Expert: Mary Gordon - 9/15/2011

Question
My husband's grandmother, who has some form of dementia, moved in with us almost a year ago. It has been a difficult transition at times for everyone involved, but for the most part she seems to be settling in very well and is very happy here. When she first moved in she was crying almost every day for the things that she had recently lost (husband, home of 50 years, independence...). Her doctor asked her if she needed someone to talk to, meaning a counselor, and she said that would be nice.
She has been seeing a psychiatrist for several months now, but I do wonder how much good it's doing at this point. Often grandma can not even remember what they talked about as we are leaving the parking lot, but she does enjoy going and it did help a lot in the beginning, I think. From the material we have read, my husband and I believe that she is somewhere between early stage and mid-stage dementia. She can remember many things from the past and can hold a long conversation with us, but has very bad short-term memory, can not play games with us, and is more often disconnected from the activity around her.
It seems like an awful lot of money for something that she can't take home. Is there a point when it is pointless to take her to the psychiatrist? When do we know? Or is it better for her to continue that routine (this is the psychiatrist's view)?
Thank you very much for your time.
Mariah

Answer
Hi Mariah,

Below my signature, I have pasted the most commonly used set of stage descriptions for dementia. They are based on functional abilities, so this list is sometimes called the FAST scale (Functional Assessment STaging). It's useful because although not everyone with a progressive dementia will follow exactly the same path or speed in terms of the order they lose abilities, the general patterns are universal as brain damage progresses. My guess from the bits you describe is that she is Stage 5. Have a look and see what you think.

Here is a really great article that will give you insight into what she is going through, and how the various types of memory work. It is full of good tips and ideas and will help you understand why she may not know what is happening today, but can recall in detail what happened years past. It is also a good article for understanding the source of problems and behaviors you may be starting to see that can seem odd or difficult.  

http://alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dementia%2

When you read this article, it becomes completely clear why a person with dementia may be in emotional distress.

In the very early stages, some people are self aware, in that they realize there is something wrong with them. My mother in law, for example, not only knew something was wrong, but would sometimes have good days when she realized her errors and was mortified - for example, she would actually understand she had paid the same bill repeatedly, or sent a note to someone that made no sense, and she'd be very upset. She also often realized she couldn't do things she had previously done without difficulty - such as when she saw our three year old son slap videotapes into the VCR and play them, and she could no longer work it at all. So there was the stress and distress and humiliation of knowing she was slipping.

Not everyone is self aware though. Right from the outset, many people have no notion that anything is wrong with them, and will in fact deny it vehemently. They think something outside themselves is causing all the challenges they face. They feel victimized and put upon because they can't see their own problems, even when those problems are screamingly obvious to everyone around them. They think people are being mean to them, playing tricks, stealing things, you name it. They will push help away even when they need it, because they can't accept or even see they need it. They are extremely upset and distressed.  

Think what it must be like for your husband's grandmother to get through a day with no short term memory. Everything would be a completely confusing swirl. I always say I think it must be like being very drunk at a very large party where you don't know too many people. You would have such a hard time keeping track of what was going on or where you were or who you were with or what conversations are ongoing. It must be extremely stressful. She's barely holding on with her fingernails trying to make sense of it all.

Okay, so now for the psychiatrist. No, I don't think there is much purpose to counseling when a person has impaired immediate and short term memory. Value in counseling comes when a person has self insight, and can remember and consider conversations, and use abstract thought. With dementia, it isn't just memory that is impaired but thought processes as well. Her judgement is impaired. Her perceptions are impaired. Her emotional control is impaired. Her ability to use logic and reason are impaired. She's like a child living entirely in the here and now. She can't plan or form intents to change her behavior or feelings (never mind she can't remember what was talked about). So how can she take in what was discussed and have it benefit her?

She may like the doctor as a friendly pleasant person, who pays attention and has a nice chat with her, but I'm willing to bet she'd be equally happy to be out for a nice visit with a neighbor,  or someone from her faith community, or an old friend. Doubtless she'd get the same value from it, and it wouldn't cost money.

It is very, very common for people with dementia to get very depressed, or very agitated and anxious, or have delusions and hallucinations that are very distressing, sleep disorders etc. People can also get into difficult behavioral grooves, like tantrums or outbursts of violence when they are frustrated, or doing things repetitively from anxiety, like pacing, or picking at things. So, it's not uncommon for drugs to be used to help the person to feel calmer and happier, and to help control some of the emotional volatility so they have better quality of life.

If she is on meds or experiencing emotional or behavioral problems, I can see checking in occasionally with a dementia specialist such as a neurologist or psychiatrist who understands dementia to see how she is doing, assess where she's at in terms of dementia progress, discuss if meds are needed, or need to be changed, if any meds are achieving the desired effects, causing unwanted side effects, or need to be discontinued because the stage they were needed for has passed.  

However, honestly, I can't fathom the rational for one on one counseling continuing given what you describe about your husband's grandmother. I cannot see the purpose or that it would be at all helpful for her at this stage. Nor do I think it's ethical for a doctor to continue with it after the patient is too cognitively impaired to get real benefit out of the expenditure.  

One thing you might consider if it's available where you live is enrolling her in adult daycare a day or two a week. She would probably love it. It's an outing, a chance to socialize, participate in various activities and get some mental stimulation in ways it is very hard to provide in a home environment. It would also give you a little time off to look after yourself, get things done, whatever.

Thinking of you. Hope this helps!

Mary

Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted
description of the stages of Alzheimer's disease. Even today, 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 withdrawal from challenging situations occurs.

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 within 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., paatients 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