Expert: Mary Gordon - 3/9/2011

Question
My dad is 84 years old.  I started noticing memory problems several years ago until in 2010 he had lost most short term memory.  He began having inability to do his normal daily routines like getting mail, going to the bank, driving safely.  He began having episodes of syncopy.  He had surgery for a carotid artery which was 90% blocked.  The next day he had a pacemaker put in.  He has been in and out of the hospital from October through December.  He has gradually been more and more confused and "lost" not in the same room with me.  He knows who I am...but not where he is or what is going on.  Often he seems to be someplace else seeing other people and things.  He was accepted by Hospice the week after Christmas last year.  they have been wonderful.  Now my dad has had at least 3 or 4 mini strokes.  The last one left him with the inability to see clearly out of this left eye so he has started not responding at all to anything on his left.  He has the shuffling gait and cannot be left unattended at all.  Somedays he can walk with a walker and assistance...somedays he needs the wheelchair....many days he cannot get up at all.  He has been sleeping mostly during the day off and on and then awake through the night.  He has sundowners and gets very aggitated even aggresive.  The last several days he has gone from being up at 6 am and being aggistated and over active to two hours later being in such a deep sleep we cannot even wake him.  Some days he eats really well and others he won't eat at all.  Yesterday I couldn't get him awake all day - he slept till 4am and then woke up very aggitated again.  One week his is bedridden and unresponsive...and the next it's like he's sitting up in his chair and eating with assistance...he has started having trouble with taking his pills...most of his meds are now liquids...he cant seem to swallow a pill even though he can swallow food.  He tries to chew the pill or just sucks on it even with me telling him to swallow and giving him water or juice...he swallows the water!  I'm so confused.

Answer
Hi Deena, sounds like he was never properly assessed and diagnosed with respect to his original memory issues.

As you may know, it is quite possible for a person to have more than one cause of dementia happening at the same time - and it is actually quite common in the frail elderly. In his case, my best guess would be that he probably has Lewy Body dementia, and also multi-infarct. Both of these are very common forms of progressive dementia.

Lewy Body Dementia is only second in frequency to Alzheimer's disease. Besides the memory issues, fainting and repeated falls are common. People develop the Parkinson's like shuffle when they walk. They also can have vivid visual hallucinations.  Fluctuating cognitive function is a relatively specific symptom of Lewy body dementia. Periods of being alert, coherent, and oriented may alternate with periods of being confused and unresponsive to questions, usually over a period of days to weeks but sometimes during the same day. Patients may stare into space for long periods. Excessive daytime drowsiness is common. In other words, the person really has bad days and good days with huge fluctations in alertness and abilities, which can be very confusing for a caregiver.

In addition to this, you report that he is having symptomatic strokes, so it's probably he has cognitive damage from that as well. Many people with cardiovascular risk factors have constant tiny mini-strokes, so small they usually show no outward symptoms - you wouldn't know that the person had a had a blockage or stroke, other than a very small decline in mental abilities. Each tiny stroke causes permanent damage and over time, this damage accumulates and results in mental deficits.

Unfortunately, the firm diagnosis of what is happening to him is not really going to make any difference to the progress or outcome of his situation. Lewy Body Dementia, multi-infarct dementia, Alzheimer's - they all end up at the same place, and they are not reversible or curable.

Incidentally, the stroke that left him with vision problems on side probably also impaired his awareness of that side - it isn't just a vision thing. It as though they have forgotten about one side entirely - it's actually called neglect -  for example, they may dress one side and not the other but think they are fully dressed, or see the arm on the affected side and not seem to realize that it belongs to them.

Because his neurological damage is impacting his muscular coordination, he is developing issues with chewing and swallowing. This is very common. He will be at risk for choking, so I'd suggest you discuss his pills with a doctor or pharmacist and find some other format to get his meds into him (crushed, liquid, patch).

Although this article talks about Alzheimer's, what it describes is common to many of the progressive dementias and it may give you some insights into what your father is going through, and also help give you some ways to understand the things he does.

Below my signature I have pasted the "stages" of dementia - it is a functional assessment tool that gives you a feel for where a person is in a progressive dementia and what is likely to happen next as their brain damage progresses. Many frail elderly will not go through all the stages because some health complication other than their dementia will end their life before the natural end of the dementia. However, you may find this helpful. My guess is that he is somewhere in Stage 6.

Hope this helps. I know this is very stressful and I'm thinking of you.

Mary

Functional Assessment Staging Tool

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of dementia. Even today, nine years later, when experts refer to a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(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 accompanies symptoms.Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in 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 the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawl from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost