People in the earliest stages of Alzheimer’s disease, or related dementia, can go for years without getting diagnosed. For a while, the brain compensates for changes brought on by dementia, and a person may be completely unaware that their brain cells are dying. Family members often realize after diagnosis that their loved one has been displaying concerning behaviors, like using poor judgement or withdrawing from social activities, for many years.
Memory problems or changes in personality will eventually become so pronounced that you need to make an appointment with a primary care doctor; you don’t know what the problem is yet, but something is definitely wrong. This article explains the steps involved in being diagnosed with a specific dementia, including what to do before and after that fateful appointment.
Diagnosing dementia, be it from Alzheimer’s, Dementia with Lewy Bodies, Parkinson’s Disease Dementia or any other root cause, 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 is between one and four months. For people in early stages it may be longer, because monitoring over six months or more is required to eliminate a possibility like normal age-related mild cognitive impairment.
We’re 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 don’t 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 on a periodic basis and results can be compared. However, it is fast, free, 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 themselves.
• 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 being read three words aloud, then drawing a clock, then recalling the three words.
• 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. Simply print the test to take or administer in a comfortable room with minimal distractions. For links and detailed instructions, click here.
There are other tests (the Mini-Mental State Exam and the Montreal Cognitive Assessment for example) that can determine whether a person needs to be examined for potential dementia. These tests require professional administration and grading, however, 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 (i.e. “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’s 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 type and stage of dementia.
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 like the ADLs listed above), 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 will 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 4 – 6 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 ones 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, it should not take more than a week or two to get the scans. 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 of time while the brain is scanned, or further lab work like a spinal tap—the specialist should be able to refer you to a counsellor 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 as another means of detecting 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, it is not possible for the doctor to 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 (after death) 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, but 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. There is not a cure for Alzheimer’s disease or most forms of dementia, but 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.
This can be a scary time, and some are reluctant to see a doctor because the news may be bad and there’s no cure for dementia anyway. But remember that treatment (including non-drug intervention) is highly effective for managing symptoms. It is also important to get all possible questions answered, and to prepare for the life changes that come as the disease advances. Doctors and other advisers can help with things like making the home safer, establishing routines, utilizing community services and resources, and possibly participating in clinical trials. Financial planning for at-home or residential care may be necessary. (Early diagnosis has been found to save money.)
Bottom line: Knowing is crucial. Do not put off addressing this serious situation.