In the earliest stages of Alzheimer’s disease or dementia, a patient can go for years without getting diagnosed. While the brain compensates for changes brought on by dementia, a person may be completely unaware that there is a serious problem and that their brain cells are dying. Family members often realize after diagnosis that their loved one has been displaying concerning behaviors and symptoms like using poor judgment or withdrawing from social activities.
Memory problems and personality changes will eventually become pronounced and begin to affect your loved one’s quality of life. At this point, it is necessary to seek out the help of a medical professional. This article explains the steps involved in being diagnosed with dementia and what you can do for your loved one to support them during this process.
Diagnosing any form of dementia ranging from Alzheimer’s, Dementia with Lewy Bodies, Parkinson’s Disease Dementia is a multi-step process. It will involve primary care doctors, specialists, lab work, and scans. The amount of time it takes to be diagnosed with dementia can take up to a couple of years. It may be longer for people in the early stages because monitoring over six months or more is required to eliminate a possibility like normal age-related mild cognitive impairment.
We are going to call the first step in the process Step 0 because it’s optional. If you are worried about signs of possible dementia like short-term memory loss or an inability to focus, it’s probably best to go straight to Step 1 and make an appointment with a primary care doctor.
Early warning signs for dementia do not necessarily mean dementia is present. Symptoms like difficulty focusing and memory trouble might be caused by stress, lack of sleep, or normal aging. If you’re not sure if a doctor’s appointment is necessary or would like to take a test in advance of an appointment, try one of these tests that can be taken quickly at home:
• The Clock Drawing Test (CDT): Draw a clock whose time shows “10 past 11.” Numerous aspects of thinking are tested, including spatial awareness and the ability to use complex thinking that turns the spoken “10” into a hand pointed toward 2. Someone who is developing dementia will struggle with this task. For more information, including step-by-step instructions, click here.
• The Modified Clinical Dementia Rating (CDR): This test is of greater value when taken periodically and results can be compared. However, it is fast, free, and easy to administer and an online version is available on our website. The test is taken by someone familiar with the individual suspected of having dementia, not by the individual.
• The Mini-Cog: A combination of the CDT and a basic three-word recall, the Mini-Cog takes less than 10 minutes and is easy to take or administer to a loved one. It begins with the test-taker reading three words aloud, then drawing a clock, then recalling the three words. Click here for more information.
• The Self-Administered Gerocognitive Exam: This is a brief, multipart test (it takes about 10 minutes) that includes the CDT but also asks simple math and language questions. Studies have found that the SAGE is highly (about 95 percent) accurate in predicting whether someone has dementia. The test is easy to print out so you can take it yourself or administer it to a loved one. For a link with detailed instructions click here.
Other tests (like the Mini-Mental State Exam and the Montreal Cognitive Assessment) can determine whether a person needs to be examined for potential dementia. However, these tests require professional administration and grading and are not meant to be administered at home. The MMSE or MoCA will probably be part of the steps toward diagnosis detailed below.
This is where you make an appointment with a primary care doctor, someone you or your loved one is hopefully comfortable with. Before that appointment, however, you need to get some information. The more you can tell the doctor about your loved one’s behavior, health, level of functioning, and any recent changes overall, the better. Make a list with the information below. Enlisting your loved one, and others, to help you prepare ahead of time enables an accurate diagnosis.
● Medications: Prescription drugs, over-the-counter medications, and supplements your loved one is taking. Note information including the name, dosage, and instructions for use (like “take in the morning”) for each drug and supplement.
● Health problems: Any recent changes in the health of your loved one, as well as any significant medical issues.
● Behavior changes: Any recent changes in the behavior of your loved one, as well as any unusual past behaviors.
● Personality changes: Changes including depression, irritability, or mood swings.
● Nutritional and diet patterns, including alcohol use and frequency.
It is also important that you look closely at how well your loved one can perform Activities of Daily Living (ADLs) and Independent Activities of Daily Living (IADLs). A person’s ability to do these things is how healthcare professionals determine the type and stage of dementia.
Instrumental Activities of Daily Living are activities we perform from day to day that are important, but not as basic to self-care as Activities of Daily Living (ADLs). Pay attention to how well your loved one performs these IADLs. Having this information at the time of diagnosis could save time:
● Managing money: Writing checks, handling cash, maintaining a budget.
● Managing medications: Taking the appropriate dose of medication at the right time.
● Cooking: Preparing meals or snacks; microwave/stove usage.
● Housekeeping: Performing light and heavy chores such as dusting or mowing the lawn.
● Using appliances: Using the telephone, microwave, or vacuum appropriately.
● Shopping: Purchasing; discerning between items.
● Extracurricular activities: Maintaining a hobby or other pastimes.
Your primary care doctor will ask questions and run you through some tests that can be handled in an office setting. This is a regular appointment that shouldn’t take more than an hour, and will probably include the following:
• Medical history: The doctor will want to know the patient’s symptoms (including details about the activities of daily living), present and past health problems, psychiatric issues, medications, and family history of diseases.
• Physical examination: A physical exam helps rule out other conditions, such as thyroid problems and side effects of medications, that may cause symptoms similar to dementia. Hearing, vision, blood pressure, reflexes, heart rate, and other health information will be recorded.
• Mental abilities test: This will probably be a pen-and-paper test like the Mini-Mental State Exam, which is 30 questions and takes about 10 minutes. The doctor will want to know how well the brain can remember basic details like the date and place, and whether simple math and language problems are too difficult.
It’s also likely that laboratory work like blood and urine collection will be done at this phase of the diagnosing process, to determine blood count and rule out vitamin deficiencies, infections, diabetes, or low hormone levels as causes for symptoms. Having completed lab work also makes the specialist appointment go smoother because this important information will have been noted already. The lab work takes less than a week, but it is very unlikely a primary care doctor will provide the individual or their family members with a definitive diagnosis. If the doctor suspects dementia, the next step will be a referral to a specialist.
If your primary care doctor rules out other medical issues and believes dementia may be causing problems thinking, a referral to a specialist is likely. Unfortunately, it is not unusual for it to take weeks to receive an appointment with the specialist. The appointment itself will probably take more than an hour, especially if brain scans are requested.
The specialist to which you will be referred will be one of the following three types of doctors:
• A psychiatrist who specializes in mental health
• A geriatrician who specializes in illnesses affecting older people
• A neurologist who specializes in illnesses in the brain and nervous system
Specialists often work in teams with other healthcare professionals who also help people who might have dementia. These teams could include psychiatric nurses, psychologists (specializing in mental-health therapy), occupational therapists, and social workers who can connect you with programs that help manage symptoms and issues related to illness.
When meeting with a specialist, some of the same information you provided to the primary care doctor will need to be repeated. These steps will be more comprehensive, however, including:
• Medical history: A specialist will want to know symptoms, any history of health issues, a list of medications, and family medical details. The specialist may also want to interview a caregiver or loved one to get more details.
• Physical examination: Probably the same checks to make sure other issues, including stroke or Parkinson’s disease, aren’t causing symptoms. The specialist may have ways of checking reflexes, eye movements, hearing, etc., that provide more information.
• Mental abilities tests: Even if your primary care doctor gave you a pen-and-paper test to measure thinking ability, a specialist might want you to repeat the test or take others. There are multiple kinds of these tests (see above) and they can provide details about cognition (thinking ability) while establishing a baseline to compare against later.
It is possible that the meeting with the specialist, described above, will include brain scans, but they may also be scheduled for a later date. If so, getting the scans should not take more than a week or two. These examinations might be stressful or even frightening. If you or your loved one are concerned about this phase—which includes holding still for long periods while the brain is scanned, or further lab work like a spinal tap—the specialist should be able to refer you to a counselor who can help make the process easier.
These are the types of brain scans that might be part of a diagnosis:
• Computerized Tomography: A CT scan is an X-ray of the brain that shows tissues and structures that may have changed.
• Magnetic Resonance Imaging: An MRI uses magnetic fields and radio waves to create a detailed image of the brain, without the radiation of a CT scan.
• Positron Emission Tomography: A PET scan uses radioactive tracers inserted through the blood to make images showing brain activity.
A spinal tap may also be part of the diagnosis, though this is less common than brain scans. If doctors suspect a particular kind of dementia called Normal Pressure Hydrocephalus (NPH), which is caused by excessive spinal fluid in the brain, they will probably order a spinal tap.
However, spinal taps are also used by some specialists to diagnose more common dementias including Alzheimer’s. In a spinal tap, cerebrospinal fluid is drawn through a needle inserted between bones (vertebrae) in the spine. The proteins that build up in the brains of people with Alzheimer’s, called tau and amyloid, are detectable in cerebrospinal fluid. This procedure is not a common part of diagnosis, but your specialist may order it to detect dementia.
Once diagnostic testing has been completed, the specialist will review all information (medical history, physical, neurological, mental status, laboratory exams, and brain scans) to make a diagnosis. For many forms of dementia, the doctor can’t say that someone “definitely” has a particular type of dementia. This is because making a definitive diagnosis of many forms of dementia is only possible when an autopsy is performed to confirm the presence of damage or abnormal proteins in the brain.
However, the doctor can provide you with a diagnosis of probable or possible dementia. For a person with symptoms of Alzheimer’s disease, the doctor may arrive at one of two conclusions:
● Probable Alzheimer’s disease: If the physical exam and test results match the criteria for diagnosis.
● Possible Alzheimer’s disease: If the results demonstrate that the person has dementia, it may differ from that of typical AD or be caused by another disease other than AD.
A person who is just starting to show small signs of dementia and does not display enough symptoms for a diagnosis of Alzheimer’s disease may be given a diagnosis of mild cognitive impairment.
If you have another less-common form of dementia, like frontotemporal dementia or vascular dementia, the specialist should be able to tell you that as well, based on the information collected over the process of diagnosis.
After diagnosis, your physician will talk to you about the best treatment plan. While there is no cure for Alzheimer’s disease or most forms of dementia, treatment may help slow the progression of the disease and improve daily functioning. Managing symptoms with the right treatment can give your loved one a shot at continuing to thrive despite the disease.
While several evaluations and tests go into a diagnosis of dementia, it is generally not a fast process. Depending on the type of dementia, Alzheimer’s, Vascular, Dementia with Lewy Bodies, or Parkinson’s Disease Dementia it can typically take anywhere from a couple of months to a couple of years to get a diagnosis. That is because one must go to multiple doctor visits and do a variety of invasive and noninvasive tests that can range from brain scans to blood tests and physiological evaluations. The main reason that there is no set time frame for a diagnosis is that each person’s health history and symptoms are different along with where they are located in the United States. That means the type of dementia, the stage that the patient is in, the symptoms they are displaying, and the availability of medical resources all factor into the time it takes to get diagnosed.
One of the largest reasons a diagnosis can take so long is the lack of easy access to doctors. Currently, there is a shortage of neurologists. The population in the United States is aging and that can be seen across the board from patients to retiring medical professionals. A larger percentage of the population who are getting older and that is impacting the medical field by having larger wait times and limited availability for patients. Aging populations lead to more people needing specialized services with fewer medical professionals who can attend to them. With an increase in chronic neurological disorders including dementia, more people are trying to be seen by a specialist. That means that an overall decrease in specialists and an increase in patients has created a gap in the medical field making the diagnostic process frustrating and even inconclusive at times.
The time around your loved one’s diagnosis can be a scary time and some are reluctant to see a doctor because there’s no cure for dementia. There are treatment options (including non-drug intervention) that are highly effective for managing symptoms and improving quality of life. It is also important to get all possible questions answered and to prepare for the life changes that come as the disease progresses. Doctors and other medical professionals can help with things like:
● Improvements to make one’s home safer
● Establishing routines
● Utilizing and finding community services and resources
● Participating in clinical trials
Financial planning for at-home or residential care may be necessary and early diagnosis has been found to save money. The bottom line is that knowing about your loved one’s health is crucial. Do not put off addressing a potential dementia diagnosis and seek the advice of a medical professional.