Progression of Dementia

Below I have listed the progression of Jim's dementia. The rate of progression for Jim was quite rapid, compared to what is more typical. For a good description of the different stages, check out this link. I actually saw many personality and behavior changes over 10 years ago. I did not recognize them for what they were, a precursor to dementia. In March of 2016 I started to document the changes, hoping to provide some perspective and understanding of the disease as it progressed.

March 2016: Mild Stage of Dementia (Stage 4)

Confusion about debit cards versus credit cards; difficulty using credit card at gas pump.

Confusion about driving to familiar places.

Anxiety increased with complex issues or changes in routines.

With anxiety, becomes very impatient and yells at me.

Unable to manage finances.

Forgot address, phone number, social security number.

Forgot he was on medicare.

Thought he was already collecting social security.

Forgets conversations we have had, anywhere from 5 - 10 minutes to several days/weeks ago.

Confusion regarding making appointments.

Struggles at word finding.

Sleeps a lot.

OCD behavior (laundry, cleaning, mowing lawn etc).

Sleep disturbed at night.

Did not recognize neighbor after talking to him for 15 minutes.

Forgot our anniversary, my birthday, his birthday.

Difficulty with time/month/day orientation.

Difficulty ordering things on the computer.

Problems navigating email, forwarding email etc.

Difficulty processing information (asks question and then has problems comprehending the answers).

Forgot Grand Canyon vacation until reminded about specifics (helicopter ride).

Used to be a voracious reader; no longer reads, likely due to not being able to follow or process the written word.

January 2017: In Moderate Stage of Dementia (stage 5)

Needs significant help with choosing clothing for the day. Without help, pulls most clothing out of closet, makes piles, unable to choose what to wear. Very anxiety producing.

Anxious much of the time. Very agitated, likely related to his anxiety.

Difficulty going to restaurants; too anxiety producing.

Very confused at times; would forget who I am, where we were.

Difficulty with language increases. 

Delusional; first delusion occurred late December 2016.

April 2017: In Moderately Severe Stage of dementia (stage 6a)

No longer able to use computer at all. 

Unable to use remote for TV.

Very anxious much of the time.

No longer safe to drive.

Profound confusion at times.

Significant language difficulties; has difficulty processing and difficulty expressing.

Needs some help with ADL’s. 

Sleeps a lot.

Sundowning. Doesn't always know who I am. Asks to go home, or asks me to leave. 

Significant increase in delusions.

Some problems with balance and coordination.

July 2, 2017: Moderately Severe Stage of Dementia (stage 6B)

Unable to use hair dryer, unable to turn on shower or adjust water temperature, needs help on what to do next (steps for showering, steps for getting dressed, ADL’s). Put deodorant on face, tried to put toothpaste on shaver.

Problems with balance and coordination.

No longer accepts being away from me. 

Tolerates only short trips from home.

Anxiety improved on citalopram. Anxiety worse if we are away from home. While home, usually not as anxious.

Still sundowning, at times does not know who I am, wants to go home, or thinks I should leave.

Tires quickly after small amount of physical effort.

Needs direction in washing hands (how to apply soap).

Appears unable to use knife to cut food. Unable to participate at all in making a sandwich for himself. Uses wrong utensil at times while eating. 

Speech is nonsensical at times. Worsening difficulty in processing what is said to him.

Still has problems with body temperature regulation; he is cold most of the time. 

He is frustrated by his fatigue from small amounts of activity. Expresses desire to be more active, but just too fatigued.

Sleeps a lot; usually goes to bed between 6:30 and 7:30. Sleeps for about 12 hours at night. Naps during the day, once or twice.

Delusions are frequent, occurring many times a day. Many times they are distressing to him.

Problems with balance starting to surface.

July 10, 2017 In Moderately Severe Stage of Dementia (Stage 6c)

Intermittent difficulty with the mechanics of toileting. Forgets to flush, does not clean self completely without help. Tried to put paper towels down toilet.

Difficulty expressing need to use the toilet. Appears to have lost the use of words “bathroom” and “toilet”. 

Intermittent expression of “I don’t know what to do next” when standing in front of the toilet.

Occasional episodes of small amount of urine loss in underwear.

One episode of bowel incontinence.

Language continues to decline. Frequently says nonsensical things, words strung together that don’t make sense. 

July 19, 2017

Frequent and worsening delusions that are upsetting to him. Per recommendation of Dr. S., Seroquel 12.5 mg started every evening. Some improvement noted; seemed less upset and less agitated by his delusions.

August 2, 2017 Remains in Moderately Severe stage of Dementia (Stage 6c)

Hallucinations are noted. Asks about “all the people in our house”. Said he saw a tiny man in the corner. Said he was bothered by “spirits in my head”. Wanted to know how to get rid of them. 

Delusions have worsened as well causing greater anxiety and agitation. Seroquel 12.5 mg in AM added. Improvement noted. 

Intermittent difficulties continue with bathroom needs. 

Needs hands on help with getting dressed.

Worsening problems with balance. Fell while walking on the grass. Very unsteady at times; needs to sit down to put on socks, pants etc.

August 13, 2017

Seroquel increased to 25 mg twice a day for increased agitation and threatening aggression. 

August 24, 2017

Increased Seroquel dose appears to be helping. Sleeping more, but is more content. 

Walking stiff legged, scuffing his feet. Many near falls. Not amenable to switching to different footwear that would be safer. Walker would not be safe.

Requires more help in bathroom.  

Rummaging behavior quite frequent; goes through kitchen drawers, my purse, his closet etc.

Needs constant supervision while eating. Tried to eat a banana peel. Doesn’t know what to do with dirty dishes or trash. 

Hallucinating every day, thinks there are many people here.

Misidentification; frequently thinks this is not his house and insists on “going home”. 

His speaking is very frequently (more often than not) a complete break with reality. 

September 13,2017 Remains in Moderately Severe Stage of Dementia (Stage 6C)

Agitation worse with threats of physical violence. Hallucinations and paranoia much worse and very upsetting to him. Seroquel increased to 50 mg twice a day.

Another episode of bowel incontinence.

Balance is worsening. 

Limited vocabulary. Use of neologisms.

Occasional difficulties with traveling in the car; becomes agitated, paranoid etc.

Sundowning every night. Attempts at gentle redirection/support met with aggression. 

September 20,2017 

Agitation continues. Geodon 20 mg twice daily started; Seroquel on two day taper.

September 25, 2017

Left the house, insisting on “going home”. Almost made it to corner of Cedarvale and Tpke. Agitated, did not recognize me. Responded to Julie; she brought him home.

October 1,2017

Had severe episode of agitation, threatening physical violence. As recommended by Dr. S., called 911. Admitted to CGH for stabilization and medication adjustment.

October 5, 2017

Per recommendation of hospital MD and Dr. S., John transferred to Iroquois NH.

December 6, 2017 Moderately Severe Stage of Dementia (6D&E)

Adjusted well to NH. Remains on Geodon and Citalopram. Thinks he is at home. Paucity of speech. Needs to use pull-ups for intermittent incontinence. Mood is stable. Enjoys the many activities provided by staff at the NH. Receiving very good care. Visit him every day and he is always happy to see me.

January 12, 2018 Severe Stage of Dementia (7A)

Seldom initiates speech or conversation. Occasional episodes of spontaneous speech involve 2 - 6 words, often non-sensical. Attempts by others to engage him in conversation results in a similar response; just a few words, often unintelligible. The one exception to this is he is still able to say “I love you Carole.” Remains happy and content at the NH. Always happy to see me. increase in frequency of incontinence.

February 15, 2018 Remains in Severe Stage of Dementia (7A)

Citalopram dose decreased by half on 2/1/18 by nursing home, as required by Gradual Dose Reduction regulation. Became quite agitated, unwilling to sit for a meal (skipped several), sleep disturbed. Pacing a lot and agitated. Quite angry at times. On 2/14/18, nursing home able to document failed trial of dose reduction. Citalopram resumed at 20 mg/day.

February 24, 2018 Remains in Severe Stage of Dementia (7A)

With resumption of Citalopram 20 mg/day, doing better. Specifically, less agitation, sleeping better at night, not as anxious, eating meals with others, not pacing as much. Overall, is more calm and content.

 Speech remains minimal, often unintelligible. Balance is worsening. When walking the hallways, hangs onto railing for support.

Incontinence has advanced. Becomes agitated when he needs to go, but does not have the language to communicate this needs. It appears he does not know what to do or where to go. Needs direct physical help with using the toilet. Otherwise incontinence occurs, either in his clothes (pull-ups) or in some random location, such as closet, wastebasket, floor. Becomes quite stressed with the incontinence, but generally responds well to reassurance that help is here, and that there is nothing to be worried about.

March 15, 2018 Severe Stage of Dementia (7B)

Paucity of speech, usually no more than one or two intelligible words when attempting to communicate. Gait has slowed further and there is more instability. When walking, prefers to hold on to the railing and/or my arm.

Participation in activities is mostly passive. He seems to enjoy these activities as long as the environment is not too loud.

Still knows me and is always very happy to see me. I shower him, as he is not cooperative with staff for this task. He is no longer able to wash his body; however he allows me to wash him. He often will fixate on wiping the shower tiles with his wash cloth while I am washing him.

May 15, 2018 Remains in Severe Stage of Dementia (7B)

Staff report that during the late evening, he wanders into someone's room, thinking it is his room. He becomes agitated finding someone in the bed, likely thinking that someone is sleeping in his bed. He was becoming physically aggressive and threatening, frightening other residents. Depakote added at this time to help with his agitation.

August 11, 2018 Remains in Severe Stage of Dementia (7B)

Experienced a lot of unsteadiness to the point he was at risk for falling. His body leans forward slightly at the waist as he tries to walk. Feet seem "glued" to the floor. His legs and feet shake as he attempts to try to walk. Provided wheelchair for safety reasons; awaiting medical evaluation.

August 13, 2018

Doctor believes his gait difficulty may be related to Depakote. This medication was discontinued on this date. Following this there was some improvement for three days, but then the unsteadiness returned. Using the walker or the wheelchair, depending on his level of stability and fatigue. Receiving PT.

September 14, 2018 Severe Stage of Dementia (7C)

Beginning to transition to stage 7C.
His loss of ability to ambulate independently is no longer thought to be a side effect of medication (he is now off the Depakote and the Geodon). Rather, it appears it is a progression of the dementia. He has fallen three times in the last few weeks.  Still receiving PT for optimizing his strength. Using the walker for ambulation.  He walks with a very short shuffling gait. Sometimes he is unable to get his feet/legs to move at all. He does best when he is well rested. If fatigued, he requires the wheelchair to prevent falls. Incontinent of bowel and bladder.

March 9, 2019 Severe Stage of Dementia (7C)

He is deep into stage 7C. Since last fall, there has been a variable but steady decline.

Communication: Almost mute.  Rarely, he will say a word or two. Efforts to speak result in neologisms (nonsensical words). Most of the time he still shows recognition of me; occasionally he has a blank stare with no recognition of his surroundings. Although he has lost speech, his facial expressions and hands still are able to communicate a lot of what he is feeling.

Mobility: Occasionally is able to use a walker for short distances, but most of the time he needs a wheelchair. He is receiving PT to see if he can regain some of this. His right foot drags, pointing outward when he is able to walk with his walker.

Emotions and behavior: He has mellowed considerably. He seems content, is not easily upset, and is receptive to caregiving.

Activities of daily living: He is totally dependent on others for all activities of daily living. The one exception to this is that he is sometimes able to feed himself if food is cut up. However most of the time he needs quite a bit of help at mealtime.

March 28, 2019 Severe Stage of Dementia (7C)

Primitive Reflexes: Exhibiting startle reflex and sucking reflex, all of which can be manifested in late stage dementia.

Mobility: Unsteadiness has worsened. When standing, needs two people to ensure he does not fall. Wheelchair used at all times unless he is in PT. His unsteadiness precludes standing for his shower.

Awareness: Decline in awareness of his surroundings. Recognition of me is intermittent. Increasing difficulty in processing what is said. Often is unable to follow through with requests to stand, sit etc.

Communication: Communicates his emotions with facial expressions and body language. This is the last time I will ever hear him call me by my name. It also is the last time I will hear him say "I love you".

April 3, 2019 Severe Stage of Dementia (7C)

Eating and drinking: Received OT referral for decline in skills for eating. Finger foods provided at meals to enable him to pick up food without utensils. Occasionally will pick up food unprompted, but usually needs food (such as sandwich) placed in his hand. Intermittently needs physical prompt to bring food to his mouth. Needs to be fed non-finger food. Now using Kennedy Cup for beverages. Occasionally will reach for cup to drink, but often needs cup with straw brought to his mouth to prompt him to drink.

Mobility: Having difficulty standing up unless assisted by at least one person. Once standing needs a gait belt or a second person to keep him from falling. Ability to take steps appears to be diminished. Very unsteady.

April 29, 2019 Severe Stage of Dementia (7C)

Primitive Reflexes: In addition to the startle reflex and the sucking reflex, also exhibits  the grasping reflex.

Mobility: Now requires two people to help him stand and transfer him from bed to wheelchair, or from wheelchair to bed. He is unable to pivot during the transfer; his body must be moved physically in order to turn him in the direction of the wheelchair or the bed.

Eating and Drinking:  There is  a loss of proprioception. Attempts to bring food or straw to his mouth are often unsuccessful, e.g. food/straw brought to his chin or his cheek instead of his mouth. Minimal attempts to feed himself.

Sleep: Sleeping through the night. Profound fatigue throughout the day. Sleeping most of the day.

Mood: Very quiet, peaceful. When awake, responds to my touch, seeing me and hearing my voice. Smiles at me. There is an increase in the amount of time of vacant staring, when he does not engage at all.

May 20, 2019 Severe Stage of Dementia (7C)

Eating and Drinking:  Early signs of dysphagia; delayed swallowing response, occasional coughing while eating or drinking.

Mobility: Received a different wheelchair, one that provides support for his head.

Sleep: Sleeping all night. Sleeping most of the day. He is awakened for meals and manages to stay awake for about 1.5 - 2 hours and then falls back to sleep.

Mood: Citalopram dose tapered and then discontinued. He no longer needs this medication. There was hope that stopping it would result in less sleepiness, but it did not make any difference. When awake, continues to respond to my voice and my touch. Intermittent episodes of vacant staring. He is very calm and peaceful.

May 24, 2019 Severe Stage of Dementia (7D)

Mobility:  At times is unable to hold himself upright in his wheelchair, leaning to the right. PT provided a bolster/cushion to support his right side.

Breathing:  Confirmed Cheyne-Stokes respirations while sleeping, anywhere from 20-30 second pauses, followed by deeper and faster breathing.

Mood/Sleep:  Very peaceful, still sleeping most of the time. When he opens his eyes for a few seconds, he sometimes connects with/recognizes me. Other times there is a vacant stare. Still able to smile, even chuckle if he finds something humorous.

Eating and Drinking: Weight loss of 7 pounds over the last month. Decreased intake due to somnolence.

June 6, 2019 Severe Stage of Dementia (7D)

Breathing: Physician confirmed Central Sleep Apnea (versus Obstructive Sleep Apnea). Cheyne-Stokes respirations now occurring while awake, as well as when asleep. Physically distressed by lack of oxygen; saturation dropped to 80%. Oxygen started at 2 Liters.

June 23, 2019

Passed away.


Tehachap said...

Just thinking of you and hoping you are well. Came across a poem that made me think of you and Jim. Will keep checking in on you... and praying for you both.

Carole said...

Hi Carol! Yes, I am doing well. Thanks so much for your care, prayers and your concern. I do have my moments where it all just seems so incredibly sad, but I make a concerted effort to appreciate what we still have.

Tehachap said...

Wondering how things are going with you. I hope this finds you well. We changed my husband's blood pressure medication and he hasn't had a single episode of confusion since then. I am much relieved...

Mage said...

I'm a friend of Tehachap, and I have been following you for several years. I keep you and yours in my prayers.

Carole said...

Mage, thanks for stopping by. I remember you from comments you have left on other posts. Tahnks for your kind words and your prayers.