Expert: Mary Gordon - 9/13/2008

Question
I am beginning to strongly suspect my mother (81) has AD. She will not see a doctor. I need to plan for her care. After studying the 7 stages, and studying AD in general on the Internet, I would guess her to maybe be in stage 3 or 4. She constantly complains of short term memory loss, and her behavior indicates she is getting worse. She can still cook, clean, and make clothes and dress herself.She can make a list and follow it, to move or just to buy groceries. Has trouble finding car in lot.She can do routine things, but cant learn someting new like how to use a cell phone.She is aware of current events, and knows who Obama and McCain are. She recently lost her checkbook, swore it was stolen, and had me take her to the bank and close the acct. 3 weeks later, I pull up to the drive thru with her,(she never drove in her life, and always had my dad handle banking before) and she hands me the old checkbook, and the teller says that acct is closed.(we are at the drive up bank, not the bank she went in to close acct 3 weeks prior.) She went in and denied closing it, but remembered when I got her out to the car and reminded her of the events to jog her memory. Anyway, I was wondering what you think about how long she has before she needs assisted living, nursing home, etc. I'll care for her as long as I can, and she will not be eligible for medicaid for 5 years.

Answer
Hi David,

You do need to think about how to get her to a doctor. Besides incurable progressive dementias like Alzheimer's, Lewy Body Dementia, multi-infarct dementia, and others - there are a host of medical problems that can impact cognition. You would never forgive yourself if it turned out that your mother actually had a medical problem like normal pressure hydrocephalus, a thyroid malfunction or a vitamin deficiency that was impacting her brain function, and could have been halted or reversed if caught in time.

Be creative. Be sneaky. Do whatever you have to do to get her seen by a doctor, including white lies. Send her doctor a letter telling him in detail what you are observing and asking for his help. Get her friends and other family members into cahoots with you. Get her pastor or rabbi on side. Appeal to any family friends and associates who are authority figures. I would not be above using her memory problems to get there. If she is going to object to seeing a doctor, make the appointment, don't tell her about it, and go get her and take her there. Tell her she needs to see the doctor for insurance purposes or about some physical problem. Or tell her she said yes and has forgotten. Bribe her with a nice lunch. Pat, soothe, reassure, distract, divert. Don't argue and confront. It truly is important to get a proper diagnosis, because there are medications now that can slow down many incurable dementias and improve her quality of life.  

Alzheimer's is usually diagnosed by ruling out everything else it might be, 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 mother's deficits - and this is crucial for you for a number of reasons. 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.

The reason it pays to have a good assessment is that it will show you just how impaired she is. It may be a real shock. We don't normally grill our loved ones - but comprehensive testing usually shows deficits in areas that are crucial for safe independent living, such as the ability to comprehend numbers, read a clock or calendar and know what it means, depth perception etc. She's your mom, and you need to ignore almost every assumption you hold about her, and be very, very suspicious. She may be able to hold a perfectly normal social conversation, and not be able to manage her money. She may seem with it, and yet not really be safe working appliances or handling her own medications. She may go out shopping and get lost in her own neighborhood, let strangers into her home etc. She may go out the door half dressed, or dressed for the wrong season.  Knowing exactly where she's at mentally will give you a more realistic set of expectations for her, and a starting place for planning for the future.

A really good book to buy is called the 36 Hour Day by Mace and Rabin, published by Warner. Its in paperback, its inexpensive, and it will really give you a lot of information and tips on how to deal with the behaviors that may lie ahead.

You also should get see a lawyer as soon as possible. Her will needs to be up to date, and you absolutely MUST HAVE valid powers of attorney for both financial and personal care decisions for her, or you will be in the soup when she is not competent to look after herself. You also need to really understand her finances and insurance situation, and you will need legal advice on how to structure things to preserve whatever she has to help pay for her care. It really pays to get legal advice on the medicaid and medicare rules that apply in the state in which you live - they vary a huge amount from place to place. This is one area where what you don't know can really bite you.

For my mother in law, we hired a financial planner, on the pretext of helping with taxes. The planner did a total inventory of everything my mother in law had, and it was hugely helpful to my husband (an only child), because it uncovered the fact she had all kinds of accounts with money in them that wasn't being looked after properly to generate income for her. My husband spent a lot of time running around consolidating accounts and straightening things out to make them easier to manage.

You asked how long it will be before she needs institutional care. I hate to tell you this, but if she lives alone, she may already be in need of support and supervision. At this stage, my mother in law had been diagnosed, and although she lived alone, we were over there several times a week, we had a visiting social worker who came every couple of months to assess her ability to function, and we had a housekeeper coming 1/2 days 5 days a week.  We sold her on the housekeeper by telling her it was a favor to us because we thought she shouldn't have to scrub floors etc. That was face saving for her, and better yet, it gave us a pair of eyes - we had an in house spy. The housekeeper kept the apartment clean, did laundry, made a lunch for her, kept an eye on her personal hygiene, made sure there was food in the house, and often went with my mother in law shopping.
We also had meals on wheels delivering dinners several nights a week. My mother in law insisted she didn't need them, but she did eat them, and they were much more nutritious meals than she was making for herself.  At this point we also had her name on a waiting list for assisted living.

Within a year of her being where your mother is, my mother in law could no longer live alone, even with everything we had arranged. She needed support and prompts with bathing, dressing, cooking, and she was not safe with medications, cleansers and appliances. She couldn't think what to do if anything went wrong, from a minor kitchen mishap, or a bathroom flood. She actually had a very serious overdose - we had put her pills into special dispensers, but she still managed to get into them, mix them all up and take too many. She couldn't tell time, her judgement was very poor, and she was having trouble staying oriented even in familiar places. She was in assisted living for one year, and then was too impaired to stay in an open facility. She needed to be in a secure, locked down facility where she got more complete supervision (i.e. in the assisted living facility, she was getting up at 2 am, and getting lost in the building, which was very dangerous - they found her in the boiler room once totally confused about how she had gotten there). She also couldn't get herself to meals or activities, couldn't work the lock on her door, and was having increasing problems dressing (i.e. the straps on her bra became a real mystery, and she would leave her room with a slip on but no skirt).

She was two years in the locked Alzheimer's ward, until she lost her ability to walk and all continence (the dementia ward could only take residents who were ambulatory), and then two years in the heavy care nursing floor.

My best advice to you is to plan for worst case. Assume she will need a lot of care and supervision within a year at most. Do your homework about what is available in your area, what it costs, what is available in terms of services, non-profit places, support organizations. If you plan to have her live with you, look into adult daycare so she's not left alone. Get her name onto waiting lists, even if you don't think you need to right yet. Some programs and facilities have amazingly long waiting lists, and things can change fast. Nothing worse than not planning, and being plunged into crisis by things progressing faster than anticipated, and having to take what you can get, rather than what you think is the best option. If she gets sick or injured, expect her cognition to take a nosedive, even if its only temporary.

Hope this helps. Below my signature, I've pasted the stages, just for your reference. My mother in law was about 7 years from start of the most subtle symptoms to the end - and it sounds like your mother is into stage 4. After this point, every loss will be more significant (the first stages seem to go slowly only because we have so much redundant capacity in our brains - once we use that up, every neuron that winks out seems to take something important with it).

Skates on, get her to a doctor and see a lawyer. Don't expect her to cooperate, agree, give you permission. She's going to deny, balk, get mad. Don't go toe to to toe with her. Find ways around her to do what you have to do to make sure she is properly cared for and is safe.

M.


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 referto 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 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 heir 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