Progression of the Disease--Levels of Cognitive Loss

This is from a handout given to us at one of the support meetings. I've been meaning to put this up ever since I got it. As you'll see, the levels progress from better to worse, with level 1 being the most profound loss.

Level 5--Early Loss--Running on Routine--Repeating Stories

• Some word problems and loss of reasoning skills
• Easily frustrated by changes in plans or routines
• Seeks reassurance but resents take over
• Still does well with personal care and activities
• Tends to under or over estimate skills
  

Level 4--Moderate Loss--Just Get It Done!--Wanting a Purpose and a Mission

• Gets tasks done, but quality is poor
• Leaves out steps or makes errors and WON'T go back and fix it
• Can help with lots of things--needs some guidance as he goes
• Likes models and samples--uses others' actions to figure out what to do
• Asks "What? Where? When?" LOTS
• Can do personal care tasks with supervision and prompts
• Still very social BUT content is limited and confusing at times

Level 3--Middle Loss--See it-Touch it-Take it-Taste it--Hunting and Gathering

• Handles almost anything that is visible
• Does not recognize other's ownership
• Can still walk around and go places
• Language is poor and comprehension is very limited--does take turns
• Responds to tone of voice, body language, and facial expression
• Loses the ability to use tools and utensils during this level
• Does things because they feel good, look good, taste good--refuses if they don't
• Stops doing when it isn't interesting anymore
• Can often imitate you some--but not always aware of you as a person
  

Level 2--Severe Loss--Gross Automatic Action--Constant GO or Down and Out

• Paces, walks, rocks, swings, hums, claps, pats, rubs...
• Frequently ignores people and small objects
• Doesn't stay down long in any one place
• Often not interested in /aware of food--significant weight loss expected at this level
• Can grossly imitate big movements and actions
• Generally enjoys rhythm and motion--music and dance

Level 1--Profound Loss--Stuck in Glue--Immobile and Reflexive

• Generally bed or chair bound--can't move much on own
• Often contracted with "high tone" muscles--primitive reflexes reappear
• Poor swallowing and eating
• Still aware of movement and touch
• Often sensitive to voice and noise--startles easily to sounds, touch, movement...
• Difficulty with temperature regulation
• Limited responsiveness at times
• Moves face and lips a lot, may babble or reapeatedly moan or yell
• Give care in slow, rhythmic movements and use the flats of fingers and open palms
• Keep voice deep, slow, rhythmic and easy as you talk and give care

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If I had to guess, I'd say Dad was already at a Level 4 when diagnosed. Mom might disagree. Now, I'd put him at a Level 2, although he still shows some characteristics of Level 3, such as picking up any little thing he sees, responding to the tone of a conversation he wants to join, and some difficulty with spoons, forks, and such.