Expert: Mary Gordon - 1/4/2009

Question
My partner has been diasgnosed with Mixed dementia, after suffering (apparently) a couple of mini-strokes 3 years ago. They took him off Serc for dizzyiness and now He is now on Aricept to which he responded very well. I don't know if his MEMORY is any better but at least he is aware and participating and has become less zoned out. I am afraid that his memory is actually getting worse again (forgets big chunks of stuff) and the doctor did not really want to put him on Aricept because she said it was so temporary. We have a good geriatric care team, but no one wants to tell me what the future holds. (I'm not too sure he is really aware of the change in him, because he talks about stopping the aricept because of the dreams. But other people talk about years and years of help from Aricept. I wonder if the patients are still getting worse and they just keep taking the drug or does it really arrest the development? I can't find any information about how long the Aricept might help OR where we are going from here. My heart breaks (every night) to think he might wind up with full-blown ALZ but his mother had it. His kids seem to think i am exaggerating the problem, and i am desparately lonely too. Can you tell me what to expect from the Aricept, or what kind of prognosis we have? Can you stop and start the Aricept? Sorry to bother you but i really don't have anyone to talk to.

Answer
Hi Deb,

You are not bothering me!!

This is going to be hard to hear - and I truly wish there was something else I was about to say.

When doctors say "mixed" dementia they mean a condition in which Alzheimer's disease and vascular dementia occur at the same time. The concept of "mixed" dementia is clinically important because the combination of the two diseases may have a greater impact on the brain than either by itself (i.e. the poor brain is taking a double whammy in terms of damaging conditions).

Vascular dementia is also called multi-infarct dementia. Infarct is a fancy name for stroke or blockage. Generally with multi-infarct dementia, the person is experiencing frequent tiny strokes or blockages that cause an accumulation of brain damage. Frequently, these are so small that they cause no apparent symptoms at the time (i.e. its not like a big stroke, where you can tell something has happened). This is an incurable, and progressive dementia, that leads to complete disability and ultimately death. There are no medications that can stop it or reverse it. The best you can do is try to deal with his stroke risk by keeping his blood pressure and cholesterol low, and also manage anything else that might contribute to his risk, such as Type II diabetes.

What you have been told is that he also has Alzheimer's on top of that. Alzheimer's is also progressive and incurable - and the progress is relentless. There is no stopping it, or curing it, or reversing it. Aricept slows it down somewhat in many people, thus giving them and their families more time at a stage when there is better quality of life. I would not agree that the drug is "temporary". What the doctor really means by that is that it doesn't stop the disease from advancing, but believe me when I say, anything you can do to keep him functioning as long as possible is important, especially since you are the caregiver.

If the doctor has led you to believe he will not go down hill, he or she has done you a huge disservice. If he has multi-infarct dementia from strokes, and Alzheimer's on top of that, it will progress. Progressive dementias are fatal illnesses - and I know this is not what you want to hear.  

Now is the best you've got - this is as good as it gets - and if the Aricept is helping, I would not stop it, if at all possible. Right now is the best function he will have, so preserving it is important. Down the road, it may not seem worth it. This is going to get much, much worse, and the doctors should have told you that, so you and your family can prepare. Below my signature, I've pasted the stages of Alzheimer's - and with mixed dementia, he will progress along the same path. Because of the vascular issues, he may not progress slowly and evenly, but may take sudden drops in function.

I'd strongly urge you to invest in a good lawyer, with experience in estate planning where you live. If you are in the US, the medicaid and medicare laws vary from state to state, and they are an absolute minefield. You need to talk to someone who really knows the rules, so you can start planning.

The day is likely to come when you really cannot cope with his care at home - eventually, if he survives to the natural late stages of dementia, he will be unable to do anything for himself - he won't be able to walk, talk, feed himself etc. and he will be incontinent. It will be relentless, 24/7, thankless and gruelling. So, you will need help - and even though its unthinkable now - you may have to place him in an assisted living facility that specializes in dementia care, or ultimately, a nursing home.

Forewarned is forearmed. You need to know how to plan for his care, and to also protect yourself financially, so you don't end up broke trying to do it on your own. A good lawyer is crucial to help you with this - the average family that consults one in time to make good plans saves over $60,000. You also need to make sure wills are up to date, and that you have powers of attorney in place for both of you, for both financial and health care decisions. If you have considered living wills, now is also the time, since legally, your partner may not be able to sign papers much longer.

Now - you need support. First stop should be a call to the Alzheimer's Association to find out about support groups and resources where you live. The directors of care for any seniors residences may be worth calling also - if there are resources out there for families, they will likely know about them. Talking to people in the same shoes you are in will help. You are not alone.

Start doing some research (and the Alzheimer's Association can help) on what is available in your area, even if you aren't ready to consider certain things. Find out about local adult daycare. This can be a godsend - since he will need supervision 24/7 before too long, you will need someone to be with him so you can get out, get some time to yourself, get your hair done, visit friends, or even just do some shopping. Reach out to friends, neighbors, your faith community. Even if someone can come over two afternoons a week to sit with him, you will feel better. You need a break!!

I'd also plan to take some mini-vacations, and get his kids to look after him. There is utility in this idea on several fronts. Even if its just a few days, you will get a bit of rest (or go visit family or a friend), and they will get their eyes opened. It will be a jolt, but they need to see him up close and personal to really "get" what is going on, and get themselves out of denial. Its one thing to visit someone with dementia, its another to look after them. Don't feel guilty for one nanosecond. He is their father, and they need to step up and help you.

Look into anything that will make your life easier and take some of the domestic load off you - a cleaning lady, a grocery delivery service, someone to look after the taxes, a lawn service.  Check out local medical supply places for ideas - such as grab bars for the bath, or bath chairs, locks for cupboards where hazardous materials are stored etc. If he may wander and get lost, consider registering him with the local authorities (many places have "quick return" programs), or door alarms. Buy a copy of the 36 Hour Day, by Mace and Rabin, published by Warner. Its one of the best books on what to expect and how to cope.  

Be kind to yourself Deb. I'm truly sorry to be the one to give you some hard news.  Come back and ask anything you want, any time. I'm here for you.

Mary G.


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 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