Ahead of Dementia

By Luciana Mitzkun

A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Caring for a loved one with dementia is one of the greatest challenges one might face in life. It requires resilience, creativity, planning, and knowledge of the multiple facets of dementia care. This book brings an overview of what family caregivers must know to identify and manage dementia symptoms, to make the best plans for future care, and avoid costly mistakes as dementia progresses. Pragmatic, concise, and straight to the point, yet with poignant anecdotes and compassionate wisdom, Ahead of Dementia is a must-read for those who want to know how best to help their loved ones while also caring for themselves.

Valuable information for the busy family caregiver who wants straightforward information on how to stay ahead of dementia. From recognizing the first symptoms, to understanding the diagnosis, care strategies, legal and financial issues, managing behaviors, and planning for long-term care: a comprehensive view of what it takes to care for a loved one with dementia.

• Language: English
• Publisher: Luciana Mitzkun
• Release date: Nov 27, 2016
• ISBN: 9781540105226

Luciana Mitzkun

Luciana Mitzkun is a health educator specialized in dementia care, with over 25 years of experience in working with caregivers for dementia patients and people living with dementia. In her work with the Alzheimer's Association Luciana has helped thousands of families to manage dementia issues and formulate successful care plans. Luciana is also a mediator, which allows her to assist with conflict resolution, as families struggle to come to terms with changes related to dementia. Luciana is the Director of Family Services at the Friendship Daycare Center, in Santa Barbara, California, where she lives.

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—  2  —

What is Dementia?

If you’ve seen one person with dementia, you’ve seen one person with dementia.

— Unknown

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Dementia (from Latin, de = without + ment = mind) is a serious impairment in cognitive ability in a previously unimpaired person. People affected with dementia experience sustained difficulties in some or all areas of cognition, including memory, language, judgment, organization, perception, reasoning, and abstraction. These difficulties are chronic and interfere with activities of daily life.

Dementia may be non-progressive—also known as static—such as the cognitive impairment resulting from a head injury. It can also be progressive, as in the main symptom of certain degenerative brain diseases including Alzheimer’s. Although dementia is far more common in older adults, it may occur at any stage of adulthood, and it is not to be confused with the normal changes that accompany aging.

Dementia itself is not a disease. Rather, it describes a cluster of non-specific signs and symptoms characterized by cognitive losses. This is similar to how a fever is not a disease; it is, rather, a set of symptoms characterized by a high body temperature. A fever is not the problem itself, it is the result of a problem someplace else. In both cases, the underlying causes for the condition may vary. And, in both cases, we are naming not the cause of the problem but the problem that it causes.

Most people equate dementia merely with memory loss. Dementia, however, causes cognitive losses that extend far beyond problems with memory. It affects the ability to learn, reason, plan, and recall past experiences. It interferes with thought patterns, how one processes feelings, and one’s ability to perform regular activities. Dementia also causes behavioral and emotional symptoms including depression, anxiety, psychosis (often delusions of persecution), agitation, and in some cases aggression. Each of these symptoms must be assessed and treated independently.

People who have dementia may also suffer from other medical conditions, such as diabetes, heart disease, and arthritis, which may further affect quality of life and create extra challenges for the family caregiver, resulting in an additional need for specialized care.

Remember: Dementia, unlike cognitive impairment resulting from a congenital problem, affects people who were previously cognitively unimpaired.

We are all different individuals. We have different strengths, different experiences, different likes and dislikes, and different life stories. Each of us is unique. When affected with dementia, we bring our uniqueness into our dementia experience, such that each case of dementia is as unique as we all are.

A person affected with dementia will experience cognitive loss at his own rate and will manifest symptoms in distinct ways.

Some personal strengths may remain intact well into the progression of dementia. Some learned behaviors will continue seemingly unaffected. There may be changes in activity levels and in the ability to deal with stressful situations. There may be increased frustration and lack of impulse control. Over time, progressive dementia affects all areas of cognition. The particular effects of dementia, however, will vary from person to person.

The extreme variation in how symptoms are manifested in each person makes dementia somewhat unpredictable and complex to treat. We simply cannot predict exactly how a particular person will be affected. Some patients decline quickly, whereas others retain cognitive abilities longer. Some have troublesome emotional and behavioral symptoms, others don’t. Consequently, there is no one-size-fits-all treatment. Each patient requires an individual evaluation and attention; therapies that work for some may not work for others.

Next we address some of the changes that may occur with dementia in each area of cognition:

▪ Memory

Short-term memory loss while long-term memory remains unaltered

Gradual loss of detail in long-term memory

Eventually, loss of all memory, short- and long-term

▪ Language

Difficulty in finding words

Loss of vocabulary

Difficulty in formulating sentences

Eventually, loss of all spoken language

▪ Reasoning

Inability to connect cause and effect

Increase in erratic and self-centered behaviors

Eventually, decision-making is based solely on what feels good at the moment

▪ Judgment

Increase in poor and unsafe decisions

Difficulty deciding among multiple choices

Increased hesitancy or impulsivity

Insensitivity to the needs of others

▪ Perception

Inability to interpret information, images, and events

Loss of conceptualization of time and its significance

Increased discomfort with busy environments

Suspiciousness and paranoia

▪ Abstraction

Loss of established concepts (time, distance, relation-ships, social conventions)

Inability to use abstract thinking

Inability to think hypothetically

▪ Attention

Difficulty staying on task

Increased susceptibility to distractions

Inability to multitask

▪ Organization

Difficulty in sequencing actions correctly

Inability to formulate or follow plans

Inability to perform tasks requiring multiple steps

These changes may happen individually or together, and at different times and rates for different patients. Further complicating the matter, the type of dementia also influences the intensity of the changes and the order in which they may appear.

There are more than 50 known diseases that can cause dementia. A thorough medical examination is necessary for all individuals who are experiencing cognitive changes in order to identify the underlying cause(s) and determine the best course of treatment. Here we list some, but not all, of the possible causes of dementia:

Alzheimer’s disease

Alzheimer’s disease—Younger onset

Alexander disease

Behçet’s disease

Canavan disease

Cerebrotendinous

Xanthomatosis

Canavan disease

Cerebrotendinous

Xanthomatosis

Dentatorubralpallidoluysian atrophy

(DRPLA)

Fragile X-associatedNeurodegenerative tremor/ataxia syndrome

Glutaric aciduria type 1

HIV infection

Huntington’s disease

Krabbe’s disease

Kufs’ disease

Leukoencephalopathy

Lewy Body disease

Maple syrup urine disease

Meningitis

Multi-infarct dementia (Vascular Dementia)

Multiple sclerosis

Neuroacanthocytosis

Neurosyphilis

Niemann Pick disease type C

Organic acidemias

Parkinson’s disease

Pelizaeus-Merzbacher disease

Picks disease (frontotemporal dementia)

Sanfilippo syndrome type B

Sarcoidosis

Spinocerebellar ataxia type 2

Subacute sclerosing panencephalitis (SSPE)

Systemic lupus erythematosus

Urea cycle disorders

Whipple's disease

Non-Progressive (Static) Dementia

Non-progressive or static dementia typically occurs as the result of a single event and is commonly associated with acquired brain injuries. There are many possible causes for acquired brain injuries, which may or may not include external physical head trauma.

When the injury to the brain is the result of external physical trauma such as a head injury suffered in a violent assault, a car accident, a fall, or a gunshot wound, it is called a traumatic brain injury (TBI). The magnitude of dementia symptoms experienced as the result of a TBI varies according to the location of the damage in the brain and the extent of brain cell loss. TBI is the leading cause of dementia among those under 30, and was the most common injury among soldiers returning from wars in the Middle-East in the early 2000s.

Acquired brain injuries can also occur without external trauma whenever there is a temporary reduction in the supply of blood and oxygen to the brain. Some causes for non-traumatic brain injuries can include asphyxiation, near-drowning, narrow or clogged arteries, strokes, as well as certain infections. In such cases brain cells are deprived of blood and oxygen and die as a result. As in TBIs, the extent of resulting dementia depends on where brain cell death occurred and how much of the brain was affected.

American Crowbar Case

Cavendish, Vermont, 1848. Railroad foreman Phineas Gage extraordinarily survived an accident where a tamping iron—11/4 inches in diameter, 3.7 feet long, and weighing 13 1/4 pounds—entering the left side of Gage’s face in an upward direction, was driven completely through his head, destroying much of his left frontal lobe. Gage, who was well-liked and had been known for being a polite, conscientious, and thoughtful man before the accident, suffered a radical change in personality. For the remaining 12 years of his life he was reckless, rude, and socially irresponsible. His friends remarked that Gage was no longer himself. Gage became neuroscience’s most notable patient: His was the first case to suggest that personality is determined in the brain and that damage to specific parts of the brain may result in personality changes.▪

Dementia resulting from brain injury is referred to as static because it is not progressive in nature, that is, it does not get worse over time. On the contrary, after a medical evaluation and treatment, static dementia tends to improve over time and patients can greatly benefit from cognitive therapies and other treatments. Some patients reach a plateau in their rehabilitation, whereas others are able to return to their preinjury cognitive status.

Cognitive rehabilitation in static dementias is possible because of the special ability of neurons to reshape themselves and grow new connections to other neurons. Neurons are the thinking cells of the brain; their ability to reshape is known as neuroplasticity. When neurons die they do not get replaced. Unlike new skin cells that form when recovering from a scrape, new neurons are not created to replace lost ones. Their functions cease with their death, and cognition may be affected as a result. But thanks to neuroplasticity, healthy neighboring neurons can reshape themselves, rewire, and learn to perform the functions previously performed by the now-dead cells. Cognition can improve as a result.

Chronic substance use—alcohol and certain drugs, both prescribed and recreational—can also result in static dementia. The symptoms of dementia related to substance abuse last far beyond the temporary impairment associated with periods of intoxication. Even after chronic use ceases, the cognitive impairment may be permanent, although not progressive. The same is true for dementia caused by exposure to poisonous substances, such as heavy metals (i.e., mercury, arsenic, and lead) and harmful agents, such as toxic mold. Once exposure stops the progression of dementia will cease.

Progressive Dementia

Progressive dementia begins gradually and becomes more pervasive over time, often lasting several years. It is usually caused by a neurodegenerative disease, a condition that primarily affects the brain and causes gradual and irreversible loss of brain cells, which in turn leads to a decline in brain function.

Among the most common neurodegenerative diseases, Alzheimer’s has the highest incidence—responsible for nearly 70% of cases of dementia in people over 65—followed by vascular dementia, also known as multi-infarct dementia. Lewy body disease is another fairly common dementia-causing disease, often appearing in connection with Parkinson’s disease. Frontotemporal dementia is less common although not rare. We will examine each of these conditions more closely in the following pages.

Unlike patients with a static form of dementia, those with progressive dementia do not benefit much from cognitive therapies. Although the neurons in a brain affected by neurodegenerative diseases still have plasticity, the persistent, continuous rate of damage to neurons hinders the rewiring process, and once brain functions are lost they tend to remain lost. That is to say, you cannot expect an Alzheimer’s patient to relearn something he has forgotten. Rather than placing emphasis on a patient relearning something that has been forgotten, therapies must focus on his retention of existing skills for as long as possible. This can be achieved through diligent practice, repetition, and routine.

Progressive dementia is much less common in people under 65. Alzheimer’s disease is still the most frequent cause of dementia in this age group, although it is a rare, inherited form of the disease known as younger/earlier onset, or familial Alzheimer’s. Frontotemporal dementia (also known as Pick’s disease) and Huntington’s disease account for the majority of other cases. People exposed to repeated head injuries, such as boxers or martial artists, are at risk of dementia pugilistica. Studies have also shown a higher risk of dementia in ex-NFL players.

Normal pressure hydrocephalus, although relatively rare, is important to recognize since proper treatment may prevent its progression and reduce the severity of symptoms.

Most cases of cognitive decline in young adults—up to 40 years of age—are caused by psychiatric illness, exposure to toxic substances, or metabolic disturbances. However, certain rare genetic disorders can cause neurodegenerative dementia at this age. These include early-onset Alzheimer’s disease, SCA17, adrenoleukodystrophy, Gaucher’s disease, metachromatic leukodystrophy, pantothenate kinase-associated neurodegeneration, Tay-Sachs disease, and Wilson’s disease. Wilson’s disease is particularly notable because the cognitive losses related to it can improve with treatment. People with Down’s Syndrome are also at higher risk for Alzheimer’s disease at such young ages.

At all ages, a substantial number of patients who complain of memory loss or other cognitive symptoms are suffering from depression rather than a neurodegenerative disease. Vitamin deficiencies (B12, folate, or niacin) and chronic infections may also occur at any age, occasionally causing symptoms that mimic degenerative dementia. A doctor or pharmacist should review medication interactions and their side-effects, since these can sometimes cause cognitive impairment. Hormonal imbalances can also impair cognitive functioning.

Prevention

There is no sure way of preventing the neurodegenerative diseases that cause progressive dementia, including Alzheimer’s. Epidemiologic studies, however, have identified common factors that indicate increased risk for such diseases.

Obesity, vascular disease, lack of exercise, smoking, excessive alcohol intake, diets rich in animal fats and low in vegetables, insomnia, and high levels of stress are some of the factors known to elevate the risk of dementia over a lifetime.

On the other hand, there are certain factors that may reduce the risk of dementia, and these are mostly related to lifestyle choices: regular physical exercise, eating a balanced diet, moderate alcohol consumption, low stress levels, and keeping cholesterol levels and blood pressure under control.

Basically, what is good for your heart is also good for your brain.

Notably, regular physical exercise has been found to be the most important factor in reducing the risk of dementia, as well as delaying its progression even after the appearance of initial symptoms[2] [3].

Physical exercise is believed to be essential for the maintenance of regular blood flow to brain cells and stimulation for the formation of new brain connections. Studies show that:

▪ Obesity increases the risk of Alzheimer’s disease up to 74%[4].

▪ People with larger bellies in their 40s are more likely to have dementia when they reached their 70s[5].

▪ Regular, moderate exercise in one’s 50s and 60s helps protect against mild cognitive impairment[6].

▪ People with early-stage Alzheimer’s who were physically fit tend to have less brain shrinkage than those who did not exercise.

Research indicates the following:

► High cholesterol levels contribute to stroke and brain cell damage[7]; a low-fat, low-cholesterol diet is advisable

► There is growing evidence that a diet rich in dark vegetables and fruits (containing high levels of antioxidants) may help protect brain cells

► Social and mentally stimulating activities can reduce stress levels, which helps maintain healthy connections among brain cells[8]

► People with more advanced education have a lower incidence of Alzheimer’s[9]

► Older people who had completed high school tend to live 2.5 years longer without cognitive loss than those without a high school education[10]

► Those with more education performed better on memory and problem-solving tests than others with similar amounts of brain plaques related to Alzheimer’s

—  3  —

Your First Hurdle: Getting Your Loved One to the Doctor

A good half of the art of living is resilience.

— Alain de Bottom

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This may be your first hurdle as a concerned family member: How to get her to the doctor?

Those who are aware of their own cognitive changes may be willing to be examined by a doctor. However, this willingness may be seasoned with extreme fear of receiving a dementia diagnosis and of the subsequent life changes this diagnosis will bring. You may notice some hesitation and avoidance. Those suffering from dementia are often reluctant to seek medical assistance on their own.

If your loved one is aware of changes in her cognition, she may need your support to overcome the fear of a dementia diagnosis before she is ready to seek a medical evaluation. You may be scared too.

Remember, and remind your loved one, that not all cognitive changes are attributed to dementia. As noted in Chapter 2, there are a number of conditions that may cause the symptoms you are observing. Many of these conditions are treatable. Give your loved one encouragement and offer your companionship and support. It is much easier to face a possibly devastating diagnosis when you have a loving supporter by your side. From this step forward, keep in mind that love and affection are the best strategies for dealing with cognitive impairments! The prospect of a possible dementia diagnosis is always frightening. When the patient has self-awareness it is possible to overcome the fear, seek a medical evaluation, and begin developing self-help strategies that will be helpful in the long run.

But awareness of change in one’s own cognition is not always the case. People experiencing symptoms of dementia are often completely oblivious to their cognitive changes. Lack of self-awareness is a core element of dementia; the ensuing impacted perception renders the patient unable to recognize her own cognitive decline. The more advanced the dementia, the greater the patient’s lack of awareness.

So if you say: You need to see the doctor because of your memory loss.

She may respond: What memory loss? My memory is just fine!

And you try to convince her by saying: No it isn’t. Remember leaving your car at the store and walking home? Don’t you remember asking me a thousand times where the cat food was?

She responds: Why are you doing this to me? Leave me alone!

Now you are exasperated and have managed to upset both of you without having accomplished a thing!

If a lack of self-awareness is evident, your bringing attention to cognitive losses may only make things worse. At this time you need to draw upon some of the core principles of communicating with the cognitively impaired—a skill you must learn.

DARE

Do NOT Argue, Reason, or Explain

Dementia progressively affects one’s ability to use logical thinking or reasoning. If your loved one’s ability has already been diminished, you will have a hard time explaining why a doctor’s evaluation is necessary. He may not understand the need for a doctor. He may misinterpret your intentions and think you are picking on him. Trying to explain or reason will likely cause anxiety and result in an argument.

While reasoning might work with someone who is not suffering from dementia, you must find other ways of getting him to the doctor, without offering much explanation. You may simply say that it is a routine evaluation. You may say it was ordered by the primary care physician. You may say that the evaluation is required for insurance purposes. Don’t explain why. Don’t tell him he is forgetting things. Reminding him that he is forgetful will only make him feel singled out or unable to live up to your expectations, and certainly, it will make him feel defensive. These are negative feelings you want to avoid because they linger in dementia patients, causing anxiety and behavioral problems for hours, sometimes days.

He is not in denial. He is actually unable to recognize and understand his own cognitive decline. Explaining will not make him understand. Don’t argue or reason, just find a way to make it happen without confrontation.

Some patients absolutely refuse to see a doctor. In such cases family members may need to use a little fib, or fiblets, as some prefer to call them.

Fiblets are scenarios concocted by the caregiver to help a loved one with dementia adjust to a situation she may not be able to fully comprehend. A good example of a fiblet in the case of one’s unshakable refusal to see a doctor, is to pretend that the consultation is for oneself (pre-arranging this with the doctor) and ask her to accompany you, telling her you need her support.

Dementia specialists understand how difficult it can be to get a patient into the office and they will work with you on creating and enacting a fiblet. Some doctors are particularly skilled at it, and you will benefit from the assistance of a doctor with effective dementia bedside manners. Be sure to provide the doctor with a list of signs or symptoms ahead of the consultation (use fax or email) and be prepared to perform some cognitive tests yourself, since you are the patient.

A Man’s Best Friend

Bob had never liked going to the doctor. Now that he had dementia he was even more resistant to a consultation. But Bob had a beloved dog, Max. Although Bob would not see a doctor for himself he was more than willing to take Max to the veterinarian. Ann, Bob’s wife, arranged to bring Max to a neurologist, who pretended to examine Max while really examining Bob.▪

Another fiblet that has been successful is telling the patient that a doctor examination is now a Social Security requirement, determined by new changes in health care laws. People are more likely to go to the doctor if they think their benefits will be compromised. Whatever you can do to get your loved one to a doctor, do it.

Cognitive changes may or may not be a symptom of a brain disease. A medical evaluation is essential and is the very first step that must be taken when changes are observed. Whether the changes are very mild or already severe enough to interfere with life activities, a thorough medical evaluation is necessary to identify the causes and determine treatment options.

► Ask your local Alzheimer’s Association chapter office for a list of neurologists who specialize in dementia in your area.

► Have the primary physician write a referral to a neurologist on a prescription note. In many dementias, what is seen is better assimilated than what is heard. You can use it to visually remind your loved one about the upcoming