Expert: Mary Gordon - 2/5/2004

Question
My family believes my aunt who is 83 and lives with my father and mother has some form of demintia. She will not go to a DR. she doesnt think anything is wrong with her  Her memory is very bad. she is VERY paranoid and tells awful lies about us to each other. we cant get her to a doctor and we are at loss as how to treat her. do you know of anyway that we can help her and save our sanity

Answer
Hi Andrea

What you are describing could be Alzheimer's or it could be a lot of other things.  Alzheimer's is only diagnosed by ruling out everything else it might be. Confusion and memory problems can stem from small strokes (so small the person may not show other signs of stroke), drug interactions or side effects, thyroid problems, pernicious anemia, depression - and a stack of other things.  

Alzheimers doesn't just affect memory. It affects every part of the brain.
Essentially, her abilities will be dismantled, neuron by neuron. So even
now, her judgement is likely very impaired as is her ability to reason -
so she is unlikely to be able to see her own problems. It may not be
denial - it may well be that she genuinely can't recognize what is
painfully obvious to others close to her. So - if you are waiting for her
to realize she has a serious problem, you may be waiting forever. She is
doing the best she can with what she has - a damaged brain, that may not let her see her situation as others see it. She also may not be able to
remember your conversations for long - so even if you convince her of
somthing today, it may be a new discussion to her tomorrow. So...don't
argue with her, or try to reason with her. Arrange the world so that your
job is to love her, and pull the strings behind the curtain.

My suggestion is to call her doctor and tell him or her what is going on and get their help to get her in to an appointment. If he or she won't talk to you on the phone, write a letter to the doctor telling him or her what has been going on, and for how long. Give specific examples of the episodes and behaviours that have given all of you concern. If the doctor is responsible, he or she will act and set up an appointment. Don't get into discussions and arguments with your aunt. Don't make a big deal about it. If she might be really difficult, don't even tell her ahead of time. Just take her, whether you have to get a pile of famiily and friends together and physically cart her there. Bribe her with a nice lunch. Fib to her if you have to about insurance requirements (oh you have to see Dr. So and So to maintain our coverage).  Sooth her. Distract her. Enlist the help of her clergymen or respected family friends. Do whatever you have to do to get her to medical attention.

The doctor's first step will be to make sure your aunt isn't suffering from some other problem that might affect her memory - especially if the "something" might be treatable.  A good assessment includes a full physical with assorted blood tests, some psychiatric evaluation to rule out depression, a review of history and medications, a neurological work up, usually including a CAT or other brain scan to rule out strokes, tumors etc.

A good assessment will also check out the extent of your aunt's deficits.  Alzheimer's doesn't just affect memory. Because it affects the entire brain, reasoning, judgement and personality can be affected early in the disease. Things families notice first often include memory lapses, trouble with numbers or time, getting disoriented in familiar places (i.e. getting "turned around" on the way to the store), trouble thinking of words, asking the same question repeatedly,  getting upset easily or frustrated, changes in routine (i.e. they sometimes stop participating in things they previously loved), difficulty solving simple problems (i.e. not being able to figure out what to do when something goes wrong). It can be subtle, but if the alarm bells are going off in your head, I'd listen to them.

You probably already know this - but just to set the scene for the way you  have to look at this - Alzheimers is an incurable, progressive, fatal
neurological disease. If this is what she has, your aunt will not get better - she will continue to go down hill - and just how fast can't be predicted. The medications out there such as Memantine, Aricept, Exelon, Cognex, Galantamine - none of these cure or arrest the disease - but they CAN slow the progress of deterioration. Knowing what the cause of her confusion is will help the doctor to help her.

As far as the personality changes go - you are still looking at her as though she is still the same woman she always has been - but brain damage may be changing her perceptions entirely. She is doing the best she can with what her brain allows. She isn't intentionally being mean or telling lies. She is just very confused and can't figure out what is going on - so she will make up things to fill in the gaps, or believe things that can't be true because her brain won't let her be logical. If you don't understand your memory is not working properly, and money disappears from your wallet, you may think loved ones have taken it. It has to be very frightening and upsetting for her. The world is becoming a jumble that makes no sense, and she is hanging on by her fingernails.

At the bottom of my response, I have pasted the stages of Alzheimers so
you can get a feel for what may happen next if she does have AD. Just from your very brief description, I would guess that she is in late Stage 3 or early Stage 4. Keep in mind that many people with Alzheimers are very deceptive in that they can carry on a very good social conversation which can fool you entirely into thinking they are more with it than they are. After all, we rarely grill our loved ones on recent events, or test their ability to do various things. To give you an example from my own family, my mother in law could yack on the phone and sound entirely normal. Her friends and many relatives thought there was nothing wrong with her mind at all - but they did not realize that she couldn't work appliances, tell time or read a calendar, or that organizing cooking and cleaning was beyond her. After all, very little in the way of checkable facts got communicated during social visits or phone calls. Be suspicious. Numbers and understanding of time are one of the first things that starts to go - so if she is taking medication on her own, that is a concern.

We were very shocked by the assessment of my mother in law carried out by a specialist, since careful testing showed she was very much worse than was obvious to any of us.

If she has Alzheimers, it  will not only take from her reasoning and judgement but emotional control, reflexes and reaction time, depth perception, muscular coordination. I say this not to frighten you - but to make you pause.  You need to plan for her future care since if it is Alzheimer's she WILL get worse, and will need support and supervision after 24/7 - and your parents are unlikely to be be able to do this alone. Hopefully, legal and financial matters have already been seen to, such as powers of attorney for both financial and personal care decisions for both her AND your parents.

I know you don't want to hurt or humiliate her. It is always hard to know
when to step in. No one wants to take away what independence a person has left - but its a fine line, between respecting their autonomy, and leaving them exposed to real dangers. But, safety has to be the priority.  You love her and you want her safe, and that is bottom line, so you do what you have to - and sometimes you wil be the person with the intact intellect who has to make decisions your loved one may not like.

A first step for the family is to purchase a good general book on
Alzheimer's. A useful title is the 36 Hour Day by Mace and Rabin,
published by Warners but there are others.

I really feel for you - but I promise that taking action is better than the stress you are going through worrying and wondering. Get her to a doctor and find out what is going on, and then take it from there.

Mary Gordon
Toronto

Stages of Alzeimers

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, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Stage 1
No cognitive decline. No subjective complaints of memory deficit. No
memory deficit evident on clinical interviews.

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

Stage 3
Mild cognitive decline (early confusional). Earliest clear-cut deficits.
Manifestations in more than
one of the following areas:
1.patient may have gotten lost when traveling to an unfamiliar location;
2.co-workers become aware of patient's relatively low performance;
3.word and name finding deficit becomes evident to intimates;
4.patient may read a passage of a book and retain relatively little
material;
5.patient may demonstrate decreased facility in remembering names upon introduction to new people;
6.patient may have lost or misplaced an object of value;
7.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.

Stage 4
Moderate cognitive decline (Late Confusional). Clear-cut deficit on
careful clinical interview.
Deficit manifest in following areas:
1.decreased knowledge of current and recent events;
2.may exhibit some deficit in memory of one's personal history;
3.concentration deficit elicited on serial subtractions;
4.decreased ability to travel, handle finances, etc.
Frequently no deficit in the following areas:
1.orientation to time and person;
2.recognition of familiar persons and faces;
3.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.

Stage 5
Moderately severe cognitive decline (Early Dementia). 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.

Stage 6
Severe cognitive decline (Middle Dementia). 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 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:
1.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;
2.obsessive symptoms, e.g., person may continually repeat simple cleaning
activities;
3.anxiety agitation, and even previously nonexistent violent behavior may
occur;
4.cognitive abulia, i.e., loss of willpower because an individual cannot
carry a thought long
enough to determine a purposeful course of action.

Stage 7
Very severe cognitive decline (Late Dementia). 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.

(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.)