Expert: Mary Gordon - 4/11/2011

Question
QUESTION: Hi Mary,

My mother is 83 and I'm becoming more concerned about her mental functioning. At first, I was attributing it to her age, but some of her forgefullness doesn't seem normal: messing up writing checks by putting things on the wrong lines, trying to give me a check when it's actually a deposit slip, forgetting she has paid a bill and sending in another payment, asking me the same question that I just answered five minutes earlier, and just yesterday she was telling me that she saw in our newspaper the obituary of one of our neighbors--but our neighbor had died over a year ago. She also seems quieter and not as interested in life as she used to be. It's small things like this that have me concerned. She seems to function very well, like doing household chores and it seems ok to leave her alone at times. I'm not home that often, but this is what I've witnessed on occasion. My father may have seen other things he has not mentioned. What do you think? Thanks.

ANSWER: Hi Jeff. Listen to your gut. There is more than enough to alarm you here. What you are seeing is not normal. There are treatable causes of cognitive impairment, and even the ones that are incurable and progressive can often be slowed down with medications.

Just from what you describe, I would not say she is in very early stage confusion. I would describe her as a stage 4. Below  my signature I have pasted the stages in the FAST scale so you can see for yourself.

It is extremely important that she get taken to the doctor for a full physical AND for a referral to a specialist, such as a neurologist or geriatric psychiatrist with a dementia specialty. Do not let the doctor put you off by saying she's just old - she needs to be fully assessed so you know exactly what you are looking at and what can be done to help.

It is very important to know what this is, so your family can make good plans for the future. If she has a progressive dementia, you need to be prepared for what is likely to come. You need to have done some thinking and planning about finances and future care. This is even more essential if you are in the US. She may not be able to sign legal papers in short order, so it's time to review wills, insurance documents, powers of attorney for personal care and financial decisions. You need a good lawyer with expertise in estate planning - particularly if you may face the morass of medicaid and medicare legislation.

Get an appointment made with the doctor and try to go with her yourself, or enlist other family or close friends. Your father may be in denial, and neither of them may be accurate reporters of what is going on - much less really take in what they are being told. Lack of self insight is common with dementia. When my mother in law was clearly very impaired, she had no idea that there was anything wrong with her, much less that it was obvious to those around her. She was blissfully oblivious to most of her deficits.

Part of my mother in law's assessment included a series of cognitive tests, similar to  what you would put a child through looking for learning disabilities. My husband was with her and was completely gobsmacked. At this point, she was a little fluffy headed, but she could carry on a pretty good social conversation and appeared to be coping fairly well on the domestic front. However, expert testing revealed that she was very much more impaired than was obvious to a lay observer, and on more fronts than we could have guessed. The testing was useful, because it shocked us into a more realistic view of what she capable of, and stopped us from minimizing what was going on.

Here is a good article on understanding what she may be experiencing. Although the article repeatedly says Alzheimer's, what they are describing is common to all the major dementias. I'm not saying she has Alzheimer's, but it seems she does have some sort of impairment, and this will give you some insight into the various types of memory,and how she is likely to be experiencing reality.
 http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

Hope this helps.

Mary G.


FAST Scale

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of progressive dementia. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages. This is called the FAST scale (the Functional Assessment Scale). It gives us a common language to describe generally where a person is in the progress of many of the progressive dementias by describing symptoms in terms of their abilities.

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 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   




---------- FOLLOW-UP ----------

QUESTION: Yes, I'm here in the US. I plan on taking her to our local doctor for a check up and then possibly a referral to a specialist. I had a bit of relief today when I was talking to a relative from home and she did say that there was a tribute in our newspaper regarding our neighbor who had passed away. It was one of those anniversary memorials. At least she wasn't imagining it, but it does tell me that she had forgotten about it since last year.  The nurse I spoke to at the clinic mentioned that she had noticed that my mother had seemed forgetful on her last visit. I've been hearing that some of the medications help somewhat. From what you know, how effective are the medications? Thanks.

ANSWER: Hi Jeff,  

Just as an aside, here is an example of sample screen a doctor can do in his office.
http://www.bcguidelines.ca/pdf/cognitive_appendix_c.pdf
A score of 24 or more is generally considered normal.
Another common test is to ask the person to draw a clock face. The doctor will draw a circle and ask the person to put the numbers around the dial, and then show the hands in a particular spot. Here is an article about this screen.
http://ageing.oxfordjournals.org/content/27/3/399.full.pdf
http://www.alzheimersreadingroom.com/2009/12/alzheimers-clock-draw-test-detect-s

Our family doctor did some of these with my mother in law, and she couldn't copy simple line drawings or do the clock faces at all, even though if you had met her, you would have not thought there was much wrong. The clock face is a deceptively simple test - it demonstrates deficits in executive function (to be able to draw one, a lot of abilities have to be functioning that a healthy person doesn't even think about).

Before you have any idea what you can do about whatever is going on, she will need a good diagnosis. Besides Alzheimer's, there are a range of other dementias that are surprisingly common. Vascular or multi-infarct dementia is the second most common. It is caused by tiny strokes and blockages that are happening continually. The person doesn't show signs of stroke in ways you would think - but every tiny event causes damage and it accumulates over time to cause cognitive decline. There are also frontal lobe dementias like Lewy Body dementia, frontotemperal dementia such as Pick's disease. Parkinson's causes a progressive dementia. There is normal pressure hydrocephalus. Older people can show dementia signs due to untreated thyroid disease, low oxygen levels, B12 and other nutritional deficiencies. There are all kinds of causes, and what helps one can make another one worse. Worst of all, given how delicate the brain is, and what a constellation of health issues many older people have, it is not uncommon to have more than one cause of cognitive decline happening at the same time (i.e. they have Alzheimer's and multi-infarct at the same time). That gets called mixed dementia.

What seems to work best for Alzheimer's is a combination therapy of meds such as memantine and galantamine. A common combination is Aricept and Namenda (brand names). They are not a miracle cure. They do not reverse existing damage. They do not stop the disease from progressing. What they do is slow the illness down somewhat, buying the person more time with higher functioning - and that can be huge, because it translates into better quality of life. It is particularly important in the earlier stages, since at that point the person has the most to lose, and you are trying to keep them functioning as long as possible. Even a few years back, these meds were only recommended for people in advanced stages, but now the tide has turned. After all, given that many patients are elderly, if you can keep them functioning longer, it helps everyone, including caregivers, and also means that other health issues may really be the cause of their end. The natural end of dementias can be brutal for everyone. I know that sounds like a harsh thing to say, but we all want our loved ones to have a chance to still be "themselves" to the end of their days.  

The meds doesn't work equally well for everyone, and some people have a struggle with drug side effects. Many families will believe the drugs are not helping - but when the person goes off the meds, they seem to have a sudden drop in abilities, and when they go back on the meds, they perk up. So, going into the meds, you have to have realistic expectations of what they will and won't do for a loved one.  Later in progress of Alzheimer's, families may feel they don't want to slow down the progress and discontinue the drugs - i.e. the person has reached a point where their quality of life is limited, and prolonging things is not a kindness.

Hope this helps.

Mary

---------- FOLLOW-UP ----------

QUESTION: Mary,

Thanks so much. So much helpful info.! I'm setting up things this week for my dad to take in my mom for a check up. I'm sending in a fax to the doc before the visit so she will already have an idea of what's going on. I'm just not sure how well she will be able to treat my mom being a small town doctor. At what point should I be asking for a referral to a neuro.?  I keep hearing mixed opinions. Because of her arhritis, it hurts her to ride long distances and I don't want to subject her to any unnecessary discomfort.

Answer
I'd ask for a referral now. Usually, what a lay person can detect is the tip of the iceberg. You would never forgive yourself if you found out later this was some treatable form of impairment that could have been helped if it had been caught earlier. Besides which, now is the time she has the most to lose, so you want to know up front if there is anything you can do to preserve function for her.

Consider it this way - if she was 53 instead of 83, and you saw these symptoms, would you hesitate to ensure she saw a specialist? Cognitive impairment is never a normal part of aging. It's always caused by some underlying disease or injury process.

A neurologist can order the tests that give you a more solid answer to base family plans on. You can torture yourself with fears and doubts, but when it comes to dementias, it's easier on everyone to have some facts you can act on - you need to know what you are up against - then the next steps become clearer.

Mary