AboutMary 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!
Question what is the tests for Alzheimer's Disease?
Answer Hi Sue - the only truly definitive test for Alzheimers is a brain biopsy, almost never done, for obvious reasons. Since a brain biopsy is too invasive and risky, Alzheimers gets diagnosed by ruling out common possibilities, one by one. Confusion and memory problems can stem from a host of things including small strokes (so small the person may not show other signs of stroke), drug interactions or side effects, Parkinson's, thyroid problems, brain tumours, pernicious anemia, depression, low oxygen levels, high fluid pressures in the brain - and a stack of other things. Alzheimer's is one of the most common causes of confusion in the elderly, but not the only cause - so its always, always worth getting a proper diagnosis. Confusion is never a normal part of aging. Knowing what the real problem is helps a family to plan for the future.
The first step is to see the family doctor and have a full physical to look for the more common of those "other things" to make sure your loved one isn't suffering from some health problem other than Alzheimer's that might affect their memory - especially since the "something" might be treatable. A good assessment includes a general 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 such as MRI to rule out strokes, tumors etc. The usual process is that the family doctor does part of the evaluation (which may include some very basic screening for cognitive deficits), and then sends the person to a specialist - usually a neurologist or a geriatric psychiatrist.
A proper assessment should also be done to check out the extent of the person'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, as well as depth perception, muscular coordination etc.
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).
If a person has symptoms noticable to their family, they are often much more impaired on many fronts than may be obvious from normal interaction, so testing for deficits can be an eye opener. My mother in law could carry on a very good social conversation very far into her illness, so if you'd met her fairly early in the illness, you never would have realized she was not able pay her bills, work her appliances, or read a calendar. My husband sat with her when she had a battery of memory and cognitive tests, and it was truly shocking to him. She just didn't "seem" as impaired as she really was - but the test results shook us right out of complacency about her ability to take care of herself.
Don't wait for the person to believe that there is something wrong with them, or agree they need help. If they have Alzheimers or any other progressive dementia that causes brain damage, they can't see their own problems. Their reasoning is damaged, and what seems obvious to you may not be apparent to them at all. Find a way to get them to a doctor, even if you have to fib to them - early diagnosis is important, since they may have confusion from something treatable - and also there are now drugs that will slow down the progress of the disease. The drugs available now aren't a cure, and they don't reverse the damage or stop it from progressing, but they can slow it down and buy the person more time and better quality of life.
Below I've pasted the stages of Alzheimers, just to help you get a feel for the kinds of problems the disease causes.
Hope this helps - if you need more information, get back to me.
Mary Gordon
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.
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., 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
