Dementia: Is This Dementia and What Does It Mean?

By Family Caregiver Alliance in collaboration with Jean Coleman, R.N., M.S., N.P.; Carole Bibeau, R.N., M.S.; Cynthia Barton, RN, M.S.; Jennifer Merrilees, RN, M.S., and Helen Davies, RN, M.S.. Reviewed by William Jagust, M.D.

What comes to mind when you hear someone has dementia?

For many people, the term carries with it frightening associations.

In fact, dementia is a group of symptoms, personality changes, or unusual behavior. These can include:

short-term memory loss

confusion

inability to problem-solve

inability to complete multi-step activities (preparing a meal, or balancing a checkbook)

Saying that someone has dementia recognizes these changes in the person, but it says nothing about why they have these symptoms. It doesn’t explain the cause.

Memory and aging

Does any loss of memory signify dementia? Isn’t memory loss a normal part of aging — something we should all expect?

Acknowledging memory changes in a friend or family member can be difficult. It’s not uncommon to claim it’s a normal part of aging as a way to minimize what it may mean to your family. In truth, we know that serious memory loss is not a normal part of aging, and none of us should ignore or downplay it.

For some of us, the tendency may be to the other extreme — jumping to the conclusion that the friend or family member has Alzheimer’s disease. Sometimes (but not always), it is Alzheimer’s.

But other conditions share those symptoms. They also cause memory and cognitive problems that interfere with daily activities. Some affect younger as well as older people.

Some reversible, others not

Certain conditions can cause reversible dementias. Medication interactions, depression, vitamin deficiencies, and thyroid abnormalities all can cause temporary bouts of dementia or delirium. Luckily, with early identification, the appropriate treatment can actually reverse these cases.

Irreversible dementias are degenerative, and Alzheimer’s disease is the most common. Other degenerative dementias may look like Alzheimer’s, but they have distinct features that need special attention and a variety of treatments.

With the many causes of dementia — and each one’s respective treatment – we can see why a clear and timely diagnosis is critical.

How is dementia diagnosed?

The diagnosis of dementia requires a complete medical and neuropsychological evaluation. The process first determines whether the person has a cognitive problem and how severe it is. After diagnosis and uncovering the cause, the doctor can recommend treatment. And patients and caregivers can plan for the future.

A medical evaluation for dementia usually has several parts.

Review of history or onset of symptoms

Clinicians may ask you or the person you care for questions such as:

What problems have you observed or identified?

In what order did these changes happen?

How long have the symptoms been present?

How is this affecting the person’s ability to function in daily life?

The patient may be unable to recall the sequence of events or severity of the problem. That’s why a caregiver or someone who knows the individual must go with the patient and provide this information to the care team.

Medical history and medications

Medical history details may identify increased risk for a particular type of dementia. A review of medications helps clinicians flag specific drugs or drug interactions that can contribute to cognitive problems. Again, it’s crucial that someone who can accurately provide this information be with the individual during the appointment.

Neurological exam

Neurological exams look for symptoms that may indicate specific kinds of dementia or other conditions, such as stroke or Parkinson’s disease, that have an increased risk of cognitive problems.

Laboratory tests

Your physician will want to rule out a possible vitamin deficiency, infection, or hormone imbalance – all of which can cause cognitive symptoms. Examples of these include:

Thyroid imbalances

Vitamin B12 deficiency

Syphilis

Common chronic conditions like high cholesterol and high blood pressure put a person at risk of developing dementia. The doctor may order other lab tests to screen for this risk.

Brain imaging

A CT scan or MRI evaluates the anatomy of the brain for conditions that might cause cognitive changes, such as a brain tumor or stroke. The imaging tests can also serve as a starting point or historical reference for brain size and blood vessel changes monitored over time.

Mental status testing

Also known as neuropsychological exams, these pencil-and-paper questionnaires test many areas of cognition:

Memory

Language

Problem-solving

Judgment

The care team compares the test results with those of patients with similar age, education, and ethnicity. That helps identify the relative frequency and severity of the issues experienced.

Diagnosis guides treatment

The process of diagnosing dementia has become more accurate in recent years. Specialists analyze data collected and determine whether there is a problem, how advanced it is, and often the cause of the dementia.

Whether the cause is a reversible or irreversible condition guides the treatment and care plan for your friend or family member.

A clear diagnosis is imperative.

What are reversible dementias?

In elderly people, a variety of diseases and disorders can cause cognitive functioning to deteriorate. An illness or a reaction to medication may cause a change in mental status. These are sometimes called “pseudodementias.” A medical evaluation may determine if a dementia is reversible or treatable.

Conditions and circumstances can cause reversible symptoms of dementia:

Reactions to medications

One common reason older people experience dementia-like symptoms is an adverse drug reaction.

The physician should monitor all medications, prescriptions, over-the-counter remedies, and herbal supplements to reduce possible side effects.

Endocrine abnormalities

Low or high thyroid levels, parathyroid disturbances, or adrenal abnormalities all can cause confusion that can resemble dementia.

Metabolic disturbances

Renal and liver failure, electrolyte imbalances (blood chemistry levels), hypoglycemia (low blood sugar), hypercalcemia (high calcium), and diseases of the liver and pancreas — they all can cause confusion and changes to appetite, sleep, and emotions.

Emotional distress

Depression or major life changes such as retirement, divorce, or loss of a friend or family member can affect one’s physical and mental health.

It’s important to inform the physician about major life events that could cause stress.

Vision and hearing

Undetected problems of vision or hearing may result in inappropriate responses — and could be misinterpreted.

The care team should perform hearing and eye exams to identify any issues.

Infections

Confusion can be a symptom of an infection.

Bring any signs of confusion to the attention of the physician.

Nutritional deficiencies

Deficiencies of B vitamins (folate, niacin, riboflavin, and thiamine) can produce cognitive impairment.

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What about degenerative, or irreversible, dementias?

If diagnostics rule out reversible dementias and the care team determines that the person has a degenerative or irreversible dementia, it is important that families and medical personnel seek the cause of the problem.

This helps ensure the person affected receives proper medical care. It also enables families to plan their caregiving and find support and resources.

Here are the most common degenerative dementias:

Alzheimer’s disease

Alzheimer’s disease is the most common cause of dementia in people over 65, although it also occurs in people much younger. Alzheimer’s affects approximately 35 percent of those over 85.

Presently, researchers cannot definitely say what causes the disease, and there is no cure.

Symptoms differ from person to person, but declines in memory, thinking, and ability to function progress over a period of years, ending in a severe loss of function.

Ischemic vascular dementia (IVD)

IVD is the second most common dementia.

It’s characterized by either an abrupt loss of function or a general slowing of cognitive abilities that interferes with “executive functions,” such as planning and completing tasks.

When symptoms appear suddenly, the person has usually had a stroke.

For others, the condition develops slowly with a gradual loss of function and/or thinking.

Dementia with Lewy bodies (DLB)

Dementia with Lewy bodies is a progressive degenerative disease.

It shares symptoms with Alzheimer’s and Parkinson’s.

People affected by this disease have behavioral and memory symptoms that can fluctuate, as well as motor problems commonly seen with Parkinson’s disease.

Common symptoms include sleep disturbances during REM sleep and hallucinations.

Frontotemporal dementia (FTD)

FTD is a degenerative condition of the front (anterior) part of the brain, which can sometimes be seen on brain scans.

The frontal and anterior temporal lobes of the brain control reasoning, personality, movement, speech, language, social graces, and some aspects of memory. Symptoms may lead to misdiagnosis as a psychological or emotionally based problem.

FTD frequently occurs after age 40 and usually before age 65.

Symptoms appear in two seemingly opposite ways: Some individuals are overactive, restless, distracted, and disinhibited (showing poor social judgment); others become apathetic, inert, and have limited range of emotions.

Creutzfeldt-Jakob disease

Creutzfeldt-Jakob disease (CJD or Jakob-Creutzfeldt disease) is a rapidly progressive, fatal brain disease.

It is part of a family of diseases, called transmissible spongiform encephalopathies, that are caused by an agent known as a prion (“pree-on”).

This condition can be very difficult to diagnose as it has many different symptoms, including behavioral changes, movement changes, cognitive changes, and general changes in well-being such as sleep problems, loss of appetite, and headaches.

Parkinson’s dementia

“Parkinsonism” is the name given to a collection of symptoms consisting of tremor, stiffness, slowness of movement, and unsteady gait.

Many neurological disorders have features of parkinsonism, including several of the dementias.

When parkinsonism occurs without any other neurological abnormalities, and there is no recognizable cause, the disorder is called Parkinson’s disease after the English physician who first described it in 1817.

Progressive supranuclear palsy (PSP)

People with PSP usually show a group of three symptoms: Gradual loss of balance and trouble walking; loss of control of voluntary eye movements; and dementia.

Although experts consider these three symptoms to be the hallmarks of PSP, patients with this disorder also experience other symptoms common to degenerative diseases of the brain. These include difficulties with movement, speech and swallowing, as well as changes in behavior.

In part because it is relatively rare, PSP is often misdiagnosed as Parkinson’s disease. But its treatment response and clinical symptoms are different, so an accurate diagnosis is vital.

Normal pressure hydrocephalus (NPH)

Gait instability, urinary incontinence, and dementia are the signs and symptoms typically found in patients with NPH.

Considered a rare cause of dementia, it affects persons older than 60 years.

The precise incidence of NPH is hard to determine, because the condition does not have a formal, agreed-upon definition.

Some physicians base the diagnosis on radiographic evidence (CT or MRI, for example); other health care professionals rely more on clinical indications. Still others use a combination of signs and symptoms that they have found to be reliable.

Traditionally, treatment is surgical implantation of a shunt to reduce the pressure caused by the buildup of cerebrospinal fluid.

Huntington’s disease (HD)

Huntington’s disease is a fatal disorder characterized by involuntary movements (chorea) and cognitive decline (dementia).

It’s caused by a genetic mutation that can be passed down in families.

HD is an illness with profound neurological and psychiatric features affecting structures deep within the brain — particularly the basal ganglia, responsible for movement and coordination. Structures responsible for thought, perception, and memory are also affected. This is likely due to connections from the basal ganglia to the frontal lobe of the brain.

As a result, patients may experience uncontrolled movements (such as twisting and turning), loss of intellectual abilities, and emotional and behavior disturbances.

Mixed dementias

At times, two of these conditions can overlap. This is commonly seen in Alzheimer’s disease and vascular dementia, as well as in Alzheimer’s disease and Lewy bodies dementia.

Medical Treatment for Dementia

There are no cures for degenerative or irreversible dementias. For that reason, medical treatments focus on maximizing the individual’s cognitive and functional abilities.

Specific treatments vary depending on the cause of the dementia:

For patients with Alzheimer’s disease and Lewy body disease, medications called cholinesterase inhibitors are available. They can temporarily improve symptoms by boosting chemicals involved in memory and judgment. Another medication is memantine, which may temporarily improve symptoms by decreasing abnormal activity in the brain. New medications are being developed and studied, and may be approved by the FDA. They may be restricted to people in early stages of dementia or only available for those participating in clinical trials. A neurologist can help determine if these are appropriate and to evaluate the risks and benefits.

Treatment for vascular dementia focuses on controlling risk factors such as high blood pressure and high cholesterol.

Before a doctor would consider prescribing other medications to manage symptoms (e.g., sleep disorders, movement problems, depression, or agitation), they would need to have careful conversations about risk and benefit with the patient, their caregiver, and family. Moreover, behavioral interventions and non-pharmacological interventions would need to be tried first.

Treatments vary based on the cause. Depending on the dementia type certain medications are contraindicated – and can actually make symptoms worse. For these reasons, an accurate diagnosis is critical.

Research into the causes and treatments for dementias continues at a rapid pace. We all look forward to new developments that someday may postpone, cure, or even prevent these debilitating disorders.

Communicating About Dementia with Health Care Providers

Good communication with the primary care provider or neurologist affects the well-being of the person with dementia as well as the caregiver.

Communicating your concerns and describing the changes you have observed will guide the provider to investigate. In some cases, you may find yourself “educating” medical staff about the symptoms of the person you care for.

It is important that your concerns are taken seriously, and you are treated with respect and dignity.

If you are not receiving the attention you feel is needed, communicate your concerns to the provider. Request a referral to a resource in the community specializing in the evaluation of people with cognitive conditions. The goal is to establish a partnership to maintain the person with dementia’s the quality of health and to solve problems that arise. For more information, see FCA’s “Pathways to Effective Communication for Healthcare Providers and Caregivers”: https://www.caregiver.org/resource/pathways-effective-communication-healthcare-providers-and-caregivers/.

What exactly is the role of a caregiver?

Connect with the care team

Establish a good working relationship with the primary care physician. It helps ensure good care and ongoing support.

Be present during the comprehensive medical workup that rules out treatable conditions and provides information on current status. Doing so offers a foundation for care planning, now and in the future.

Expand knowledge and skills

An accurate diagnosis begins a process of education for caregivers and families so that needs can be met, and resources are located and put to use. Irreversible dementia requires a level of care that increases as the disease progresses. Through education and the use of available resources, families can learn new skills to handle shifting care needs.

Safety-proofing the home, learning behavior management techniques, and addressing legal and financial matters are important steps families can take to manage dementia, and resources are available to help. Many caregiver support groups—including some on the Internet—offer emotional and practical support. Caregivers may need to educate themselves about long-term care and reach out in their communities to find the help they need. The list of resources below offers more information on where to start looking for help.

Family matters and decisions

Every family is different. Whether care for someone with dementia is provided at home, in an assisted living center, an Alzheimer’s special care unit, or in a nursing home depends on family resources and patient needs. While placement in a facility is not uncommon in later stages of dementia, every family approaches the caregiving experience in a way that is best for them.

Many families provide care at home for a person with dementia. While this can be an enriching and rewarding experience, it can also be stressful. Studies have shown that caring for someone with a brain-impairing disorder can be more stressful than caring for someone with a physical impairment. It’s essential that caregivers take the time to care for themselves physically and emotionally.

Care for the caregiver

Support and help are very important throughout the months or years you are a caregiver. You will need respite from time to time—a break from caregiving demands. Help from friends, other family members, or community agencies is invaluable so that you can continue to provide good care without becoming exhausted, frustrated, or simply burned out.

This is overwhelming. Is help available?

Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org
FCA CareJourney: www.fca.cacrc.org
Caregiver Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s, and other debilitating brain disorders that strike adults.