An individual patient's progress with dementia will depend on many factors - the type of dementia, the age of onset, the presence of other illnesses, the level of support and care available, and so on. Each patient's course will be unique, and what happens to one patient will not necessarily happen to another.
Doctors traditionally divide up the stages of dementia into three - mild moderate and severe - and the categories overlap considerably. There are no good and consistent criteria that allow a patient to be placed in a category with precision. One possible description of the three stages might be:
Mild
The person can live independently for the most part, with adequate personal hygiene and relatively intact judgement, but social activities and employment are both significantly impaired
Moderate
Formal employment is no longer possible and independent living is fraught with hazard to the extent that supervision is required
Severe
There is severe impairment of daily activities and continual supervision is needed
Caregivers have found this sort of gross division less helpful when discussing their loved ones with others. A more detailed (but no less overlapping or imprecisely defined) scale was proposed in 1982 by Dr B Reisberg which divides the spectrum between normality and severe dementia into seven stages [Reisberg B et al. The Global Deterioration Scale for assessment of primary degenerative dementia. American Journal of Psychiatry 1982 Sep;139(9):1136-9]. Of interest is that every normal person is already classified on the scale at Stage 1, and many will progress no further. The following is adapted from the original GDS:
Stage 1
No cognitive decline or subjective complaint of memory deficit. No
memory deficit evident on clinical interview.
Stage 2
Very mild cognitive decline (forgetfulness). Subjective complaints of
memory deficit, especially forgetting where one has put an object, or forgetting names of previously familiar people. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Showing appropriate concern regarding symptoms.
Stage 3
Mild cognitive decline (early confusional). Earliest signs of clear deficits. More than one of the following:
(a) patient loses the way when travelling to an unfamiliar location;
(b) co-workers notice deteriorating work performance;
(c) word and name finding deficit more obvious to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may show decreased facility in remembering names upon introduction to new people;
(f) patient may lose or misplace an object of value; or
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety may accompany symptoms.
Stage 4
Moderate cognitive decline (late confusional). Careful clinical interview reveals clear deficit manifest in one or more of the following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.
Frequently no deficit in:
(a) orientation to time and person;
(b) recognition of familiar persons and faces; or
(c) ability to travel to familiar locations.
Unable to perform complex tasks. Denial is dominant defense mechanism. Some flattening of affect (mood) and withdrawl from challenging situations.
Stage 5
Moderately severe cognitive decline (early dementia). Patient requires some assistance to survive. Patient is unable during interview to recall a major relevant aspect of their current lives, but retains knowledge of many major facts regarding themselves and others. Invariably they know their own names and generally know the names of their spouse and children. Frequently there is some disorientation in time or place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
Stage 6
Severe cognitive decline (middle dementia). Entirely dependent on carer for survival. May occasionally forget spouse's name. Will be largely unaware of all recent events and experiences in their lives. Will retain some knowledge of their past lives but usually very sketchy. Generally unaware of time and place. May have difficulty counting from 10, both backward and sometimes forward. Will require some physical assistance with activities of daily living. May become incontinent. Will require travel assistance but occasionally will display ability to identify familiar locations. Diurnal rhythm frequently disturbed. Almost always recalls own name. Frequently can distinguish between familiar and unfamiliar persons in their environment. Personality and emotional changes occur variably, and may include:
(a) delusional behaviour, eg. may accuse spouse of being an impostor, or may talk to imaginary figures in the environment, or to images on TV, or to their own reflection in the mirror;
(b) obsessive symptoms, eg. person may continually repeat simple cleaning activities;
(c) anxiety, agitation, and even previously non-existent violent behaviour may occur; and
(d) cognitive abulia, ie. loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.
Stage 7
Very severe cognitive decline (late dementia). All verbal abilities are
lost. Has urinary, and sometimes double, incontinence. Requires assistance toileting and feeding. Loses basic psychomotor skills, eg. walking, sitting and head control. Generalized and cortical neurological signs and symptoms are frequently present.
One further set of stages has been created by a wonderful care-giver in the USA, Edyth Ann Knox from Ohio, which sets out a series of short descriptive feelings or situations which many LOs and CGs go through in their journeys with dementia. This list of stages is quite large, so I have not duplicated it here, but the link above will let you have a look at it. Not every LO will experience every stage mentioned, nor will those that occur always happen in the same order for every person.
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