stages of dementia

The progression of dementia is often understood and explained using ‘stages of dementia’.

Often, in its early stages, dementia is so much like normal aging that it is indistinguishable and often under-diagnosed. As dementia progresses, the differences between dementia and normal aging start becoming prominent. Often, at least in India, it remains under-diagnosed, and families just assume the elder is being stubborn and troublesome (which is why we need more dementia awareness programs). Then, as the situation worsens, families start realizing that this particular elder needs something different, something special. Doctors are consulted, diagnoses obtained, and treatment started as appropriate. Behavior at this point often includes stuff that harms the patient or others around him/ her, and gets tricky to handle. Often, even at this stage, non-pharmacological approaches are not considered, and it is assumed that only medicines can be used to manage challenging behavior.Then, dementia progresses to a point where the dependence is obvious, the disease is obvious, and the patient needs full-time caregiving.

The stages of dementia are often defined in terms of the decline in the functional abilities of the patient. A description of the seven stages can be seen at alz.organd at the Alzheimer’s Reading Room.

Essentially, the stages are:

  1. No impairment. This is when we function normally, and hopefully where we all are🙂
  2. Very mild cognitive decline. This could also be age-related or an early sign of dementia, and includes mild memory loss which is not obvious to either doctors or others. The person may suspect something is wrong, though.
  3. Mild cognitive decline. This is a very early-stage dementia, and the behavior starts getting noticed, but usually not enough to seek a diagnosis (though a diagnosis may be possible).
  4. Moderate cognitive decline. This is mild or early-stage dementia, and careful medical examination can result in a diagnosis. decreased knowledge of current events, decreased ability to handle arithmetic or complex activities, poor memory, all become obvious, and patients may start withdrawing socially.
  5. Moderately severe cognitive decline . This is moderate or mid-stage dementia, and patients need  assistance with activities of daily living. Accounting activities, arranging events, detailed planning, all become  complex for them. They get disoriented about time and space, and unable to remember important personal details, though they remember their own name and can still use the toilet independently.
  6. Severe cognitive decline. This is moderately severe or mid-stage dementia. Personality changes, significant short-term memory loss are more obvious, and patients need help in dressing and toileting. Incontinent grows. wandering starts. Some patients exhibit paranoia and other significant challenging behaviors.
  7. Very severe cognitive decline. This is severe or late-stage dementia, and by this stage, patients lose their ability to manage their bodies, and are unable to speak or move. Dependence is complete. Reflexes suffer, and swallowing becomes a problem.

As is obvious, the caregiver role changes as the patient progresses through these stages. Often, a caregiver is not even needed till the patient’s ability to live independently is affected. That someone needs help becomes obvious only when a problem arises, such as some embarrassing behavior, or wandering, or some accident. Often, it is not obvious at that time that the patient has dementia (and is not just a slightly absent-minded elder).

My mother’s dementia is not Alzheimer’s Disease, and if I usually end up giving links from Alzheimer’s related sites, it is only because Alzheimer’s is the most common form of dementia and almost all dementia resources online are under the umbrella of Alzheimer’s. The study of the impact of dementia, fortunately, remains similar enough for all dementias…

In my mother’s case, the first indications that something was wrong was her inability to walk without support, and that is when we consulted doctors. Looking back, though, I can see many small signals I missed. I can also see that my mother had sensed something going wrong much before the problems became apparent to us, and that a lot of her brusque and distancing behavior in the years preceding her diagnosis were probably her way of coping with something strange she sensed happening inside her, which she did not dare share because she did not want us to consider her either incompetent or mad…

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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