Expert: Mary Gordon - 7/13/2007

Question
QUESTION: I have a grandmother that has dementia. The last time we could get her to see the doctor was about 4-5 year ago. At that time she was forgetful. Since that time, she has gotten lost while driving and someone had to call my father to pick her up 4 cities away, does not remember her grandchildren and great-grandchildren, asks the same questions over, will not change her clothes or shower, walks around with a blank stare, has forgotten how to use her air conditioner/heater,forgets to eat, writes checks out in pencil, and has begun to have personality swings. I do not know what to do next. My father is having a hard time dealing with it. There have been times recently when she has yelled at him saying some pretty mean things when he was trying to help. Of course, it is not really her saying these things but it hurts him still the same. My dad has a POA document that can be activated if there is a medical reason she is unable to take care of herself. However, she refuses to see a doctor and he does not want her to get mad at him again. He lets her stay by herself in her home. Do you have any idea what stage she is in? When should she stop staying by herself? If she needs to be in an assisted living facility, how do you move someone that refuses to go? Honestly, I do not know where to start.

ANSWER: Hi LeighAnn,

I have pasted the stages of Alzheimer's below my signature so you can make reference to them.  She is in stage 6, and it is very likely she will become incontinent very shortly.

She should not be living alone at this point. Alzheimer's causes brain damage that is irreversible. It doesn't just affect memory. It impacts judgement and ability to reason. It impacts emotional control. It damages perception (i.e. her sense of smell, her ability to recognize people and things, her ability to navigate, her depth perception). It impacts muscular control (that shuffle she is doubtless getting in her walk) and balance. Fine motor skills are damaged as well as gross motor skills. Reaction time is impaired as well .

She is not safe living alone. Not only can she cause a fire or flood, but she can't be trusted with applicances, with utensils. She can't be trusted to clean herself or her house, to take medication properly, to handle food properly or to feed herself nutritious meals. She can't be left to handle her own financial affairs - math skills are one of the first skills to go for most people. If there was an emergency, she won't have the judgement to know what the right thing to do is. She's also vunerable to thieves and others who would exploit her or harm her.  You already know she can get lost - and this is true for walking around as well as driving. It is flat out terrifying that she is still driving because it isn't just dangerous for her, its dangerous for anyone on the road who she might run into. Tell me honestly - do you think she could pass a driving test? Would you want your loved ones on the sidewalk as she pilots down your street?

Right now, she is like a three year old living in an adult body. She looks like the same person, she may have vestiges of the old personality and mannerisms, but her brain is damaged and she is not at all the same person she was. You cannot take anything she says personally. She no longer has the sense of what proper social behaviour is, or control over her emotions. She has no insight into her own problems. You can argue with a person in this stage all you want, and they will never agree they need help, that they are having struggles. What is completely obvious to everyone around them will not be obvious to them.

If you could see an MRI of her brain, you would see it has literally shrunk to about half of its former size.  

Your father has to get over his reluctance to get her "mad" at him. When you were a child, he wouldn't have let you getting mad stop him from preventing you from doing things that were dangerous i.e. a three year old might throw a tantrum if you take the paring knife away from them, but you still take it away.  

The thing is, she is not far from disaster. I hope her financial affairs are in order - you mention your father has a powers of attorney for her - there are two kinds he needs - one for financial and medical decisions. The difficulty is that she may not be competent to sign papers even at this point. She is likely very much more impaired than you can appreciate.

Do what you have to do to get her to a doctor and have her assessed. Write a letter to her family doctor if you have one outlining what you are seeing, and then call him. Get an appointment set up. You don't have to ask her permission or even discuss it with her at all (probably get her all upset for no reason. Get something set up and TAKE her. If you have to, get a posse of relatives together and stuff her in the car. You don't have to tell her where you are going. Bribe her with a nice lunch. Do whatever you have to do to get her there.

She needs help!! I very strongly suspect you will be shocked by the results of a cognitive assessment. Her symptoms are overt, and the alarm gongs should be going off in your gut.

We moved my MIL to assisted living - we didn't get her all wound up by discussing it with her, since she would never agree she needed help. We arranged for her to spend a night with a relative (a nice dinner, a nice over night stay) and we ran around like nuts packing up what she needed for her new room, and moving it all in. Then the next day, with everything all unpacked and arranged, we took her to the new place.

Again, tell her whatever white lies you need to tell her. Tell her her house is being fumigated or painted or whatever so she needs to stay there for a few days (come up with a story, whether its she needs to stay there for a little while because the doctor says so, or that its a holiday or whatever). They do adapt and get used to it and forget about their previous life. What we discovered was that my MIL couldn't have organized her own escape if she had wanted to leave - she might talk about wanting to go home, but her impairment was such that she couldn't have figured out how to do that (i.e. packing her stuff, calling a cab etc. etc. would have been too complicated and require too much planning and thought for a person who couldn't hold a rational thought in their head for longer than 30 seconds ). We also found out that the home she kept talking about was her PARENTS home where she hadn't lived for 60 years. She had forgotten they were all dead and the house long sold. About that stage, she also stopped knowing her husband in pictures and started signing things with her maiden name, so she forgot she was ever married, so her marital home, and her apartment after that had been erased from her head.

Hang in and get her to a doctor, however you need to get her there.  You don't want to go over there and discover her in filth, eating half rotted food, or get a call from the police that she has been found half dressed miles from home in bad weather. I know this is so hard to do, but I think your instincts are telling you the truth.

Hope this helps (see below for the stages, I'd guess she's 6b or c.

Mary G.


Stages of Alzheimer's
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 (these are the most commonly used set of stage descriptions, even now)


Level 1

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

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 invariarably know their own 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: You have helped tremendously and I have convinced my father to make a doctors appointment at a memory clinic. Do you know if this is the right place to start? The doctor is a neurologist. It is going to be very difficult to get her to the appointment and I am hoping that this will have this biggest impact.  What do they do?  When I called to talk with the office they said there were no preliminary questionnaires.  How will they know about my grandmother's current state?  Will they only test her memory?  How is that  going to diagnosis her or help my father understand what stage she is in and what to expect in the future.

Answer
Yes, this clinic is a good place to start. As discussed, given that she has no insight into her own problems due to her brain damage, there is limited point to tell her in advance where she is going. You will just get her all stirred up and she'll dig her heels in - so don't bother talking about the appointment. If on the day, she wonders where she is going and may freak out, make something up if you have to  - cajole, fib, flatter, coax - whatever. Tell her the insurance has insisted she go for a check up. Tell her she agreed earlier and has forgotten. Tell her you are going out for a nice lunch afterwards. Sooth, reassure, distract, divert her to some other subject - but don't get into toe to toe arguing with her. It will get you nowhere since all the logic in the world won't get through to her, or get her to agree. The kind of flip outs you may have seen have a name - they are called "catastrophic reactions" and they are essentially like toddler tantrums - when things get too much for someone with cognitive impairments, when there are too many demands on them or they can't cope - they may lash out verbally, make wild accusations and even become physical (my very gentle little mother in law once slugged me upside the head for trying to help her change her filthy sweater).

Generally, the first step in diagnosing a dementia is a full physical to rule out all kinds of things that can cause dementia. This include thyroid problems, strokes, nutritional issues like Vitamin B12 deficiencies, low oxygen, liver problems, tumours, high blood sugar from uncontrolled diabetes, Parkinson's disease etc. etc. They also screen for psychiatric problems like depression.

Even if what she is going to is a memory clinic, they will want to know all about her general health, so if they don't do a physical and she hasn't had one in many years, they may send her to someone who can do one, since the process of diagnosing cognitive problems is really one of elimination. They try to figure out what could NOT be the cause, and then can zero in on fewer possibilities. Odds are good its Alzheimer's because her behaviours and progress appear to have been fairly textbook and it is the most common cause. However, they do have to look at and eliminate everything else it might be, because some causes are treatable, and some are even reversible so they need to be thorough.

They will probably do some basic memory and cognitive screening at the clinic. There is something called the MMSE Mini-Mental State Exam, which is a series of simple questions a doctor can ask a patient in the office. It gives a good indication of whether the person is impaired - it doesn't just test memory but other cognitive functions.  If you do a google on MMSE you will find lots of information. Other in office tests can include getting the person to draw various simple things, like clock faces, which require many parts of the brain to function together. Based on the results, the doctor can order further tests - usually an MRI or other brain scan to check for stroke damage, and the kind of shrinkage or lesions typical of dementias like Lewy Body, Alzheimer's etc.

Given that she is well advanced in her dementia, they may nor may not decide to bother with a comprehensive cognitive assessment - i.e. she may not be capable of cooperating. If possible, it is worthwhile, if for no other reason than to graphically demonstrate to your father how very impaired she is. At the time my mother in law had one, my husband (an only child) sat in with her to help reassure her.  He was completely shocked by the results, since at the time, had you met her, you wouldn't have believed there was much wrong with her. She could carry on a very competent social conversation far into the illness, and managed to hide many deficits. At the testing, it became obvious that she really was confused on many fronts.

If the clinic has no advance information,  I expect they are trying not to be  influenced by family who may have their own agenda, but in this case, the worries are valid. You can always write a letter outlining examples of what has been happening, how long it has been going on, and the kind of symptoms you are seeing - and fax it to the doctor. Given that she may not be able to adequately answer questions, this is probably worthwhile to help alert them. Make sure they know family members (preferably your dad with his a copy of his power of medical attorney in hand) will be there. If your grandmother is anything like my mother in law, she will have a great deal of trouble answering direct questions about her own history - they tend to circumlocate - you ask them a question about when some event happened, they tell you a long loopy shaggy dog story that doesn't answer the question - or they tell you something that sounds sort of plausible, but is inaccurate. My mother in law once very accurately told an emergency room doctor her address - but it was her parents address where she hadn't lived for 60 years.
A good idea is to write out as much of her medical history as your father may know, and bring it with her to the appointment. The doctors were very grateful for my husband doing this, since my mother in law could not tell them when she'd had major illnesses or surgery, what medications she was on, etc. etc.

They will give you a probable diagnosis after they are finished all the testing - which probably will take a couple of visits, possibly to other specialists or to other clinics such as for a brain scan. At that point, you can discuss prognosis.  

I should warn you - be prepared. Alzheimer's is not only incurable, but its relentlessly progressive, and it IS a fatal illness. If this is what she has, unless some other illness carries her off first, it will progress, and will end up in Stage 7 and eventually, like my poor mother in law, be taken by the disease.

You are doing the right thing to get her to medical help. I am willing to bet money the experts at the clinic will be able to figure out what is going on in short order. If it is Alzheimer's, better to know now so you can make good arrangements and be prepared. If it is not, better to know what you are up against, particularly if there might be something that could help, or at least improve her quality of life and help her be less anxious.

Mary G.