Dementia? Do Pigs Really Fly? Dementia Behavior Can Seem Like Manipulation

Kay Bransford calls her parents the “senior edition of Bonnie and Clyde.” Both have been recently diagnosed with dementia, but have been showing signs of forgetfulness for the past year or two.

Bransford recalls her parents, who have both had their driver’s licenses revoked but continue to drive, telling her the story they’ll tell police if they’re ever pulled over. In that moment, Bransford is certain the couple knows that they’re not allowed to drive, and are defiant about breaking the law. But just minutes later, the couple has forgotten the story completely and they don’t remember even having driver’s licenses. It’s just one of the many stories Bransford has about her parents’ deteriorating behavior. She admits, she sometimes wonders whether her parents are manipulating her and others, and that just adds to the guilt caregivers like her often experience.

“They’re not the parents I knew,” says Bransford, who cares for her 81-year-old mother and 80-year-old father. “It took me a while to realize that. In frustration I thought, ‘Is this the woman my mom really is?’ She’s saying so many things my mom would never have said. I know it’s a manifestation of the disease, but in the moment, I took it personally.”

Amanda Smith, M.D., medical director of the Byrd Alzheimer’s Institute at the University of South Florida estimates that one-quarter of the caregivers she interacts with have concerns similar to Bransford, and they question her about whether their parents are manipulating them.

“Sometimes caregivers assume that (their loved ones) are being manipulative because they just can’t believe their behavior,” she explains. But in reality, people with dementia aren’t able to think through the process of manipulation.

Adds her USF colleague, Eileen Pioley, an Alzheimer’s education director, short-term memory is the first to go for dementia patients. But it’s not uncommon for people to have mixed dementia, with different parts of the brain being affected. In one form of dementia called Lewy Body, memory quickly fluctuates. If a patient has frontotemporal dementia (also known as Pick’s Disease), it effects the part of the brain that filters behavior. So the person may do or say things that are socially inappropriate, but they have no gauge of right or wrong, which is why a loved one may lash out and make hurtful statements.

Additionally, people with dementia often know that they’re losing control and become afraid. Like a child, they act out because they’ve lost the ability to help themselves. Those emotions may also cause a patient to become easily agitated.

Notes Poiley, “The cognitive skills we have, dementia patients lose: logic, reasoning, problem-solving, decision-making. So a patient really couldn’t be manipulative.”

For those taking care of a person with dementia, there are several ways to cope with the conflicting emotions that most caregivers experience.

  1. Don’t take it personally: There is nothing to be gained by thinking your parent is being manipulative. Poiley believes this just adds to a caregiver’s stress. Instead, blame the disease and not the person. Set a goal to maximize and enjoy the time you have with them.
  2. Practice empathy: Kevin Henning, M.D. chief medical director at Amedisys Home Health Care, encourages caregivers to consider what their loved one is going through. “It’s hard for dementia patients to lose independence and it’s scary for them.”
  3. Avoid arguments: “You will not win an argument with a dementia patient. You can try to reason with them but you’ll never get anywhere,” adds Dr. Henning. This advice has been especially helpful for caregiver Kay Bransford, who says she no longer disagrees with her parents on issues she knows are untrue.
  4. Take a break: If you do find yourself arguing with your loved one, walk away for a few minutes. It’s very possible the person with dementia won’t remember the conversation, let alone the argument after a few minutes. It’s also important that as a caregiver, you get respite. “Caregiving is a 24/7 job,” adds Dr. Henning. “You have to get away from it sometimes.” Look into adult daycare for dementia patients, or see if another family member or home healthcare professional can care for your loved one for a few hours, so you can get a break.
  5. Listen and reassure: It can be hard when what a loved one says is illogical, but it’s important to listen and be patient with them. No one chooses to have dementia, so reassure your loved one as best you can that you are there to help them through this journey.
  6. Look for triggers: Try to get to the bottom of what drives your loved one’s behavior, suggests Dr. Smith. It may be environmental factors – for instance, your loved one may be cold, but can’t express that to you. Or your loved one may feel lost and alone. Consider what sparks outbursts or on-going arguments.
  7. Get help: Some medications can be very effective in assisting dementia patients with the anxiety they feel, so be sure to discuss your loved one’s behavior with their doctor or other healthcare professionals. It’s also important to seek emotional assistance as a caregiver when you need it. Find a support group where you can share your experiences and know that others are going through the same thing.
  8. Have a plan: Bransford wishes her parents had made their wishes about caregiving known to her and her siblings before they became ill. If possible, have your loved one consider the pros and cons of assisted living, nursing homes, home health care and other options, and have them decide how they want to spend their final days before their condition deteriorates.

While it’s still not easy for Bransford to reconcile the memory of her parents just a few years ago with their current condition, she considers that acceptance a mourning process. And Bransford likens her parent’s behavior to people who have suffered brain trauma. “I have to remember that they’re not doing things to be mean or cruel – there’s something wrong with their head. It doesn’t always take away the doubt, but it does get easier.”

Dementia: how many types of dementia are known? what are the symptoms?

According to the World Health Organization, an estimated 47.5 million people worldwide are living with this dementia and 7.7 million new cases are diagnosed each year.

Caused by a variety of different mechanisms and illnesses, it is usually chronic and progressive and affects memory, cognitive skills, behavior, and everyday abilities. It is overwhelming for the patient, their family and especially those who provide care.

Caregivers and their elderly parents have many questions and concerns about dementia, so it is important to understand the different types of dementia how they affect the elderly.

Many barriers exist regarding the availability of correct information and resources. This negatively impacts the general public when it comes to diagnosis, care and stigma of the syndrome.

Dementing disorders can be classified in many different ways.

These classifications are used to group disorders that share some common features, such as whether they are progressive or what parts of the brain are affected.

Although the condition primarily affects individuals over age 65, it is not a normal part of getting older.

Some frequently used classifications include the following:

Cortical Dementia: The brain damage primarily affects the brain’s cortex, or outer layer. It tends to cause problems with memory, language, thinking, and social behavior.

Subcortical Dementia: Affects parts of the brain below the cortex. Subcortical types tend to cause changes in emotions and movement in addition to problems with memory.

Progressive Dementia: This type gets worse over time, gradually interfering with more cognitive abilities and daily activities.

Primary Dementia: This type does not result from any other disease. Alzheimer’s disease (AD) is a primary type.

Secondary Dementia: The condition occurs as a result of a physical disease or injury.

Some types fit into more than one of these classifications. For example, AD is considered both progressive and cortical.

Alzheimer’s Disease

Alzheimer’s disease (AD) is the most common cause of dementia in people aged 65 and older. Experts believe that up to 5.3 million people in the United States are currently living with the disease. This means one in ten people over the age of 65 has AD. Hundreds of thousands of Americans are diagnosed with AD each year and it is the sixth leading cause of death in the United States.

In most people, symptoms appear after age 60. It usually causes a gradual decline in cognitive abilities, typically over a span of 7 to 10 years. Nearly all brain functions, including memory, movement, language, judgment, behavior, and abstract thinking, are eventually affected.

AD is characterized by two abnormalities in the brain: amyloid plaques and neurofibrillary tangles. Amyloid plaques found in the tissue between nerve cells are unusual clumps of a protein called beta amyloid along with degenerating bits of neurons and other cells. Neurofibrillary tangles are composed of tau proteins that accumulate within nerve cells in the brain.

Symptoms of AD

In the early stages, people may experience memory impairment, lapses of judgment, and subtle changes in personality. As the disorder progresses, memory and language problems worsen and people begin to have difficulty performing activities of daily living, such as balancing a checkbook or remembering to take medications.

They also may have difficulty navigating an unfamiliar route, become disoriented about places and times, suffer from delusions (such as the idea that someone is stealing from them or that their spouse is being unfaithful), or become short-tempered and hostile.

During the late stages, elders begin to lose the ability to control motor functions. They may have difficulty swallowing and lose bowel and bladder control. They eventually lose the ability to recognize family members and to speak.

It also begins to severely affect the person’s emotions and behavior. Most people eventually develop symptoms such as aggression, agitation, depression, sleeplessness, paranoia or delusions.

How Long Do People with Alzheimer’s Live?

On average, individuals live for 8 to 10 years after they are diagnosed. However, some people may live as long as 20 years. The true cause of death in these patients is often aspiration pneumonia because they lose the ability to swallow late in the course of the disease.

Vascular Dementia

This type is the second most common cause after AD, accounting for an estmated 20 to 30 percent of all dementias. It is caused by brain damage from cerebrovascular or cardiovascular problems (usually strokes).

It also may result from genetic diseases, endocarditis (infection of a heart valve), or amyloid angiopathy (a process in which amyloid protein builds up in the brain’s blood vessels, sometimes causing hemorrhagic or “bleeding” strokes). In many cases, it may coexist with AD.

Symptoms of Vascular Dementia

Affected individuals frequently wander at night and often have other problems commonly found in people who have had a stroke, including depression and incontinence.

Symptoms often begin suddenly, frequently after a stroke. Those at the highest risk have a history of high blood pressure, vascular disease, or previous strokes or heart attacks. It may or may not get worse with time, depending on whether the person has additional strokes. When the disease does get worse, it often progresses in a steps or stages, with sudden changes in ability.

When coupled with brain damage to the mid-brain regions, gradual, progressive cognitive impairment can occur that often strongly resembles AD. Unlike elders with AD, though, these patients often maintain their personality and normal levels of emotional responsiveness until the later stages of the disease.

Types of Vascular Dementia

There are several types, which vary slightly in their causes and symptoms.

Multi-infarct dementia (MID): This type is caused by numerous small strokes in the brain. MID typically includes multiple damaged areas, called infarcts, along with extensive lesions in the white matter, or nerve fibers, of the brain.

Single-Infarct Dementia: Although not all strokes cause cognitive problems, in some cases a single massive stroke can damage a specific area of the brain enough to cause dementia. This is more common when the stroke takes place on the left side (hemisphere) of the brain and/or when it involves the hippocampus, a brain structure important for memory.

Binswanger’s Disease: This is a rare type characterized by damage to small blood vessels in the white matter of the brain (white matter is found in the inner layers of the brain and contains many nerve fibers coated with a whitish, fatty substance called myelin). Binswanger’s leads to brain lesions, loss of memory, disordered cognition, and mood changes.

People with this disease often show signs of abnormal blood pressure, stroke, blood abnormalities, disease of the large blood vessels in the neck, and/or disease of the heart valves. Other prominent features include urinary incontinence, difficulty walking, clumsiness, slowness, lack of facial expression, and speech difficulty.

These symptoms, which usually begin after the age of 60, are not always present in all people and may sometimes appear only temporarily. Treatment of Binswanger’s is symptomatic, and may include the use of medications to control high blood pressure, depression, heart arrhythmias, and low blood pressure. The disorder often includes episodes of partial recovery.

CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarct and leukoencephalopathy): This type is linked to a rare hereditary disorder and is linked to abnormalities of a specific gene, Notch3, which is located on chromosome 19.

This condition causes MID as well as stroke, migraine with aura, and mood disorders. The first symptoms usually appear in people who are in their twenties, thirties or forties and affected individuals often die by age 65. Researchers believe most people with CADASIL go undiagnosed, and the actual prevalence of the disease is not yet known.

Other vascular causes include vasculitis, an inflammation of the blood vessel system; profound hypotension (low blood pressure); and lesions caused by brain hemorrhage. The autoimmune disease lupus erythematosus and the inflammatory disease temporal arteritis can also damage blood vessels in a way that leads to a vascular dementia diagnosis.

Lewy Body Dementia

Lewy Body Dementia (LBD) usually occurs sporadically in people with no known family history of the disease. However, rare familial cases have occasionally been reported. In LBD, cells die in the brain’s cortex, or outer layer, and in a part of the mid-brain called the substantia nigra which plays an important role in movement, learning, reward-seeking and addiction.

Many of the remaining nerve cells in the substantia nigra contain abnormal structures called Lewy bodies that are the hallmark of the disease. Lewy bodies may also appear in the brain’s cortex, or outer layer.

Lewy bodies contain a protein called alpha-synuclein that has been linked to Parkinson’s disease and several other disorders. Researchers, who sometimes refer to these disorders collectively as “synucleinopathies,” do not yet know why this protein accumulates inside nerve cells in LBD.

Symptoms of Lewy Body Dementia

The symptoms of LBD overlap with AD in many ways, and may include memory impairment, poor judgment and confusion. However, LBD typically also includes visual hallucinations, parkinsonian symptoms such as a shuffling gait and flexed posture, and day-to-day fluctuations in the severity of symptoms. People with LBD live an average of 7 years after symptoms begin.

There is no cure for LBD, and treatments are aimed at controlling the parkinsonian and psychiatric symptoms of the disorder. People sometimes respond dramatically to treatment with antiparkinsonian drugs and/or cholinesterase inhibitors, such as those used for AD.

Some studies indicate that neuroleptic drugs, such as clozapine and olanzapine, also can reduce the psychiatric symptoms of this disease. But neuroleptic drugs may cause severe adverse reactions, so other therapies should be tried first and people using these drugs should be closely monitored.

Lewy bodies are often found in the brains of people with Parkinson’s disease and AD. These findings suggest that either LBD is related to these other disorders or that the diseases sometimes coexist in the same person.

Frontotemporal Dementia (FTD)

Sometimes called frontal lobe dementia, FTD describes a group of diseases characterized by degeneration of nerve cells—especially those in the frontal and temporal lobes of the brain. Unlike AD, FTD usually does not include the formation of amyloid plaques. In many people with FTD, there is an abnormal form of tau protein in the brain, which accumulates into neurofibrillary tangles. This disrupts normal cell activities and may cause the cells to die.

Experts believe FTD accounts for two to ten percent of all cases of dementia. Symptoms of FTD usually appear between the ages of 40 and 65. In many cases, those affected have a family history of dementia, suggesting that a strong genetic factor is at play in the disease. The duration of FTD varies, with some patients declining rapidly over two to three years and others showing only minimal changes for many years. People with FTD live with the disease for an average of five to ten years after diagnosis.

Symptoms of FTD

Because structures found in the frontal and temporal lobes of the brain control judgment and social behavior, people with FTD often have problems maintaining normal interactions with others and following social conventions. They may steal or exhibit impolite and socially inappropriate behavior, and they may neglect their normal responsibilities.

Other common symptoms include loss of speech and language abilities, compulsive or repetitive behavior, increased appetite, and motor problems such as stiffness and balance problems. Memory loss may occur, although it typically appears later on in the disease.

Types of FTD

There are a few different types of FTD, each with their own characteristics and symptoms:

Pick’s disease: In this type, certain nerve cells become abnormal and swollen before they die. These swollen or ballooned neurons are one hallmark of the disease. The brains of people with Pick’s also have abnormal structures called Pick bodies, composed largely of the protein tau, inside the neurons.

The cause of Pick’s is unknown, but it runs in some families and thus it is probably due at least in part to a faulty gene or genes. The disease usually begins after age 50 and causes changes in personality and behavior that gradually worsen over time.

The symptoms of Pick’s are very similar to those of AD and may include inappropriate social behavior, loss of mental flexibility, language problems, and difficulty with thinking and concentration. There is currently no way to slow the progressive degeneration found in Pick’s. However, medication may be helpful in reducing aggression and other behavioral problems, and in treating depression.

FTD with Parkinsonism: In some cases, familial FTD is linked to a mutation in the tau gene. This disorder, called FTD with parkinsonism linked to chromosome 17 (FTDP-17), is much like other types of FTD, but often includes psychiatric symptoms such as delusions and hallucinations.

Primary Progressive Aphasia (PPA): This type of FTD may begin to appear in people as young as 40. “Aphasia” is a general term used to refer to deficits in language functions, such as speaking, understanding what others are saying, and naming common objects.

In PPA one or more of these functions can become impaired. Symptoms often begin gradually and progress slowly over a period of years. As the disease progresses, memory and attention may also be impaired and patients may show personality and behavior changes. Many, but not all, people with PPA eventually develop symptoms of dementia.

Mixed dementia: This is a condition in which AD and vascular dementia occur at the same time. Recent studies suggest that mixed dementia is more common than previously thought. Brain changes are characterized by the hallmark abnormalities of AD as well as other types—most commonly vascular and LBD. Some experts recommend suspecting this type whenever a person has both evidence of cardiovascular disease and dementia symptoms that worsen slowly.

Rare Forms of Dementia

Some other types of dementia that can affect elderly people include:

HIV-associated Dementia (HAD): This type results from infection with the human immunodeficiency virus (HIV) that causes AIDS. HAD can cause widespread destruction of the brain’s white matter. This leads to a kind of dementia that generally includes impaired memory, apathy, social withdrawal and difficulty concentrating. People with HAD often develop movement problems as well. There is no specific treatment for HAD, but AIDS drugs can delay the onset and may help to reduce symptoms.

Huntington’s Disease (HD): This is a hereditary disorder caused by a faulty gene for a protein called huntingtin. Children of people with the disorder have a 50 percent chance of inheriting it. The disease causes degeneration in many regions of the brain and spinal cord. Symptoms of HD usually begin when patients are in their 30s or 40s, and the average life expectancy after diagnosis is about 15 years.

Cognitive symptoms of HD typically begin with mild personality changes, such as irritability, anxiety, and depression, and progress to severe dementia. Many patients also show psychotic behavior. HD causes chorea—involuntary jerky, arrhythmic movements of the body—as well as muscle weakness, clumsiness, and gait disturbances.

Dementia Pugilistica: Also called chronic traumatic encephalopathy or Boxer’s syndrome, this type is caused by head trauma, such as that experienced by people who have been punched many times in the head during boxing. The most common symptoms of the condition are dementia and parkinsonism, which can appear many years after the actually trauma ends.

Affected individuals may also develop poor coordination and slurred speech. A single traumatic brain injury may also lead to a disorder called post-traumatic dementia (PTD). PTD is much like dementia pugilistica but usually also includes long-term memory problems. Other symptoms vary depending on which part of the brain was damaged by the injury.

Corticobasal Degeneration (CBD): This is a progressive disorder characterized by nerve cell loss and atrophy of multiple areas of the brain. CBD usually progresses gradually over the course of 6 to 8 years. Initial symptoms, which typically begin at or around age 60, may first appear on only one side of the body but eventually will affect both sides. Some of the symptoms, such as poor coordination and rigidity, are similar to those found in Parkinson’s disease.

Other symptoms may include memory loss, visual-spatial problems, apraxia (loss of the ability to make familiar, purposeful movements), hesitant and halting speech, myoclonus (involuntary muscular jerks), and dysphagia (difficulty swallowing). Death is often caused by pneumonia or other secondary problems such as sepsis (severe infection of the blood) or pulmonary embolism (a blood clot in the lungs).

Creutzfeldt-Jakob Disease (CJD): This rare, degenerative, fatal brain disorder affects about one in every million people per year worldwide. Symptoms usually begin after age 60 and most patients die within one year. Many researchers believe CJD results from an abnormal form of a protein called a prion.

Elderly parents with CJD may initially experience problems with muscular coordination, personality changes, including impaired memory, judgment, and thinking, and impaired vision. Other symptoms may include insomnia and depression. As the illness progresses, mental impairment becomes severe.

Patients often develop myoclonus and they may go blind. They eventually lose the ability to move and speak, and lapse into a coma. Pneumonia and other infections often occur in these patients and eventually lead to death.

There is no one test to determine if someone has dementia. Doctors diagnose AD and other types based on a careful medical history, a physical examination, cognitive testing, laboratory tests, and the characteristic changes in thinking, day-to-day function and behavior associated with each type.

Doctors can make a diagnosis with a high level of certainty, but it is harder to determine the exact type because the symptoms and brain changes of different kinds often overlap. In some cases, a doctor may simply diagnose “dementia” and not specify a type.

Alzheimer’s Disease, Lewy-Body Dementia, Vascular Dementia, Frontotemporal Dementia (Pick’s Disease)

There’s a common misconception that the primary indicator of dementia is memory loss. The reality is that different forms of dementia have different signs.

Here are some of the indicators that signal each type of dementia:

Alzheimer’s disease

  • Memory loss: Early-stage Alzheimer’s is almost always hallmarked by some form of memory loss. A person may experience difficulty trying to remember a particular word, or the name of someone they just met. They may also be more prone to losing important objects. Often, a person’s short-term memory is the first thing affected by Alzheimer’s. Memory loss gradually gets worse until long-term recollections are impacted as well. A person in the later stages of Alzheimer’s won’t be able to remember their own name, how to dress themselves, or even how to smile.
  • Trouble performing familiar tasks: A super-organized individual may become scattered as a result of Alzheimer’s. Not remembering the route to the grocery store, or forgetting something they just read are two additional early-to-mid-stage Alzheimer’s indicators.
  • Bad judgment: Unsound financial decisions, inappropriate public outbursts and an inability to understand and abide by social norms of cleanliness and grooming are all signs of increasingly poor judgment that may signify Alzheimer’s.
  • Social withdrawal: People suffering from memory loss may be reluctant to engage in social activities. They are easily overwhelmed by large groups of people, even close friends and family.
  • Sundowning: When the sun goes down, an Alzheimer’s sufferer may become fearful, agitated and sad. They may pace, hallucinate, shadow their caregiver and wander. This collection of emotions and subsequent behaviors is referred to as “Sundowner’s syndrome” or “sundowning.” Sundowning can be a sign of virtually any type of dementia, but is most often seen in individuals with Alzheimer’s disease.

Discover more information about the signs symptoms and treatment of Alzheimer’s disease.

Lewy-Body dementia

  • Hallucinations and delusions: Seeing, hearing, and even tasting things that aren’t real is widely considered one of the first signs of Lewy Body dementia. Also occurring early on in the disease are persistent fictitious beliefs about a particular person or circumstance. For caregivers this particular dementia behavior can seem like manipulation.
  • Sleep troubles: Another early symptom of Lewy Body dementia is known as REM Sleep Behavior Disorder (RBD). A person with RBD will talk and move while still asleep. Once awake, they may struggle to distinguish between their dreams and reality. A person with RBD won’t always develop Lewy Body dementia, but research suggests that about 66 percent of people with RBD will eventually develop a degenerative brain disorder, according to the Lewy Body Dementia Association.
  • Varying degrees of alertness: A person with Lewy Body dementia may experience periods of lucidity, interspersed with episodes of profound disorientation that may last anywhere from minutes to days. These cycles of confusion and clarity are not tied to any particular time of day, unlike the sundowning behaviors seen in people with Alzheimer’s disease.
  • Movement issues: A person with Lewy Body dementia may resemble a person suffering from Parkinson’s because of the effect the disease has on their ability to control their body and perceive their environment. Stiff movements, a hunched over posture and shuffling can all be physical manifestations of cognitive degeneration. These mobility issues also up a person’s risk for falling.
  • Medication sensitivity: About half of Lewy Body dementia sufferers develop an extreme sensitivity to antipsychotic medications that can result in worsening of existing dementia symptoms, and Neuroleptic Malignant Syndrome, which can lead to death.
  • Memory and cognitive issues: Memory loss is typically one of the last symptoms to show up in people with Lewy Body dementia.

Discover more information about the signs, symptoms and treatment of Lewy Body dementia.

Vascular Dementia

  • Vascular dementia usually follows deprivation of oxygen and nutrients to the brain. The symptoms of vascular dementia are different depending on which part of the person’s brain was impacted by reduced blood flow. Memory loss, confusion, depression, problems with planning and organization, mobility issues and urinary incontinence are all possible signs that a person is suffering from vascular dementia.

Discover more information about the signs, symptoms and treatment of Vascular dementia.

Frontotemporal Dementia (Pick’s disease)

  • There are several types of frontotemporal dementia (FTD), each with their own set of initial symptoms that gradually begin to intersect as the disease gets worse.
  • Loss of inhibition: Saying and doing inappropriate things is a common sign that a person has developed some form of FTD.
  • Problems with language: A person who consistently has trouble remembering words, or using the right words to describe what they’re talking about may suffer from FTD.
  • Movement issues: Similar to Lewy Body dementia, FTD can also cause rigid movements and a lack of coordination.

Discover more information about the signs, symptoms and treatment of Frontal Lobe (Frontotemporal) dementia.

World Dementia Council Global Care Statement

 

Statement on Importance of Care and Support

World Dementia Council

All persons affected by dementia – those living with
the diseases that cause it, their care partners, and their
family and friends – have a right to receive the highest
quality care and support possible to meet their needs.

They have the human right to be treated with dignity
and respect. And they are entitled to full and effective
participation and inclusion in society.

These rights transcend national boundaries and cultures.

Person-centered, high-quality care and support
should respond to the unique, individual needs of
each person and include rehabilitation and disability
support.

It should be delivered by well-trained
individuals, whether professionals or family and friend
care partners.

Such care and support can result in improved health
outcomes and quality of life, enhanced comfort, and
decreased stress for persons living with dementia.

For their care partners, it can enhance their health
and strengthen the informal support system. And, by
lessening the burden on health and long-term care
systems, it can help to lower costs.

Principles of High-Quality Care and Support

To ensure the right to high-quality care and support for people living with dementia and their care partners,

the following principles should guide the provision of care and support in all countries:

1. Individuals receive a timely and accurate diagnosis
– and are told of that diagnosis and its realistic
consequences. This is the gateway to making
informed personal life decisions and decisions about
medical treatment.

2. People living with dementia are entitled to respect
and dignity with full recognition that dementia in
no way diminishes the personhood of the individual
who has it.

3. Communities are inclusive of people living with
dementia, thus ensuring the opportunity for
participation and engagement by those living with
dementia, and empowering and enabling them to
remain in the community as long as possible.

4. Care is person- and relationship-centered.
Person-centered care is a philosophy of care
based on knowing the person, developing and
maintaining authentic relationships, providing
a supportive, culturally-sensitive environment
that includes opportunities for meaningful
engagement, and recognizing the person’s reality
and individual needs.

5. The provision of person-centered care is based on
continuous assessment and individualized care
planning designed to maximize independence,
develop effective strategies for communication,
minimize behavioral and psychological symptoms,
and identify available support for people living with
dementia and their care partners.

6. People living with dementia and their care partners
are involved as active participants in care planning
and decision making and have access to information
and support throughout the continuum of their
disease from diagnosis to end of life.

7. Medical and care professionals have adequate
knowledge of all aspects of dementia and work
across disciplines to ensure a holistic approach to
disease management. This will ensure that people
living with dementia are provided appropriate
medical care, psychosocial care, and disability
support – for both their dementia and their
co-morbid conditions – throughout the course of
the disease.

8. Care coordination and collaboration occurs
between all care providers, including medical and
allied health and social care professionals, health
systems, family care partners, paid caregivers,
community services, and volunteers. Governments,
non-governmental organizations (NGOs), and
patient advocacy groups have an important role
in building collaboration among care providers
and in monitoring and evaluating the care and
support provided.