You or someone you know just received a diagnosis of dementia. Hopefully you got a more specific diagnosis, such as Alzheimer’s disease (AD), vascular dementia, etc. But you likely heard many other new terms thrown out during the meeting with the doctor. Perhaps you attended a new support group and they were talking about “ALTCS”, “stages of dementia” or “memory care” and you start to feel overwhelmed. This article will define some of the most common terms you are likely to hear. Let’s begin from the first visit with the medical provider.
Generally when a diagnosis is made, the person with memory and thinking problems (also called cognitive changes or impairment) will see a specialist. A neurologist (specializing in problems of the nervous system), geriatric psychiatrist (specializing in problems with mood, memory and/or behavior) or geriatrician (specializing in care of older adults) are the main medical specialists for dementia. However, primary care physicians can also make the diagnosis. A family member or friend (often called an “informant”) should be present for this appointment as people with memory and thinking problems may not be able to fully report or even appreciate the cognitive changes that are occurring. In addition to a thorough social history, a medical and neurological examination will take place. Cognitive testing is done to identify possible changes in brain function. Common cognitive tests include the Mini Mental State Examination (MMSE) and/or Montreal Cognitive Assessment (MoCA). Each of these tests have a total score of 30 points. Scores above 27 on the MMSE or above 25 of the MoCA are generally considered normal. However, there are many other assessments that can be used as well. All of these tests look at cognitive domains; i.e. different parts of brain function. They usually include measures of:
Sometimes these tests are not conclusive in making a diagnosis so the physician will order neuropsychological testing. This is detailed testing takes another 2 – 4 hours to look more carefully at the various cognitive domains, adjusting for the person’s age, gender, and years of education. A neuropsychologist who specializes in testing and interpretation will generally administer the tests in a quiet location allowing for breaks. Neuropsychological testing is used most often in those with unusual presentations or mild cognitive impairment (MCI). People with MCI have complaints of memory and thinking issues but are still functioning at a normal levels, therefore are not considered to have dementia. However, many are at risk for developing AD in future years.
The physician is also likely to inquire about the person’s functional status which is their ability to independently take care of work, household chores and personal care. Instrumental activities of daily living (IADL) is a term used to measure ability to manage chores in and around the home such as shopping, cooking, cleaning, managing money, etc. Activities of daily living (ADL) is a term used to describe the ability to groom, bathe, dress, toilet, and feed self. These are important tasks to measure as they often relate to changes in the brain due to cognitive impairment.
Brain imaging is another important part of the dementia evaluation. Most individuals will get a magnetic resonance image (MRI) or a computerized tomography (CT) scan. The MRI uses magnets to gather a sharper image of the brain and is usually preferred over a CT scan. On occasion, the physician may order a positron emission tomography (PET) scan which uses a radioactive or glucose (sugar) tracer to measure brain activity. PET scans are not typically covered by insurance so they are utilized primarily to differentiate specific types of dementia. However, PET scans are being used quite frequently in AD clinical trials as they can measure the amount of beta amyloid (an abnormal protein that occurs in AD) and is considered a common biomarker (a measure of AD in the brain).
Laboratory studies are done to make sure that there are no other medical reasons that are contributing to cognitive changes. On occasion, genetic testing for AD or Frontotemporal Dementia (FTD) may be recommended. Ideally, these individuals will meet with a genetic counselor to understand what the tests mean. In AD, a gene called APOE 4 is associated with late onset (after age 65) Alzheimer’s disease. Those carrying 2 copies of the APOE 4 (one gene inherited from mother; one gene inherited from father) have the highest risk for developing late onset AD. New studies in AD are beginning to focus on individuals who carry 2 copies of the APOE 4 genes also referred to as homozygotes.
After a thorough social, medical and neurological exam, the physician will look at the results of cognitive testing, brain imaging and lab results and put the pieces together to determine that a dementia is present. Dementia means that there are substantiated changes in memory and thinking abilities that are interfering with a person’s independence in everyday life activities. The next step in the process is determining what type of dementia is present. Here are the most common types of dementia that you are likely to hear about (but understand that there are many other less common types).
Generally after the diagnosis is made, you are likely to hear what stage of illness the person is in. While there are a number of different ways to stage AD, keeping it simple is usually best. That is:
We refer to those living with dementia as a person with dementia (PWD) rather than a “patient.” We want to recognize the individual, along with their unique abilities, interests and self v. focusing solely on the illness. PWD need partners in care to work around the obstacles created by the illness, thus we often refer to care partners as those who will assist the PWD in the mild stages. By the moderate stage, care partners transition to caregivers as more assistance and hands on care is needed by the PWD. We recommend that the PWD get enrolled in the Medic Alert/Safe Return program through the Alzheimer’s Association. This medical ID is very helpful should the PWD ever become lost or separated from the caregiver. An ID is also encouraged for the caregiver, should an emergent situation arise, this would alert emergency personnel that a PWD may be alone at home.
We highly recommend that caregivers get connected to others. Support groups provide a group setting for caregivers to come together, share concerns, get educated and find valuable resources. In the mild stage, many couples will benefit from “Partner Support Groups.” Those caring for someone with FTD or LBD may benefit from a specialty group due to the many different issues that arise. Likewise, spousal caregivers, men and adult children all have unique needs and may seek out such a group. While BAI and BSHRI provide many specialty groups, the Alzheimer’s Association provides an even greater network of support groups. We recommend that caregivers take time to find the group that suits their unique needs. It may take some time but it will be well worth it.
In summary, there is a lot of “dementia jargon” used when a diagnosis is made and as the disease progresses. We encourage you to ask questions when terms are used.