Expert: Mary Gordon - 4/15/2009

Question
My mother is pre-demential with a lot of confusion and memory loss.  This condition is compounded with her still willfully maintaining her independent self-willed personality.  She refuses any help from her children or anyone and is not able to coordinate her cooking or hygiene management. She refuses any doctor visits, does not take any form of medication and will not leave her house.  When trying to help her with these things she becomes very agitated, offended and annoyed and sometimes beligerent and combative.  She believes and holds on to the fact that she is fine and she can still function on her own.  It seems that she is aware of her illness, however, is not giving up her home or being on her own.  She is fighting to stay independent free from having to stay with or depend on her children or being in a nursing home.  She was very bright as a child and as an adult more of a take control in every situation.  Everyone looked to her for help and she became a caregiver for others for many years.

I would appreciate it if you would provide me with any   information or suggestions on how to get help for her when she will not voluntarily accept it. It is not clear if she would allow some help in the home, would it be better than the drastic change of environment to a nursing home. It seems like there are some services available, such as home doctor vistis or adult behavioral evaluation but for certain incomes. What is the best way to make sure she qualifies for many services when there is income restrictions. She needs evaluation not just a psychiatric visit, for sometimes she is so confused and agitated and then other times like her old self. We are at our wits end on what to do and have contacted different agencies, however, if she does not voluntarily agree to treatment then there is nothing they can do unless police gets involved which is demeaning and loss of dignity.  

Answer
Hi Jack

My guess is that your mother is actually getting close to Stage 6, so she's not classed aser as "pre-dementia". If she was assessed, you'd probably be floored - she's very likely much more impaired and on more fronts than is apparent.

When you've known someone all your life, it's extremely hard to get your mind around the notion that this may look like her and sound like her, but her advancing brain damage is making her a whole other creature. If the person's personality and mannerisms are mostly intact, and if they can carry on some sort of a reasonable social conversation, the tendency is to give them the benefit of the doubt. We assume they are still themselves. We also interpret their behaviors and motivation in light of who they were before they got sick. We desperately want to believe they are still themselves in there. Sadly, its not just that the rules of the old game have changed - but that it's a different game entirely.  

The old "rules" for relating to her have changed - you have to throw out all your old assumptions and beliefs about her motivations, the standards of behaviour you hold her to, and how you interpret what she does. Things that would be formerly interpreted as being unreasonable, stubborn, malicious,hurtful, irrational, rude, deliberately annoying, paranoid - these apply to a person with an intact brain who is in full command of themselves. You have to get to the place where you really "get" that she is not doing this on purpose. She is doing the best she has with what her brain will allow her to do.

Here is a REALLY excellent article on the experience of dementia. I think it will really give you some insight into what your mother is going through, and some ideas on how to approach her. It's worth bookmarking.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

I'd also suggest getting yourself a copy of The 36 Hour Day by Mace and Rabin (4th Edition). It is a really excellent book on coping with a loved one with a progressive dementia - I've read a lot of Alzheimer's books, and if you only buy one, this is it.

The thing is, right now, she has no self insight, and her ability to reason is impaired. Her situation is screamingly obvious to everyone around her, but no amount of arguing, no persuasion, no confrontation, no logic, no threats or bribes or badgering is going to change what her damaged brain allows her to perceive.

It comes down to a matter of health and safety. She is vunerable and needs protection - not just from her own inability to look after herself, but from other dangers she can't see or understand, like exploitation by strangers, getting lost, burning the house down or causing a flood because she's forgotten to turn something off. Essentially, she's like a five year old living alone, and you are the adult with the intact brain. Don't wait for her agreement, her permission or approval - that day will never come. Get your skates on and start to get the wheels in motion.

Think sideways - think creative, think loving deception if you have to. Use humor. Pat, cajole, and distract. Tell her white lies if necessary. Use whatever you have - sneaky may not sit well with you, but if sneaky gets you where you need to go, you do what you have to do.

Are there family friends or other relatives who can help ? How about authority figures from her faith community if she has one? Can you fax her family doctor a letter telling him what is going on and get him onside ?  It is very unlikely she is capable of booking an appointment on her own, much less getting herself there on the right day and time. I'd just book something and go get her and take her. Use her memory issues as a cover if you have to or tell her a fib (he needs to see you for insurance purposes, or I told you about this last week). Bribe her with a nice lunch - do whatever you have to do. We found swarming worked pretty well - we'd show up with a couple of relatives, hustle my MIL into the car on some pretense  (she tended to behave better in front of a couple of people vs. just one), and cart her off wherever before she even knew what was happening.

You know her best, so you may be able to find ways to get her there. Given that she will be very impaired very shortly, you also need to consider the legal and financial fronts. Does she have a will? Does anyone in the family have powers of attorney for medical and financial decisions? Does anyone in the family have a good handle on her insurance situation, or on where and what all her assets are ?

It pays to see a lawyer and get some good advice on what the laws are where you live so you can take steps to preserve her estate to pay for her care. You also need to understand what she may qualify for. I don't know if you are in the US, but medicaid and medicare rules are very convoluted, and it is absolutely worth getting advice from an expert to help you navigate the system.

Can you get her out of the house for a few hours or keep her occupied with some ruse so another family member can assess the condition of her home in terms of how she is coping ? We resorted to that one - one of us would keep her busy and distracted while the other checked the food situation, looked to see how clean the place and her clothing was,  searched out signs of disasters, unpaid bills, you name it.

Start figuring out your plans for the future right now - because before too long, you ARE going to get a call from the police or a social worker or the hospital telling you she's in serious trouble, and can't live alone.

I know this is a huge amount to take in -so come back and ask anything at all. I'm not sure if this helps - but read the article, and get yourself a copy of the book. Below my signature I've pasted the most commonly used set of stage descriptions for your reference.

Mary G.


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. It is sometimes referred to as the FAST scale.

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