What is dementia?

If there is a boogieman out there, his name is dementia and unlike the monsters under the bed when you were a child, this monster is real. However, as with most monsters, with proper preparation you can keep the monster from completely destroying your life.  Here’s one person’s take on preparing for the disease.

Dementia is not a normal part of aging but rather a symptom of underlying medical conditions leading to a decline of mental abilities such as thinking, reasoning and memory and impacts a person’s ability to perform activities of daily living (ADL) such as bathing, dressing and eating.  In the not too distant past, people said of someone who was older and having cognitive problems that they were senile.  But over the past few decades, dementia diagnosis for some notable people including Ronald Reagan and Rita Hayworth have helped de-stigmatized the disease.

It’s estimated that 1 in 6 women and 1 in 10 men who live past the age of 55 will develop dementia in their lifetime.  It’s already so prevalent that if dementia comes up as a topic of conversation, nearly everyone has a story to tell of a neighbor, a friend or a loved one.  All told, about 5.4 million people in the United States have some degree of dementia according to Alzheimer’s & Dementia, The Journal of the Alzheimer’s Association, a report of the Alzheimer’s Association.  With the aging of the population, the number of dementia cases is expected to increase exponentially to as many as 16 million by the year 2050. And while it most often occurs in older people, it can occur in those much younger.

Who is impacted by dementia?

While dementia can occur in adults (and depending upon the disorder even among the young) at any age, it is significantly more common among elderly people.  The effects of dementia extend far beyond the number of people with the symptoms of dementia.  An estimated $200 billion will be spent on direct costs in caring for individuals including $140 billion in costs to Medicare and Medicaid.  Medicare payments for services to beneficiaries 65 years or older are three times the rate of beneficiaries in the same age group without dementia and Medicaid payments are 19 times as great.  In addition to the direct costs, there are significant impacts to the caregivers and to society as a whole.   An estimated $210 billion worth of unpaid care is provided each year by more than 15 million Americans.  While those numbers seem sky high today, they are expected to shoot up to a projected $1.1 trillion (in today’s dollars) by 2050.

What causes dementia?

There are many different causes of dementia, the most common being degenerative neurological diseases, such as Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and some types of multiple sclerosis. Other common causes are vascular disorders – such as multiple-infarct dementia, which is caused by multiple strokes; infections – such as HIV dementia complex and Creutzfeldt-Jakob disease, chronic drug use, depression, and types of hydrocephalus – an accumulation of fluid in the brain caused by developmental abnormalities, infections, injury, or brain tumors.  The biggest single risk factor is aging.

Most of the diseases that cause dementia are incurable. It’s important when considering a diagnosis of Alzheimer’s or some other dementia that the individual consult a specialist such as a geriatric internist, geriatric psychiatrist, neurologist, neuropsychologist or geropsychologist and receive a thorough examination for a more reliable diagnosis.  Specialists in geriatric medicine are better able to determine whether symptoms are age-related or not.  Other causes must also be ruled out such as some vitamin deficiencies, medications, as well as a stroke or alcoholism for instance, which can mimic dementia symptoms.  These need to be ruled out as some symptoms may be reversible if caught and treated.  Then too, medications for one form of dementia do not necessarily work on other forms so it’s necessary to get an accurate assessment of which dementia if indeed any dementia is at play.  While there are many causes of dementia, most dementias are rare.

Types of dementias

These forms of dementia permanently damage brain cells.  Treatment focuses on slowing the disease’s progression and relieving symptoms rather than curing.  There are two major categories of dementia and these relate to what part of the brain is affected.  They are cortical dementias and subcortical dementias.  A third category, multi-infarct dementia, affects both parts of the brain.

Cortical dementias such as Alzheimer’s and Creutzfeldt-Jakob disease affect the cerebral cortex.  This is where critical thinking skills such as memory and language reside.  Individuals with damage to this area of the brain eventually lose the ability to remember and understand language.

Subcortical dementias such as Parkinson’s disease, Huntington’s disease and AIDS dementia complex are a result of a dysfunction in the areas of the brain under the cortex.  Individuals with these diseases have problems with starting activities and are slow to respond.

Alzheimer’s disease:

Alzheimer’s disease is the sixth-leading cause of death in the country.  It’s difficult to say how many dementia cases are Alzheimer’s as definitive Alzheimer’s disease requires an autopsy, but estimates range anywhere from 50 percent to as high as 70 percent.  Of the top 10 causes of death in the United States, only Alzheimer’s cannot be prevented, cured or slowed.  Either way it is the most common cause of dementia by far.  The disease is partly hereditary in that it runs in families; however, just because a relative has Alzheimer’s does not mean that other family members will also get the disease.

Medically, Alzheimer’s disease is characterized by abnormal quantities of protein deposits in the brain which destroy cells associated with memory and mental functions.  People with Alzheimer’s have lower than normal levels of neurotransmitters, a chemical that controls important brain functions.  People with Alzheimer’s disease usually experience a relatively slow onset of the disease that as it progresses affects multiple aspects of their cognitive abilities such as language, memory and personality.  Aside from the cognitive decline, these individuals may have little impairment of basic body functions or the ability to walk.

Unfortunately while some medications can slow its progress, scientists are very much in the early stages of studying Alzheimer’s and at this time it is not reversible and no known cure exists.  There is promising research that relates it to Type II Diabetes, while another research study suggests that early use of hormones in women may stall it.

Vascular dementia:

Vascular dementia is the second most common cause of dementia accounting for as much as 40 percent of dementia cases.  Caused by hardening of the arteries, the resulting blockages interrupt the blood flow resulting in a stroke.   The interruptions, also called infarctions give this type of dementia its other name—multi-infarct dementia.  This type of dementia is at least partially preventable as it is related to high blood pressure, high cholesterol, heart disease and diabetes.  Individuals with this form of dementia often have problems with attention, orientation and urinary incontinence.  Vascular dementia’s progress can be slowed by treating those conditions but once the functions are lost, they do not come back.

Lewy body dementia

Lewy body dementia is caused by abnormal deposits of protein which destroy nerve cells.  Those microscopic deposits are called Lewy bodies which is where the name for the dementia comes from.  Individuals with Lewy body dementia have symptoms similar to Parkinson’s disease such as tremor and muscle rigidity.  Lewy body dementia is not reversible and has no known cure.  Some people with Lewy body dementia have benefitted from the drugs used to treat Alzheimer’s disease.

Frontal-temporal lobe dementia

Frontal-temporal refers to a range of conditions rather than a single type and includes Pick’s disease.  Frontal-temporal lobe dementia is a rare disorder that damages cells in the frontal-temporal (the front part of the brain).  Damage to this area impacts behavior, emotional responses and language skills.  People with this disease often seem to lack insight and can appear selfish and unfeeling.  They can undergo extreme behavior changes and lose their inhibitions, behave aggressively and behave inappropriately.  They may also begin to experience language difficulty and change their eating habits.

Although it is rare in older adults, it is a significant cause for dementia in adults under the age of 65.  From one-third to one-half of all cases come from individuals with a family history of Frontal-temporal dementia.

Like Alzheimer’s disease, a positive identification may not be possible until after death.  There is no cure for Frontal-temporal dementia and the disease’s progression cannot be slowed.  Drugs used for treating Alzheimer’s may make symptoms worse and increase aggression.

Huntington’s disease

Huntington’s disease or Huntington disease is an inherited disease that causes wasting of certain types of brain cells that control movement as well as reasoning, memory, speech and judgment.  Personality changes are typical.  It’s caused by a genetic defect that causes a chromosome to replicate far more often than it is supposed to.

Huntington’s disease can be early onset (found in childhood or adolescence) or adult-onset which generally occurs in individuals in their 30s to 40s.  Behavioral changes include hallucinations, irritability, moodiness, paranoia, and psychosis.  The dementia form of the disease includes disorientation, loss of judgment and memory, personality changes and speech changes.

There are test which can determine genetic propensity for the disease.  A brain scan may show loss of brain tissue.    There is no cure for the disease and no known way to stop the disease from getting worse.  Treatments may slow the symptoms and help individuals function better for a time.

Creutzfeldt-Jakob disease

Creutzfeldt-Jakob is a rare form of brain damage that is thought to be caused by a protein that causes normal proteins to fold abnormally affecting other proteins’ ability to function.  It occurs most often in young to middle-aged adults.  The disease progresses rapidly and is fatal.  Symptoms include but are not limited to blurred vision, changes in walking, confusion, dementia that occurs over a few weeks or months, hallucinations.

There are two kinds of classic Creutzfeldt-Jakob disease.  The sporadic form occurs for no known reason and usually starts at around age 65.  A familial form of the disease also exists.   Variant Creutzfeldt-Jakob is a form of the disease related to mad cow disease and can be caused by contaminated products.  This form makes up only about 1 percent of cases.  There are fewer than 200 people world-wide with variant Creutzfeldt-Jakob disease.  The disease can only be confirmed with an autopsy.  There is no known cure for the condition although medications may help slow the disease.

Parkinson’s disease with dementia

Parkinson’s disease is a nervous system disorder generally of the elderly.  It affects one in 100 people over the age of 60.  Although people as young as 18 have been diagnosed with it.  Michael J. Fox is a well-known actor who was diagnosed with Parkinson’s disease while only 30.

Not everyone with Parkinson’s disease will develop dementia.  Typical symptoms of the disease include limb stiffness, speech problems and tremors.  Those individuals with dementia are likely to experience difficulty with reasoning, memory, speech and judgment.

There is no known cure for Parkinson’s.  Medications can control the symptoms but may lose their effectiveness over time.

Preventing dementia

As mentioned above, the types of dementias referred to in this article can’t be cured but some or all of the symptoms may be reversed or slowed.  While scientists often don’t know what causes specific types of dementia, they do recommend steps that may help.  These should be fairly recognizable as one of the mantras of doctors of any stripe is to “eat well, get enough sleep, exercise regularly, be social and reduce stress.” One rule of thumb is that “what is good for the heart is good for the brain.”  Staying active physically and mentally will contribute to a longer life with or without dementia so whether or not learning another language or taking up walking every day will keep the dementia doctor away, they are still reasonable precautions to take.  And while we don’t know what exactly will prevent dementia, we do know that habits such as smoking and heavy drinking and health problems such as high blood pressure and diabetes all contribute to the possibility of getting some form of dementia later on.

What to do if you or a loved one is diagnosed with dementia?

Support

Having dementia is hard.  It’s hard on the individual, it’s hard on the family and it’s especially hard on the caregiver especially if the caregiver is a member of the family.  During hard times people have a tendency to want to batten down the hatches and go into seclusion but it’s exactly the opposite that’s needed now.  Support groups exist for all of the above; family members, caregivers and for the individual with dementia.  There’s an expression about not re-inventing the wheel and that is especially relevant here.

You can for instance find support for early stage dementia that provides individuals a safe place to socialize and exchange ideas about coping with the diagnosis.  One side effect of being diagnosed with dementia is that a lot of people feel depressed and often feel isolated.  Having people to talk to and a place to go helps to combat that problem.

Being a caregiver is one of the hardest jobs you’ll ever have.  It takes both physical and emotional energy to handle watching a loved one as they enter each stage of the disease.  It’s important to get respite and support so that you can be at your best for the person you’re caring for.  That means having someone to talk to about what you are experiencing and sharing the load.  It means having dementia specific care management skills, keeping current with research and treatment options and dealing with loss and grief.  There are caregiver support groups listed with the Alzheimer’s Association that are specific to men, long-distance caregiving, adult child caregivers and more.  Research shows that caregivers are more at risk for health issues such as depression and emotional stress than the person they provide care for.  It also shows that the biggest reason people give for putting people into institutional care is caregiver burnout.  You owe it to yourself and the person you care for to be at your healthiest.

Family members, even young family members need to know what to expect with the progression of the disease.  They need to have a keen understanding about the help a caregiver may need so that they can step in and lend a hand and even if they are far away they need support for their own grieving process as they watch someone they love deteriorate.

Legal matters

Remember, at the beginning of this article, dementia was likened to the monster under the bed.  The point of an elder law attorney is to keep the monsters under the bed in check.  Obviously no attorney is going to cure dementia but there are steps early on in the diagnosis that need to be taken care of to help ensure that the individual with dementia has a say in how they’ll be cared for later on.  There are legal documents that need to be drawn up for long-term care planning, financial provisions and even funeral arrangements and having them in place can help relieve the mind of the individual so they can concentrate on enjoying the here and now.

Documents that should be taken care of early on include: Power of Attorney, Power of Attorney for Health, Living Will, Will, and Trust.