Dementia Patient’s Realities & Delusions: do i just play along with them?

It was not unlike any other day, but this particular afternoon Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long to arrive. I did what I usually did, and waited a few days to see if this episode of delusional thinking would pass. It did not.

So, I created a facsimile of a medical degree on my computer with my dad’s name on it. I scribbled some “signatures” on the bottom, put it in a mailing envelope and brought it to him in the nursing home the following day. He was delighted.

I added it to the other awards and degrees hanging on the wall; an entomology “degree,” his legitimate college degree, some other earned awards, an “award” for helping direct Lawrence Welk’s band. The wall was cluttered with the real and the fake, but I knew I would need to find room for more. Dad’s brain would tell him he had earned something else and eventually I would need to produce it.

Dad had, indeed, gone to medical school at the University of Minnesota, but that was before World War II. He took some time off to be an archaeologist and then the war broke out. During maneuvers in the Mohave Desert, Dad passed out from the heat, hitting his head against the baked desert floor and sustaining a closed head injury. He was in a coma for months and had to learn to walk and talk again. His rehabilitation was successful, and he stayed in the army until the war ended, but was kept Stateside and trained as a sanitarian.

Dad became director of Sanitation for the city of Fargo, meanwhile raising a family and, like so many returning soldiers, he went back to school. He attended school at night and worked during the day. I remember going to his college graduation when I was 14 years old. Dad continued taking any graduate classes that would help his career or simply because they interested him, and he became very successful in the world of public health.

As Dad aged, however, fluid started building up behind the scar tissue in his brain. He underwent surgery to drain the fluid, but it backfired. He came out of the procedure with severe dementia and bonded with a voice in his head we came to call Herman.

That is when reality changed for all of us.

Dad moved to a wonderful nursing home a block from my house. For the first few years, my mom was still able to live at home, so I’d take her each day to see him (eventually, my mother entered the same nursing home). Everyone in the family wanted to help Dad, but I was the only one who could really communicate with him and see to his unusual requests.

I was his office manager. I brought him his brief case. I made a graphic letter head for him and made him business cards. I took dictation. I mailed letters, “received” letters, and, of course, made degrees and awards.

Although he was not able to remember much, Dad could recall attending medical school at the U of M. Why wouldn’t he have a degree, then? He watched Lawrence Welk on public television, and I even bought him a baton because he wanted to direct the band. Why would he not have an award for that?

One day, a couple of years into this saga, a psychiatrist caught wind of what I was doing. He chewed me out royally. I was supposed to ground Dad and bring him back to reality. My purpose was to redirect him. In this doctor’s eyes, I had no business playing Dad’s game.

Hogwash, I thought. I knew my father was no longer capable of coming into my “reality” and I refused to torture him by trying to force the impossible. If I argued that he was delusional, he would feel degraded and disrespected. This reasoning made no sense to me. I still had my brain, so why couldn’t I put his anxiety to rest by traveling into his world and joining in his reality?

The funny thing is, a few years later, a different psychiatrist came in to Dad’s room and was admiring his wall of degrees, awards and achievements. “I didn’t know he was a doctor,” he remarked to one of the nurses. “He’s not,” the nurse said with a grin. He burst out laughing. Later he asked me where I learned my coping technique.

“I’m his daughter,” I said. That’s all I needed.

I eventually learned that there is an actual theory about this approach to reasoning with patients who have Alzheimer’s and other dementias called “validation therapy.” It makes me smile. I didn’t need a theory to know what Dad needed. I just needed love.

Validation is exactly what Dad required, because his delusions were real to him. Yes, there were times when I would try to explain “true” reality, but I chose my battles wisely. I tried to keep him from seeing television news because he would insist that the war going on (there’s always a war going on somewhere) was transpiring in our town, right outside his window. I would try to get him to walk to the window with me, but no, he knew the war was outside and I shouldn’t belittle him by saying it wasn’t.

However, I certainly did not encourage him and say, “Sure, Dad, there’s a war outside and they will blow us up anytime.” I would merely play along and try to convince him that we were in a “safe zone,” so to speak. If it did not take, I would calmly say, “I’m sorry you can’t believe me, but we are okay. We’ll talk about it another time.” Usually, these things happened when he was having a particularly bad day, and we would just have to ride it out.

If a particular delusion did not cause him to feel threatened or upset, I resorted to just agreeing with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant for one of their exhibits? It kept him busy and helped him feel useful. What did matter that he needed to study “Grey’s Anatomy?” I found him a copy in the used book store and brought it to him. He also requested a copy of “Robert’s Rules of Order.” These things were easy enough to find and readily available for purchase.

My point is this. Dad’s reality was as real to him as mine is to me. Why should I, a person who supposedly can use their brain, make his life miserable by continually telling him he is wrong? Going with the flow was not hurting anyone else, and it was making Dad’s life a little more bearable.

It is certainly a personal choice to make if you are the family caregiver for a loved one who is suffering from dementia. It seems to be a simple solution to allow them to persist in their reality, as long as it is safe and does not pose any harm to themselves or others. Perhaps it is no different than allowing a child to dream of what they want to be when they grow up or pretend that they are firefighting hero or a prima ballerina.

There is no cure for dementia and it is a progressive, debilitating disease. There certainly seems to be no harm in validating their reality now and then throughout their final years. The other alternative often includes conflict, tension and hurt feelings. Why would I not do what little I could to help my father feel some sort of purpose, peace and accomplishment? I am his daughter. He would have done as much for me.

Dementia: How to Cope with Untrue and Unwarranted Statements

When a person develops any form of dementia, it is difficult for family and friends to witness their diminishing capacity and the unbearable frustration it brings. However, one of the worst things we must cope with is the fact that this person’s brain is broken and may cause them to tell terrible “lies” about us. As much as this hurts, it is important to remember that no matter how far-fetched their stories and accusations may be, in their mind, these things are true.

Short-Term Memory Loss and Paranoia Are to Blame

Misplacing and “hiding” personal items is a hallmark of dementia, which can be terribly disorienting and frustrating for patients and caregivers alike. When you add in a bit of paranoia and delusional thinking, a “lost” purse or medication bottle can suddenly become the reason for accusing a devoted caregiver of theft. Emotions like anger, anxiety and confusion leave elders feeling vulnerable and taken advantage of, which causes them to become defensive and accusatory as they try to make sense of what they cannot understand.

Unfortunately, there are many instances where people have taken advantage of someone with diminished mental capacity. This is a terrible fact of life. However, there are far more instances where helpful and well-meaning gestures are misconstrued as acts of trickery or deceit. For example, a dementia patient may ask a caregiver or family member to launder a piece of clothing, repair their eyeglasses or purchase groceries using cash they provide. When they find their favorite blouse, glasses or money is gone, they fail to recall their own request. Accusations can fly and then the caregiver is left scrambling to explain themselves to someone who is impossible to reason with.

If It Wasn’t so Sad, It Might Be Funny

The Caregiver Forum is populated by stressed caregivers who are experiencing this problem. Even when they are performing simple household duties, like washing clothes or setting up a weekly medication organizer, they can be faced with accusations of theft.

I remember the last year of my mother’s life when she frequently told the housekeeper at her nursing home that I was stealing her clothes so I could wear them to work. It was funny in its own way, but Mom’s suspicions and lack of trust were also somewhat painful. I was simply doing the same thing I’d done for years: swapping her out-of-season clothes in her tiny closet with season appropriate items that I stored for her. We had done this little switch-out for years, and it had always been fun rediscovering forgotten items and gifting Mom a few new ones. However, that last year, it was just sad.

While it hurt my feelings that my mother thought I was capable of stealing from her, I tried really hard not to take it personally. We dementia caregivers must remember that the outrageous things our loved ones say are the disease talking, not their old selves. Try your best to keep your sense of humor even during the most trying times. Dad may be livid and screaming about you stealing his dentures, but if you think about it, the concept of stealing someone else’s teeth is mildly comical. There is some truth to laughter being the best medicine. Many caregivers, including myself, often find that if they didn’t laugh, they’d end up crying instead.

Accusations of Abuse Are No Laughing Matter

I was fortunate that none of the elders I cared for ever leveled serious accusations against me, even in their severely demented states. Some caregivers aren’t so lucky, and some fabrications can have very serious consequences. Allegations of elder abuse and neglect are the most emotionally and potentially legally and financially devastating for family members to endure.

If word gets out, Adult Protective Services (APS) and even the police may investigate the matter. To a caregiver whose loved one is fabricating stories about being mistreated, an investigation may be humiliating and seem like a waste of time and resources, but elder abuse is a reality for many seniors. These entities must look into all reports to protect those dementia patients who are actually telling the truth.

Most false accusations stem from a dementia patient’s inability to connect with reality. For example, assistance bathing or dressing may be misconstrued as inappropriate touching. Trying to get an elder in the car to go on an outing or to a doctor’s appointment may translate to kidnapping in their broken mind. The way they perceive the world around them has changed and their reaction is often one of fear and self-defense. Remember that they are not trying to cause trouble on purpose.

How to Cope with Untrue and Unwarranted Statements

  • Seek support. It doesn’t matter if it’s from the Alzheimer’s Association 24/7 Hotline, a spiritual leader, another family member, a social worker at your loved one’s nursing home, fellow caregivers in a support group or a friend. You need to discuss your concerns with someone to vent your frustrations and get sound advice on how to move forward.
  • Keep meticulous records if you have anything to do with managing your loved one’s finances. Have them organized and ready to present to the person who is accusing you and whoever is investigating these claims.
  • If your loved one prepared legally for aging and potential incompetence, have copies of all pertinent forms on hand. This includes HIPAA forms and power of attorney documents that give you access to their medical and/or financial information.
  • Consult with an elder law attorney if necessary. This is extreme, but sometimes caregivers do wind up needing legal counsel if the accusations are serious enough. Something as simple as failing to account for spent or comingled funds can lead to a full investigation.
  • If an investigation does transpire, cooperate fully. You may feel some resentment toward APS staff or police officers, but they’re only doing their jobs. If you’ve done nothing wrong, then there is nothing to hide.
  • If you have siblings or others who believe the accuser and not you, you may want to consider working with a family mediator to resolve the situation.

Keep in mind that these accusations are often transient, and patients eventually forget the incidents they initially reacted to. It is hard for a caregiver to forget that they have been accused of stealing or harming someone they love, but this is a time when we must remember that this person is sick. A great amount of tolerance and patience is needed in these situations. These and other behaviors are brought on by the disease. However, we must protect ourselves and document our efforts to protect and care for those we love. If an accusation should turn into more than a fleeting fabrication, seek proper help and guidance to ensure you can remain blameless and continue to provide quality care for your loved one.

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.

Lewy Body Dementia Stages: stormy or calm waters? what can i expect?

Most caregivers are concerned/worried that something is not right.

Symptoms from later stages can also appear this early on the continuum.

At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Hallucinations
  • REM sleep disorder
  • Restless Leg Syndrome
  • Sense of smell diminished
  • Vision affected (clarity, comprehension and/or peripheral)
  • Hearing affected (clarity and/or comprehension)
  • Speech difficulty (word-finding, pronunciation, etc)
  • Physical coordination diminished
  • Parkinson’s disease diagnosis
  • Shuffling gait
  • Slowness of movement
  • Cog-wheeling (smooth motions now jerky)
  • Posture altered (stooping or leaning)
  • Chronic runny nose
  • Myoclonic jerking
  • Comprehension issues
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Loss of initiative, interests
  • Alertness varies
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Fluctuations in mood
  • Able to engage independently in leisure activities
  • Handwriting is affected (often smaller or less legible)
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide (mask) symptoms
  • Socialization still possible
  • Driving skills affected
  • May accuse spouse of infidelity
Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention.

Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient.

Protect assets: family, friends, caregivers may be able to take financial advantage of LO.

Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

  • Balance and stability diminished
  • Ambulates/transfers without assistance
  • Increased risk for falls/requires walker
  • Occasional episodes of incontinence (1 or 2 a month)
  • Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
  • Leaning to one side when standing, walking and seated
  • Parkinson’s symptoms controlled with medication
  • Able to perform most ADLs without assistance

Increased difficulty with:

  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
  • May be able to administer own medications
  • Able to follow core content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions more firmly held
  • Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
  • Depressed mood
  • Paranoia
  • Agitation
Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home.

Caregiver needs regular planned respite to maintain their own health.

Caregiver health issues often arise and require health care.

Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks.

The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Ambulation/transfer s are impaired, needs assistance with some portion of movement
  • At risk for falls
  • Increase of Parkinson’s symptoms
  • Increase of autonomic dysfunctions
  • Needs assistance/supervision with most ADLs. May require DME
  • Frequent episodes of incontinence (two+ per week)
  • Speech becomes impaired, projection (volume) may decrease
  • Able to follow content of most simple/brief conversations or simple commands
  • Able to be left unsupervised less than one hour
  • Unable to work
  • Unable to drive
  • Unable to administer medication without supervision
  • Unable to organize or participate in leisure activities
  • Increased confusion
  • Possible delusions & Capgrass Syndrome
  • Inability to tell time or comprehend time passing
  • Increased difficulty with expressive language
  • Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
  • Severity of symptoms may increase or decrease
Phase 4 Possibilities

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.

The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week.

Increased patient needs may require potential for long-term care placement.

Patient may be declared mentally incapacitated.

Caregiver may need to explore Hospice services.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Continuous assistance with ambulation/transfers
  • High risk for falls
  • Needs assistance with all ADLs
  • Incontinent of bladder and bowel
  • Unable to follow content of most simple/brief conversations or commands
  • Speech limited to simple sentences or one-to-three-word responses
  • Requires 24-hour supervision
  • May need electronic lift recliner chair
  • Parkinson’s symptoms need regular medical monitoring
  • Autonomic dysfunctions need regular medical monitoring
  • Choking, difficulty swallowing, aspiration, excessive drooling
  • Increased daytime sleeping
  • Hallucinations prevalent but less troublesome
Phase 5 Possibilities

Caregiver is actively grieving.

Potential for increased caregiver stress.

Hospice assistance is strongly suggested.

Caregiver will need hands-on support from others to maintain LO at home.

Caregiver may need to honor decisions made earlier on the Living Will.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Difficulty swallowing
  • Dependent for all ADLs
  • High risk for URI, pneumonia, and UTI
  • High risk for skin breakdown
  • Patient requires hospital bed, Hoyer lift or Mo-lift, suction machine, etc.)
  • Muscle contractions – hands, legs, arms
  • Lean to either side very pronounced (sometimes called Lewy Lean)
  • May carry a fever
  • May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
  • May require decision whether or not to use feeding tube
  • Unable to follow simple commands or assist with repositioning
  • Decreased or no language skills
  • Constant delusions
  • Fluctuations less frequent and more severe

Lewy Body Dementia: time to prepare for late stage and to be equipped for it

Please be aware that some of our posts may be upsetting and even shocking to those seeking information on Lewy Body Dementia.

Families and carers alike seek information on the condition, but some loved ones are also searching for the more unpleasant facts, no matter how stressful these can be to read sometimes, they just need to know what to expect.

Please keep in mind that not everybody with Lewy Body Dementia experiences the same symptoms, and in most cases the symptoms that they do experience, or do not experience, differ also.

Never accept anything of what you read on the internet or in this blog as absolute fact, and (always) seek medical advice from a qualified practitioner.   

Dementia with Lewy bodies gets its name from microscopic deposits that are found in the brains of people with the condition.

These deposits cause damage to, and the eventual death of, nerve cells in the brain.

Dementia with Lewy bodies develops slowly and tends to progress gradually, like Alzheimer’s disease.

Parkinson’s disease is also caused by Lewy bodies and some symptoms of this disease are shared with dementia with Lewy bodies.

Early symptoms of this type of dementia may also overlap with those of Alzheimer’s disease, but there are several important differences.

Unlike Alzheimer’s disease, in the early stages of dementia with Lewy bodies the person’s attention and alertness often vary widely from day to day, or even during the course of a single day.

This can often be puzzling for those around them.

Most people with dementia with Lewy bodies also have recurrent visual hallucinations.

These are much more common than in early Alzheimer’s disease and are very detailed, often of animals or people.

Misperceptions and auditory hallucinations (hearing sounds that are not real) are also very common.

These symptoms may explain why people with this dementia often falsely believe that they are being persecuted.

Half or more of those affected by dementia with Lewy bodies have movement problems when the dementia is diagnosed, and this proportion increases as dementia progresses.

These symptoms are like those of Parkinson’s disease, such as slowness of movement, stiffness and sometimes tremor.

The person may also have difficulty judging distances and be prone to problems with balance, falls and fainting.

As dementia with Lewy bodies progresses, some of the symptoms become more like those of middle or late stage Alzheimer’s disease, including greater problems with day-to-day memory and behaviours that challenge, such as agitation, restlessness or shouting out.

Worsening of Parkinson-type symptoms means that walking gets slower and less steady.

The risk of falls remains high. The combination of symptoms in a person with dementia with Lewy bodies can be particularly stressful for family and carers.

After the symptoms of dementia with Lewy bodies begin, people live on average for six to twelve years.

However, each person will experience dementia with Lewy bodies differently.

It’s a sad fact, but Lewy body dementia is a progressive disease.

This means that those who have the condition will eventually reach its end stages.

For those who care for someone with Lewy body dementia, this is an upsetting prospect.

But there are things you can do to deal with this.

Here you’ll find information on what symptoms are typical of late stage Lewy body dementia, and advice on how to deal with these symptoms…

All of the different types of dementia begin to look fairly similar once they reach their final stages.

However, there are some symptoms that distinguish late-stage Lewy body dementia from other dementia types.

These are explained below…

Mental symptoms

Although in the early stages of Lewy body dementia, memory difficulties are not a common symptom, by the late stages memory does become affected too.

However, unlike other forms of dementia, people with Lewy body dementia experience fluctuations in their cognition and memory.

They may have periods of lucidity, even right at the end.

Hallucinations and delusions are common in the early and middle stages of the condition, but these become much more frequent by the late stages.

Attention difficulties are also very typical of late-stage Lewy body dementia.

Anxiety, depression and aggressive behaviour can become apparent in someone with late-stage Lewy body dementia, as well as emotional lability.

Emotional lability means having emotions that change very quickly.

One moment they may seem fine, the next they may be in tears, then as quickly as the tears came they may be gone again.

A person with advanced Lewy body dementia will have extreme rigidity.

This means that their muscles will be very tense and stiff.

This will make it very difficult for them to move.

They will require help for most activities because of this, including bathing and dressing.

Sensitivity to touch is also a common symptom.

They may find even very gentle touch extremely uncomfortable.

Lewy body dementia affects a person’s ability to move their facial muscles, making speech very difficult.

Towards the later stages, they will have little to no verbal communication.

The speech that they may have will be extremely quiet and highly unintelligible.

By this point, the person will also have a very impaired swallow, making eating and drinking extremely difficult.

How to deal with the later stages

Of course, when a loved one reaches the final stages of Lewy body dementia, this is a very upsetting time.

However, there are some things you can do to make this period a little easier to cope with…

Educate yourself and others around you

Although Lewy body dementia is the third most common form of dementia behind Alzheimer’s disease and vascular dementia, it is still widely unknown (although it’s actually thought to be the second most common form, due to the frequency of misdiagnosis).

Many people don’t know what the symptoms are, and even more aren’t aware that it even exists.

Because of this, it’s important that you educate yourself and others who come into contact with your loved one, about the symptoms of Lewy body dementia, so that everyone knows what to expect.

For example, if you weren’t aware that people with Lewy body dementia can have periods of lucidity when their cognition improves, you may have false hope that they might get better, only to have this hope dashed when their cognition worsens again.

Knowing that your loved one may have periods of lucidity when they are able to recognise you can allow you to use this time to talk to your loved one and say goodbye.

This may help to give you some closure.

Consult appropriate professionals

A common cause of death in someone with Lewy body dementia is aspiration pneumonia.

This means a severe chest infection which is caused by food or drink entering the lungs, as a result of a weak swallow.

Make sure you consult a speech and language therapist who will be able to advise on the safest consistency of food for your loved one to eat.

This will help to reduce the risk of aspiration pneumonia.

A dietician will also be able advise on the types of food your loved one should be eating, in order to keep their weight up and avoid malnutrition.

This will help to fight off infections which are the most typical cause of death in a person with Lewy body dementia.

A speech and language therapist may also be able to provide strategies and tools to help make communication easier.

This will help to avoid confusion and frustration between you and your loved one.

Please Read Mortality – Approaching Death

Find support

No one should have to struggle alone.

Caring for someone with a progressive condition like Lewy body dementia is both mentally and physically draining.

Make sure you’re getting all the support you’re entitled to, both financial and emotional.

Depending on your loved one’s circumstances, you may be entitled to financial support from your local authority to pay for carers.

At some point, you may be considering a care home for your loved one.

Read these blog posts on when is it time to consider a care home for your loved one with dementia and what to do when you can no longer care for a loved one with dementia, for more information.

 

Dementia with Lewy Bodies: (DLB) What is it? What are Lewy Bodies?

For Illustration Only.  Dementia with Lewy Bodies. What is it ? What are they ?

Dementia with Lewy bodies (DLB)

Information provided by the Alzheimers Society

Dementia with Lewy bodies (DLB) is a type of dementia that shares symptoms with both Alzheimer’s disease and Parkinson’s disease.

It may account for 10-15 per cent of all cases of dementia. DLB can be diagnosed wrongly and is often mistaken for Alzheimer’s disease.

This factsheet describes the symptoms of DLB and how it is diagnosed, as well as the treatment and support available.

DLB is sometimes known by other names. These include Lewy body dementia, Lewy body variant of Alzheimer’s disease, diffuse Lewy body disease and cortical Lewy body disease. All these terms refer to the same condition.

Lewy bodies

Lewy bodies are named after the German doctor who first identified them.

They are tiny deposits of a protein (alpha-synuclein) that appear in nerve cells in the brain.

Researchers don’t have a full understanding of why Lewy bodies appear, or exactly how they contribute to dementia.

However, this is linked to two factors:

  • low levels of important chemicals (mainly acetylcholine and dopamine) that carry messages between nerve cells
  • a loss of connections between nerve cells, which then die.

Lewy bodies are the cause of DLB and Parkinson’s disease. They are two of several diseases caused by Lewy bodies that affect the brain and nervous system and get worse over time. These are sometimes called Lewy body disorders.

The way someone is affected by DLB will depend partly on where the Lewy bodies are in the brain:

  • Lewy bodies at the base of the brain are closely linked to problems with movement (motor symptoms). These are the main feature of Parkinson’s disease.
  • Lewy bodies in the outer layers of the brain are linked to problems with mental abilities (cognitive symptoms), which is a feature of DLB.

People with a Lewy body disorder can have problems with movement and changes in mental abilities at the same time. About one-third of people diagnosed with Parkinson’s disease eventually develop dementia (Parkinson’s disease dementia).

Where Parkinson’s disease dementia does develop, it is generally a long time – sometimes 10 years or so – after Parkinson’s disease has first been diagnosed.

Similarly, at least two-thirds of people with DLB develop movement problems at some point. The symptoms of DLB and Parkinson’s disease dementia become more similar as the conditions progress. Together they are referred to as Lewy body dementias.

Who is affected?

DLB accounts for around 4 per cent of all recorded dementia, but there is good evidence that the condition is not always diagnosed correctly.

Based on studies of brain tissue after death, scientists think DLB may account for as much as 10-15 per cent of all dementia.

DLB appears to affect men and women equally. As with Alzheimer’s disease and vascular dementia, DLB becomes more common over the age of 65. However, it can also affect people under 65.

Other than age, there are few risk factors (such as medical conditions or lifestyle choices) that are known to increase a person’s chances of developing DLB.

Most people who develop DLB have no clear family history of the condition. A few families seem to have genetic mutations that are linked to inherited Lewy body disease, but these are very rare.

For more on this see factsheet 405, Genetics of dementia.

Symptoms

As with most types of dementia, the first symptoms of DLB may affect someone only slightly, but gradually they get worse and cause problems with daily living.

Everyone is different, but a person with DLB will usually have some of the symptoms of Alzheimer’s disease and some of the symptoms of Parkinson’s disease.

They will also have some symptoms which are unique to DLB. These are covered in the sections below.

Problems with mental abilities

Problems with attention and alertness are very common in DLB. An important feature of the condition is that these problems may switch between being bad and then better – or the other way round – over the course of the day, by the hour or even a few minutes. Someone with DLB may stare into space for a long time or have periods when their speech is disorganised.

People may also have difficulties judging distances and seeing objects in three dimensions. It is common to struggle with planning, organising and decision-making. Some people also experience depression. Day-to-day memory is often affected in people with DLB, but usually less in the early stages than in early Alzheimer’s disease.

Hallucinations and delusions

Visual hallucinations (seeing things that are not there) occur frequently in people with DLB, often in the early stages of the condition. They can happen daily. Visual hallucinations are often of people or animals, and are detailed and convincing to the person with dementia.

They can last several minutes and may be distressing. (Someone may also have visual misperceptions, such as mistaking a shadow or a coat on a hanger for a person.) Auditory hallucinations – hearing sounds that are not real, such as knocking or footsteps – can happen but are less common.

Hallucinations and visual misperceptions partly explain why most people with DLB have delusions (persistently thinking things that are not true) at some stage.

Some common delusions held by people with DLB are believing that someone is out to get them, that there are strangers living in the house, or that a spouse is having an affair or has been replaced by an identical imposter. The person’s relatives and carers may find these delusions very distressing.

Visual hallucinations are also a common reason for a person with DLB to stop driving, because it is no longer safe for them to be on the road. For more on this sensitive issue see factsheet 439, Driving and dementia.

Movement problems

Up to two-thirds of people with DLB have movement difficulties when the condition is diagnosed, and this number increases as DLB progresses. These symptoms are similar to those of Parkinson’s disease, and include slow and stiff (rigid) movement with a blank facial expression.

The person’s posture may be stooped and their walk may be shuffling. They may also have difficulty with their balance, and their limbs may sometimes tremble.

Movement problems are one reason why a person with DLB is particularly prone to falls.

Sleep disturbance

Sleep disturbance is another common symptom of DLB and may start years before the diagnosis. Someone with DLB may fall asleep very easily during the day, but have restless, disturbed nights.

In the most common night-time sleep problem, the person has violent movements (eg yelling, hitting out) as they try to act out nightmares. This is called rapid eye movement sleep behaviour disorder and is found in different Lewy body disorders such as DLB and Parkinson’s disease. For bed partners it can be very distressing or even physically harmful.

Other symptoms

Some people with DLB lose their sense of smell, become constipated or have urinary incontinence (passing urine when they don’t intend to). They may also faint or have unexplained episodes when they lose consciousness for a few minutes.

Later stages

DLB is a progressive condition. Over time, symptoms increase and get worse. This is generally over a period of several years.

As the disease progresses, problems with day-to-day memory and other mental abilities become more similar to those of middle- or later-stage Alzheimer’s disease. People can also develop behaviours that challenge (eg agitation, restlessness, shouting out).

Worsening movement problems mean that walking gets slower and less steady. As a result, falls become more common. In the later stages of DLB, many people have problems with speech and swallowing, leading to chest infections or risk of choking.

Eventually, someone with DLB is likely to need a large amount of nursing care. How quickly the condition progresses and the life expectancy of a person with DLB vary a lot. On average someone might live for about six to 12 years after the first symptoms, similar to a person with Alzheimer’s disease.

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.