	AllExperts > Alzheimer`s Disease
	Search

About Mary Gordon
Expertise
Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience
Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

You are here: Experts > People/Relationships > Senior Health > Alzheimer`s Disease > Levels of Alzheimer's

Alzheimer`s Disease - Levels of Alzheimer's

Expert: Mary Gordon - 11/2/2009

Question
Are there standards used to judge how bad the Alzheimer's is in a person? Amazing how bad off someone with Alzheimer's can be, and not be considered end-of-life stage. For instance, I was told by a Doctor that until my dad, age 85, can't eat on his own, he can't get end of life care. Nothing else qualifies, like very short memory, being skinny and weak, can't walk well, can't get out of a chair on ones own, and tells delusional stories. Sounds like Doctors are waiting for extremes to declare end of life, like "refuses to eat," "can't speak," "losing weight, or "can't walk." Yet I read an article where hospices are complaining that people aren't admitted sooner, most patients passing away in 1-2 months after entry into a hospice.

Answer
Hi Carl, below my signature I've pasted the most commonly used set of "stages". Your Dad sounds like he is in Stage 6. As you know, this can be a slow and unpredictable disease. Quite often, people in later Alzheimer's will have a constellation of health problems other than their Alzheimer's (or rather, on TOP of their Alzheimer's) contributing to their frailty and overall decline. As I know you know, it becomes extremely difficult to detect, much less treat other health problems in a person who can't answer questions or cooperate with tests and treatments. A lot of families opt not to put their loved one through a lot of poking and prodding in the name of "health" and just decide to keep their loved one comfortable and happy and not even try. They choose palliative care, such as hospice care.

Here is a general guideline, intended to give families and caregivers of persons with dementia a general idea about criteria for admission to Hospice care. As you know, if you feel your loved one qualifies for admission to a Hospice program, their personal physician needs to write a referral for Hospice services. In addition, please be aware that there are two types of Hospices, 1) not-for-profit, and 2) for profit. This means that they may have different interpretations of these guidelines.

Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:
1. Person has to be in the end-stages of the disease, (stage 7 or beyond).
-Person cannot walk, dress, or bathe properly without assistance.
-Person is incontinent.
-Person has little or no meaningful verbal communication
2 Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
3 Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
4 The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
5 The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
6 There are other existing medical problems accelerating terminal disease such as CHD (coronary heart disease), COPD (chronic obstructive pulmonary disease), Renal disease, Liver disease, etc.

Guidelines 1 and either 2 or 3 must be present and clinical judgment must always be considered! Also, if a person with dementia admitted to Hospice care shows significant improvement to the point the person is discharged from Hospice, the person can be referred again for Hospice care and be admitted regardless of a previous admission.

I know it's not something you want to hear, but my mother in law spent two full years in Stage 7 before she finally passed away, unable to walk, talk or do anything for herself. She was robustly healthy other than her dementia, so there was no complicating factors to mercifully carry her off sooner. Most of the time she was in Stage 7, she wouldn't have qualified for hospice.

We did however, opt for palliative care only, and the Alzheimer's ward was supportive of that approach here in Toronto. We would only have treated life threatening medication problems with comfort measures (i.e. we would not have permitted resuscitation, hospitalizations, aggressive IV antibiotics, oxygen, feeding tubes etc. We wanted her happy, comfortable serene, but we knew the tide was going out and we weren't going to try to stop that gentle process. In her case, what finally happened was that she essentially stopped eating, no matter how she was coaxed or how patiently she was hand fed.

I do understand your frustration with the system. I know what you are seeing is shocking and distressing. It's hard to be believe that someone you love, and who has always been a strong person can be brought to such an awful state from their dementia. They are extremely fragile but at the same time really tough. Sometimes all it takes is the smallest thing to tip the balance into a real spiral down - but on the other hand, they can live on for much longer than anyone expects. You just never know how long they may soldier on, even when they seem like they are in really bad shape. It's heartbreaking. The guidelines were developed to try and put some guidance around a very vague situation - to try and nail down indicators of a person probably having less than 6 months to live. Like any guidelines, they are one size fits all, and not necessarily applicable directly to a specific individual, which is why it is very hard to accept when you see your father brought to such a state.

Hang in there. You might want to call your local Alzheimer's Association and see if they can offer any advice or suggestions.
http://www.alz.org/index.asp

Hope this helps a bit

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. They are sometimes referred to as the FAST scale (Functional Assessment STaging). 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.

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 withdrawl 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 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

Add to this Answer Ask a Question