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.

 

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.

100 Different Types Of Dementia Massive Information Help Support Sheet UK

All types of dementia are progressive, which means that the functioning of the brain will change over time.

However, each type of dementia affects everyone differently and with the right support, it is absolutely possible to live well with dementia.

In this very large post, you’ll find masses of information about the most common types of dementia, the symptoms and the causes for each type.

Cortical and subcortical dementia

Medical professionals sometimes categorise dementia into cortical and subcortical dementia.

Cortical dementia is typically associated with the brain’s grey matter, which is the characteristic outer structures of the brain.

These outer structures have an important role in processing information and in functions such as language and memory.

Types of cortical dementia include Alzheimer’s, frontotemporal dementia, Binswanger’s disease and Creutzfeldt-Jakob disease.

Subcortical dementia initially affects structures below the cortex in the innermost parts of the brain known as white matter.

These inner structures responsible for controlling the speed of thought processes and emotions.

Types of subcortical dementia include Huntington’s disease, Parkinson’s dementia, and AIDS dementia complex.

The progression of dementia is not necessarily affected by category or type, but a variety of factors including lifestyle, health and genetics.

The most common types of dementia

To date, research has discovered over 100 types of dementia.

The most common types of diagnosis in the UK are:

Alzheimer’s

Alzheimer’s is the most commonly diagnosed type of dementia in the UK. 60-80% of those living with dementia have Alzheimer’s and this is perhaps why there’s widespread misuse of the two terms, which are often incorrectly used interchangeably.

Alzheimer’s is a type of dementia.

With Alzheimer’s disease, abnormal proteins called plaques and tangles simultaneously damage the internal and external structures of brain cells.

In time, the damage caused by abnormal proteins disrupts the chemical connections between brain cells, meaning they are unable to communicate information around the brain and body and eventually causing brain cells to die.

Vascular dementia

The narrowing or blockage of blood vessels restricts the blood flow and oxygen supply to the brain.

With a limited oxygen supply, the cells in the brain are not able to respire, causing them to become damaged or die.

The symptoms of vascular dementia can occur suddenly, following one large stroke or they can develop over time, after a series of smaller strokes.

Vascular dementia can also be caused by disease affecting the small blood vessels deep in the brain, known as subcortical vascular dementia.

Mixed dementia

With mixed dementia, more than one type of dementia occurs simultaneously in the brain.

The most common types of dementia to occur simultaneously are Alzheimer’s disease (caused by abnormal proteins called plaques and tangles which destroy nerve cells in the brain) and the blood vessel changes associated with vascular dementia.

Several types of dementia can often coexist in the brain, such as Alzheimer’s, vascular dementia, and dementia with Lewy bodies.

Dementia with Lewy bodies (DLB)

Dementia with Lewy bodies is caused by abnormal protein structures called Lewy bodies (alpha-synuclein) that appear in nerve cells in the brain.

Researchers don’t yet have a full understanding of why Lewy bodies appear, but DLB is linked to low levels of important chemicals (mainly acetylcholine and dopamine) that carry messages between nerve cells, causing a loss of connections between nerve cells.

Lewy bodies disrupt the cells’ ability to transmit information around the brain and body, causing them to die.

Frontotemporal dementia (FTD)

The name ‘frontotemporal’ comes from the areas of the brain which are affected.

With frontotemporal dementia, the build-up of abnormal proteins inside the nerve cells in the front and side areas of the brain interrupt the communication between cells, reducing the information sent around the brain and body, eventually causing the cells to die.

The symptoms of frontotemporal dementia vary depending on what area of the brain is affected:

Two-thirds of people with FTD are diagnosed with behavioural variant. Unlike Alzheimer’s, the early stages of behavioural FTD doesn’t affect day-to-day memory or perception.

During the early stages of behavioural FTD, changes personality and behaviour become noticeable.

  • There are two further types of frontotemporal dementia, both of which affect the language functions of the brain. These difficulties with language become apparent slowly, often over a couple of years:
  • Aphasia – language loss with common symptoms including difficulties in speech production such as stuttering or mispronunciation, grammatical errors and impaired understanding.
  • Semantic dementia – Although speech may be fluent, the vocabulary begins to decline and symptoms include confusion regarding the meaning of familiar words, difficulty in finding the right word or recognising familiar objects.
  • Motor disorders – About 10–20 percent of people with FTD also develop a motor disorder, which causes difficulties with movement. These motor disorders include motor neurone disease, progressive supranuclear palsy and corticobasal degeneration. These three conditions share similar symptoms such as twitching, stiffness, slow movements and loss of balance or coordination.

As the FTD progresses, more of the brain becomes damaged and the differences between the types of FTD become less obvious.

Later stages of FTD begin to share symptoms with Alzheimer’s disease, such as confusion, disorientation, memory loss and changes in behaviour.

Around 5% of dementia diagnoses are rarer types of dementia

At only approximately 5%, rarer types of dementia account for a small percentage of dementia diagnoses. These rarer types of dementia are usually more common under 65 years of age.

Creutzfeldt-Jakob Disease (CJD)

CJD is unlike most other forms of dementia because it can be contracted in different ways. CJD is caused by an abnormally shaped protein called a prion infecting the brain which damages the nerve cells, inhibiting their ability to communicate information around the brain and body, causing them to die.

A recent discovery in CJD research* identified a new form which is contracted by eating meat from cattle infected with bovine spongiform encephalopathy (BSE). This typically affected younger adults.

Symptoms of Creutzfeldt-Jakob Disease

In the early stages of CJD, symptoms can often be associated with the symptoms of Alzheimer’s including minor lapses of memory, mood changes and loss of interest. CJD typically progresses quickly, and symptoms such as clumsiness, confusion and impaired motor skills such as walking or talking can occur within weeks.

Symptoms in the later stages of CJD progress to jerky movements, shakiness, stiffness of limbs, incontinence and loss of the ability to move or speak.

Alcohol-related brain damage

As the name suggests, alcohol-related brain damage (ARBD) is caused by regularly drinking too much alcohol over a sustained period of time, usually several years.

The term ARBD includes several different conditions including Wernicke-Korsakoff syndrome and alcoholic dementia. None of these are actually a type of dementia, but they share similar symptoms.

  • The most common form of ARBD is alcoholic dementia which may also be called alcohol-related dementia. Excessive and sustained consumption of alcohol damages the nerve cells in the brain because not only is alcohol a toxin, but alcohol also interferes with the body’s ability to absorb vitamin B1 (thiamine). Thiamine is an important vitamin which provides the body with energy, and since the brain is the organ in the body which uses the most energy, a deficiency in thiamine causes a decline in the brain’s ability to function.
  • There are two stages in the development of Wernicke-Korsakoff syndrome. The first is Wernicke’s encephalopathy, which usually develops suddenly after abrupt alcohol withdrawal where thiamine levels plummet. Wernicke’s encephalopathy requires immediate treatment with intravenous thiamine, but if left untreated, Korsakoff’s syndrome usually develops. Korsakoff’s syndrome causes damage in several areas deep within the brain. These structures are responsible for short-term day-to-day memory.

Symptoms of ARBD

The symptoms of dementia caused by ARBD largely reflect the areas in the person’s brain that are damaged.

Symptoms include memory loss (particularly short-term memory), difficulty in planning, making decisions and judgements, impulsive behaviours such difficulty controlling emotions, problems with attention and a lack of sensitivity.

Dementia-related conditions

There are a number of conditions which can cause or mimic symptoms of dementia such as Parkinson’s, Corticobasal Degeneration (CBD), Huntington’s, Normal Pressure Hydrocephalus and Progressive Supranuclear Palsy (PSP).

Each condition may cause different types of dementia and symptoms to develop. You can find out more in the ‘dementia-related conditions’ section.

Young-onset dementia

Anyone living with dementia who is under 65 years of age is described as having early-onset or young-onset dementia and it is estimated that 42,000 younger people (under 65 years of age) are living with dementia in the UK.

There are many types of young-onset dementia, ranging from more common types to rarer types. You can find out more in the ‘young-onset dementia’ section.

There are a number of conditions which can increase the risk of dementia, directly cause dementia and mimic similar symptoms of dementia.

Parkinson’s

After living with Parkinson’s for a sustained period of time, the potential to develop dementia increases.

There are to main types of dementia which affect people living with Parkinson’s – Parkinson’s dementia and dementia with Lewy bodies which share similar causes.

The main difference is that problems with movement occur before cognitive symptoms in Parkinson’s dementia, but in dementia with Lewy bodies, cognitive symptoms occur before, or coincide with, problems with movement.

With both types of dementia, Lewy bodies spread from the brain stem to other structures in the brain, disrupting the cells’ ability to transmit information and causing them to die.

Symptoms of dementia associated with Parkinson’s disease vary with each individual from one day to the next.

The most common symptoms are memory loss, impaired thought processing and difficulties in carrying out everyday tasks. Someone living with Parkinson’s and dementia may become obsessive and struggle to control their emotions.

It’s not uncommon for symptoms such as visual hallucinations (seeing things which are not really there) to also occur.

Corticobasal degeneration (CBD)

Corticobasal degeneration is a rare disease typically affecting people between the ages of 60 and 80 and causes various symptoms of dementia to develop.

With CBD, areas of the brain such as the cortex (outer structures of the brain, sometimes referred to as grey matter) and the basal ganglia (inner structure) become damaged and begin to shrink.

Medical and scientific research have not yet been able to provide us with an answer to what causes CBD, but an excessive level of an abnormal protein called tau is thought to be connected.

The symptoms of CBD vary with how progressed the condition is. Initial include problems with movement, stiffness and a failure to control hand movement on one side.

Later stages of CBD develop other symptoms, such as a loss of balance & coordination, and difficulties speaking as well as cognitive symptoms associated with dementia, including problems with memory and thinking.

Huntington’s

Huntington’s disease is hereditary and caused by inheriting a defective gene. This defective gene causes abnormal movements and problems with coordination.

As Huntington’s progresses, symptoms typically associated with dementia begin to develop such as difficulties with thought processing, concentration, planning, controlling emotions and behaviour, as well as a decline in short-term memory.

The type of dementia associated with Huntington’s differs from Alzheimer’s disease in that those affected continue to recognise people and places until the very late stages of the illness.

Normal pressure hydrocephalus (NPH)

Normal pressure hydrocephalus (sometimes also referred to as Hakim’s syndrome and symptomatic hydrocephalus) is caused by excessive cerebrospinal fluid accumulating in the brain’s structures.

Hollow fluid-filled chambers in the brain called ventricles become filled with cerebrospinal fluid and as the ventricles swell, they can damage nearby brain tissue and disrupt the cells’ ability to communicate with one another.

NPH shares symptoms with Alzheimer’s disease, including declining thought processes, planning, decision-making and changes in personality and behaviour.

NPH can also cause difficulty in walking – sometimes compared to walking on a boat with the body bent forward, legs held apart and shuffling foot movements.

Later stages of NPH usually affect bladder control and the structures of the brain become affected. Treatment is available for NPH, which involves draining excess fluid in a surgical procedure.

Although the success of this treatment varies depending on how early the condition is diagnosed, some people make an almost complete recovery.

Posterior cortical atrophy (PCA)

PCA is also sometimes referred to as Benson’s syndrome and it is a rare degenerative condition in which damage occurs at the back (posterior region) of the brain.

In the majority of people diagnosed with PCA, Alzheimer’s is identified as the cause.

In the initial stages, PCA usually causes problems with vision and comprehension, such as recognising faces and objects, and also problems with literacy and numeracy.

As the disease progresses, a person living with PCA is likely to develop symptoms typical of Alzheimer’s such as confusion and memory loss.

Progressive supranuclear palsy (PSP)

Sometimes known as Steele-Richardson-Olszewski syndrome, progressive supranuclear palsy is a rare and progressive movement disorder which affects many areas of the brain.

Medical and scientific research has not yet established the cause of PSP, but an abnormal protein deposit called tau is thought to be connected.

These abnormal protein deposits restrict the nerve cells in the brain from communicating with one another, causing symptoms such as paralysis of eye movements, double vision, stiff or slow movements, difficulties in speaking and swallowing, and changes in behaviour and personality.

Whilst a small proportion of people with frontotemporal dementia sometimes develop PSP as an ‘overlapping’ condition, in most cases, the person is more likely to be described as ‘experiencing cognitive difficulties’ rather than ‘having dementia’.

Although a person living with PSP may experience problems with their speed of thinking and memory, they will remain aware of what is going on around them which is a key difference between PSP and dementia.

Multiple sclerosis

The term ‘dementia’ is not generally used in association with multiple sclerosis.

Although a person living with multiple sclerosis may experience a decline in their cognitive abilities such as their memory, concentration and problem solving, these symptoms are usually less severe as in other forms of dementia.

The phrase ‘experiencing cognitive difficulties’ is more commonplace when describing the condition of a person living with multiple sclerosis.

Types of young-onset dementia & early-onset dementia

Anyone living with dementia who is under 65 years of age is described as having early-onset or young-onset dementia.

The age of retirement has historically been 65, and the term ‘young-onset’ refers to dementia occurring before the traditional retirement age.

It is estimated that 42,000 younger people (under 65 years of age) are living with dementia in the UK. 10% of all young-onset dementia diagnoses indicate that the condition has been inherited from a parent, which suggests that young-onset dementia is more likely to be hereditary than other forms of dementia.

The causes of young-onset dementia are similar to other forms of dementia, but there are some important differences.

Young-onset Alzheimer’s

As with ‘late-onset’ Alzheimer’s, this type of dementia is caused by the formation of abnormal proteins called plaques and tangles in the brain which implicate the nerve cells’ ability to communicate.

Alzheimer’s is the most common type of dementia in both older and younger people, but younger people are more likely to have an ‘atypical’ (unusual) form of Alzheimer’s.

Unlike Alzheimer’s typically experienced by older people, the initial symptoms of Atypical Alzheimer’s is not memory loss, but problems with vision, speech or planning, decision-making and behaviour.

Young-onset vascular dementia

As with ‘late-onset’ vascular dementia, this type of ‘young-onset’ dementia is caused by restricted bloodflow to the brain, starving the brain cells of oxygen. Vascular dementia is closely linked to diabetes and to cardiovascular diseases in younger people.

Symptoms of vascular dementia may vary and younger people are more likely to experience problems with thought processing than memory loss.

Vascular dementia can also be hereditary, and this genetic form of vascular dementia known as CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is most common in people aged 30 to 50. Symptoms of CADASIL include migraines, repeated strokes, fits, low mood and progressive loss of mental abilities.

Young-onset frontotemporal dementia

As with late-onset frontotemporal dementia, the build-up of abnormal proteins inside the nerve cells in the front and side areas of the brain interrupt the communication between cells.

Whilst frontotemporal dementia is somewhat rare in older people, the percentage of younger people living with frontotemporal dementia is significantly higher at around 10-15%.

Medical research has established notable evidence to suggest that frontotemporal dementia is genetic in approximately 1 in 3 occasions.

Young-onset alcohol-related brain damage

Alcohol-related brain damage includes Wernicke Korsakoff’s syndrome and alcoholic (or alcohol-related) dementia. ARBD is caused by a lack of thiamine (vitamin B1), direct damage to nerve cells from alcohol which is a toxin, head injuries and a poor diet.

This type of dementia occurs most often in younger people who are often diagnosed in their 50s. At least 10% of people living with alcohol-related dementias are classed as younger people.

Symptoms of ARBD are dependent on the area of the brain that is damaged.

Symptoms include memory loss, difficulty in planning, making decisions and judgements, impulsive behaviours such difficulty controlling emotions, problems with attention and a lack of sensitivity.

Rarer forms of young-onset dementia

A significantly higher proportion of younger people than older people develop rarer types of dementia (around 20-25%). Neurological conditions such as Huntington’s disease, progressive supranuclear palsy, corticobasal degeneration and Creutzfeldt-Jakob disease (CJD) cause progressive damage to the nervous system and these degenerative neurological conditions are known to cause dementia.

Metabolic disorders such as Gaucher’s disease, Tay Sach’s disease and Niemann-Pick’s disease are also known causes of young-onset dementia because they typically develop in childhood or adolescence.

Hormone disorders such as thyroid problems, vitamin deficiencies, inflammatory conditions such as multiple sclerosis and infections such as HIV are also known causes of dementia – particularly in younger people.

What causes dementia?

Although dementia is typically associated with age, dementia is not a normal part of ageing.

There are many different types of dementia, and each can be caused by a variety of different factors. The particular reason that causes someone to develop dementia is still unknown, but lifestyle is thought to have a significant role in the risk of developing dementia.

Lifestyle causes 

Lifestyle choices such as maintaining a healthy diet, participating in regular exercise and avoiding smoking will help reduce the risk of serious conditions such as stroke, heart disease and cancer – all of which contribute to increased risk of developing dementia.

Specific causes

All dementias are caused by the destruction of nerve cells in the brain, but certain types of dementias have more specific causes than others.

Vascular dementia – when blood flow to the brain is restricted by an obstruction in the blood vessels, the brain doesn’t receive sufficient oxygen for the cells to respire effectively.

Without sufficient oxygen, the cells in the brain will die, which disrupts the communication of information around the brain and body and causes symptoms of dementia to develop.

Diseases – dementias caused by other diseases account for approximately 5% of dementia diagnoses in the UK. Parkinson’s, Huntington’s, HIV, progressive supranuclear palsy, Creutzfeldt-Jakob disease and learning disabilities all contribute to the development of dementia for those living with the condition.

Injury  medical and scientific research for trauma-related dementias is still in its early stages at the moment, but there is some initial evidence to suggest that some types of traumatic brain injury – particularly if repetitive (such as those received by sports players) have been linked to the development of dementia in later life.

Reversible factors – some dementias can be caused by underlying causes including vitamin deficiencies, thyroid abnormalities and mental health conditions such as depression.

Dementia with Lewy bodies

Each person living with dementia with Lewy bodies will have a different experience, but like all types of dementia, DLB is progressive and the abnormal proteins responsible for the causing damage to brain cells (Lewy bodies) will continue to build up in structures of the brain.

The spread and density of the Lewy bodies will vary with each individual. This means that the symptoms each individual will experience is also unique to each person because the Lewy bodies will affect different parts of the brain which have different functions.

Mild

Dementia with Lewy bodies also shares symptoms with Alzheimer’s in the early stage, and symptoms include:

  • Problems with attention and awareness, which can fluctuate significantly daily and even from moment to moment.
  • Difficulty in judging distances
  • Disorientation can lead to falls and fainting
  • Sleeping becomes disrupted
  • Ability to plan and organise becomes affected
  • Recurrent visual and auditory hallucinations can lead to distorted perceptions and delusions of persecution

Moderate

The earlier symptoms of dementia with Lewy bodies will become increasingly noticeable and signs that someone living with dementia with Lewy bodies has reached a moderate stage include:

  • Noticeable decline in motor skills which cause difficulties with movement.
  • Twitching
  • Stiffness
  • Slow movements
  • Loss of balance or coordination

Severe

As dementia with Lewy bodies progresses into the ‘severe’ stage, symptoms include:

  • Frequent and sustained confusion about days, times and places
  • Significant memory decline which may include forgetting events, names and faces
  • Communication problems become increasingly evident and speech can become challenging
  • Behavioural changes such as compulsive rituals, repetition and agitation
  • Slow movements
  • Difficulties in swallowing and eating – often causing weight loss

Diagnosing dementia

Dementia is not a normal part of ageing. So occasionally forgetting an item off your shopping list or missing an appointment doesn’t need to be an immediate cause for concern.

However, if you or a loved one is feeling worried about changes in your cognitive or physical abilities, seeking advice from your doctor will help you understand the cause of these changes.

Noticeable changes in your cognitive and physical abilities and behaviour may be caused by a treatable condition and seeking medical advice will help you access the right treatment.

If the cause of these changes is due to dementia, getting a formal diagnosis can be helpful to both yourself and your loved ones for many reasons.

Although a formal diagnosis can be a worrying prospect, having a full understanding of your health will help you plan for the future to ensure that your decisions today will help you live an enriched life in the future.

With medical and scientific research making new advances every day, the range of available treatment is under ongoing development. Getting a diagnosis will help you access appropriate treatment wherever it’s available.

It is absolutely possible to live well with dementia, and with a dedicated support network of loved ones, medical professionals, charities and care providers, you’ll be able to access the treatment, advice and companionship you need to help you life the life you know and love.

Who can diagnose dementia?

Occasionally a GP or specialist nurse will make the diagnosis, depending on their expertise and training, but diagnoses are usually by specialist medical professionals such as:

  • Psychiatrists – a mental health specialist
  • Geriatricians – a doctor specialising in the physical health of older people
  • Neurologists – a doctor specialising in diseases of the nervous system

What does a diagnosis involve?

Your local doctors’ surgery is a familiar location filled with familiar faces, which can be valuable comforts when having an initial discussion about dementia.

Your GP will be able to offer their advice and guidance, they may make an initial diagnosis or they might refer you to a colleague or specialist to ensure that you receive a detailed assessment.

There is no single test for dementia.

The human brain is a phenomenally intricate organ, and a combination of assessments will help you understand your circumstances.

After an initial discussion you may participate in:

  • A discussion with your GP will give you an opportunity to talk about how changes in your health have developed and how they’re affecting your daily life. It’s usually advisable for a loved one to also attend this discussion, to offer their own perspective and provide support.
  • A physical examination and tests such as blood tests will help gather further information about your health and eliminate other possible causes for the symptoms
  • Mental abilities will then usually be tested by memory tests and cognition tests. These tests aren’t designed to be a trick – their role is to help your medical team understand how your brain processes information. Simpler tests are usually carried out by a nurse or doctor, more specialist tests by a psychologist.
  • Sometimes more information is needed before a conclusive diagnosis can be made. A scan of the brain will usually indicate the type and extent of the damage to the brain.

The more detail you can discover regarding your health, the more you’ll be able to understand and plan for the future.

Treatments for dementia

Although a majority of dementias cannot currently be cured, medical and scientific research is unrelenting in the commitment to developing new treatments for dementia.

Advances are being made every day. Even if a research project doesn’t produce evidence for a cure, the information gained from the research will help to develop further research so future research can be more focused and effective.

Although dementia may affect many aspects of cognitive functioning, a support network of loved ones, medical professionals and care providers will ensure you receive the support to help you access the life you know and love.

Many people living with dementia lead active and fulfilling lives for many years. It is absolutely possible to live well with dementia.

Non-medical treatments for dementia

With ‘person-centred’ support (focusing on that person and their individual needs and preferences), much can be done to help someone live well with dementia without drugs or medication.

In many circumstances, health professionals actually advise that you or your loved one explores a variety of non-drug support options before seeking medication.

This isn’t without good reason. By building a support network of medical professionals, care providers, loved ones, groups and charities will ensure you receive the advice, guidance and compassion you need to truly live well with dementia:

  • The news that you or a loved one is living with dementia can be an emotional time and a diagnosis can leave you feeling isolated and anxious. By sharing your thoughts and feelings during talking therapies such as counselling or support groups, you will be able to find reassurance, support and advice on understanding your diagnosis and planning for the future to ensure you can keep living the life you love.
  • Cognitive stimulation therapy will help to keep the brain active which is an important way to combat the damaging effects of dementia. Cognitive stimulation therapy involves doing themed activity sessions over several weeks and they can be a valuable avenue to meet new friendly faces and support one another.
  • Independence is often a concern for someone living with dementia. Although cognitive functioning declines over time, there is much that can be done to help you or your loved one live safely, confidently and as independently as possible. There are practical devices such as pill boxes or calendar clocks which are designed to break tasks into simpler steps that are easier for the brain the process. The support of a care provider is also a valuable source of support for you and your loved ones.
  • Activities such as storytelling, story-sharing and reminiscing can be an enjoyable experience. By sharing life stories and memories, the activities and interaction can help improve someone’s mood, wellbeing and mental abilities.
  • Other popular activities are often organised by charities and support groups, and they are available across the country. It is absolutely vital that people living with dementia stay as active as they can – physically, mentally and socially. Taking part in meaningful activities such as singing, exercising or craft work enables you or your loved ones to discover companionship, confidence and self-esteem.
  • Medication

    Scientific and medical research has developed medication in various forms such as tablets and vaccines, all of which can help to treat the symptoms of dementia.

    There are three main drugs that are widely used in the treatments for dementia-related symptoms: donepezil, rivastigmine or galantamine.

  • These drugs are most often prescribed to those living with mild to moderate Alzheimer’s and they are designed to help with memory, motivation, concentration and aspects of everyday life. As Alzheimer’s progresses and the symptoms become too challenging for these drugs, a drug called memantine may be prescribed to help ease severe symptoms or challenging behaviours.

    The three drugs which are most often used to treat the symptoms of Alzheimer’s (donepezil, rivastigmine and galantamine) can also be helpful for someone with dementia with Lewy bodies who are experiencing distressing hallucinations or delusions or challenging behaviours.

    Those living with vascular dementia will typically be prescribed medication which is designed to tackle the medical condition(s) which caused the dementia. Drugs which control high blood pressure, high cholesterol, diabetes or heart problems can help to steady the progression of dementia.

    Given that experiences of dementia vary extensively from person to person, the medication received by one individual is likely to vary from another depending on the type, stage and symptoms. Drugs for depression or anxiety, sleeping tablets or antipsychotics are often used simultaneously with other drugs to ease the symptoms of dementia.

  • Living well with dementia

    The landscape of dementia care is changing. The historic term of ‘senile dementia’ is no longer in use, and living with dementia does not mean that lifestyle and liberty are immediately surrendered. While some lifestyle changes may be made as time progresses, planning ahead and making decisions about your lifestyle will enable you or your loved one to live well with dementia.

    Coming to terms with living with dementia

    The news that you or a loved one is living with dementia can be difficult to accept. Concerns and questions may all surface immediately, or they may develop over time.

  • This is entirely natural. But by seeking support from loved ones, medical professionals and care providers, you will be able to fully understand the choices available to you. Opening up a dialogue with someone, whether they are a family member, a friend, a member of a support group or charity, will give you an opportunity to share your experiences and seek invaluable reassurance and support so you never feel isolated.
  • The prospect of adapting your lifestyle over time may feel daunting, but it’s important to remember that absolutely everyone will change their lifestyle over time, for an infinite number of reasons. A diagnosis of dementia may present different challenges than others encounter in their lives, but with your support network, you will be able to make informed decisions to enable you to live a life you love.

    Planning for the future

    Dementia can bring about unexpected changes to your health and lifestyle and these new challenges can make it difficult to think about the future. However, it’s important to think ahead and planning for the future will not only ensure that you are able to make your own decisions about the life you want, but you’ll be able to communicate your wishes with loved ones, so they can act in your best interests when needed.

    An advanced statement is not legally binding, but it is a document which outlines your preferences and wishes regarding your care and lifestyle in the future. If future decisions are made by a person on your behalf, any advance statement must be taken into account.

    As part of your preparations, you may contact a care provider to discuss how they will be able to support you in the future. Although this prospect may seem daunting or even unnecessary in the early stages of dementia, sharing your advanced statement with an experienced and caring professional will help you establish your wishes for future care, and the transition to receiving support from carers won’t be so daunting.

    If you would like to state your wishes in a legal capacity, you can:

    Establish an advanced decision – unlike an advanced statement, an advanced decision IS legally binding. An advance decision is a decision made whilst you possess mental capacity, where you can outline your refusal of a specific type of treatment at some time in the future. Although this can be difficult to discuss, an advanced decision will help you ensure you maintain control over the decisions made about your medical treatment in the future.

    Establishing a power of attorney – a power of attorney gives your nominated adult ‘attorney’ the power to act legally on your behalf for financial and property matters, plus decisions on welfare and medical treatment if you lack the capacity to do so for yourself. Although not mandatory, it is advisable to establish a lasting power of attorney through a solicitor.

  • Specialist dementia care at home

    With assistance from professional care providers, you will have the right support to enable you to live confidently, safely and independently. Your loved ones will naturally be concerned for your wellbeing, so inviting a care provider to support you in your home will give them reassurance and peace of mind. There are many options available and navigating these options may seem confusing and daunting at first, but with guidance and support, you’ll be able to make decisions which suit your circumstances and your lifestyle.

    Visiting home care

    Many care providers use different terms to refer to visiting home care. Some use the term visiting home care, others use daily home care or hourly home care and you may come across more variants still. No matter what label is attached to the service, it’s advisable to contact the care provider to discuss what support they offer with each of their services.

  • At Trinity Homecare for example, ‘Daily home care’ is available from once a week to multiple visits each day and the level of support ranges from companionshipand help with everyday household tasks, to support with aspects of personal care such as bathing and continence care. The benefit of visiting home care is that the frequency and duration of the visits you receive can be changed as your dementia progresses, and the bespoke support will ensure your welfare is at the very centre of every decision that’s made about your care. By remaining in the familiar comforts and routines of your home environment, you’ll be able to live the life you know and love, as independently as possible.

    Live-in home care

    In the later stages of dementia, you or your loved one may require more support than that which visiting home care can accommodate for. Live-in home care ensures that you or your loved one receives one-to-one bespoke full-time care from a carer (or carers) living alongside them in the home.

  • The familiarity of our own home environments can help to make us feel safe and comforted, even if we are generally unaware of our surroundings in the later stages of dementia, the senses may still recognise elements of the home environment, which can be a source of comfort in times of distress.
  • A live-in carer will be carefully selected by your care provider to ensure that they are experienced and a suitable match to your lifestyle and personality. Maintaining a regular routine is beneficial for someone living with dementia, and a live-in carer will enable you or your loved one to follow their daily routines and behavioural patters as freely as possible.

    Care homes

    Care homes offer a different environment altogether. While the buildings are secure and adapted for residents’ varying needs, the staff to resident ratio is 1:4 on average. The staff in a care home may be responsible for the care of numerous residents, a live-in carer will give you or your loved one their undivided attention.

  • Care homes are also an unfamiliar environment and although many people living with advanced dementia often relocate to a care home, the routines, comforts and familiarities of home are lost, which can be distressing and unsettling. Staying close to loved ones, keeping pets, maintaining routines and many other aspects of life should be considered before making the decision to move into a care home.

    Telecare and assistance technology

    We’re all fortunate to live in a time of extensive technological development. New technologies such as smartphones and tablets are devices which we often take for granted, but the collaboration between new technology and the care industry has produced some interesting advances in assisted care.

  • The traditional ways of recording care notes are beginning to be replaced with innovative new systems (such as TrinityConnect) which store care notes, medication records, alerts and other information in an app, which can be viewed and updated by carers, care management teams and loved ones.
  • This is an encouraging step towards transparency in care and protecting the safety of sensitive information, which may have previously been left in a folder for anyone to read without permission. You may also encounter ‘telecare’, which are various pieces of technology designed to help protect the safety of a vulnerable person when they are unaccompanied.
  • There is a vast array of devices available, and a reputable care provider will be able to offer advice and guidance about which options would be most suitable. Telecare devices can be used to support someone living with dementia if they are alone between carer visits, it enables the person to remain independent whilst enabling loved ones to respond to situations quickly in the event of wandering, falls and other alerts.
  • Living with dementia – helpful tips to live WELL

    The progressive nature of dementia means that symptoms will develop and become more significant over time. The rate of the progression and they type of dementia may vary with each person, but there are many simple ways to live well with dementia.

    Living a healthy lifestyle is important for everyone. A balanced and nourishing diet will help maintain your physical wellbeing so you can concentrate on pursuing the lifestyle you want. Remaining as active as possible is scientifically proven to boost your mood because your brain releases chemicals which promote confidence and happiness. So a healthy body and active lifestyle can really help improve all aspects of your wellbeing!

    Maintaining your social life is vital for mental health and wellbeing. Engaging in local groups, hobbies and events will not only keep your mind active, but social interaction will combat feelings of isolation. Even if you wouldn’t usually join a group or organisation, engaging with others in a shared activity will help you or your loved one feel supported as part of a community, and it’ll also give you the opportunity to share your experiences and seek advice and guidance.

    Creating the best possible environment – practical tips for the home:

    • Keep a diary and write down things you want to remember
    • Pin a weekly timetable to the wall
    • Put your keys in an obvious place, such as a large bowl in the hall
    • Have a daily newspaper delivered to remind you of the date and day
    • Put labels on cupboards or drawers
    • Place helpful telephone numbers by the phone
    • Write reminders to yourself – for example, put a note on the front door to take your keys
    • Programme people’s names and numbers into your phone
    • Install safety devices, such as gas detectors and smoke alarms
    • Put bills on direct debits, so you don’t forget to pay them
    • A pill organiser box can be helpful for remembering which medications to take and when

    Tips to help you support your loved one

    Even if you’ve been aware that your loved one has been displaying symptoms of dementia for some time, a formal diagnosis can still feel like a shock. You’ll naturally feel concerned for your loved one’s wellbeing and how you can support them, but it’s important to remember that your wellbeing is also important when caring for others.

    Caring for a loved one can be both a rewarding and isolating experience. Your commitment to caring for your loved one can often lead to you disregarding your own wellbeing because you may feel guilty or anxious when leaving them for any amount of time from 5 minutes to 5 days. It’s absolutely essential to find a balance between caring for both your loved one and yourself. If you’re finding it increasingly difficult to manage the care of a loved one, seeking support is vital. If you’re feeling overwhelmed:

    1. Share the care. Sharing your responsibilities with others can be immensely beneficial for everyone. By introducing a care provider, your loved one will receive regular support from specially trained and experienced professionals who have committed their careers to providing compassionate care to those living with dementia. Regular care visits will enable you to pursue your own lifestyle with the reassurance and peace of mind that your loved one is receiving bespoke, heartfelt care. Being cared for by different carers can be a really positive experience for your loved one too. They’re able to build friendships and engage with new people in the comfort of their own home.
    2. Establish a support network. Your support network may include your loved one, their medical team, local communities and charities, as well as friends and family. In many ways, your lifestyle will undergo changes as your loved one’s dementia progresses, and it’s important to ensure that you are able to share your experiences with others and seek support.

    Practical tips for the home:

    • Consider colours and patterns in the home. As dementia affects perception, dark coloured rugs can sometimes look like holes in the floor, and switches that are the same colour as walls can be difficult to see.
    • Help your loved one keep a diary of things they want to remember
    • Pin a weekly timetable somewhere that’s easily accessible
    • Put emergency items such as a phone within their reach
    • If your loved one has a daily newspaper delivered to remind them of the date and day, clear away old papers to avoid confusion
    • Help your loved one locate household items by labelling cupboards or drawers
    • Place helpful telephone numbers by the phone
    • Leave reminders in helpful places – for example, put a note on the front door to take their keys
    • Install safety devices, such as gas detectors and smoke alarms
    • Ease the stress of paying bills by setting up direct debits
    • A pill organiser box can be helpful for remembering which medications to take and when.

      Making decisions on behalf of a loved one

      As dementia progresses and reaches more advanced stages, the thought processes and ability to make decisions become increasingly difficult. This implicates an individual’s ability to consent to decisions about their care.

      At this stage, your loved one may need to be assessed to determine their mental capacity.

      Mental capacity

      As dementia progresses, the structures in the brain that are responsible for problem-solving, reasoning, thought processing and decision-making functions may become affected. Just as the type and progression of dementia is unique to each individual, the extent to which dementia affects mental capacity will vary, for example, someone may lack capacity to decide on complex financial issues but the capacity to make other decisions such as which items to buy at the local shop remain unaffected.

      The more advanced stages of dementia may struggle to make and communicate their decisions. At this stage, your loved one may benefit from a mental capacity assessment. Care providers and health professionals are governed by the Mental Capacity Act (MCA), which is designed to protect and restore power to vulnerable adults who lack capacity, as well as those who have capacity and choose to plan for their future.

      Five key principles of the MCA:

      • Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise
      • All practicable effort should be made to encourage and support individuals to make decisions for themselves
      • Everyone has their own values, beliefs and preferences which may not be aligned to your own, but this is not a reasonable rationale for assuming mental incapacity
      • Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests
      • A best interests decision should be the least restrictive option when considering the person’s rights and freedoms of action

      Power of attorney

      In the event that an individual lacks mental capacity, but decisions need to be made regarding their care, it is advisable for a power of attorney to act on their behalf. A power of attorney can be established through a solicitor. This process is significantly more straightforward if completed whilst the person requiring care has mental capacity to nominate a power of attorney themselves. A nominated attorney has the authority to act legally in their loved one’s best interests for financial and property matters, plus decisions on welfare and medical treatment.

      How to behave – act as naturally as possible

      Whilst certain cognitive tasks may be more difficult than others, emotions and feelings can remain intact. In the later stages of dementia, when long-term memory becomes affected, your loved one may not remember that their partner passed away and they may request to visit them.

    • If you share the distressing news that they have passed away, your loved one will experience the grief as intensely as if it were the first time, and avoiding traumatic situations is of fundamental importance to maintaining your loved one’s well being. In this scenario, it may be advisable to plan a trip to visit their partner in the future, by which point the arrangement will have been forgotten and their feelings will have been protected.

      Clear communication – When caring for your loved one, maintaining their dignity is of fundamental importance. Your loved one may feel distressed as their dementia affects aspects of their everyday life, but by keeping communication clear and simple, you’ll help your loved one feel supported in interaction.

      Distract and redirect – There will be times, particularly during the later stages of dementia, when your loved one may struggle to communicate with you or perform a certain task. Sometimes, even attempting to assist them can be extremely frustrating for them, so redirection and distraction can be useful ways to soothe these frustrations. Changing the subject to something new will help engage you both in a new activity.

      Allow your loved one to make decisions – Freedom of choice is an important way to maintain independence. Although decision-making abilities may be affected by dementia, there are creative ways to ensure that your loved one is still able to make choices for themselves. Open-ended questions such as “what would you like for dinner?” can cause distress, but enabling your loved one to choose their preference from a selection of options, for example, “would you like shepherd’s pie or fish & chips for dinner?” will protect their freedom of choice and independence.

      False truths – As dementia progresses, your loved one may begin to share stories which you know to be untrue. Although human nature would be to correct them, it’s important to understand that the story is true in the mind of your loved one and correcting or challenging them may this may cause confusion and distress.

      Keep life positive – A journey with dementia can be distressing for everyone involved, and maintaining a positive outlook in spite of the daily challenges can sometimes feel impossible. But there is joy to be found in every day. Look for elements of happiness and positivity in everyday life and share these with your loved one. Although they may not acknowledge your positivity in a way you’d expect, your influence will help support their mental wellbeing.

      Be open and honest – If a friend or family member finds it hard to talk about dementia, make the first move and explain how they are able to help you. This will shift the focus of power to the person living with dementia and enable them to feel like they have the ability to support others.

    • Useful dementia resources for more information and support

      With a support network in the millions spanning the globe, there are many organisations with useful resources which can help you or your loved one live well with dementia.

      National dementia resources, services and charities:

      The NHS – information and advice for people with dementia and their friends and families

      The Alzheimer’s Society is a charity which has established a nationwide network of ‘Dementia Friends’. ‘Dementia Friends’ are members of the public who have pledged their support to take action in their local communities to help those living with dementia.

      Although the Alzheimer’s Association is based in America, their website has a wealth of useful information and resources.

      Age UK not only has a useful guide providing information and advice about dementia, but their involvement in communities across the UK means their support is available nationwide.

      For information about the latest research and advances from medical science and to find out how you can help, visit Alzheimer’s Research UK.

      Being a condition of the brain, dementia has close links to mental health. The Mental Health Foundation and Mind share a mission to help people thrive through understanding, protecting and sustaining their mental health, which is equally as important for those living with dementia and their loved ones.

      Dementia Adventure is a charity which enables people living with dementia to explore new adventures and holidays which are specially designed for those living with dementia.

      Local dementia resources & services

      At Trinity Homecare, we are based in Surrey and we provide our visiting service ‘Daily homecare’ across many areas in Surrey, our Trinity-managed live-in care is available across the Home Counties and our Self-managed live-in care is available across England and Wales. We are proud to be an active member of our local community in Surrey, and we have useful connections to Surrey organisations to help support you and your loved ones.

      The Surrey Community Directory is a useful resource to help you find local clubs, groups and activities in your local area.