Expert: Mary Gordon - 3/6/2004

Question
I am writing a paper on this subject for a class. can you tell me what are the down falls of caring for a person at home who had AD.  IS it better for them to be in a skilled nursing home.   My paper is an argument paper. This far I have not taken a side on this matter. I am hoping that you can steer me one direction or the other thank you for your time.   denise

Answer
I don't think I CAN steer you one way or another, since the answer is "it depends". Its not black and white - it really does depend on the individual situation and family, their lifestyle (type of home, income), the competing demands they have on them, the supports they have from other family and from agencies, what they can afford to arrange etc. etc.

At the bottom, I've pasted the stages of Alzheimer's so you can see how this illness progresses. Many people with AD live for quite a long time and the illness progresses gradually (although relentlessly). So, in the early stages, the person with AD may even be quite fine living alone, with some limited supports and someone keeping an eye on their situation, although living alone does mean the family has to have a plan for the next stage - whether having someone go to live with the person, moving them to live with family, or moving them to an assisted living facility (not the same as a nursing home). Keep in mind that facilities offer graduated care, and assisted living is entirely different than a secure AD specialty ward, which is different again than a heavy care nursing home - all of which the AD person may need in time.  

For example, my mother in law lived in her own apartment at the time she was diagnosed. As the illness progressed, we arranged a daily housekeeper, a visiting social worker, meals on wheels, a physiotherapist who came to the house, plus we were over there many times a week. We also had a person helping with her finances (keeping the accounts straight, doing the taxes etc.)
In the earlier stages of the illness, the person is still themselves, and everyone who loves them wants to preserve what dignity and independence they have left, as well as quality of life. Institutional life is not anyone's first choice at this stage.

Eventually, my mother in law got to the point where even with all that help, there were major safety issues (around the time she was in Stage 4, see below). She was getting lost, letting people into her apartment, couldn't be trusted with appliances like the stove, no longer knew what to do in an emergency....so she needed 24 hour 7 day a week supervision and we weren't able to supply that - and that was entirely a function of our own situation. We were young (in our 30's), we had three very young children, we had a 4 floor house (she couldn't do stairs due to knee problems), and both of us worked full time. We just couldn't have managed it - although in different circumstances, we would have been quite willing.

Have you ever visited any kind of assisted living facility, AD ward or nursing home? Even the best ones are not places that most of us want people we love to go to five minutes before we have no other choice. They are grim and depressing - just because the people who are there are so often in sad shape - and not because they aren't well cared for, but because of age and poor health.  I can remember when we visited various places to get an idea what was available and being quite upset. My mother in law would be moving to a place full of sick old people - because she had become a sick old person. She would move from a place full of her own things and full independence to an institution with a schedule. The AD ward she went to later in the illness was even more frightening since many of the people there had more advanced AD than she did, and it was like looking into hell - we could see what she would eventually become. And nursing homes are full of people who are close to death, so also upsetting places for families to contemplate their loved ones living in. My mother in law spent the last two years of her life in a nursing home, since she lingered in stage 7 for that long.

Many families do cope quite well into Stage 5 or so- but you do start to get into harder physical care - the person needs help with dressing, bathing etc. You also can't leave them alone for a minute, and that gets to be very hard on people (i.e. many caregivers find they can't get anything done, have no life other than caregiving etc.) The "catastrophic" reactions at this stage can sometimes put an end to someone being at home. One set of family friends had to put their father in a home because he was a very big man and he began to hit when he was frustrated - and it just wasn't safe for the caregivers like their tiny frail mother.

Certainly by Stage 6, most families are seriously thinking about a care facility - especially if the person starts to need assistance with eating and toileting, or even becomes incontinent.  Night time wandering and other sleep disturbances can mean 24 hour duty. Taking care of someone at that point can be physically difficult, gruelling and thankless (i.e. the person with AD may not know you, recognize your efforts or be able to talk etc.) - and I've seen caregivers almost put themselves in the grave trying to cope. Families get exhausted, frustrated, angry and can really start to resent the person they are taking care of.

Only individual families can answer the question about when things reach the point where they consider a care facility. The first and overriding factor has to be the safety of the AD sufferer. Caregivers  can't let guilt or denial cloud their judgement, painful as it is.  If person they are caring for can't be kept safe,the caregiver has to take action regardless of the wishes of the AD sufferer. The second factor has to be the ability of those close to the person to cope.  Much as they love or respect the person with AD, they have to consider at what point caregiving becomes too much for the rest of the family - if they just can't do it adequately, if they are getting overworked, overstressed, distraught, can't get the supports they need etc. There has to be a balance there - and no one wins a prize if a total focus on caregiving for one family member means the neglect of others who need them, the sacrifice of the caregivers physical or mental health, loss of their livelihood etc.  

The interesting thing is that as the disease progresses, the person with AD becomes less aware of their surroundings and therefore less bothered by things that might have been very upsetting to them previously. A lot of the upset about moving to a facility is often limited to the family who feel sad, guilty etc. just thinking about moving their loved one. Just to give you an example, although my MIL was not happy about moving to an assisted living facility (even though it was really a fabulous place with so many options for activities), when she moved next to the AD ward, she was not fully aware she HAD moved - she was so confused by the time that though it was in a completely different facility she was only vaguely aware something was different. And again, when she had to move to a nursing home, she was so far gone, she had no idea where she was or that any kind of move had happened.

So in the early stages the person with AD will not want to move to a facility, but as the illness progresses, they won't care as much or be as much impacted, and the reluctance is more on the part of the family, who remember the way the person was before they got sick, and still think the old rules about what the person prefers apply (they say things like - I promised mother I would never put her in a home - even though that promise was made 10 years earlier, when mother was still herself mentally, and now she's at the point where she wouldn't know if she was in a home or not. Eventually though, most families find it too hard to provide the kind of care that is needed.

In the end stages,  families are faced with the reality that although no one can love the person like they can, but that doesn't mean they have to be the one bathing the person, feeding her, dressing her etc. In a facility, new staff come on shift every 8 hours. They are rested, they are not distraught by a loved one in this condition, they get to go home at the end of the day and take days off for vacation and stay home if they are unwell. There are lots of hands to pitch in if there is a problem. There are doctors and nurses available to check on concerns that might otherwise mean a panicked trip to the ER in the middle of the night. Nursing homes are built with caregiving and disabled residents in mind, and are full of special equipment to make caregiving convenient, easier and safe.

And many families are hugely relieved when a loved one in a later stage goes into a facility and they can go back to doing their REAL job, which is loving the person, enjoying whatever interactions the person is still capable of etc.

I hope this helps. I guess my ultimate take is that as the disease progresses, different kinds of supports are needed, and I would not say one size fits all about any one choice.

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, 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