Learning Objectives
By the end of this section, you will be able to:
- Define various forms of dementia
- Describe the approaches to treatment and nursing care planning for a client with dementia
Dementia is an umbrella term that covers a host of neurocognitive disorders. The symptoms of these disorders show up as a gradual decline in a person’s cognitive functioning. There are over fifty-five million people in the world living with dementia (American Psychiatric Association, 2023). The most common form of dementia is Alzheimer disease, accounting for 60 to 80 percent of cases.
Definition and Forms of Dementia
The term dementia is an older one that describes neurodegenerative brain disorders that cause changes in a person’s cognition (American Psychiatric Association, 2023). When a person has dementia, they lose the ability to think, take care of themselves, remember things, and sometimes control their emotions. The DSM-5 no longer uses the term dementia, because it has been primarily associated with older adults and Alzheimer disease, and now uses the term major neurocognitive disorder (major NCD) to reflect the group of disorders that can affect younger and older individuals’ cognition with a gradual decline in at least one of the following domains of cognition: executive function, complex attention, language, learning, memory, perceptual-motor, or social cognition (Emmady et al., 2022). This text uses the terms dementia and major neurocognitive disorder interchangeably. Clinical manifestations of major NCD include forgetfulness, impaired social skills, and impaired decision-making and thinking abilities that interfere with daily living. Major NCD is gradual, progressive, and irreversible (Alzheimer’s Association, 2023b). Nonetheless, appropriate assessment and nursing care improve the safety and quality of life for those affected by dementia. There are seven stages of major neurocognitive disorder based upon symptoms and ranging from mild to very severe cognitive decline (Table 14.2).
| Stage | Description |
|---|---|
| 1. No cognitive decline | No memory problems. |
| 2. Very mild cognitive decline | Complaints about losing things, such as car keys or forgetting names of things. No deficits in social or occupational settings. |
| 3. Mild cognitive decline | Difficulty with tasks in the work setting. Memory deficits. Anxiety related to cognitive changes. Potential for a diagnosis of MiND. |
| 4. Moderate cognitive decline | Difficulty with remembering personal history. Difficulty managing money or traveling. Lack of emotional expression. Withdrawal from situations deemed challenging. |
| 5. Moderately severe cognitive decline | Assistance needed with things like choosing an outfit. Increased deficits in short-term memory. Not oriented to time, date, or place. |
| 6. Severe cognitive decline | Needs assistance with ADLs. Lack of memory of recent activities. Sleep disturbances, incontinence of bladder and bowel. Hallucinations, agitation, anxiety, and obsessive behavior may occur. |
| 7. Very severe cognitive decline | No longer able to hold a conversation or talk. No longer able to control bladder and bowel functioning. Needs assistance for all ADLs. Difficulty moving, eating, swallowing. Drastic changes to personality and behavior. |
The Cognitive Domains Used in Diagnosing Major NCD in the DSM-5
There are six main cognitive domains used in the DSM-5 to measure cognitive decline. Complex attention is capacity to remain focused while doing multiple things at one time. Executive function includes the high-level abilities individuals need in order to control cognition, such as sequencing, planning, and organizing tasks. Learning and memory are the abilities to understand and store information and later retrieve it. Language is the way that people communicate, whether that be through speech, writing, or reading. Perceptual-motor control allows individuals to control their body movements so that they can interact with the environment. Social cognition helps people process, remember, and apply information in social situations. All six of these cognitive domains are used to assess for major NCD and subsequently diagnose them (Sheikh, 2022). However, for diagnosis, there must be evidence of decline to the level of substantial impairment in at least two cognitive domains, one of which must be memory.
Subtypes of Major NCD
Major NCD has many subtypes, each with its own DSM-5 diagnostic criteria (American Psychiatric Association, 2022). The DSM-5 recognizes the following subtypes: Alzheimer disease, frontotemporal degeneration, Lewy body dementia, vascular disease, traumatic brain injury, substance use, HIV infection, Prion disease (Creutzfeldt-Jakob disease), Parkinson disease, Huntington disease, another medical condition, multiple etiologies, and unknown etiology.
The most common of these disorders is Alzheimer disease, which affects the brain by causing atrophy in the cortex (Figure 14.2), deposits of amyloid plaques and neurofibrillary tangles in the neurons, and degeneration of the neurons (Emmady et al., 2022). The presence of the amyloid plaques is found on autopsy. The DSM-5 criteria for Alzheimer disease includes evidence of genetic mutation from family history or testing of all of the following: clear evidence of decline in memory and learning and at least one other cognitive domain; progressive, gradual decline in cognition, without extended plateaus; and no evidence of other causes of symptoms. Risk factors for Alzheimer disease include age, cardiovascular diseases, history of stroke, history of traumatic brain injury, and Down syndrome. Genetic testing for markers is now available to test for amyloid precursor protein (APP), presenilin 1 (PSEN1), and presenilin 3 (PSEN2). The genetic test for PSEN1 is widely available.
The disorder called frontotemporal degeneration involves personality and behavior changes; it affects nerve cells in the frontal and temporal lobes of the brain. This is the most common dementia in younger people and usually begins between ages forty and sixty-five years (John Hopkins Medicine, 2023). Symptoms include impaired judgment; lack of empathy; behavior changes; emotional withdrawal; difficulty with language, speaking, and writing skills; and agitation. There is no known cause. There are no treatments to slow the progression; clients can benefit from some symptom management using antidepressants, sleeping pills, and antipsychotic medications.
Comedian Robin Williams developed a major NCD called Lewy body dementia, which ultimately caused him to take his own life. Since his death, the family has aimed to raise awareness for this progressive form of dementia. This disease accounts for 5 percent of dementia cases. Both Lewy body dementia and Parkinson disease involve Lewy bodies, insoluble deposits of alpha-synuclei protein that damage the brain (Emmady et al., 2022). In her article “The Terrorist Inside my Husband’s Brain” (2016), Susan Williams describes her husband’s history of depression and the new symptoms he began to experience: insomnia, heartburn, a poor sense of smell, constipation, and urinary difficulty. He was diagnosed with Parkinson disease. At that point, he had a hand tremor, shuffling gait, masklike expression, and weakened voice. It wasn’t until after his autopsy that it was determined he actually had Lewy body dementia that had done massive amounts of damage to his brain. Lewy body dementia can be difficult to diagnose until after death when the autopsy confirms the presence of Lewy bodies in the brain. This disease is often first diagnosed as Parkinson disease because of the many shared symptoms (John Hopkins Medicine, 2024).
Injuries to the brain from ischemia, such as a stroke, that block blood flow to the brain and lead to permanent neuron death can cause vascular dementias. Illnesses, such as diabetes, hypertension, and hyperlipidemia, can be risk factors because they can be precursors to having a stroke (Centers for Disease Control and Prevention [CDC], 2023). Moreover, untreated HIV infection can lead to the development of specific neurocognitive disorders caused by toxic inflammation (encephalopathy) in the brain.
Commonly mistaken for “madcow” disease, Prion disease (Creutzfeldt-Jakob disease) is a very rare form of dementia, affecting only one to two people per million worldwide in any year. This disease progresses rapidly and leads to death within one year. This disease is considered a transmissible form of spongiform encephalopathy (Centers for Disease Control and Prevention, 2021). This disease is believed to develop spontaneously when normal prion proteins become abnormal prion proteins. In 85 percent of people who develop this disease, there is no understandable pattern of transmission. There is a familial component with a dominant inheritance pattern in 5 to 15 percent of clients who develop this disease (Centers for Disease Control and Prevention, 2022). Symptoms of this disease include rapidly progressing dementia, and at least two of the following symptoms: myoclonus (muscle jerks), visual or cerebellar signs, pyramidal/extrapyramidal signs, and Akinetic mutism (person is in a wakeful state of profound indifference to goal-directed behavior and emotions) (CDC, 2022).
Another cause of dementia, Huntington disease is a genetic mutation that causes the building blocks of DNA to repeat more times than they normally do. The disease attacks the neurons in the brain, causing them to die. Symptoms include uncontrollable movements (chorea) that can cause a person to fall easily. The person develops difficulty with speech, swallowing, eating, and cognition (National Institute of Neurological Disorders and Stroke, 2023). While each of these subtypes of neurocognitive disorder affects brain cognition, they all have varying symptoms and diagnostic criteria under the DSM-5.
Link to Learning
This sharable PDF about dementia from the National Institute on Aging is a great way to educate clients and family members about some of the different types of major NCD.
Dementia and Alzheimer Disease
Many people still refer to a person who begins to have memory problems as having Alzheimer disease. Alzheimer disease is one type of major NCD diagnosed after a complete physical exam and neurological tests. In a client with Alzheimer disease, PET scan images will reveal buildup of amyloid plaques and tau proteins (Alzheimers.gov, n.d.). There is medication available to treat some of the symptoms of Alzheimer disease, and to slow the progression (Table 14.3), but there is no cure (Alzheimer’s Association, 2023c). Figure 14.2 shows the spread of Alzheimer disease through the brain.
| Function | Name (Generic/Brand) | Indicated For | Common Side Effects |
|---|---|---|---|
| Slows disease progression | Aducanumab (Aduhelm) | Alzheimer disease (MCI or mild dementia) | Headache and fall |
| Lecanemab (Leqembi) | Alzheimer disease (MCI or mild dementia) | Infusion-related reactions and headache | |
| Treats cognitive symptoms (memory and thinking) | Donepezil (Aricept) | Mild to severe dementia due to Alzheimer disease | Nausea, vomiting, loss of appetite, muscle cramps, and increased frequency of bowel movements |
| Galantamine (Razadyne) | Mild to moderate dementia due to Alzheimer disease | Nausea, vomiting, loss of appetite, and increased frequency of bowel movements | |
| Rivastigmine (Exelon) | Mild to moderate dementia due to Alzheimer or Parkinson disease | Nausea, vomiting, loss of appetite, and increased frequency of bowel movements | |
| Memantine (Namenda) | Moderate to severe dementia due to Alzheimer disease | Headache, constipation, confusion, and dizziness | |
| Memantine + Donepezil (Namzaric) | Moderate to severe dementia due to Alzheimer disease | Nausea, vomiting, loss of appetite, increased frequency of bowel movements, headache, constipation, confusion, and dizziness | |
| Treats noncognitive symptoms (behavioral and psychological) | Brexpiprazole (Rexulti) | Agitation associated with dementia due to Alzheimer disease | Weight gain, sleepiness, dizziness, common cold symptoms, and restlessness or feeling the need to move Warning for serious side effects: Increased risk of death in older adults with dementia-related psychosis. Rexulti is not approved for the treatment of people with dementia-related psychosis without agitation. |
| Suvorexant (Belsomra) | For insomnia; has been shown to be effective in people with mild to moderate Alzheimer disease | Impaired alertness and motor coordination, worsening of depression or suicidal thinking, complex sleep behaviors, sleep paralysis, compromised respiratory function |
Link to Learning
Watch this video describing the changes that occur in the brain during Alzheimer disease from the National Institute on Aging.
Understanding the Symptoms
Often, providers confuse major NCD and delirium, leading to misdiagnosis. If an older person suddenly becomes confused, it is very likely the result of another medical cause, such as infection, fecal impaction, or dehydration, not dementia. According to UHealth Collective (2018), there are thousands of people misdiagnosed with dementia each year. It is important to remember that the onset of dementia has a slower progression while delirium has rapid symptom development. Because the different subtypes of major NCD can share symptoms, it can also be difficult to get an exact diagnosis. A primary care doctor may refer a client to see a neurologist in order to get the correct diagnosis (Alzheimers.gov, n.d.). (Table 14.4) compares dementia to delirium to aid in differential diagnosis.
| Dementia | Delirium | |
|---|---|---|
| Onset | Vague, insidious onset, symptoms progress slowly | Sudden onset over hours and days with fluctuations |
| Symptoms | Symptoms may go unnoticed for years; may attempt to hide cognitive problems or may be unaware of them; often disoriented to time, place, and person; impaired short-term memory and information processing; confusion is often worse in the evening (referred to as “sundowning”) | Often disoriented to time, place, and person; impaired short-term memory loss and information processing; confusion is often worse in the evening |
| Consciousness | Normal | Impaired attention/alertness |
| Mental state | Possibly labile mood, consistently decreased cognitive performance | Emotional lability with anxiety, fear, depression, aggression, variable cognitive performance |
| Delusions/hallucinations | Common | Common |
| Psychomotor disturbance | Psychomotor disturbance in later stages | Psychomotor disturbance present—hyperactive, purposeless, or apathetic |
Link to Learning
This short video differentiates delirium and dementia using the mnemonic OCD CAMPS.
Planning Treatment for a Client with Major NCD
It is important that a team approach be taken to care for a person with major neurocognitive disorder. Emmady et al. (2022) recommend that the physician coordinate the plan of care with the pharmacist, social workers, nurses, and family members. The primary health-care provider does the initial assessment and may refer the client to a neurologist to confirm a diagnosis. There are screening tests performed to establish a benchmark and then repeated at follow-up visits to record further decline. One such test is the Mini-Cog, which includes the clock test. This simple test assesses the client’s memory recall, brain function, and spatial abilities by asking them to recall three words and then draw the face of a clock, placing the numbers around the face of the clock and the hands at a specific time (Alzheimer’s Association, 2023b).
Link to Learning
This short article about administering the clock test provides its history and some basic instructions.
The provider also coordinates medication with the pharmacist. Social workers assist the client and their families to ensure that the living environment is safe and support is available to caregivers. Family members should be educated about the disease process and given information about community support. Nurses provide care in the inpatient, outpatient, and community settings that is designed to provide the best possible outcomes for the client.
Planning Nursing Care for a Client with Major NCD
Because people are living longer, there are more and more individuals who need nurses who are trained to take care of people with illnesses like major neurocognitive disorder. According to the most recent report of Administration for Community Living (2021), 16 percent of the U.S. population, or 54.1 million people were over the age of sixty-five in 2019. Nurses should become educated about the symptoms, treatment, interventions, and coordination of services in the care of this population of clients (Deshaies, 2023). Nurses create a plan of care that helps develop a daily routine to assist and support clients with their daily self-care activities. Many clients with dementia believe they are living in their younger years, going to work, or caring for their families. Offering activities, such as folding towels, caring for a baby doll or stuffed animal, or giving them a job to do, such as wiping down tables, encourages the client to participate in their surroundings in a way that is comforting to them.
An assessment of the environment is important to keep the client safe. If the client lives at home, look for throw rugs that could be tripping hazards, check if the bathroom is equipped with grab bars, and determine if there is adequate lighting or stairs to navigate. Nurses should also take care to communicate with these clients by asking simple questions in a calm manner. The nurse recognizes when the client is becoming anxious, angry, or more confused. Nurses may also play a role in managing medications. They can encourage families and friends to spend time with the client. Nurses work with an interdisciplinary team to share their expertise and interactions as a way of keeping safety and autonomy goals in sight for the client.
If an older adult requires more care than family members are able to provide at home, nurses provide valuable information about available care options and make referrals to social workers and case managers. There are a wide variety of community-based resources to enhance care for older adults. Local aging and disability resource centers (ADRCs) can help facilitate referrals based on specific needs of the older adult. Examples of other resources include adult day centers, home health agencies that provide personal care and nursing assistance, community-based residential facilities (CBRFs), and residential care apartment complexes (RCACs). If an older adult requires twenty-four-hour nursing care, placement in a nursing home (also referred to as a skilled nursing facility) may be required.