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When a loved one is diagnosed with dementia, what can you expect? Although there are many individual differences, dementia unfolds in predictable stages.

When it becomes clear that a loved one has dementia, the inevitable question for family, friends, and caregivers is "What comes next?" The stages of dementia don't give a precise timetable for the progression of the disease, but they offer some signposts for planning care.

1. Prodrome

Nearly all kinds of dementia begin with a period of years or even decades during which the disease processes are operating in the brain, but there is no cognitive decline. Abnormalities might be detected on a brain scan, but there are no dysfunctional behaviors that raise cause for concern. This is the time during which preventative measures are effective.

2. Very mild cognitive decline

In the second stage of dementia, forgetfulness is an issue. A certain amount of forgetfulness is normal as we get older, for the simple reason that we have so many things to remember. In dementia, however, forgetfulness is pathological and progressive. People who have dementia in this stage are still self-aware and may raise their concerns with a trusted doctor or family members, but many will do their best to conceal their disability.

3. Mild cognitive decline

In this stage, failures of memory become more problematic. People in this stage of dementia may frequently lock themselves out of their cars or houses. They may struggle for words, or revert to their native languages if as adults they usually speak a learned language. There will be challenges in "executive function" to solve life problems and difficulties with new places. Family and friends notice the condition in this stage. Dysfunction at this level gets the doctor's attention.

4.Moderate cognitive decline

A change in the diagnostic criteria for Alzheimer's disease and other forms of dementia in 2012 placed many Americans who previously would have been put in the first three stages of dementia into Stage 4. The standard for diagnosing mild cognitive decline, in the USA, used to focus on memory loss. The old standard attempted to discern a difference between memory issues nearly all older people have and memory loss that is part of a pervasive, progressive disease process.

But psychiatrists realized that dementia is about more than just memory loss. As a result, the new standard applies a label of moderate cognitive decline to people who:

  • Suffer impaired community involvement. People in this stage of dementia may stop keeping up with friends, social clubs, or church. They may forget birthdays, anniversaries, and names of friends and family members.
  • Suffer impairments that limit independent living. They may have to get help with shopping, banking, and filling out tax returns. Their homes may need major repairs and housekeeping may be neglected.
  • Suffer declines in self-development. They may give up hobbies, reading, keeping up with the news, and work.

Under the new guidelines, if you oe a loved one expresses a concern about the possibility of dementia, your doctor may take that as a symptom of dementia. By making mild cognitive impairment about more than just memory, the new criteria for Stage 4 of dementia moved a lot of people farther up the dementia progression scale. Just because you have mild cognitive impairment, however, you don't necessarily have Alzheimer's. People who have Alzheimer's pass through this stage, but many other people never progress beyond it because they have other forms of dementia or perhaps don't have dementia at all.

5. Moderately severe cognitive decline

People in Stage 5 of dementia have major memory difficulties. They may forget their names and they may forget where they live. They may need assistance with dressing, bathing, and personal hygiene. They may not remember to eat. People in this stage of dementia who live on their own may start a tea and toast diet, or just eat a favorite snack food for all of their meals, developing severe malnutrition.

This is a stage of dementia when delusions may begin to appear. A widow or widower may start an active "life" with an invisible dead spouse, for example. There can be agitation and anxiety and defiance of people who contradict delusions. A churchgoing person in this stage of the disease whose church meets on Sunday may go to church on Saturday, notice no one else is there, and then start making angry speed dialed calls to other church members. Or someone in this stage of dementia who can still drive may decide that the drive-on-the-right or drive-on-the-left rules don't apply to them. This is the stage of dementia that intervention with driving and communication privileges may become a necessity. At the end of this stage there may be sundowning, waking up in the middle of the night and going about activities as if it were morning, sometimes with apparent normalcy except for the time of night.

6. Severe cognitive decline

In Stage 6 of dementia, formerly known as middle dementia, the condition become a huge burden to the patient and a heartbreak fo family and caregivers. Memories of earlier life are lost. Some people in this stage become incontinent, not feeling the body's clues that it is time to go to the toilet. They may be sufficiently self-aware that they realize when they have soiled themselves. People in this stage of the disease may have good days and bad days, but the good days can be tormented by vague recollection of recent situations in which they have embarrassed themselves. Some people with dementia in this stage express a desire to die, but they usually lack the ability to follow through. 

7. Very severe cognitive decline

Also known as late stage dementia, Stage 7 of the disease is usually accompanied by an inability to speak, eat, or sit up. There is no control over bladder or bowel function. Even in this stage of the disease, some patients have moments they are able to communicate and interact with loved ones. For loved ones who are lucky enough to share such a moment, it is a rare gift. But it is outside the norm and reports of flashes of the old person will be met with skepticism by doctors and other caregivers.

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  • Photo courtesy of SteadyHealth

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