CHAPTER 16. GRIEVING FOR PATIENTS WITH ALZHEIMER'S DISEASE

16.01 Patients with Alzheimer's Disease; Background

16.02 Natural History and Prognosis in Alzheimer's Disease

16.03 One or Two Individuals

16.04 Artificial Nutrition and Hydration in Alzheimer's Disease

16.05 Suffering and Grieving in Alzheimer's Disease

16.06 Grief Therapy for Relatives of Patient's Dying of Alzheimer's Disease

16.07 Institutionalization of the Alzheimer Patient

16.01 Patients with Alzheimer's Disease; Background

Caregiving to patients with Alzheimer's Disease (AD) is an area of particular interest to the author. My interest in part results from drafting living wills and writing about advance medical directives in which the primary concern of most serious individuals is to insure they will not be artificially kept alive for prolonged periods after they lose their ability to communicate with the world. In another part it results from the fact that since leaving the active clinical practice of medicine, it is the area of care in which my advice has most often been sought. In still another part, it relates of my interest in drug development, with AD probably being the most common disease in which we have failed to make significant advances over the last forty years in spite of the reasonable potential to do so. And finally, it stems in part from my intrigue with the "one or two" philosophical argument discussed below which questions how society should view a presently highly demented patient who was previously quite intelligent -- should we consider the present patient as if he or she is a new individual demented for life or should we continue to think in terms of a previously intelligent person who suffers from severe destruction of the brain.

16.02 Natural History and Prognosis in Alzheimer's Disease

Forty years ago, "senility," as it was called, was considered to be due to "hardening of the arteries," assumed to be common in the elderly. Alzheimer's disease was considered to be a totally different entity striking younger individuals in their early sixties and producing a somewhat different clinical picture, although in retrospect the clinical differences were found to be explained not by differences in the patients, but by differences in the normal activities of sixty year-olds and eighty year-olds to which the patients had been compared.

The problem with maintaining the split senility/Alzheimer theory was that on pathologic examination, most patients with "senility" had no more hardening of the arteries to the brain than patients without senility. And, on closer microscopic examination of the brain, most had the same strange plaques of protein-like materials and knotting of nerve cells seen in patients with AD. This, however, was not universally true. Perhaps twenty percent of patients with dementia did not have changes of AD but did show evidence of multiple strokes and severe disease of the blood vessels. Thus what had previously been called "senility" was now redesignated to be either "Alzheimer's dementia" or "multi-stroke dementia," depending on the appearance of the brain. [Note: Only later with CT scans and MRIs was it recognized a still smaller group of demented patients had what has come to be called "low-pressure hydrocephalus," a condition in which blockage of fluid flow within the brain causes progressive damage to brain cells.]

Even though the incidence of these disease entities in the older population probably has not changed, the percentage of people in these age groups has greatly increased, making dementia a much more common disease. Nearly ten percent of Americans over 65 now suffer from Alzheimer type dementia [including multi-stroke and low-pressure hydrocephalus], and another 10% of the elderly population are caregivers to those who have it. Its incidence increases with age, from 1% at age 65, to 7-10% at age 75, and 20 to 25% at age 85.

Early complaints of patients with Alzheimer's disease are usually vague, including anxiety, diminished energy, loss of interest in hobbies and other favorite activities, and mood swings. Typical of this early phase is a "loss of recent memory," typified by an inability to remember what they ate for dinner the night before, although memory of events earlier in life remains fairly normal. Later, as the disease continues and general loss of cognitive thoughts occurs, the patient typically progresses from occasional loss of recognition of loved ones, to a state in which loved ones are only recognized occasionally, and then on to the time when all recognition is lost. At the same time, the patient,s ability to communicate with the world and partake of any enjoyment in living progressively deteriorates, but at variable rates from person to person. In some, withdrawal from all worldly experiences tends to predominate leaving the patient lying and staring at a blank wall, while others maintain an ability to sit oblivious to the world but still able to enjoy music, television, or similar entertainment.

Unfortunately, even when the progressive mental loss allows a diagnosis of Alzheimer's to be made, it is difficult to predict how quickly any specific patient will deteriorate, or whether they will be able to maintain any enjoyment in life as the disease progresses. At the same time, it is probably fair to say that once deterioration has occurred, it is unlikely to reverse significantly in the future. This is important because while it would appear that some of the medications now being tried and developed to treat AD are somewhat effective in delaying deterioration, there is little evidence to suggest significant improvement of previous mental loss or hope for its reversal in the near future. This means once the patient,s thought processes are lost and there is no significant quality of life, it is probably unrealistic to maintain the patient,s life purely in the hope of breakthrough therapy in the near future.

In addition to the above, when considering care and grieving in Alzheimer's disease, it is well to remember that it is a progressive disease which in and of itself leads to death. This fact seems to be largely overlooked, for even though it is one of the most common causes of death in America, most people fail to think of it as being a terminal illness. This probably is so because AD is usually so slowly progressive and because so many patients with AD are old and die of other causes before the AD reaches an end-stage itself. As a result, most people also fail to think of caregiving for patients with AD as involving terminal care with associated anticipatory grief, mourning and bereavement even though these processes are likely to play a major role in adding difficulties and complications to the relationship between the AD patient and caregivers.

16.03 One or Two Individuals

For those who are philosophically inclined, the following gives a brief account of the "one or two individual" issue alluded to as causing a major discussion in the world of ethical commentators in the introduction.

The issue, first raised by a famous ethicist, Rebecca Dresser, is whether an individual who has developed advanced dementia should be considered to be the same individual he or she was before becoming ill or a new individual within the same body -- similar to the question raised years ago as to whether a person with total and permanent amnesia of past events is the same or a different person than they were before for purposes of criminal sentencing.

In the field of ethics, the question typically addressed is whether autonomy requires that decisions made by the individual before they become demented which were based on their then existing relationship with society should continue to control what is done after they have lost any relationship with that society. Alternatively, should the now demented patient be given autonomy through a surrogate decision-maker as if they were a person who never had the capacity to make decisions, for in fact, without the ability to relate to society, decisions would be made very differently. For example, should artificial sustenance be withheld from a patient who wrote a living will forsaking artificial food and fluids if they develop Alzheimer's disease in order to save money for their children, when the patient no longer knows what "money" is, or whom their children are, but now appears to be able to enjoy life sitting and watching television or listening to music?

The law, of course, tends to say it is one and the same individual, but it, too, has trouble, because the law in different states provides for different methods of surrogate decision-making. In some states surrogates must make decisions based on a "substituted judgment," i.e. what the patient has said in the past. In this case the living will and the decisions made by the intelligent person in the past would seem to control. In others, the state requires decisions be based on the patient,s present "best interests," in which case the more reasonable decision would seem to be to ignore the money -- which holds no present interest for the patient -- and base decisions on the patient,s present ability to enjoy life. Putting it in the context of the patient with amnesia, what advantage is there of putting a murderer in jail for life when the person as they now exist has no memory of the past, the murder, the events, the motive, or the person killed?

Medicine, too, must deal with this issue. A common recent issue in medical decision-making as it struggles with advance directive and physician assisted suicide relates to the question of death with dignity. But how does this get applied to a patient with Alzheimer's disease? Whose dignity needs to be considered? The patient,s or the family,s? And if it is the patient,s, which patient -- the former patient when he or she was clear thinking and was disgusted by dirt, or the patient as he or she now exists, who doesn,t even recognize what urine or feces is?

Consider, for example, a previously fastidious individual who now is of limited physical ability (and without a sense of smell) who has decided to keep twenty cats and, because she is occasionally unable to let them out, ends up living with cat droppings and noxious odors in the house. Relatives find it undignified for the individual to live in such a house, but as long as the individual does not find it undignified and maintains decision-making capacity, clearly the law would not support any relative who wants to force a change for the sake of what they perceive to be the individual,s dignity. The patient with decision-making capacity would be given the right to control.

But what if the individual has early AD and can still live alone with a little physical support from neighbors and family members a couple of times a week. If the original person would have found it undignified to live among the cat litter but the present person doesn,t, should the fact the former person would object enable a relative to force the ouster of the cats? And should the relative be legally allowed to claim it is unhealthy as a socially acceptable reason for getting rid of the cats without proving it to be unhealthy? And even if it could be proven to be unhealthy, what value should it be balanced against considering it is the cats which make life worth living for the patient?

Of course, medicine,s main concern is not cats. The big problem is how to make decisions for patients with AD who now readily accept living in social situations they would previously have found to be undignified, even disgusting. Is it really appropriate to make decisions based on what the individual said in the past, or should we base decisions on their present best interests. And should medicine accept the legal division of state on the issue as determining its medical ethics?

In Connecticut, for example, with its total reliance on a substituted judgment standard, this is a particularly difficult problem. Legally, decisions must be made based on the previously stated desires of the patient. Any present communication, coming from a person lacking mental capacity, would not be appropriate for consideration. Thus, we are forced in the direction of following the wishes of the "previous" person or finding an excuse for failing to honor such directives.

In other states where more credence is given to the best interest standard, there is more choice. Under this standard, the decision-maker is free to make a decision based on what he or she thinks is best for the patient, recognizing the previously stated desires of the patient made at a time the patient had a normal relationship to society is entitled to carry considerable weight in the decision-maker,s final decision. But at least under the best interests standard it becomes possible to evaluate the present patient,s apparent desires independent of old statements and old thoughts related to dignity by just asking, "given X,s ability to relate to the world and his or her apparent joys in life, would he or she want to be allowed to live with the cats, or to be institutionalized, or treated medically, or artificially kept alive by artificial feedings at this point in their life?"

Applying this now to our subject, when we think in terms of mourning and terminal care, I wonder whether the same issues unconsciously occupy the minds of family members who become caregivers to loved ones with AD. Do some grieve the loss of the intellectual person and subconsciously consider the existing body to now house a new individual who is no longer the relative they used to be? Do some then end their grieving before death and no longer grieve the loss of a "stranger." When this occurs, does the caregiver feel they are caring for an individual they no longer love or respect? And do some grieve twice, first for the loss of the intellectual being, then the physical being?

Lots of questions with few answers. Maybe some of the readers have thoughts on the subject. I would like to know them if you do.

16.04 Artificial Nutrition and Hydration in Alzheimer's Disease

Eventually, most patients with AD reach a point where they are unable to swallow without food going into their lung, a situation which leads to repeated attacks of potentially fatal chemical (aspiration) and/or infectious pneumonia. This often becomes a defining moment for surrogate decision-makers who must decide for or against the initiation of artificial nutrition and hydration. Unfortunately, even though it is known that placement of the new forms of feeding tubes (PEGs and PEJs) is relatively easy, the decision-maker also realizes that by so doing they are committing to a long term process of maintaining an individual with the most minimal quality of life and at the same time depriving their loved one of one of the few remaining pleasures, the taste of food. And all in the hope of preventing a fatal terminal pneumonia.

Obviously, the question of whether to initiate artificial feeding in patients with AD is easiest if there has been previous input from the patient, but this seldom happens unless the issue has been raised by a skillful attorney when drafting an advance directive. In the absence of such direction, while trying to help the decision-maker decide it is often helpful to consider that in Europe and almost all other countries in this world, even in situations in which socialized medicine covers the cost of tube feedings, artificial sustenance of patients with AD is unusual. In contrast, here in America where the very lack of social financial support leads to guilt when it is not undertaken, tube feeding is usually employed. To many this suggests the decision is largely determined by guilt, the decision-maker not feeling free to say "no" based on the best interest of the patient.

16.05 Suffering and Grieving in Alzheimer's Disease

Early in the course of their illness, patients with AD experience and are typically upset by their waning capabilities and memory difficulties. But as the disease progresses, most patients enter a state in which they are no longer aware of their own failures, no longer worry about death, and no longer relate to the concept of "dignity." At this point further emotional difficulties are experienced far more by the family than the patient, thus altering greatly the normal need to address existential suffering in the patient while increasing the need to address the suffering of the caregivers.

Similarly, to understand the family,s grieving for an AD patient one must begin by recognizing that during the course of the illness, family members are forced to deal simultaneously with the loss of support and companionship previously provided by the patient and with a complex grieving process involving both the loss of the individual as he or she existed in the past and with the further mourning accompanying the loved one,s actual death. To further complicate this problem, the long period of slow deterioration normally associated with Alzheimer,s only adds to the likelihood and extent of anticipatory grief occurring at a time when home care becomes progressively more difficult, leading to increasing internal pressures within the family to institutionalize the patient. This in turn is often associated with guilt, especially when it is known that the patient has previously expressed a desire not to be institutionalized.

Recent commentaries have noted a difference in how families deal with grieving for patients with AD and other diseases. Studies of families who have cared for patient,s with AD suggest the irreversible deterioration accompanying the disease places a caregiver in the agonizing position of watching a loved one lose independence, personhood and human dignity inch by inch independent of thinking in terms of physical death. This series of losses can initiate caregiver grief associated with feelings of a gradual but uncontrollable process of separation and detachment -- a long, drawn-out process of mourning the loss of the previously competent individual which is often described by the caregiver as "saying goodbye for a long time." Strong feelings of powerlessness and ambivalence, wanting to hold on and wanting to let go, are common, and not dissimilar from the same process of grieving which normally occurs after a loved-one,s death.

Caregivers of family members who were still able to respond to affection and with whom some meaningful communication was still possible tend to experience less detachment prior to death with continuation of the grieving process after death much more in keeping with traditional anticipatory grieving merging with post-mortem grief.

In contrast, caregivers who had lost all meaningful communication with their family member prior to death were more likely to report crying, intense sadness, and grief during the caregiving periods, especially when the family member had not recognized the caregiver for some time and when they had not responded to affection or with meaningful communication for ages. In this situation, more than half the survivors said the period of greatest grief was during the caregiving period. Among this group too, family members frequently reported having grieved to the point of establishing the necessary detachment normally associated with the bereavement process and to even admitted that they prayed their family member would die without resulting guilt feelings or lingering sorrow after death. For these individuals, a brief period of intense grief immediately following death was common, as if the full grief process was nearly finalized before death occurred.

The high frequency with which grieving takes place during the care of Alzheimer's patients is suggested by the following report of statements made by those bereaved by an Alzheimer related death:

1. "I couldn,t cry." (23%)

2. "I mourned for months before s/he died." (39%)

3. "I was ready to let him or her go." (77%)

4. "The death was a relief." (77%)

5. "There was grief, but it was different." (23%)

6. "I was ready to get on with life." (31%)

7. "I kept praying that he would die." (23%)

8. "The death was a relief, but I felt guilty." (31%)

Although most survivors followed the above patterns, other families fail to follow either of these patterns for a myriad of reasons. In some, the patient,s loss of intellect which interfered with the bereaved,s ability to work through problems prior to death caused anger in the survivor which was difficult to forgive after death. In others, an overly strong new relationships with the new, now dependent, incompetent patient develops as a substitute for the loss of the competent individual leaving the bereaved with the loss of a whole new relationship to mourn without enough surviving energy to work it through.

16.06 Grief Therapy for Relatives of Patient,s Dying of Alzheimer's Disease

A summary of a recent paper on grief therapy of caretakers for family members with Alzheimer's disease may be helpful to the reader in dealing with the problem. It suggests the need for completing two specific tasks in each of two phases as follows:

Phase I: Reminiscence

In this phase, relatives are encouraged to "tell the story" of their relationship with the patient suffering dementia as he or she existed at a previous time. While listening to the client, the therapist endeavors to facilitate the two tasks encompassed by this phase: making the loss real and encouraging the expression of the bereaved,s resultant affect.

Task 1; Making the loss real.

In instances of "psychic loss," in which the individual remains alive but the relationship is profoundly altered as a result of the illness, the sense the loss is unreal and is fostered by its insidious and often cyclic nature. Relatives of persons with severe dementia often perceive glimmers of the ill person,s former self, which renews undue hopes for a cure and denial of the illness.

In this situation, the therapist should listen intently as the client relates his or her story of the past for specific meanings of the loss to the individual and to encourage acceptance that this loss is final and must be dealt with as such.

Task 2: Encouraging expression of overt and latent affect.

Many affects, including sadness, anger, guilt, anxiety, loneliness, helplessness, and relief, occur as part of a normal acute grieving process, but also occur in instances of psychic loss, and need to be recognized as part of a grieving process which has begun even prior to death.

Phase 2: Readjustment to loss.

A problem-solving approach is used to engage clients and to encourage them to consider all possible ways of meeting the unmet needs deriving from the profound changes in their relationship with their demented relative. In this process the therapist helps the client avoid premature closure or editorializing before generating a thorough list of solutions.

Task 3: Accommodating to the loss through relationships with others.

Relatives of persons with severe dementia tend to seal over the loss by denying their emotional needs in many relationships, not just in the relationship with the demented ill person. The therapist and client may begin the task by examining whether the loss has somehow been generalized to other relationships. "Given the closeness you once had with your father, I,m wondering whether you have gotten all the closeness that you could in other relationships and, if not, whether you have thoughts about how to get more of this feeling with other people?"

Task 4: Accommodating to the loss through the relationship with the demented person.

Unlike the loss by death, in grieving the loss of a person to Alzheimer's disease one must detach both from the original form of the relationship and the new form of relationship based on the relative,s being regressed, passive or oppositional, and in embracing a new way of relating. Rather than saying "goodbye," the client is helped to say "hello" to the healthy partial self which exists in all demented persons.

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Many relatives entering grief therapy appear to be resigned to the idea they can never expect much emotional sustenance from their ill relative.... Clients report they rarely share with their demented relative their own worries or hopes, apart from those directly relating to the care of the ill relative.

"A primary goal in this task is to help the client embrace the idea that all [demented] persons still have a healthy aspect, or partial self. For some clients, particularly those with frequent contact with their ill relative, this task involves helping them make an alliance with their relative,s healthy partial self.... Other clients simply may need a readjustment in the way they think of their ill relative."

For many clients, grief therapy appeared to enrich their relationship with their demented relative, perhaps by helping them to overcome the defenses of denial and intellectualization that had buffered the acute pain of loss.

16.07 Institutionalization of the Alzheimer Patient

Many older people express a desire, often in writing, to remain at home with their family and not be placed in a nursing home, but to do so has many potential shortcomings. First, staying home may become unsafe for the individual, placing extreme pressure on caregivers to insure safety. Second, it may produce tremendous time demands on the family, interfering heavily on their own ability to enjoy life -- a result not in keeping with the patient,s wishes in most cases. Third, especially when one has lost the ability to even recognize the home or a relative, it is hard to understand the desire to stay therein and hard to believe it would still be the wish of the patient who is now demented. Fourth, it produces great guilt in the caring family members when a decision is finally reached to go against the wishes of the individual and have them institutionalized.

This problem has been addressed in many studies. In general, caregivers who have managed to keep their family member at home until the end were less likely to have feelings of guilt, but often at a significant psychic loss. In contrast, individuals who have chosen to put loved ones in nursing homes have often experienced great guilt prior to and at the time of institutionalization, but this guilt usually is short lived when the loved one is found during later visits to have accommodated nicely to the nursing home and to appear safer in day to day living.


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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