Family Caregiver Guide

What is dementia?

Dementia is an umbrella term used to describe a group of symptoms created by abnormal changes in the brain. Most diseases that precipitate the symptoms of dementia are generally progressive, meaning that the persons condition will worsen over time. Although Alzheimer’s disease (AD) is the most common cause of dementia and accounts for approximately 70% of all dementia diagnoses, some other causes of dementia, however, are treatable or reversible. In these circumstances, symptoms of dementia may be attributable to other medical conditions such as endocrine abnormalities (thyroid disease or vitamin B12 deficiency), vision or hearing loss (resulting in withdrawal or isolation), kidney failure, depression, stress, medication side effects or medication interactions, infections such as urinary tract infection (UTI), strokes, or tumors.

Dementia is not a normal part of the aging process, but the result of a disease resulting in physical damage to brain cells. The symptoms of dementia vary from person to person, but generally involve changes severe enough to affect a person’s daily life in at least some areas of: cognition (memory, thinking, language), behavior (mood, personality, social skills) and physical functioning (motor skills, personal care, visual field changes).

What is involved in receiving a diagnosis of dementia?

If a person is experiencing symptoms that affect his daily life, a diagnostic workup is recommended to determine the cause of those symptoms. The doctor, or team of doctors including a neurologist, psychiatrist, or psychologist will perform an evaluation which may include: family and medical history, a comprehensive physical exam, laboratory work, neuropsychological tests and scans of the head (MRI, PET or CT). A skilled team of doctors will analyze the information and provide a diagnosis with approximately 90% or better accuracy.

Why is a diagnosis recommended?

Knowledge is power. The diagnostic process can rule out other conditions that may be treatable, such as the reversible causes previously mentioned. An accurate diagnosis is critical in determining the best type of treatment. Certain types of dementia may require different treatment modalities. People with dementia (PWDs) and their families benefit from having a diagnosis because it gives a name to the difficulties PWDs are experiencing. It may help them to cope with the daily challenges and provide a reason to make the most of each day. An early diagnosis also gives PWDs the opportunity to participate in planning for their own future in terms of legal and financial decisions and medical advance directives.

What are the risk factors for developing dementia?

While we cannot currently prevent dementia, there are certain things that may increase or decrease our risk of developing the condition. It’s a subtle distinction but an important one in managing expectations of what is possible. There are some factors that have been associated with elevated dementia risk, including: including age, family history, genetics, race/ethnicity, head trauma, heart and vascular health.

How does dementia progress?

Dementia usually progresses. Diseases that cause dementia progress over time through early, middle, and late stage. In early stage someone may experience problems with short term memory loss, loss of initiative, problems with time and language difficulties. In the middle stage memory loss will increase, language comprehension will decrease, the person may have difficulty controlling their impulses. In the later stages, the person will require assistance to walk independently, have limited vocabulary, difficulties eating and require extensive physical care.

There is no “one-size-fits all” approach. Remember that every PWD is unique in terms of personality, personal history, and preferences, in addition to having different needs and abilities in early, middle, and late stages of the illness.

Can I still communicate with the person in the same way?
Communication will have to change. Changes in the brain of a person with dementia (PWD) will naturally effect the way they can communicate and interact with others. Caregivers often express frustration navigating these changes, not to mention coping with the emotional toll of losing the ability to communicate with their family member in the same way as before. It will take time to adjust to managing and shifting expectations. Caregivers often need significant support to release attachment to previous patterns of communication and develop a “go with the flow” attitude that is more beneficial for both the caregiver and the PWD.

Who can I go to for help?

No one can do this alone. As dementia progresses, caregivers will need to rely on a network of family, friends, and professionals for support. It is important for caregivers to be able to communicate their own needs and to ask for help. As always, CaringKind’s, 24-hour Helpline is available to provide caregivers with information and support at 646-744-2900, free of charge.

Download Family Caregiver guides here.

Previous Next