for both people with dementia and for their sleep-deprived caregivers. Although nonpharmacological sleep interventions are effective for improving restorative sleep among older persons, the inaccurate belief is pervasive that reduced hours of sleep and decreased ability to sleep well in old age are “normal” aspects of aging. This mistaken belief, coupled with the reluctance of people with dementia and their families to seek help for sleep issues, contributes to the under-diagnosis and under-treatment of disordered sleep in this growing population (Brown et al., 2014).
Adult day care services can have a positive effect on sleep patterns. In a Norwegian study, caregivers reported that attending adult day care helped readjust the sleep patterns of the person with dementia: more activity during the day led to better sleep at night, which also meant better sleep for the caregiver (Tretteteig et al., 2017).
My mom has dementia and my sister and I take turns staying with her at her home. She used to get really agitated and angry in the evening—we blamed this on her dementia. We finally figured out that she gets cold—even when it’s warm outside. She doesn’t tell us but if we ask, she’ll say “I’m freezing.” Once we realized this, we ordered special heated slippers and also got her an electric blanket. It sounds simple but it took us a long time to figure it out because she doesn’t complain. Now she’s rarely agitated or angry in the evening!
Caregiver, Santa Rosa, California
The problem-solving approach encourages caregivers to look for the root cause of a behavior and treat it—usually with environmental modification, medication management, and caregiver training. The problem-solving approach allows caregivers and healthcare workers to identify critical points for intervention based on observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
The ABC approach is particularly effective when successful strategies are regularly shared by staff, caregivers, and family members and used to uncover the cause of a challenging behavior. The ABC method helps staff and caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.
Dementia-care mapping (DCM) is a problem-solving approach based on the idea that many of the ills that people with dementia experience are due to negative environmental influences, including staff attitudes and care practices (van de Ven et al., 2014).
Dementia-care mapping consists of three components: (1) systematic observation, (2) feedback to the staff, and (3) action plans. The action plans are developed by the nursing staff and are based on the observation of the actual needs of the clients. This method allows for initiation of interventions at the individual level and the group level, as well as at the levels of management and organization. In short, dementia-care mapping is an approach aimed at implementing diverse interventions to improve the quality and effectiveness of care (van de Ven et al., 2014).
Among many challenging behaviors associated with Alzheimer’s disease and related dementias, three stand out: aggressive behaviors, agitated behaviors, and wandering. Other challenging behaviors will arise, especially in the later stages. Rummaging and hoarding, delusions and hallucinations (psychoses), and sleep disturbances will be discussed here. This is by no means an exhaustive list and other challenging behaviors are sure to arise.
In general, challenging behaviors are best managed through the use of multidisciplinary, individualized, and multifaceted care, including psychosocial interventions and short-term pharmacologic treatment only when necessary (Burns et al., 2012). Before deciding on a course of action, a risk assessment, comprehensive assessment, and a determination of reversible cause or factors should be completed.
To understand and prevent agitation and aggression, consider the antecedent: What precipitated the behavior? Carefully observe the person and try to determine the cause of the agitation. Look for patterns. You can use one of the following scales to assess aggressive behaviors:
For agitated behaviors a number of instruments can be used to assess the different aspects of agitation:
Psychosocial and environmental interventions can be of help in reducing or eliminating agitated or aggressive behaviors. Touch, music therapy, massage, craniosacral therapy,* therapeutic touch, acupressure, and tactile massage have been shown to be successful for treating aggression. In addition, individual behavioral therapy, bright light therapy, and Montessori activities, and individualized, person-centered care based on psychosocial management are recommended (Burns et al., 2012)
*Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.
For people with dementia, antipsychotics may reduce aggression and psychosis, particularly among those most severely agitated. However, in older people, antipsychotics are associated with increased overall mortality, worsening cognitive impairment, hip fracture, diabetes, and stroke (Jordan et al., 2014).
Wandering can be a beneficial activity if there are safe places to wander, in and around a facility. An assessment of the reasons for wandering should include regular review of medications to make sure wandering is not the result of medication side effects, overmedicating, or drug interactions. The most important goal is to prevent a person from wandering into unsafe areas, other residents’ rooms, or eloping from the facility. Wandering can be addressed by:
Subjective barriers such as grid patterns on the floor in front of exit doors, camouflage, and concealment of doors and doorknobs have been shown to discourage a wanderer from exiting a building.
Did you Know. . .
In 2008 Florida enacted a Silver Alert program, which provides immediate broadcast of information to the public when a cognitively impaired person becomes lost while driving or while on foot. It allows local and state law enforcement to broadcast important information to citizens so they can assist local law enforcement in the rescue of the endangered person and notify law enforcement with helpful information. From 2008 through 2016 there were 1,441 Silver Alerts enacted in Florida. In 2016, 245 Silver Alerts were issued (SASC, 2016).
For more information, contact the Silver Alert information line, local law enforcement, or the Florida Department of Law Enforcement either online or by phone at 888 356 4774.
The Alzheimer’s Association has partnered with MedicAlert through the Alzheimer’s Association Safe Return Program to provide 24-hour assistance for those who wander. They maintain an emergency response line and immediately activate local chapters and local law enforcement to assist with the search for someone who has wandered off. The program includes an ID bracelet and a medical alert necklace. For more information call 800 625 3780 or visit the Alzheimer’s Association website (Alz.org).
To address rummaging and hoarding behaviors, try to determine what triggers or causes the behavior and look at the consequences, if any. Put yourself in the other person’s head—the reason for rummaging and hoarding may not be clear to you but there may be a perfectly good reason why someone with dementia is rummaging.
Rummaging through another person’s belongings can be prevented by installing locks on drawers and closets. The rummaging impulse might be satisfied by creating a rummaging room or a bag or drawer of items that the person can pick through. Restricting all rummaging and hoarding can be frustrating for a person who enjoys these activities.
In a home setting (and even in a healthcare setting), place important items such as credit cards or keys out of reach or in a locked cabinet. Consider having mail delivered to a post office box and check wastepaper baskets before disposing of trash. Other recommendations:
The first step in the management of delusions and hallucinations is to rule out delirium as a cause. Another important factor is to determine if the claims by the person with dementia actually did occur (Burns et al., 2012).
Observe the behavior and listen to what the person experiencing the paranoia or delusion has to say. Is the feeling pleasant or frightening? If the hallucination elicits a fearful or negative response, address the person’s need to regain comfort. For example, you may ask “What will make you feel safe?” “What will make you feel comfortable?”
When communicating with someone who is expressing paranoia or delusions, realize that even if their complaint is not true, it is very real for that person. It is best not to argue; simply explaining the truth of the situation will not work. Do not agree with the person or further validate the paranoia or delusion, but respond to the person’s emotion.
To manage hallucinations, the first step is to decrease auditory and visual stimuli. The second step is to have the person evaluated for visual or hearing impairment. Delusions and hallucinations can be addressed using behavioral interventions or, in some cases, antipsychotic medication. Atypical antipsychotics have largely replaced typical or traditional antipsychotics as the main treatment for psychosis, hallucinations, and delusions in those with dementia (Burns et al., 2012).
Here are some other suggestions for addressing hallucinations:
Before treating sleep disturbances, look for potentially treatable causes, which can include pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Some non-pharmacologic treatments that have been used successfully in nursing homes to treat sleep disorders include:
The Omnibus Budget Reconciliation Act of 1987 (OBRA 87) established a resident’s right to be free of restraints in nursing homes when used for the purpose of discipline or convenience and when not required to treat the resident’s medical symptoms. Related regulations specify that uncooperativeness, restlessness, wandering, or unsociability are not sufficient reasons to justify the use of antipsychotic medications (Agens, 2010).
Use of restraints should be:
In most states the use of physical and chemical restraints on nursing home patients is illegal. Florida has a Nursing Home Bill of Rights intended to protect residents’ physical and mental well-being. The bill of rights states that a nursing home resident has
. . . the right to be free from mental and physical abuse, corporal punishment, extended involuntary seclusion, and from physical and chemical restraints, except those restraints authorized in writing by a physician for a specified and limited period of time or as are necessitated by an emergency. In case of an emergency, restraint may be applied only by a qualified licensed nurse who shall set forth in writing the circumstances requiring the use of restraint, and, in the case of use of a chemical restraint, a physician shall be consulted immediately thereafter. Restraints may not be used in lieu of staff supervision or merely for staff convenience, for punishment, or for reasons other than resident protection or safety (Florida Statutes, 2016).
A physical restraint is defined by the Centers for Medicare and Medicaid Services (CMS) as “any manual method, physical or mechanical device, material, or equipment attached to or adjacent to the resident’s body that the individual cannot remove easily which restricts freedom of movement or normal access to one’s body.” Physical restraints can include belts, mittens, vests, bedrails, geriatric chairs, and other devices (Staggs et al., 2016).
Use of physical restraints has come under intense scrutiny because they can cause agitation, confusion, deconditioning, pressure ulcers, strangulation, adverse psychological effects and even death. Because of these potentially serious consequences, physical restraint use is part of public reporting for nursing homes through the CMS Nursing Home Compare website (Staggs et al., 2016). Several studies have demonstrated that carefully orchestrated restraint-reduction programming can greatly reduce the use of physical restraining devices (Lai et al., 2011).
Restraint also includes using (or threatening) force to make a person do something that they are resisting, and restricting their movements, whether or not they resist (Nuffield Council on Bioethics, 2009). The prevalence of physical restraint varies from 5% to 56% as reported in existing literature (Lai et al., 2011).
The use of physical restraints (including belts), can increase the risk of death or serious injury and can increase the length of a hospital stay. Their use may also indicate a failure to address the real needs of clients. Both prolonged and short periods of physical restraint use are associated with pressure sores, loss of muscle strength and endurance, joint contractures, incontinence, demoralization, humiliation, feelings of low self-worth, depression, aggression, and impaired social functioning (Gulpers et al., 2010).
The use of physical restraints creates an ethical dilemma by limiting a person’s autonomy. Their use is associated with increased instances of falling, the development of hospital-associated infections, and cognitive decline. Restraints also increase dependency in activities of daily living and walking (Lai et al., 2011).
A chemical restraint is the intentional use of any medications to subdue, sedate, or restrain an individual. Traditionally they have been used to restrict the freedom of movement of a patient—usually in acute, emergency, or psychiatric settings. Chemical restraints are typically prescribed for the shortest time possible for dangerous, uncontrolled, aggressive, or violent behaviors.
In older adults with dementia, psychotropic agents such as anti-anxiety, antidepressant, and antipsychotic medications are often used to treat the behavioral and psychological symptoms associated with dementia. These medications, which affect mood, perception, consciousness, cognition, and behavior can become a chemical restraint if used improperly and are often overused as a means of behavioral control in older adults with dementia (Peisah & Skladzien, 2014).
Atypical antipsychotics were approved by Food and Drug Administration (FDA) in the 1990s exclusively for the treatment of schizophrenia. Soon after, these medications became the new standard of care for behavioral and psychological symptoms of dementia.
In the older adult population, the largest number of prescriptions for atypical antipsychotics is written for delusions, depression, and agitation. Although neuropsychiatric symptoms affect up to 97% of people with dementia at some point during the course of their disease, it is important to note that no atypical antipsychotic is FDA-approved for the treatment of any neuropsychiatric symptoms in dementia (Steinberg & Lyketsos, 2012).
Several large clinical trials have consistently demonstrated an increased risk of mortality with the use of atypical antipsychotics in people with dementia. All atypical antipsychotics now carry a black box warning from the FDA about this risk, and a similar warning applies to conventional antipsychotics. Atypical antipsychotics are also linked to a two- to threefold higher risk of cerebrovascular events (Steinberg & Lyketsos, 2012).
The 2012 American Geriatric Society (AGS) Beers consensus criteria for safe medication use in elders recommend avoiding antipsychotics for treatment of neuropsychiatric symptoms of dementia due to the increased mortality and cerebrovascular events risk “unless nonpharmacologic options have failed and the patient is a threat to self or others” (Steinberg & Lyketsos, 2012).
A prescriber may choose to prescribe antipsychotic medications for behavioral and psychological symptoms associated with dementia and they may be effective in some cases. The prescriber must, however, disclose to the patient or family that the medication is being used off-label* and obtain permission to use it for behavioral symptoms.
*Off-label use is the practice of prescribing pharmaceuticals for an unapproved indication, age group, dose, or form of administration.
Attention to the misuse of antipsychotics, particularly the newer atypical antipsychotics, was brought to public attention by Lucette Lagnado, writing in the Wall Street Journal in December 2007. She reported that atypical antipsychotic drugs are often used “off-label” in nursing facilities as a substitute for adequate staffing and to quiet residents. She described several reasons for their use in nursing homes, including the 1987 Nursing Home Reform Law’s limits on the use of physical restraints, off-label marketing of antipsychotic drugs by drug companies, and insufficient staffing. Lagnado reported that Medicaid spends more on antipsychotic drugs than on any other class of drugs (Lagnado, 2007).
Many attempts have been made to reduce restraint use in clinical practice. Most interventions have used educational approaches, aiming to improve nursing staff knowledge and confidence to avoid physical restraints and to use alternative measures that target the resident’s underlying problems (Gulpers et al., 2010).
In a small Dutch study involving 30 residents, education, institutional changes, and alternative interventions resulted in a significant reduction in the use of belt restraints. Belts were replaced with resident-centered interventions such as movement and balance training, lower beds, hip protectors, extra supervision, and monitoring devices (video camera, sensor mat, and infrared alarm systems) (Gulpers et al., 2010).
Other strategies have been used as an alternative to physical restraints. Reducing clutter, keeping hallways free of equipment and obstacles, and liberal use of rails, grab bars, and transfer poles in rooms, bathrooms, hallways, and common areas is recommended. A friendly, uncluttered, home-like environment provides a safe and effective alternative to physical restraints. Other suggestions related to the environment:
Psychosocial policies and activities can also assist in reducing or eliminating the use of restraints. Establishing a routine, including a toileting schedule, will improve comfort and reduce anxiety. Regular exercise and comfortable places to rest and nap are important. Other psychosocial suggestions:
The “small things” of care are particularly important in ensuring that care is genuinely supportive of the individual, and enhances that person’s autonomy and well-being. The humanity with which assistance is offered, especially help with eating and intimate care, is crucial in helping the person retain their self-esteem and dignity.
Nuffield Council on Bioethics
Activities of daily living (ADLs) are the personal tasks we do during our daily lives. Because ADL skills tend to decline as dementia progresses, caregiver involvement naturally increases over time. ADLs are generally divided into two categories: basic ADLs and instrumental ADLs.
In adult day services programs, clients tend to need less assistance with ADLs than people in other long-term care settings, particularly with bathing, dressing, and toileting (Harris-Kojetin et al., 2016). In general, about one-third of day care clients need help with toileting, about one-quarter need help with eating, and about one-third need help with medication management. Nearly half need some assistance with walking and about one-third need help with transfers (Dwyer et al., 2014).
Instrumental or functional ADLs are the skills needed to function within society and within the community. These skills decline as dementia progresses. When a person is no longer able to perform basic math calculations, when insight becomes limited and memory is significantly compromised, financial and medical decision-making and medication management will shift to the hands of a caregiver. Pursuit of guardianship and capacity evaluations are not uncommon, especially when estate and legal issues need to be addressed (DeFina et al., 2013).
Basics ADLs (skills needed to take care of personal needs)
Instrumental ADLs (skills needed to function within the community and society)
Although there is often no clear demarcation between mild, moderate, and severe dementia, caregiver responsibilities will increase as ADL skills decline. In the early stage of dementia most people remain independent with basic ADLs. Most will begin to need help with instrumental ADLs—especially complex tasks requiring multiple steps or extensive planning. Basic activities of daily living such as eating, dressing, and bathing are likely still independent.
At this stage, a person will naturally try to cover up confusion by turning to others for help with simple tasks. This is a natural response and denial, anger, and excuses are common defense mechanisms. There may be some loss of interest in hobbies and activities. Mood changes, such as depression and anxiety, can occur. Learning new tasks may be difficult and complex tasks may be left uncompleted. Faulty judgment and mild changes in personality become obvious to caregivers.
As dementia progresses to the moderate stage, instrumental ADLs such as work, medication management, and management of personal finances become difficult or impossible. A person may begin to need help with basic daily activities. Mobility is often still good and, if so, safety becomes a concern for caregivers. Because of this, family caregiver responsibilities increase, causing stress, anxiety, and worry among family members and caregivers. In the moderate phase:
As dementia enters the severe stage, independence is gradually lost and caregivers must provide consistent direct care with most if not all ADLs. At this stage, a person must be directly assisted with basic ADLs such as eating, bathing, transfers, and walking. Control of bodily functions may be inconsistent, requiring direct help with bathing and toileting. Family members may find it impossible to continue to provide care and may be forced to hire a caregiver or move their loved one to assisted living or skilled nursing.
Safety issues and wandering require constant monitoring. If the person with dementia is still at home, tired and overworked caregivers must provide even more support with ADLs to maintain a safe environment. In skilled nursing or assisted living, the facility must provide enough staffing and equipment to create a safe environment.
As severe dementia progresses, balance and safety awareness can decline, requiring significant direct help with transfers and mobility. To prevent injuries from falls, it may be necessary to use bed and chair alarms or provide a one-on-one caregiver, which increases the cost of care. Caregivers and healthcare providers must make difficult decisions to prevent injury and to provide a safe environment.
No matter what the level of dementia, when assisting someone with activities of daily living, encourage them to express their wishes. “No, I don’t want to!” means just that, even when spoken by someone with dementia. Keep these general measures in mind when assisting someone with their ADLs:
When assisting with basic ADLs, use common sense, non-challenging body language, and a quiet, confident tone of voice. Whatever the activity, move slowly, give clear, simple commands, limit choices, and allow plenty of time to complete the task.
There are times when the caregiver and the client have different goals. A caregiver in an adult day care facility may want to assist a client with a transfer from a recliner to a wheelchair as quickly as possible because the caregiver has two more people to help before an activity starts. The client may want just to watch TV and not participate in an activity.
My mom needs help with everything, including transfers and walking. When she has a doctor’s appointment I try to start preparations at least an hour to an hour-and-a-half ahead of time. I get everything ready and think I’ve got things handled but just before we are ready to go she insists on brushing her teeth. This takes about 15 or 20 minutes and requires me to stand next to her at the sink the entire time. If I try to get her to go without brushing her teeth she grabs the door, or even sits down on the step and refuses to go. It drives me crazy. Once in the car she yells at me to hurry up.
Those with mild dementia may need very little help, if any, with basic activities of daily living. Nevertheless, it is good to keep certain core principles in mind:
*Be aware that some medications cause constipation while others increase or decrease the urge to urinate.
Although there is no clear delineation between mild and moderate dementia, it will become clear to caregivers that as dementia progresses, clients will need more help with ADLs, especially instrumental ADLs. There is variability at this stage depending on a person’s physical capabilities and the type of dementia, but for some, walking, transferring, bed mobility, and basic ADLs may remain relatively independent. For others, especially those with physical limitations, more help may be required. In the moderate stage of dementia:
Once a person reaches the severe stage of dementia, the more complex instrumental ADLs have likely been completely taken over by a family member or caregiver. Basic ADLs will require a great deal of assistance, depending on the person’s physical capabilities.
A person with severe dementia may still be able to walk independently and may be independent or nearly so with bed mobility and transfers. Anything that requires planning, sequencing, or judgment will be severely impaired at this stage, so close assistance will be needed for dressing, bathing, meal preparation, grooming, and toileting. If mobility is compromised, close assistance will be needed for all ADLs. In the severe stage of dementia:
*Consider bathing habits (time of day, bath or shower); consider bed bath if more acceptable to resident.
**Goal is for client to be clean and comfortable. Shower or tub bath is not necessary—a sponge bath may suffice.
Mrs. Cavelia has moderate dementia due to Alzheimer’s disease and lives in a nursing home. Tuesday is her shower day—a nursing assistant helps her undress in her room, covers her with a blanket, and wheels her to the shower room using a rolling commode chair. When they leave the room and enter the hallway, Mrs. Cavelia starts to fidget. As they approach the shower room she begins to yell and protest. When she is placed in the shower she screams, grabs the door, and tries to push her caregiver away.
Antecedent: In her room, the care assistant undresses Mrs. Cavelia and wraps her in a bath blanket. Unable to find a shower chair, she helps Mrs. Cavelia into a toilet chair. Mrs. Cavelia’s bottom is hanging out the hole in the chair, which embarrasses her. She tries to stop the caregiver from wheeling her out into the hallway by grabbing at the doorway as they exit. She says “No! No!” but the caregiver tells her she is dirty and needs a shower, which embarrasses Mrs. Cavelia even more.
Behavior: By the time Mrs. Cavelia reaches the shower room she is very upset. She slaps the nursing assistant and repeatedly grabs the shower room door. The nursing assistant manages to get Mrs. Cavelia into the shower room, but when she turns on the water, Mrs. Cavelia screams, grabs the shower hose, and pushes the nursing assistant away. She sprays water all over the caregiver and into the hallway.
Consequence: The client, staff, and the client’s daughter are all upset. The situation created an unpleasant environment for everyone and showering has become a dreaded experience for Mrs. Cavelia.
Discussion: Find out how Mrs. Cavelia bathed earlier in life. Allow her to participate in her bathing even if it takes longer. Ask her if she wants a shower. Allow her to undress in the shower room rather than in her room. Talk with her during the procedure and get continual feedback from her. Ask her questions such as “Is this too hot?” “Do you want to wash your face?” “Are you cold?”
Mrs. Cavelia’s daughter has told the nursing staff that her mother prefers to undress in the shower room and hates being wheeled half-naked down the hall. The nursing assistant bathing her today is new and hasn’t been told about Mrs. Cavelia’s preferences. Find a way to communicate preferences such as these. Consider whether she needs to have a shower or if there are other ways of bathing that might be more acceptable to her.
A therapeutic environment is an environment that is supportive of each individual and recognizes that people with dementia are particularly vulnerable to chaotic environmental influences. It is individualized, flexible, and designed to support differing functional levels and approaches to care (Campernel & Brummett, 2010).
Environment is dictated by an organization’s philosophy of care—a framework that identifies care goals and values. A healthcare organization’s philosophy of care may differ from that of the family. Family members have the right to know and should feel free to question a center’s philosophy of care:
In long-term care, the term “dementia friendly” is a philosophical approach that is commonly used. It focuses on the experience of people with dementia and advocates for positive attitudes and behaviors toward dementia. It seeks to treat people with dementia and their caregivers with dignity and respect and calls for an end to stigma. It seeks community support for people affected by dementia so they can “live well with dementia.” The Japanese “Dementia Friends” model is a good example in which a remarkable 6 million friends (4.6% of the population), lightly trained by 105,000 dementia champions, are driving innovative community programs across the country (ADI, 2015).
In 2004, Japan’s government launched a nationwide campaign, 10-Year Plan to Understand Dementia and Build Community Networks, which inspired the nationwide campaign to train 1 million “cognitive disorder” supporters. The program has been copied in the United Kingdom. Courtesy Alzheimer’s Disease International. From https://www.alz.co.uk/dementia-friendly-communities/dementia-friends
Person-centered care is a dementia-friendly philosophical approach holding that a person with dementia deserves kind and supportive treatment and the rights we reserve for any other individual—namely dignity, respect, and autonomy. Person-centered care has the potential to reduce unwanted behaviors and improve both client and staff outcomes (van de Ven et al., 2014).
Implementation of person-centered care depends not only on caregivers acquiring skills and knowledge but also on adapting the entire care context to both clients’ and caregivers’ needs and preferences. This means that there must be flexibility in the organization (Desrosiers et al., 2014).
Person-centered care is the opposite of task-centered care. In dementia care, it involves practices aimed at helping clients establish relationships and be treated as individuals with their own life history and interests (Desrosiers et al., 2014).
In the Netherlands and several other European countries, an innovative person-centered approach called “green care farms” has been developed to provide day care services and 24-hour nursing home care to people with dementia (de Boer et al., 2015). Green care farms offer a broad selection of activities, including caring for plants and animals, and encourage clients to engage in tasks suited to their level of dementia and physical capabilities.
There is a profound and direct connection between the environment and the way people feel and behave. Buildings thoughtfully designed for the care of people with dementia encourage community, maximize safety, support caregivers, cue specific behaviors and abilities, and redirect unwanted behaviors (Campernel & Brummett, 2010). This approach to dementia care considers the consequences of the built environment on the well-being of clients with dementia (Rijnaard et al. 2016).
For long-term care facilities, there is a trend toward designing facilities to be as homelike as possible. This idea was pioneered in Sweden in the 1980s, where a homelike environment for people with dementia was tried for the first time. Today, similar concepts can be found all over the world, from Green Houses in the United States, to group homes in Japan, small-scale living arrangements in the Netherlands, and German shared-housing arrangements (Gräske et al., 2015).
All of these concepts challenge the traditional view, in which care is organized around nursing and medical tasks and the needs of the institution. Living arrangements in small and homelike settings are built around person-centered care, respecting residents’ needs and choices. Daily routines include meaningful activities to encourage normal living while tasks focus on household chores such as cooking and baking (Gräske et al., 2015).
Specific design principles have been shown to reduce unwanted behaviors and enhance a sense of well-being in people with dementia. These include:
Left: Residential-looking, smaller-scaled nurses’ station. Right: a room for rummaging. Source: Campernel & Brummett, 2010. Used with permission.
Outdoor design ideas for people with dementia and memory disorders include:
Left: Safe, looping wandering paths with areas of interest along the way. Right: A memory-care facility with home-like outdoor porch area for seating and reflection. Source: Campernel & Brummett, 2010. Used with permission.
In a comparison of “regular” specialized care units and small, homelike specialized care units in the Netherlands, clients in the homelike care units needed less support with activities of daily life, were more socially engaged, showed less agitation over time, and needed less psychotropic medication and physical restraints. Residents of the small, homelike units awarded higher scores to aspects of quality of life, showed less negative affect and better social relationships, and were more engaged in activities (Kok et al., 2016).
People with dementia need to feel safe (and be safe) without the use of physical and chemical restraints. Safety includes creating an appropriate environment as well as planning for adverse events, such as wandering away from the home or facility.
The table below illustrates some common safety hazards and measures to help make the environment more safe and secure. Since every situation is different, interventions must be tailored to match the specific circumstances.
Measures to Promote Safety and Security
Getting lost, exposure to environmental hazards
Cooking without supervision
Sickness or death
Simply living in a long-term care facility or receiving care at an adult day care center can be a source of safety and security for a person with dementia. Having regular contact with a caregiver provides a sense of privacy, safety, and security. A well-designed and well-run facility is secure, comfortable, and predictable; it is a place where one can feel at ease—a place where you can be who you are and feel connected with like-minded people (Rijnaard et al., 2016).
For caregivers, adult day care services offer a sense of safety and security. They provide family caregivers with a feeling of shared responsibility, in the sense that someone is able to take responsibility for the person with dementia if the family caregivers should become ill or die. If this happens, then the caregivers feel safe that the staff at the center know the person’s situation and condition and can provide information to other healthcare providers if needed. Adult day care centers provide the families with a sense of shared responsibility and relief while they are still active in their caregiving role (Tretteteig et al., 2017).
Schedules and routines are an important part of any person’s life and well-being. However, when someone enters a facility, they are unable to continue with their usual routines; their lives are undeniably altered. There is a continual tension between the necessary institutional routines and the clients’ personal habits and needs (Rijnaard et al., 2016).
In traditional nursing homes and day care facilities, daily life is primarily organized around the convenience of the staff. As a result, the schedule can change dramatically from day to day. This is difficult for people with dementia because they rely on a predictable routine for orientation. A regular routine allows a person with dementia to know what to expect. Routines also give the caregivers a benchmark for evaluating a person’s behavior. A schedule for someone with dementia should:
Caregivers responsible for maintaining a routine schedule must be flexible. People with dementia tend to be slow, so caregivers need to allow ample time for meals and activities. Attempting to rush can precipitate aggressive behaviors and frustrate both parties.
In Florida, adult day care centers must employ qualified staff to provide the services, personal assistance, and safety measures required by participants. Nearly 60% of workers in adult day care centers are aides, 18% are registered nurses, 11% are licensed practice nurses, and about 12% are social workers (Harris-Kojetin et al., 2016).
If centers provide adult day health care, the following staff members are required:
In adult day care centers in Florida, at all times staffing must be maintained to meet participants’ needs, including centers that serve persons with Alzheimer’s disease and other types of dementia (O’Keefe, 2014):
In adult day care settings, daily life is emphasized and activities are centered on household tasks and activities. This may require a fundamental shift for staff, who must adjust their routines to the routines of the clients.
Ideally, clients are cared for by a small, fixed team of trained caregivers. Activities are organized completely, or in large part, by clients and caregivers. Staff members, clients, and family members prepare meals together, and staff members are involved in multiple tasks such as medical and personal care, domestic chores, and activities (Verbeek et al., 2009).
To encourage integration of the staff into a home-like environment, the following practices are recommended:
Healthcare providers and caregivers are often faced with difficult ethical decisions. This is particularly true in the complex and ethically difficult area of dementia care (Knüppel et al., 2013). Caregivers must balance their own needs while considering issues related to confidentiality, the potential for abuse, and the benefits and risks of medications and procedures. If patients are no longer able to express their own will, designated decision-makers must put aside their own needs and desires and carry out what they believe the person with dementia would do if able.
A key principle is to understand and remember that people with dementia remain the same equally valued people throughout the course of their illness, regardless of the extent of the changes in their mental abilities (Nuffield Council on Bioethics, 2009).
In biomedical ethics, several basic ethical principles are commonly accepted. These are (1) autonomy and well-being, (2) beneficence, (3) justice. In addition, veracity (truthfulness) is an ethical principle that must be observed in all situations.
Autonomy is the right of individuals to make decisions about their own healthcare and their own life. Clients must be told the truth about their condition and informed about the risks and benefits of treatment. Clients can refuse treatment even if the best and most reliable information indicates that treatment would be beneficial, unless this decision has a negative impact on the well-being of another individual. This sort of conflict can create an ethical dilemma.
For someone with dementia, autonomy means fostering important relationships, maintaining a sense of self, and having a way to express values. Autonomy is not simply the ability to make rational decisions. A person’s well-being includes both their moment-to-moment experiences of contentment or pleasure and more objective factors such as their level of cognitive functioning (Nuffield Council on Bioethics, 2009).
Beneficence is the act of doing good. This means providing care that is in the best interest of the client. A decision is beneficent or kind when the same decision would be made regardless of who was making it. Beneficence is closely related to the concept of “do no harm.” Actions or practices of a healthcare provider are beneficent as long as they are in the best interest of the client and avoid negative consequences.
Justice is often defined as a fair distribution of benefits and burdens, particularly in connection with misfortunes for which we cannot be held personally responsible (Nuffield Council on Bioethics, 2009). Distributive justice is the degree to which healthcare services are distributed equitably throughout society. Comparative justice refers to the way healthcare is delivered at the individual level.
Given the vulnerability of people with dementia, it is particularly important that the allocation of resources supports dementia care. This is in part an issue of appropriate resources and practical support, but also requires both caregivers and care workers to be recognized and valued as people who have an important expertise and role in society. A fair distribution of benefits and burdens should promote and sustain people with dementia throughout the course of their dementia and help them maintain their autonomy as much as possible (Nuffield Council on Bioethics, 2009).
Truthfulness is taught us from childhood and it is particularly important when interacting with those who have dementia; ethical reasoning behind most interactions must be driven by concern for the well-being of the person with dementia. Conflicts inevitably arise between the desire to maintain trust and practical concerns about how to get through the day (Nuffield Council on Bioethics, 2009).
Some argue that failing to tell the truth is a breach of trust and undermines the grip the person has on the everyday world. Others point out that telling the truth when the person with dementia will not believe it may equally undermine trust because the person will think that they are being lied to. For healthcare providers, there is the added issue of whether telling a lie undermines the integrity of professional care, and for those involved in providing care there is the concern that failing to tell the truth is detrimental to their own moral well-being (Nuffield Council on Bioethics, 2009).
Ethical dilemmas arise when there are equally good reasons both for and against a particular course of action and a decision must be made. It is a dilemma because there is a conflict between available choices. One action, though morally right, violates another ethical standard. A classic example is stealing to feed your family. Stealing is legally and ethically wrong—but, if your family is starving, stealing food might be morally justified (Noel-Weiss et al., 2012).
Kidder calls this a “right vs. right” dilemma. When evaluating the alternatives, both courses of action have positive and negative elements. Right vs. right is an ethical dilemma, whereas right vs. wrong is identified as a moral temptation (Kidder, 1996).
Working through an ethical dilemma until a satisfactory conclusion is reached, making decisions that lead to good actions, and avoiding regrets and negative consequences are the foundational principles of ethical practice (Noel-Weiss et al., 2012).
Mr. Corona is 82 years old and lives in a cottage on his daughter’s property. He was a fighter pilot during World War II and has been fiercely independent his entire life. He is in the moderate-to-severe stage of dementia and is unable to independently perform many of his ADLs.
Mr. Corona is in the clinic for his annual evaluation. He does not know his address, the current date, the president’s name, the season, day, or time. His Mini Mental State Exam score is 11/30. When asked what he would do if the house caught on fire, he replied, “I would get some water and put it out.”
His three daughters discussed the situation with a social worker and a nurse practitioner in the neurology clinic. Although Mr. Corona’s safety is questionable, his daughters state that he has always been independent and does not like people taking care of him. They decide that for now they will support his living in the cottage.
Discussion: In making decisions on Mr. Corona’s behalf, his daughters are using the principles of autonomy and beneficence. Mr. Corona’s lifelong desire to be independent guided their decision to allow him to continue to live alone. They are balancing his need for autonomy with his need for safety and protection. The three sisters decide take turns sleeping at his house overnight and have agreed to stop in during the day. They accept that he is at some risk living alone, but believe that his quality of life will be better in his own home and that living alone is consistent with their father’s life philosophy.
Ceasing to Eat
Mrs. Gould is 92 years old and has had Alzheimer’s disease for fifteen years. She has lived in a nursing home for the past seven years. She has had help with her meals for two years, but over the last month has intermittently refused food. As a result, she has lost 15% of her body weight in the past 6 weeks. The Physician Orders for Life-Sustaining Treatment (POLST) form that she completed when she was able to make her own decisions indicated that she did not want a feeding tube if she was unable to eat on her own. Her son has durable power of attorney to make decisions for her when she is no longer able to do so. He wants her kept alive as long as possible and wants a feeding tube inserted.
Discussion: Mrs. Gould’s son is acting from what he believes is the best course of action for her; however, he is expressing his opinion and neglecting to consider what his mother would say if she were able. He is not adhering to the principle of autonomy and is not demonstrating loyalty or support of his mother’s wishes. While one might think that he is acting in concert with the principle of beneficence by feeding her, studies show that feeding tubes do not prolong life or improve quality of life in people in the later stages of Alzheimer’s disease. At the very latest stages of Alzheimer’s, the natural course of the disease is that people stop eating and drinking.
Dementia is a disease of the brain that interferes with a person’s ability to perceive and think in a normal manner. Alzheimer’s disease is the most common cause of dementia, but there is more than one kind of dementia.
Although people with dementia often exhibit behaviors that are challenging for family and professional caregivers to manage, the behaviors are caused by damage to the brain and are not intentional. Challenging behaviors can be caused by unmet needs and may be a means of communication. By carefully observing what comes directly before and after a behavior, caregivers may be able to determine the underlying need and learn how to alleviate the challenging behavior.
People with dementia need to be treated with kindness and with the knowledge that they can still enjoy life. Physical and chemical restraints should be used only as a last resort. There are many proven alternatives to physical and chemical restraints that are the mainstays of individualized care.
Activities of daily living are disrupted in those with dementia. As dementia progresses, family members and caregivers must step in to assist with personal care and household management. Caregiver training is an essential component for anyone caring for a person with dementia. Family caregivers play a critical and often-overlooked role in the care of people with dementia—especially in the early to moderate stages. Caregivers often experience stress, which can be lessened by accessing respite care and adult day care services.
Adult day care centers built around a philosophy of person-centered care can have a profound and positive effect on challenging behaviors associated with dementia. Providing a safe, clean, home-like environment in which clients and staff work together has been shown to improve outcomes in those with dementia.
Communication issues affect people with dementia. As the dementia progresses, it becomes more difficult for people with dementia to communicate their needs. Good verbal and nonverbal communication skills are needed for caregivers to provide a high level of care as the dementia progresses.
Caregivers—both family and professional—experience many ethical conflicts when caring for a person with dementia. Education and training in ethical decision making and conflict resolution are invaluable tools to improve the experience of those with dementia.
Working with people who have dementia can be satisfying and rewarding. It takes patience, practice, and training to learn to understand the world from that person’s point of view. People with dementia can still enjoy life. They can enjoy memories, interactions with the people around them, and activities that are matched to their preferences and abilities. Your efforts to make the person comfortable and happy can make a big difference in their final years of life.
2-1-1 Information and Referral Search
For help with food, housing, employment, healthcare, counseling, and crisis intervention, and more in many counties in Florida. www.211.org, or call 211
Area Agency on Aging for North Florida
Serves as the designated Aging Resource Center for the Panhandle and Big Bend areas. Consumers, families and caregivers can access the Aging Resource Center in their community by calling the Elder Helpline. www.aaanf.org/ 800 963 5337
Provides support, education, and research throughout Florida. They have excellent educational material, a newsletter, fundraising and volunteer opportunities, and a 24/7 helpline. www.alz.org 800 272 3900
Alzheimer’s Disease Education and Referral (ADEAR) Center
Established by an act of Congress in 1990—part of the National Institutes of Health. Compiles, archives, and disseminates information about AD for health professionals, people with AD and their families, and the public. The website provides excellent educational material about Alzheimer’s disease, current research initiatives, support services, and much more. www.nia.nih.gov/alzheimers 800 438 4380
AlzOnline: Caregiver Support Online
Part of the Center for Telehealth and Healthcare Communications at the University of Florida. It provides caregiver education, information, and support for those caring for a family member or friend with Alzheimer’s disease or related dementias. alzonline.phhp.ufl.edu/
A nonprofit organization located in Tallahassee. Provides comfort, support, and assistance to persons with memory disorders and their caregivers. Serves the Big Bend community of Florida with education and training, in-home respite, support groups, counseling, referral to community resources, and recovery of wanderers through the Project Lifesaver program. Services are free of charge. www.alzheimersproject.org/ 850 386 2778
CJE Senior Life
Provides caregivers with educational materials and resources applicable to many different caregiving situations. Addresses risk of caregiver burnout by sharing expertise in dealing with the older adult population. www.cje.net/
A public service of the Administration on Aging, U.S. Department of Health and Human Services; a nationwide service that connects older Americans and their caregivers with information on senior services. www.eldercare.gov/Eldercare.NET/Public/Index.aspx , or call 800 677 1116
Family Caregiver Alliance National Center on Caregiving
A community-based nonprofit organization that addresses the needs of families and friends providing longterm care for loved ones at home. Provide assistance, education, research, and advocacy. www.caregiver.org / 800 445 8106
Florida Adult Day Services Association (FADSA)
Provides leadership, education, planning, and development of adult day services across Florida. Promotes quality day services, respite programs, adult day health centers, and education, training, and advocacy within the long-term care industry. www.fadsa.net/
Florida Council on Aging
A statewide association that represents aging interests through education, information-sharing, and advocacy. www.fcoa.org / 850 222 8877
Florida Department of Elder Affairs
Coordinates and develops policy for the Alzheimer’s Disease Initiative, provides services for individuals with Alzheimer’s disease, and similar memory disorders, and their families. Provides supportive services including counseling, consumable medical supplies and respite for caregiver relief; memory disorder clinics to provide diagnosis, research, treatment, and referral; model day care programs to test new care alternatives; research database and brain bank to support research. elderaffairs.state.fl.us/index.php, or call 850 414 2000
Florida Elder Helpline: Florida Department of Elder Affairs
Provides information about elder services and activities. Information is available through the Elder Helpline Information and Assistance service within each Florida County. elderaffairs.state.fl.us/doea/elder_helpline.php, or call 800 963 5337
Florida Hospice and Palliative Care Association (FHPC)
A not-for-profit organization representing Florida’s hospice programs. Ensure excellence and access to hospice care; advocates for the needs of those in the final phases of life. floridahospices.org/ 800 282 6560
Florida Respite Coalition
Supports caregivers and promotes quality respite care to individuals with special care needs throughout the state. www.floridarespite.org
Florida Telecommunications Relay (FTRI)
A statewide nonprofit organization that administers the Specialized Telecommunications Equipment Distribution Program for citizens of Florida who are deaf, hard of hearing, deaf/blind, and speech impaired. FTRI is also responsible for the education and promotion of the Florida Relay Service. www.fccdhh.org/services/assistive-technology/florida-telecommunications-relay-inc.html
Memory Disorder Clinic at the Tallahassee Memorial Neuroscience Center
A team of memory disorder specialists who provide a comprehensive diagnostic evaluation for persons concerned about memory problems. www.tmh.org/memory 850 431 5001
National Council of Certified Dementia Trainers
Promotes standards of excellence in dementia education for professionals and other caregivers who provide services to dementia clients. www.nccdp.org
Share the Caregiving
Dedicated to educating the caregiving communities about the effectiveness of the Share the Care model. Share the Care encourages ordinary people to pool their efforts to help ease the burden on family caregivers and help those without family nearby. www.sharethecare.org/
Strength for Caring (SFC)
A website designed to provide family caregivers with a broad range of expert content and information, an emerging online community, daily inspiration, and much needed support. www.strengthforcaring.com/
Caregiver Media Group provides information, support, and guidance for family and professional caregivers. It publishes Today’s Caregiver magazine, the first national magazine dedicated to caregivers, presents Fearless Caregiver conferences, and offers a website that includes newsletters, online discussion lists, articles from Today’s Caregiver, chat rooms, and an online store. www.Caregiver.com
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