What Should I Expect Down the Road?
Every form of dementia has a somewhat unique set of symptoms, and each person experiences the symptoms a little differently. There are some symptoms that are primarily associated with certain dementias. It might be years before you develop these symptoms, or they might be mild at first but then gradually get worse.
Health professionals sometimes discuss dementia in “stages,” which refers to how far a person’s dementia has progressed. Defining a person’s disease stage helps physicians determine the best treatment approach and aids communication between health providers and caregivers. Sometimes the stage is simply referred to as “early stage”, “middle stage” or “late-stage” dementia, but often a more exact stage is assigned, based on a person’s symptoms. This article discusses three scales that use stages.
1) Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS)
The most common scale is often referred to simply as GDS or by its more formal name the Reisberg Scale. The GDS divides the disease process into seven stages based on the amount of cognitive decline. This test is most relevant for people who have Alzheimer’s disease, since some other types of dementia (i.e. frontotemporal dementia) do not always include memory loss.DiagnosisStageSigns and SymptomsNo DementiaStage 1: No Cognitive DeclineIn this stage the person functions normally, has no memory loss, and is mentally healthy. People with NO dementia would be considered to be in Stage 1.No DementiaStage 2: Very Mild Cognitive DeclineThis stage is used to describe normal forgetfulness associated with aging; for example, forgetfulness of names and where familiar objects were left. Symptoms are not evident to loved ones or the physician.No DementiaStage 3: Mild Cognitive DeclineThis stage includes increased forgetfulness, slight difficulty concentrating, decreased work performance. People may get lost more often or have difficulty finding the right words. At this stage, a person’s loved ones will begin to notice a cognitive decline. Average duration: 7 years before onset of dementiaEarly-stageStage 4: Moderate Cognitive DeclineThis stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 yearsMid-StageStage 5: Moderately Severe Cognitive DeclinePeople in this stage have major memory deficiencies and need some assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss is more prominent and may include major relevant aspects of current lives; for example, people may not remember their address or phone number and may not know the time or day or where they are. Average duration: 1.5 yearsMid-StageStage 6: Severe Cognitive Decline (Middle Dementia)People in Stage 6 require extensive assistance to carry out daily activities. They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. They also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur. Average duration: 2.5 yearsLate-StageStage 7: Very Severe Cognitive Decline (Late Dementia)People in this stage have essentially no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills, for example, the ability to walk. Average duration: 2.5 years
(Reisberg, et al., 1982; DeLeon and Reisberg, 1999)
2) Functional Assessment Staging (FAST)
The second scale is called the Functional Assessment Staging Test or by the acronym FAST. FAST also employs a seven-stage system based on level of functioning and daily activities. However, FAST focuses more on an individual’s level of functioning and activities of daily living versus cognitive decline. Note: A person may be at a different stage cognitively (GDS stage) and functionally (FAST stage).Functional Assessment Staging (FAST)Stage 1 — Normal adult No functional declineStage 2 — Normal older adult Personal awareness of some functional decline.Stage 3 — Early Alzheimer’s disease Noticeable deficits in demanding job situations.Stage 4 — Mild Alzheimer’s Requires assistance in complicated tasks such as handling finances, planning parties, etc.Stage 5 — Moderate Alzheimer’s Requires assistance in choosing proper attire.Stage 6 — Moderately severe Alzheimer’s Requires assistance dressing, bathing, and toileting. Experiences urinary and fecal incontinence.Stage 7 — Severe Alzheimer’s Speech ability declines to about a half-dozen intelligible words. Progressive loss of abilities to walk, sit up, smile, and hold head up. (Reisberg, et al., 1988)
3) Clinical Dementia Rating (CDR)
The Clinical Dementia Rating (CDR) scale uses a five-stage system based on cognitive (thinking) abilities and the individual’s ability to function. This scale is more commonly used in dementia research and less so as a communication tool between medical professionals and patients and their families. This is the most widely used staging system in dementia research. Here, the person with suspected dementia is evaluated by a health professional in six areas: memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care and one of five possible stages is assigned.Clinical Dementia Rating (CDR) ScaleCDR-0 — No dementiaCDR-0.5 — Mild Memory problems are slight but consistent; some difficulties with time and problem solving; daily life slightly impairedCDR-1 Mild Memory loss moderate, especially for recent events, and interferes with daily activities. Moderate difficulty with solving problems; cannot function independently at community affairs; difficulty with daily activities and hobbies, especially complex ones.CDR-2 — Moderate More profound memory loss, only retaining highly learned material; disoriented with respect to time and place; lacking good judgment and difficulty handling problems; little or no independent function at home; can only do simple chores and has few interests.CDR-3 — Severe Severe memory loss; not oriented with respect to time or place; no judgment or problem solving abilities; cannot participate in community affairs outside the home; requires help with all tasks of daily living and requires help with most personal care. Often incontinent.
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