Dementia
- What is dementia?
- What are the types of dementia?
- What are the signs and symptoms of dementia?
- What are early, intermediate, and late symptoms of dementia?
- What causes dementia?
- What are the risk factors for dementia?
- How is dementia diagnosed?
- What are the possible complications of dementia?
- When should you see a healthcare provider?
- How is dementia treated?
- Can you prevent dementia?
- What is the outlook for dementia?
- Living with dementia
- Featured dementia articles
Introduction
More than 55 million people around the world have dementia, according to the World Health Organization (WHO). Among them are an estimated five million adults aged 65 and older living in the United States. Each year, nearly 10 million new cases arise worldwide, with a person being diagnosed every three seconds.
Dementia is the leading cause of disability and dependency among older adults worldwide. But while some types of dementia (see below) tend to affect older adults more often, dementia isn’t a natural or inevitable part of aging.
Around 4 million people worldwide experience a form of the disease that affects people younger than 65 years of age, according to a 2021 review and analysis of 95 studies published in JAMA Neurology. This form of dementia, called early- or young-onset dementia, affects around 500,000 people in Europe and 200,000 people in the United States.
Greater awareness and understanding of dementia can help challenge the myths and misconceptions around the condition. Learn more about the various types of dementia, what causes them, and how they’re diagnosed and treated. Find out what complications may occur from dementia and what it means to live with the condition.
What is dementia?
Dementia isn’t one specific disease, but an umbrella term that includes a range of conditions that cause progressive deterioration of cognitive function. These include higher-level brain functions (sometimes referred to as executive functions), including:
- Memory
- Thinking
- Language skills
- Judgment
- Reasoning and problem-solving skills
- Ability to think, focus, and pay attention
For people diagnosed with dementia—and the people who love and care for them—the loss of these functions can impart heavy mental, physical, emotional, and social tolls. The financial impact of dementia can also be significant.
The steady progression of dementia doesn’t just affect cognitive abilities. It eventually interferes with people’s ability to care for their basic needs, including carrying out activities of daily living, such as:
- Walking or moving around from one location to another independently
- Controlling bowel and bladder functions (known as continence)
- Choosing proper clothing and getting dressed
- Eating and drinking without needing assistance
- Bathing, grooming, and maintaining other aspects of personal and dental hygiene
- Getting to and from the toilet, using it properly, and cleaning up afterwards
What are the types of dementia?
There are more than 200 types of dementia. The four types that occur most often include Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia.
Alzheimer's disease
Alzheimer’s disease (AD) is the most common form of dementia, accounting for 60 to 80 percent of all cases, according to the Centers for Disease Control and Prevention (CDC). In the U.S., around 10 percent of people aged 65 and older have the disease, with rates rising as people age.
On average, AD affects:
- 3 percent of adults aged 65 to 74
- 17 percent of adults aged 75 to 84
- 32 percent of adults aged 85 and older
During the course of AD, brain tissue degenerates and neurons (nerve cells) die in specific areas of the brain. This causes the brain to atrophy (shrink). Gaps also form in two areas of the brain, the hippocampus and temporal lobe. These areas are responsible for storing and retrieving information.
Neurons in the affected parts of the brain also become less responsive to certain neurotransmitters (chemical messengers that transmit signals between neurons). For instance, levels of acetylcholine drop. This neurotransmitter helps facilitate cognitive functions such as learning, memory, and concentration.
AD can also cause the following substances to form and accumulate in brain tissue:
- Beta-amyloid: These are abnormal deposits of protein, known as plaques, that build up because brain cells can’t process or remove them.
- Neuritic (senile) plaques: These are clumps of dead nerve cells around a beta-amyloid core.
- Neurofibrillary tangles: These are twisted strands of protein fibers within neurons.
- Tau: This abnormal protein is a component of beta-amyloid and neurofibrillary tangles.
- Lewy bodies: These are abnormal deposits of the alpha-synuclein protein in the brain.
These issues have been found in people with the disease during postmortem (after death) examinations called autopsies. All people can develop these brain issues as they age, but the degree to which they affect people with Alzheimer’s is more extensive. Inflammation in the brain may also be a factor in the development of AD.
Vascular dementia
Vascular dementia is the second most common form of dementia, accounting for 17 to 30 percent of all cases. Brain tissue damage occurs because blood supply to the brain gets blocked or reduced. This may involve a series of strokes or mini-strokes called transient ischemic attacks (TIAs).
Dementia that occurs in people who have risk factors or symptoms of a stroke is therefore usually vascular dementia. Cognitive decline is likely to come on suddenly and symptoms tend to progress in a series of steps following each attack. This suggests that small strokes may have been occurring.
The main types of vascular dementia include:
Subcortical vascular cognitive impairment and dementia (SVCID)
In this subtype of vascular dementia, tissue damage occurs under the cerebral cortex—the outermost layer and largest part of the brain. The cortex plays a key role in cognitive functions such as consciousness, emotions, learning, memory, reasoning, thinking, problem-solving, sensory functions, and using and understanding language. Smaller blood vessels in this area are most often affected.
Subtypes of SVCID include:
- Binswanger dementia: Small blood vessels located in white matter in deeper tissues of the brain become blocked. This subtype usually occurs in people with disorders that affect blood vessels throughout the body such as poorly controlled high blood pressure.
- Multiple lacunar infarction: This occurs when several small blood vessels located deep within the brain become blocked.
Multi-infarct dementia
A series of strokes, often involving medium-sized blood vessels, typically cause multi-infarct dementia.
Post-stroke dementia
With post-stroke dementia, symptoms of cognitive decline start right after or within six months of a stroke.
Less common vascular dementia subtypes
These include:
Cerebral amyloid angiopathy (CAA): Accumulation of beta-amyloid causes this vascular dementia type. CAA leads to a slow decline in cognitive function, numbness and weakness on one side of the body, and periods when it’s hard to see and speak. Bleeding in the brain may also occur, in which case symptoms can come on suddenly. CAA often occurs in people with Alzheimer’s disease as well, but the condition can also occur in otherwise healthy older adults.
Hereditary vascular dementias: These vascular dementia subtypes affect small blood vessels and are caused by gene mutations. Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) and cerebral autosomal recessive arteriopathy with subcortical infarcts and leukoencephalopathy (CARASIL) are examples of these vascular dementias.
Strategic single-infarct dementia: Tissue in one critical area of the brain gets destroyed with this vascular dementia subtype.
Lewy body dementia
Lewy body dementias (LBDs) result from the buildup of Lewy bodies in nerve cells. Lewy bodies are abnormal deposits of a protein called alpha-synuclein. There are two main types of LBDs:
Dementia with Lewy bodies (DLB)
The third most common type of dementia is dementia with Lewy bodies. It most often develops in adults over 60 years old. In this dementia type, Lewy bodies form throughout the brain’s cerebral cortex, resulting in the death of nerve cells. This leads to difficulty with thinking, sleep, and visual perception, among other issues. (Visual perception involves the brain’s ability to understand and interpret what the eyes see.) Issues with movement may also develop.
Parkinson’s disease dementia (PDD)
Around 40 percent of people with Parkinson's disease develop PDD, but Parkinson’s symptoms usually appear before those that point to cognitive decline. This dementia type usually develops 10 to 15 years after Parkinson’s disease is diagnosed, most often in adults older than 70.
With Parkinson’s disease dementia, Lewy bodies tend to develop in the same part of the brain affected by Parkinson’s. This area, called the substantia nigra, helps facilitate smooth movement. It’s located deep within the brain stem, which connects the brain with the spinal cord.
Ties between dementia with Lewy bodies, Parkinson’s disease dementia, and Alzheimer’s
Some consider DLB and PDD to be variations of a single disorder, rather than two separate types of Lewy body dementia. In both cases, a protein in the brain that helps facilitate nerve cell communication called synuclein misfolds (or changes shape). Lewy bodies are composed of these abnormal synuclein deposits.
As misfolded synuclein accumulates in Lewy bodies in the brain, more synuclein misfolds, leading to more Lewy bodies being formed. The more Lewy bodies that form, the greater the damage to the brain.
Misfolded proteins that damage the brain in this manner are referred to as prions. Prions can cause other brain disorders that involve progressive deterioration of cognitive function and dementia-like symptoms, such as Creutzfeldt-Jakob disease.
Some people with Alzheimer’s disease also develop Lewy bodies, and some people with dementia with Lewy bodies develop neurofibrillary tangles and neuritic (senile) plaques, which are often seen in people with Alzheimer’s. Although considerable overlap exists between DLB, PDD, and AD, more research is needed to determine the precise nature of their relationships.
Frontotemporal dementia
Frontotemporal dementias (FTDs) account for 1 in 10 cases of dementia, with most occurring in adults between the ages of 45 and 65. FTDs include several types of dementia that cause atrophy and loss of neurons in the brain’s frontal lobe and sometimes its temporal lobes.
These lobes (areas of the brain) control attention, judgment, mood, planning, self-control, and social behavior. Like Alzheimer’s disease, frontotemporal dementia can impair certain cognitive abilities, although memory may remain intact.
An example of an FTD is Pick disease. It’s characterized by severe atrophy, loss of neurons, and the presence of abnormal cells in the brain called Pick cells.
HIV-associated dementia
Although it’s not one of the four main types of dementia, HIV-associated dementia is also relatively common. During the advanced stage of infection with the human immunodeficiency virus (HIV), the virus may damage neurons and lead to cognitive decline.
People with late-stage HIV infection develop dementia 7 to 27 percent of the time, although milder forms of HIV-associated dementia may occur 30 to 40 percent of the time. Unlike most other forms of dementia, this type often occurs in younger people.
Dementia in people with HIV may also be due to other diseases, such as lymphomas (cancers of white blood cells called lymphocytes) that affect the brain. People with HIV may also be more prone to infections because of their weakened immune systems.
These infections may contribute to the development of dementia. They include:
- Fungal meningitis: Inflammation and infection of the layers of tissue that cover the brain and spinal cord called the meninges
- Progressive multifocal leukoencephalopathy: A rare brain disorder that causes the breakdown of cells that produce myelin, a substance that wraps around and protects neurons
- Toxoplasmosis: An infection caused by the parasite Toxoplasma gondii, which can result in encephalitis (brain inflammation) and cause cognitive issues such as confusion and coma in people with weakened immune systems
Note that some of these diseases and infections can be treated, at which point some dementia symptoms may improve.
Mixed dementia
People may develop more than one type of dementia. One example is Alzheimer’s disease that occurs alongside vascular dementia and/or Lewy body dementia.
What are the signs and symptoms of dementia?
Dementia symptoms vary depending on the type and severity of the disease. But most types of dementia cause issues with:
- Communication, including the ability to speak and understand language
- Focusing and paying attention
- Memory
- Reasoning, judgment, and problem-solving
- Visual perception (beyond those changes that typically occur with age)
Alzheimer’s disease symptoms
Alzheimer’s disease often starts with memory lapses, trouble finding the right words to describe everyday objects, and mood swings. As the disease worsens, people may experience:
- Greater memory loss, including forgetting recent events and names and faces of people close to them
- Loss of language skills, including the ability to speak and interpret what’s being said
- Increasing confusion when handling complex tasks, such as finances
- Personality changes, such as appearing to no longer care about other people, including those close to them
- Mood swings, which may involve crying for no obvious reason
- Paranoia, including believing others are trying to harm them
As the disease progresses further, people may also:
- Adopt unsettling and sometimes dangerous behavior, such as getting lost in familiar places or wandering off
- Lose inhibitions, leading to behaviors such as undressing in public or making inappropriate and unwanted sexual advances
Vascular dementia symptoms
Symptoms of vascular dementia are usually similar to those of other dementia types. They can vary, however, depending on the part of the brain that’s affected. Because infarcts (areas of tissue death due to lack of blood supply) caused by strokes affect specific parts of the brain, some cognitive functions may remain intact. As such, people with vascular dementia may be more aware of the issues affecting their minds and bodies and thus more likely to experience depression than people with other dementia types.
People with vascular dementia tend to experience symptoms earlier than do people with Alzheimer’s disease. These include difficulties with:
- Executive function such as managing complex tasks, planning, solving problems, and using sound judgment
- Initiating actions, with a noticeable slowdown in the ability to think
As more strokes occur and vascular dementia worsens, other symptoms may occur:
- Difficulty speaking, which may include slurred speech
- Disruptive behavior, such as laughing or crying inappropriately
- Loss of coordination, which may cause an unsteady gait and a higher risk of falls
- Blurry vision or partial or complete vision loss
- Urinary incontinence (inability to control bladder function, which can cause urine to leak)
- Weakness or paralysis in an arm or a leg
CADASIL and CARASIL are two types of vascular dementia. CADASIL can cause migraine headaches or strokes, while CARASIL can lead to hair loss and degeneration of bones in the spine and the disks between them.
Around 60 percent of people die within five years of developing the first symptoms of vascular dementia, usually due to a stroke or heart attack.
Lewy body dementia symptoms
Lewy body dementia affects cognition and motor control. (Motor control describes the ability to control voluntary movements, such as those involved with walking, dressing, and eating.)
Symptoms of dementia with Lewy bodies
Although dementia with Lewy bodies (DLB) symptoms are similar to those of Alzheimer’s disease, the following characteristics of DLB helps set it apart:
Cognitive abilities fluctuate. These can shift dramatically over a period of days to weeks or from moment to moment. People with DLB may be fully alert, attentive, and able to carry on a coherent conversation on one given day. The following day, they may appear drowsy, inattentive, and remain mostly or completely mute. They may also stare into space for lengthy periods.
Copying and drawing skills may be impaired. These skills may be more severely impacted compared to other brain functions.
Executive functioning becomes increasingly difficult. These are the cognitive skills and abilities that allow people to plan, pay attention, remember details and instructions, juggle multiple tasks, set and achieve goals, and control behavior and impulses.
Memory is less affected (at first). Early in the experience of dementia with Lewy bodies, alertness and attention may be more notably impaired than memory. In fact, during the early stages of DLB, memory issues may have less to do with difficulty remembering and more to do with not being able to pay attention. Memory impairment becomes more obvious as DLB advances.
Psychotic symptoms are more common. These include:
- Delusions (false beliefs, which often involve misinterpretation of perceptions or experiences)
- Hallucinations (seeing or hearing things that aren’t actually there)
- Paranoia (unwarranted thoughts of being persecuted or threatened)
Hallucinations tend to be visual, and are often complex, detailed, and threatening. Delusions may also be complex and bizarre.
People with DLB may also experience symptoms common to Parkinson’s disease such as:
- Loss of balance and coordination, making them more prone to falls
- Muscle stiffness
- Slow and sluggish movement
- Shuffling gait (dragging feet when walking)
- Stooping over
- Tremors (although these tend to occur later and tend to be less intense than those experienced with Parkinson’s disease)
Sleep problems, such as rapid eye movement (REM) sleep behavior disorder, are also common with DLB. People with this disorder physically or verbally act out their dreams while asleep.
The body’s autonomic nervous system (ANS) may also malfunction with DLB, which can impede functions such as the regulation of body temperature and blood pressure. These can cause issues such as fainting and sweating too little or too much. People may also experience dry mouth, urinary issues, or constipation.
People typically live for around 6 to 12 years after DLB symptoms first develop.
Symptoms of Parkinson’s disease dementia
With Parkinson’s disease dementia, cognitive abilities start to deteriorate around 10 to 15 years after muscle and motor symptoms appear. Memory impairment occurs with trouble focusing and processing information. Thinking slows down, and issues with executive function appear earlier and tend to be more common than with Alzheimer’s disease.
Hallucinations and delusions may also occur but tend to be less severe than those that occur with DLB. Issues that affect balance, walking, and falls also occur, and muscle issues (such as stiffness and slowed movements) tend to worsen more quickly than in Parkinson’s disease without dementia.
Frontotemporal dementia symptoms
Symptoms of frontotemporal dementia (FTD) vary, depending on whether the frontal or temporal lobes are affected. Unlike Alzheimer’s disease, FTD has less of an impact on memory and more of an impact on behavior, language, and personality. The disorder makes it harder to think abstractly, pay attention, and recollect what’s been said.
People with FTD also struggle with performing complex tasks, such as those that involve following a sequence or processing ideas. They can usually carry out daily tasks, however, and are typically aware of the date and time and their location.
Some people may also experience muscle atrophy and weakness. Talking, chewing, and swallowing may be challenging since the head and neck muscles are often affected, a condition known as dysphagia. As a result, they may choke or inhale (aspirate) food into the lungs, raising the risk of aspiration pneumonia.
Specific characteristics of frontotemporal dementia include:
Frontotemporal dementia can trigger changes in personality and behavior
Some people with FTD may lose inhibition. As a result, they may speak rudely, exhibit highly sexual behavior, or engage in other types of behavior that’s considered inappropriate or out of character for them.
They may also be prone to impulsive or compulsive behavior. For instance, they may repeat the same behaviors such as walking to the same location several times per day.
People with frontotemporal dementia may neglect personal hygiene. Some people with FTD also develop Klüver-Bucy syndrome (KBS). This occurs when both temporal lobes of the brain are affected, especially the amygdala and hippocampus.
In addition to memory loss, KBS can produce issues such as:
- Eating disorders: People may become hyperfocused on eating only one type of food or develop bulimia, which involves binge eating and then compensating by purging what was just consumed.
- Hyperorality: This involves an overwhelming compulsion to place objects inside the mouth and licking as a way to examine them.
- Hypersexuality: People may lack social restraint when it comes to sexual behavior, which may involve exhibiting behavior considered inappropriate or attempting to have sex with inanimate objects.
- Placidity: People may develop a flat affect and decreased response to emotional stimuli. For instance, they may not respond to situations that would typically cause fear or anger or they may lack emotional attachment.
- Visual agnosia: Sometimes referred to as “psychic blindness,” this describes the inability to visually recognize familiar faces or objects.
Like frontotemporal dementia and Alzheimer’s disease, KBS has been tied to other conditions such as cannabis use, epilepsy (seizure disorder), heat stroke (heat-related illness in which body temperature rises above 104 degrees Fahrenheit), hypoglycemia (low blood sugar), non-Hodgkin’s lymphoma (a type of blood cancer), systemic lupus erythematosus (a chronic autoimmune condition), and traumatic brain injury.
Frontotemporal dementia may impair language skills
Most people with FTD have a hard time finding the proper words to convey what they’re thinking, with some developing:
- Anomia: Trouble naming common or everyday objects
- Aphasia: Partial or complete loss of the ability to use or understand spoken or written language
- Dysarthria: Issues with controlling muscles involved in speech, which can result in difficulty or inability to produce or articulate words properly
- Prosopagnosia (also called face blindness or facial agnosia): Inability to recognize one’s own face and that of others or interpret facial cues and expressions
For some people with FTD, language issues may be their only symptoms for a decade or longer, while others develop other dementia symptoms within a few years. People may repeat words they or others say and they may speak less as dementia worsens. At some point, they stop speaking altogether.
HIV-associated dementia symptoms
Symptoms of HIV-associated dementia may be subtle at first but tend to progress steadily over several months or years. They often develop after other HIV symptoms appear.
Early symptoms of HIV-associated dementia may include:
- Apathy (lack of interest, emotion, enthusiasm, or concern)
- Difficulty concentrating
- Slowed thinking and expression of thoughts
People with this dementia type may also move slowly, experience muscle weakness, and have trouble with body coordination. Some may also develop psychotic symptoms such as:
- Delusions
- Hallucinations
- Mania (often associated with bipolar disorder, this describes a state of mind in which excess energy, excitement, and euphoria are sustained over a period of time)
- Paranoia
Left untreated, HIV-associated dementia tends to grow more severe and can be fatal. When HIV infection is treated with antiretroviral therapy (ART), however, cognitive function sometimes dramatically improves.
ART combines several different medications used to treat the viral infection. The combination therapy disrupts HIV’s life cycle, keeping the virus from replicating and allowing the immune system to stay strong. Because the HIV infection isn’t cured, however, dementia symptoms may recur.
What are early, intermediate, and late symptoms of dementia?
Although there’s no standard staging system for dementia, signs and symptoms may be grouped into those that generally occur in the early, intermediate, or late phases of the disease. This may help those living with dementia and their caregivers better understand what to expect as symptoms progress.
Some dementia symptoms can occur at any point in the course of the disease. These include personality changes, behavior disorders (such as disruptive behavior), and sometimes seizures.
Behavior disorders that occur in people with dementia
Dementia gradually strips away the ability to control behavior. As a result, behaviors may grow increasingly disruptive and erratic. These may include actions such as hitting, throwing, wandering, or yelling, and behaving in ways considered inappropriate in public.
The effects of dementia contribute to these behaviors. For instance, people with dementia may have:
Difficulty expressing their needs clearly or at all: As such, they may wander away when they feel lonely, frightened, or can’t sleep. They may yell when they feel pain or are trying to communicate their needs.
Forgotten rules of proper behavior: This can lead them to behave in ways considered socially inappropriate, such as undressing in public when they feel hot, making sexual demands or masturbating in view of others when sexual impulses arise, or using lewd language.
Memory deficits: They often can’t remember what they or others have said or done. They may therefore repeat questions and conversations, demand constant attention, or ask for items (including foods) they’ve already received. Not receiving these items again when they ask for them may cause them to become upset and agitated.
Trouble understanding what they see and hear: They may lash out after misinterpreting a person’s efforts to help (such as helping them get undressed) as threatening. As a result, they may try to protect themselves by behaving aggressively, which may include assaulting, hitting, and screaming at others.
Early symptoms of dementia
Early signs of dementia tend to be mild or subtle. This can make it harder to pinpoint whether they’re related to dementia.
Memory, especially those related to recent events, is one of the first cognitive functions to deteriorate. People with dementia may find it increasingly difficult to:
- Find and use the right words
- Perform common tasks (such as remembering where they placed items or finding their way around familiar locations)
- Think abstractly (such as working with numbers)
- Understand language
- Use sound judgment
Personality and behavior changes may start to develop and some close friends and family members may notice these while others may miss them. Emotions may be unpredictable and suddenly switch from happiness to sadness.
Some people with early signs of dementia may hide these impairments from others. For instance, they may establish and adhere to routines at home and avoid more complex activities such as balancing their checkbooks, reading, or working.
Some people who can’t or don’t modify their lives to compensate for these shortcomings may feel frustrated and alarmed by their inability to perform daily tasks. They may forget to complete these tasks or perform them incorrectly. This may include forgetting to pay bills or turn off lights or the stove. They may remember how to drive, but they may feel confused in congested traffic or get lost more easily.
Intermediate symptoms of dementia
As dementia advances, symptoms may grow worse and new ones may develop. At this point, people with dementia may find it hard or impossible to:
- Control behavior
- Learn, process, and recall new information
- Perform daily activities such as bathing, dressing, eating, and using the toilet
- Recognize familiar people or objects
- Remember certain past events
- Stay oriented to time, date, and location
- Understand what they see and hear
They may get lost more often, such as on their way to their own bedroom or other rooms in their home. They can still walk but are more prone to falls. Driving becomes more difficult, as it calls for people to coordinate manual skills and sometimes respond quickly and adeptly. Getting lost while driving becomes more common.
Personality traits may become more pronounced. For instance, concerns over money may become obsessive. The tendency to worry can become constant and feel overwhelming.
Personality shifts may also occur. For instance, some people become anxious, easily angered, inflexible, irritable, and self-centered. Others appear depressed, expressionless, indecisive, passive, or withdrawn. People with dementia may lash out with agitation or hostility when others try to discuss these changes.
Some people with dementia experience sleep disruptions. They may struggle with restless sleep or insomnia or sleep an appropriate amount but spend less time in deep sleep, which is the most restorative phase of sleep. Others sleep too much, especially if they don’t engage in exercise and other activities to occupy their time during waking hours.
In about 10 percent of people with dementia, feelings of confusion may lead to psychosis (which may involve having delusions, hallucinations, and paranoia).
Late symptoms of dementia
At this point, people with dementia can no longer follow conversations or speak. They’ve lost all memory of recent and past events, and many can’t recognize their own face or those of close friends and family members.
Extensive brain damage and loss of neurons has rendered their brains largely incapacitated. Advanced dementia also interferes with muscle and motor control. People in the late stage of dementia can’t walk or perform daily activities for themselves and they become completely dependent on caregivers. They have difficulty swallowing, often choking or aspirating foods and liquids.
These issues raise the risk of malnourishment, aspiration pneumonia, and developing pressure ulcers (also called bedsores) from not being able to move and relieve pressure on the body. Severe infections, such as pneumonia, often have dire consequences for people with dementia, including death.
What causes dementia?
The cause of dementia depends on the type. Some dementias have reversible causes while others are irreversible.
Neurodegenerative diseases
Neurodegenerative diseases are those that occur when neurons break down and stop functioning properly. They’re usually progressive and irreversible. Damage to neurons renders the brain incapable of communicating effectively internally and across the body.
The four main types of neurodegenerative dementia include Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia. Examples of other neurodegenerative diseases that can cause dementia include:
- Huntington’s disease
- Prion diseases such as Creutzfeldt-Jakob disease
- Progressive supranuclear palsy
Reversible causes of dementia
Dementia can sometimes be reversed or cured if the brain hasn’t sustained too much damage. In cases where the brain has sustained extensive damage, proper treatment may prevent further damage, although it may not be able to reverse damage that’s already been done.
Causes of dementia that can be potentially reversed or improved with treatment include:
- Autoimmune disorders such as rheumatoid arthritis (autoimmune disorders occur when the body’s immune system malfunctions, causing it to attack its own tissues)
- Excessive or prolonged use of alcohol and other drugs
- Exposure to heavy metal toxins, such as lead or mercury
- HIV-associated dementia
- Infections such as Lyme disease (a bacterial infection transmitted by ticks), encephalitis (a viral infection that causes brain inflammation), cryptococcosis (a fungal infection), and neurosyphilis (a bacterial infection of the central nervous system)
- Hypothyroidism (underactive thyroid)
- Multiple sclerosis (a potentially disabling disease of the brain and spinal cord)
- Normal pressure hydrocephalus (which involves excess fluid buildup in the chambers of the brain known as its ventricles)
- Removable brain tumor
- Subdural hematoma (a buildup of blood on the brain’s surface, most often caused by a traumatic brain injury)
- Vitamin B deficiencies, including vitamins B3 (niacin), B1 (thiamin), and B12 (cobalamin)
What are the risk factors for dementia?
Some risk factors for dementia can be changed while others can’t.
Unchangeable risk factors for dementia
Older age: This is the strongest known risk factor for dementia. But while people are usually over the age of 65 when dementia symptoms start to appear, the disease isn’t an inevitable consequence of aging. Meanwhile, up to 9 percent of people are younger than 65 when they first develop symptoms, a condition referred to as early- or young-onset dementia.
Sex assigned at birth: People assigned female at birth (AFAB) tend to develop dementia more often than do people assigned male at birth (AMAB). Although the reasons are unclear, some experts believe that fluctuating estrogen levels and a longer life span in general may contribute to higher rates of dementia in people AFAB.
Race/ethnicity: Compared to white people, older African American people are two times more likely to develop dementia, while Hispanic people are 1.5 times more likely to develop it.
Genes: More than 20 genes have been linked to the development of dementia. The first such gene to be identified is the apolipoprotein E (APOE) gene, which is thought to increase the risk of Alzheimer’s disease. The APOE gene provides instructions for making a protein that helps carry cholesterol and other fats through the bloodstream. Issues that arise during this protein-building process are thought to contribute to the development of AD.
Three variants (versions or mutations) of the APOE gene occur in humans. These are called alleles (indicated by the Greek letter epsilon, or ε).
- APOE ε2: This variant may help protect against AD. Those with this allele who do develop Alzheimer’s tend to do so later in life than those with the APOE ε4 gene.
- APOE ε3: Although it’s the most common of the APOE alleles, it seems to have a neutral effect on the disease. This means it doesn’t increase or decrease the risk of AD.
- APOE ε4: This version raises the risk of AD and is thought to increase the risk of early-onset dementia. Around 15 to 25 percent of people carry this allele, and 2 to 5 percent carry two copies (one from each biological parent), amplifying the risk of dementia further.
Certain genes can directly cause dementia (unlike the APOE ε4 gene, which only raises the risk for AD). These are referred to as deterministic genes, and they result in what’s known as familial Alzheimer’s disease. They account for less than 1 percent of dementias, most of which occur before the age of 65.
For instance, mutations in three genes are known to cause dementia, particularly Alzheimer’s disease. These include mutations in the:
- Amyloid precursor protein (APP) gene
- Presenilin 1 (PSEN1) gene
- Presenilin 2 (PSEN 2) gene
Changeable risk factors for dementia
An influential 2020 report by the Lancet Commission listed 12 potentially changeable (modifiable) risk factors for dementia. These include risk factors that occur across several periods in a person’s life:
Risk factors that occur earlier in life (before age 45):
- Less education attained
Risk factors that occur during midlife (age 45 to 65):
- Hearing loss, especially if hearing aids aren’t used
- Traumatic brain injury
- High blood pressure
- Heavy alcohol consumption
- Obesity, generally described as a body mass index (BMI) of 30 or higher
Risk factors that occur later in life (after age 65):
It’s important to note that depression may be part of the prodrome of dementia, meaning it may develop before the first dementia symptoms appear. This relationship may go both ways, too: Depression may raise the risk of dementia and dementia may raise the risk of depression.
How is dementia diagnosed?
To help diagnose dementia, a healthcare provider (HCP) will discuss symptoms and the person’s personal and family medical histories. They’ll also talk with family members to get a more complete perspective of how symptoms impact the person’s daily life.
The HCP will then perform a physical exam, which includes a neurologic exam, to determine whether other health conditions may be causing dementia symptoms. For instance, they’ll likely look for treatable issues that may be causing, contributing to, or mistaken for dementia.
To help confirm or rule out dementia and other causes, an HCP may also order or perform the following:
Neurological evaluation for dementia
This exam evaluates a person’s:
- Use of language
- Vision
- Ability to walk
- Reflexes
- Senses
- Spatial orientation (one’s perception with respect to the surrounding environment)
The HCP performing the test may ask the person to name objects, follow written and verbal commands, write sentences, or draw complex shapes. They may also ask the person to walk a short distance to assess gait issues, which may point to a Lewy body dementia such as Parkinson’s disease dementia.
Psychiatric evaluation for dementia
During a psychiatric evaluation, the HCP assesses cognitive functions such as memory, ability to concentrate, and orientation to time, date, and place. They may also ask questions to assess behavior and mood and how changes associated with cognitive abilities, behavior, and mood may affect daily activities. The HCP may also discuss any medications a person may be taking, as some contribute to memory issues and confusion.
Psychometric testing for dementia
An HCP may use written or computerized tests to measure a person’s cognitive abilities. This might include tests that measure the accuracy and speed of cognitive processes such as:
- Attentiveness
- Decision-making
- Language skills
- Planning
- Organizing
- Problem-solving
- Recalling details
Examples of tests used to assess cognitive function include the:
- Mini-mental status examination (MMSE)
- Montreal Cognitive Assessment (MoCA)
- Saint Louis University Mental Status (SLUMS)
- Addenbrooke's Cognitive Examination-Revised (ACE-R)
- Modified mini-mental state examination
- Mini-Cog
- Rowland Universal Dementia Assessment Scale (RUDAS)
If dementia is diagnosed, the tests may be repeated in the future to document the progression of cognitive decline. They can help pinpoint which cognitive areas are affected and the severity of deficits.
Imaging scans for dementia
Magnetic resonance imaging (MRI) or computed tomography (CT) of the brain may be ordered as part of the initial evaluation for dementia. These imaging tests can help identify issues that may cause dementia such as a brain tumor or stroke.
Positron emission tomography (PET) or single-photon emission CT (SPECT) use radioactive substances to create detailed images, which show areas of activity and inactivity in the brain and how well the parts of the brain work. They can also help distinguish between different types of dementia, including Alzheimer’s disease, dementia with Lewy bodies, and frontotemporal dementia.
Lumbar puncture to distinguish between dementia types
If results of CT or MRI do not suggest that pressure within the skull has increased (a potentially life-threatening condition known as increased intracranial pressure, or ICP), HCPs usually perform a procedure called a lumbar puncture. During this procedure, also called a spinal tap, the HCP will obtain a sample of cerebrospinal fluid (CSF) from the area around the spinal cord for analysis. Findings can support but not confirm the diagnosis of HIV-associated dementia.
If CSF analysis detects beta-amyloid and PET scans show deposits of beta-amyloid or tau in the brain, the diagnosis is more likely to be Alzheimer’s disease. Beta-amyloid and tau are abnormal protein deposits that often occur in people with this dementia type.
Laboratory tests
These can help determine other treatable causes of dementia. For instance, blood tests to measure thyroid hormone levels can help check for thyroid disorders while tests that measure B12 levels can check for deficiency. If the HCP suspects that dementia symptoms may be due to an autoimmune disorder, infection in the brain, or prion disease, they may also perform a spinal tap to collect CSF for testing.
What are the possible complications of dementia?
The following complications may occur in people with dementia, as the various types may affect multiple body systems:
- Anxiety and depression
- Bladder and bowel incontinence
- Dehydration, malnutrition, and nutrient deficiencies
- Dysphagia (difficulty swallowing from weakened or damaged muscles)
- Fractures and other injuries caused by falls
- Inability to perform self-care tasks
- Infections, including those severe enough to cause sepsis, a life-threatening infection that can cause organ damage and failure, as well as death
- Personal safety challenges
- Personality changes
- Pressure ulcers
- Psychosis, including delusions, hallucinations, and paranoia
Eventually, death may result from dementia.
When should you see a healthcare provider?
Be sure to see an HCP if you notice signs that may point to dementia, such as:
- Memory lapses or loss, including those involving recent events
- Difficulty with common, everyday tasks
- Language issues (such as forgetting simple words or using words out of context or that don’t fit what you’re trying to convey)
- Disorientation of time and place, including forgetting how to get home
- Poor judgment, including engaging in risky behaviors
- Problems with abstract thinking, such as with tasks like counting or taking care of finances
- Misplacing things more often
- Changes in mood or behavior, such as rapid mood swings for no apparent reason
- Changes in personality, such as growing more suspicious, fearful, uninhibited, or outgoing than before
- Lack of initiative or motivation, including becoming more passive or uninvolved in activities
What questions should you ask your healthcare provider?
If you’re diagnosed with dementia, asking your HCP these questions can help you better understand your treatment options and what to expect as the disease progresses.
- What type of dementia do I have, and what likely caused it?
- How does this type of dementia progress?
- How long does it usually take before dementia symptoms get worse?
- What changes should I expect, and how quickly might these occur?
- What are my treatment options? Are there side effects of these treatments?
- How will I know if my dementia treatment plan is working?
- What type of care and support will I need now and in the future?
- Is there any way to slow down cognitive decline and other dementia symptoms?
- How might dementia impact my overall health?
- Is living at home still an option? If so, for how long?
- Will I be a danger to myself or others?
- Is it still safe for me to drive? How will I know when this is no longer the case?
- Will I suffer as the disease progresses?
- What plans can I make now to prepare for when I can no longer make decisions for myself?
- Are there any dementia resources you can recommend?
- Are there organizations in my area that provide services and support for people living with dementia?
- Can you refer me to local organizations that provide respite care?
- Are you aware of any dementia clinical trials I might qualify for?
How is dementia treated?
It’s important to work with your HCP and other members of your healthcare team to develop a dementia treatment plan that accounts for your needs, which may change over time. You and your caregivers will want to understand the risks and benefits associated with each treatment option.
To optimize your dementia treatment plan, your HCP will consider your:
- Age and overall health
- Current treatment goals
- Type and severity of dementia symptoms along with how they impact your life
- Living situation and access to and support from family or other caregivers
Medications for dementia
Medications approved by the U.S. Food and Drug Administration (FDA) for dementia include:
Cholinesterase inhibitors: These may be used to treat mild to moderate Alzheimer’s disease or Lewy body dementia symptoms. They work by preventing the breakdown of acetylcholine, a neurotransmitter (brain chemical) that helps neurons communicate with one another and plays a role in memory and learning.
Cholinesterase inhibitors (such as donepezil, galantamine, and rivastigmine) may temporarily improve cognitive function in people with dementia, but they can’t slow the progress of the disease. They tend to be most beneficial with early dementia symptoms, but their effectiveness can vary from person to person.
Around one-third of people with dementia don’t experience any benefit, whereas one-third experience slight improvement in cognitive functions for several months. The rest experience substantial improvement for longer periods, although the disease eventually progresses.
Memantine: As dementia progresses, memantine may be added to the treatment plan to improve cognitive function in people with moderate to severe dementia. The medication is an N-methyl-D-aspartate (NMDA) antagonist that works by blocking the activity of the neurotransmitter glutamate.
Memantine may be combined with cholinesterase inhibitors because each works on the brain in different ways. The treatment combination tends to be more effective than either alone.
Aducanumab: This recombinant monoclonal antibody is FDA-approved to treat mild Alzheimer’s disease. (Recombinant monoclonal antibodies are made in a lab using synthetic genes and antibody fragments to make proteins that mimic immune system antibodies.) The medicine works by targeting beta-amyloid plaques involved in the development of the disease.
Lecanemab: In July 2023, the FDA granted full approval to the monoclonal antibody lecanemab, which has been shown to slow cognitive decline in the early stages of Alzheimer’s disease. Lecanemab also works by reducing beta-amyloid plaques.
Medications for behavioral disorders associated with dementia
Medications to manage behavioral issues may also be considered when non-drug strategies (see below) don’t work and when using medicines is critical to keep the person with dementia and others safe. Depending on the person’s symptoms, this might include:
- Anticonvulsant (antiseizure) medications (such as carbamazepine, gabapentin, and valproate) to help control violent outbursts
- Antidepressants (such as citalopram, mirtazapine, sertraline, and trazodone) for people with dementia who also have depression
- Antipsychotic medications (such as aripiprazole, olanzapine, quetiapine, and risperidone) to help control agitation and outbursts in people with psychotic symptoms such as delusions, hallucinations, and paranoia
Dementia type and symptoms determine the medications used
Which dementia medications can be used depends on factors such as dementia type and symptoms. Some of these are used for more than one type.
For instance, the same medications used to treat Alzheimer’s disease (AD) may be used to treat dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). An example is rivastigmine, which may improve cognitive function in people with these dementia types.
Medications used to treat Parkinson’s disease (PD) may help relieve PD symptoms that occur with both PDD and DLB. But for some people with DLB, these medications may worsen confusion, delusions, and hallucinations.
In people with DLB, first-generation (also called typical, older, or conventional) antipsychotic medicines such as haloperidol and chlorpromazine tend to worsen muscle and movement symptoms. They are therefore best avoided. Low doses of second-generation (also called atypical or newer) antipsychotic medicines such as aripiprazole are preferred.
Pimavanserin is a second-generation antipsychotic medicine used to treat hallucinations and delusions in people with PD. It was the first and still is the only medication approved by the FDA to treat Parkinson’s disease psychosis.
Although there’s no specific treatment for vascular dementia, sometimes cholinesterase inhibitors such as rivastigmine and memantine (commonly used to treat AD) are prescribed for people with mixed dementia involving AD and vascular dementia.
People with a higher risk for or history of a stroke or who have a disease that affects vascular (blood vessel) health may be prescribed medications to prevent or treat these conditions as needed. These include conditions such as diabetes, high cholesterol, and atherosclerosis, which pose a higher risk of complications associated with the development of vascular dementia such as having one or more strokes.
Non-drug therapies
Various non-drug therapies may be used to help manage dementia and associated behaviors. Examples include:
Behavior management strategies for dementia
This might involve making changes to one’s environment, such as reducing noise and clutter, making it easier to function and focus. It might also involve hiding objects that threaten safety, such as knives and car keys. Identifying triggers for disruptive behaviors and learning how to gently redirect attention away from those triggers may also help.
Supportive therapies for dementia
Some supportive therapies may also help manage dementia symptoms and improve quality of life. Examples include:
Aromatherapy: Certain scents may help ease anxiety and agitation. This might include essential oils with lavender or lemon balm.
Cognitive rehabilitation: This involves working with a trained healthcare professional, such as an occupational therapist (OT), to help learn behaviors and strategies that help compensate for cognitive decline. It teaches the person how to use parts of the brain that are working well to support the parts that are not. An OT can also help make the home safer for the person with dementia.
Cognitive stimulation therapy (CST): This involves participating in group activities and exercises designed to improve memory, language, and problem-solving skills. It might involve playing games or completing puzzles, discussing topics of interest, or taking part in practical activities such as gardening.
Massage therapy: This might help a person with dementia feel less agitated and tense.
Music therapy: Listening to soothing or relaxing music may help reduce agitation, aggression, and anxiety.
Pet therapy: Spending time with an animal might help decrease anxiety, agitation, depression, irritability, and loneliness. For people who aren’t able to care for a pet, certain agencies allow patients to enjoy animal companionship for short periods of time.
Physical activity: Engaging in regular, light physical activity might help the person with dementia perform certain daily tasks more effectively. Exercise might also improve mood and ease anxiety and stress.
Reminiscence therapy: This involves talking about things and events from the person’s past with the help of props, such as favorite possessions, music, or photos. The therapeutic process helps the person take their mind off dementia and focus on their skills and achievements instead.
Can you prevent dementia?
Although there’s no absolute way to prevent the disease, you can take steps to lower your risk for dementia. Aim to:
Control high blood pressure. Taking your blood pressure medicines as instructed by your HCP along with adopting healthy habits—such as exercising, quitting smoking, and eating a wholesome diet—might help lower the risk of vascular dementia.
Eat whole, nourishing foods. Focus on whole foods such as fruits, vegetables, lean meats, seafood, and whole grains. Limit saturated fats and added sugars.
Get enough quality sleep. Aim to get at least seven hours of quality sleep each night (or day, if you work night shifts). If you’re having trouble sleeping or suspect you have a sleep disorder, be sure to talk with your HCP.
Get your hearing and vision checked. If you’re having trouble hearing clearly, be sure to get your hearing checked. Hearing loss can affect cognition and raise the risk of dementia in older adults. It can also make it harder to interact with others, which might contribute to social isolation. Protect your ears from loud sounds by turning down the volume and wear your hearing aids, if you have them. The same goes for working to maintain your vision. It’s essential to have regular eye checks, particularly as you age.
Keep physically active. This can help lower your risk of many health conditions associated with dementia, such as high blood pressure, obesity, and stroke. Aim to get 30 to 60 minutes of moderate- to vigorous-intensity physical activity most days of the week.
Keep mentally active. Give your mind a workout, too. This might include reading, playing a musical instrument, engaging in crafts or hobbies you enjoy, working on puzzles, learning a new skill or language, or volunteering for a cause you care about.
Keep socially active. Taking time to connect with others and participate in social activities can help prevent loneliness and social isolation, which are linked to cognitive decline and Alzheimer’s disease.
Manage blood sugar. High blood sugar levels can raise the risk of cognitive impairment and dementia in addition to diabetes and stroke. Eating whole, nutrient-rich foods, exercising, quitting smoking, and keeping stress in check can help you control your blood sugar more effectively.
Prioritize your physical and mental health. Manage chronic health conditions such as depression and high cholesterol, keep up with recommended health screenings, and make sure you get routine checkups.
Protect your head. Wear seatbelts when driving as well as helmets that fit properly and are appropriate for your activity (such as sports or biking). Doing so can help prevent traumatic brain injuries such as concussions. Wearing non-skid shoes that fit and support your feet properly and removing or securing loose rugs in your home can also help prevent falls that can cause head injuries.
Quit tobacco. Doing so can lower your risk of dementia along with many other health conditions.
Try to maintain a healthy weight. Being overweight or obese raises the risk of health conditions associated with dementia such as diabetes and heart disease. Eating a wholesome diet and working out on a routine basis can help you maintain a healthy weight. If you need help with this, talk with your HCP about other approaches you can try to help you reach your weight goals.
Watch your alcohol intake. Drinking excess amounts of alcohol can lead to cognitive impairment and worsen health conditions associated with dementia such as diabetes, high blood pressure, stroke, and mood disorders.
What is the outlook for dementia?
With the exception of treatable causes of dementia, there’s no cure for most types. Early diagnosis, treatment, and supportive care can improve people’s quality of life and outcomes. For treatable causes of the disease, early diagnosis and treatment may help prevent further damage and in some cases reverse the damage that’s already been sustained.
Irreversible dementia types are progressive. This means the damage to the brain worsens as time goes on.
How quickly dementia symptoms develop and progress can differ for each person. Individual factors (such as the type of dementia, co-existing health conditions, and treatments received) can affect the pace of cognitive and physical decline caused by dementia.
Living with dementia
Living with dementia means finding ways to support your well-being and quality of life for as long as possible. You can still experience joy and happiness in life as you move through the seasons of dementia and the many changes taking place.
Coping with the emotional side of dementia
Finding healthy ways to cope may help. For instance, you may want to:
- Work with your thoughts and emotions through journaling.
- Find meaningful ways to express yourself, such as through art, dancing, or singing.
- Stay active socially and involved in your community, which may include volunteering, exercising, and participating in activities for people with memory loss.
- Spend time with friends and family.
- Join an in-person or online support group for people with dementia.
- Seek individual or family therapy with a licensed mental health provider.
- Reach out to your spiritual advisor.
Living with dementia also involves navigating the healthcare system and finding resources and support services. Knowing what help is available, planning support, and finding services that fit your needs are essential.
Over time, it will become harder to make decisions about your care or your finances. It’s therefore important to plan ahead. Work on identifying people you trust to support you in making decisions and to help you communicate your choices. Create a written plan in advance that clearly communicates your wishes and preferences, including those involving your care.
Daily living strategies for people with dementia
These tips might help you complete common or everyday tasks and keep you safe:
- Each time you leave your house, bring a list of emergency contacts and your driver’s license or other photo ID that has your name and address.
- Install safety devices in your home, such as smoke and carbon monoxide alarms, as well as sink and bathtub overflow detectors.
- Organize your medicines in a pill container labeled with the days of the week, which may help you remember to take your medicines.
- Pin your weekly schedule or calendar of activities to the wall or use a dry-erase planner.
- Place helpful phone numbers where you can easily see them.
- Place labels on cupboards or drawers.
- Place your keys in an obvious place, such as hanging on a hook or in a bowl by the door.
- Enter people’s names, numbers, and photos into your phone.
- Read the daily newspaper to remind you of the date and to keep your mind engaged.
- Set up automatic bill payments so you don’t forget to pay for essentials.
- Write down what you want to remember in a diary.
Caring for caregivers of people with dementia
Caring for a loved one with dementia can be complex and demanding. The physical demands of being a caregiver can be significant. You may also experience a range of emotions associated with watching the person you love gradually lose their mental and physical faculties. Coming to grips with their fate can be a source of emotional pain and stress.
As such, caregivers of people with dementia often experience a higher rate of depression than the general population. Depression can cause a range of issues for caregivers, including:
- Raising their risk of suicide
- Compromising their physical health
- Reducing their quality of life
Caregivers with depression are more likely to place their loved ones with dementia in institutional care facilities more quickly than caregivers who aren’t depressed. Moreover, studies have shown that people with dementia are more likely to experience rapid cognitive decline when their caregivers are depressed.
In some cases, caregivers sacrifice their own physical and mental well-being to care for the ones they love. But providing the best care for someone with dementia also means caring for yourself and seeing to your own needs. These tips might help you cope better with the challenges associated with caregiving, as well as see to it that your physical, mental, emotional, and spiritual needs are met:
Mind your physical health. Keep up with your own HCP, whether for routine visits, annual check-ups, or because you’re not feeling well. Focus on eating whole, nutrient-rich foods and try to get quality sleep on a regular basis.
Build physical activity into your routine, even if it’s just for 10 minutes at a time. Walking, strength training, and yoga are some of the many ways to ease stress while boosting physical fitness and health.
Activities like dancing can help boost brain health, lower the risk for dementia, and improve balance, mobility, and cognition. Partnered dance styles (referred to as social dancing) such as the foxtrot, waltz, salsa, and East Coast swing may be of particular benefit to your brain.
Find time to relax. Simple stress-management techniques can help you relax and unwind the physical and emotional tension associated with caregiving. This might involve breathing exercises, meditation, soaking in a warm bath, or practicing a hobby that brings you joy. Sharecare Windows can also help you find stillness and peace in your everyday life.
Expand your knowledge of dementia. Learn as much as you can about the type of dementia your loved one has before the need for caregiving arises. Just be sure the information you’re learning is credible and based on current scientific evidence. This can help prevent some of the turmoil and upheaval that may come with not understanding the complexities of dementia.
Plan for legal and financial needs. Beginning legal and financial discussions soon after your loved one receives a dementia diagnosis allows them to participate when they’re still able to do so. Although many documents can be self-prepared, seeking assistance from an attorney and financial advisor might also be of benefit, especially if you’re unsure of how to proceed with planning for these needs.
Join a dementia caregiver support group and online community. Access the Alzheimer’s Association website to find online or in-person support groups for caregivers of people living with dementia. The association also hosts ALZConnected, a free online community for people living with dementia and those who care for them. Members of this community can post questions about issues related to dementia, offer support to one another, and create private and public groups about relevant topics.
Coordinate your dementia care resource team. First of all, accept help from friends and other family members. This is how you can start to build your loved one’s resource team.
Try to coordinate help in a way that meets the needs of your loved one with dementia along with your own. An online care team calendar may help you better organize this supportive care.
The Alzheimer’s Association recommends these free resources to help build your loved one’s care team, share tasks, and coordinate help. They also allow you to post when, where, and why you need assistance. Care team members can then sign up for posted tasks.
These online care calendars also allow for family members who don’t live nearby to help with tasks that can be performed from a distance, such as arranging appointments and managing finances. Friends and family members can also access ALZConnected to post announcements and share pertinent information for members of your loved one’s care resource team.
Reach out to respite care. These agencies allow caregivers to take a temporary break from caregiving, while their loved one with dementia continues to receive care. Talk with your HCP about respite care agencies that are covered by your loved one’s insurance plan or that provide free or affordable services. You can also access the Alzheimer’s Association’s Community Resource Finder, a free online tool to help you find respite care services and other programs and services in your community.
Tap into community resources. In addition to respite care, these might include adult day programs, in-home help, meal delivery, and visiting (home health) nurses. The Community Resource Finder noted above can help you locate your local services. Your loved one’s HCP can also refer you to a nurse case manager or social worker, who can help you coordinate these services.
Seek professional counseling. Consider seeking guidance, counseling, and support from a licensed mental health provider, if you feel the weight of your stress has become too much to bear alone. If you’d like, you can ask for an HCP referral to a mental health provider with experience providing guidance and counseling to caregivers of people with dementia. You may also want to seek counsel from a trusted spiritual advisor.
Talk with someone now. If your levels of distress are such that you are contemplating suicide or need emotional support, contact the 988 Suicide & Crisis Lifeline online or by texting or calling 988. Lifeline counselors across the United States are available to provide free and prompt assistance 24 hours a day, 7 days a week.
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