Psychiatric Annals

MANAGEMENT OF ALZHEIMER'S DISEASE 

Families in Distress: Caring Is More Than Loving

Carl Eisdorfer, PhD, MD

Abstract

A social contract enhancing and strengthening i'amily values is a consistent feature of most societies. In our western cultures, the biblical commandment of homage to one's parents and the vows of marriage, sanctified by ecclesiastical as well as civil law, are reminders of the emotional and legal power of family ties. It is expected then that the care IOr an ill and infirm individual would naturally fall to the family, particularly to the closest able relative. The tradition is clear - parents care for their children and children are. supposed U> eary for their parents. Of course, caring is not only an obligation, it is also an opportunity, despite its challenges. There are many positive rewards - a sense of personal fulfillment, reconnecting with a loving parent, a coming together of family for a common good, becoming pari of a tradition, and many others.

A number of important demographic factors have been emerging over the course of the past century. There are more older and more dependent persons in all parts of the world. Increasing longevity, coupled with the fact that more individuals with special needs are surviving childhood, has resulted in extending the need for caregiving. This need is spearheaded by a changing age pattern so that not only are there more elderly, but there are more older and frail elderly. At the same time, the decrease in fertility over the past several decades in our country has resulted in a relative decrease in the number of younger and middle-aged workers who must support dependent members of the society at both ends of the age spectrum - the very young and the dependent aged. This dynamic situation dramatically underscores the need to understand the role of the family in caregiving.

THE SCOPE OF THE PROBLEM

The dementias alone affect about 10% of the aged and the number and proportion are growing with the aging of the population. It is worth remembering that the prevalence of latelife dementia doubles with every 5 years of life among the population over age 65. This doubling is true for a variety of conditions, including hip fractures and other medical disabilities, and is one of the bittersweet consequences of our increasing longevity. It is reasonably estimated that about 8CKf of those who are frail or for some other reason unable to care for themselves are cared for at home by family. Approximately 2.5 to 3 million caregivers in the United States are involved in helping with Aìzheimer's disease alone - about 10 million for ail problems combined including the older developmontally disabled.1

Caregiving entails a range of demands - physical, economic, emotional, and temporal. The more severely impaired patient may require assistance with the activities of daily living such as eating, dressing, bathing, and toileting. Some patients may require lifting and turning, many will cause caregivers the turmoil of long nights and repeatedly interrupted sleep. Being subject to the same questions again and again is emotionally exhausting as is becoming the target of suspiciousness. including paranoia. Needing to drive a confused patient to medical appointments where they may become agitated and even physically violent is frightening; abuse of caregivers is not a rare event. For some caregivers, worst of all is the isolation that results when friends and family stay away so thai Uiey do not have to deal with the patient. These and the ongoing financial burden are among the elements that make caregiving so stressful as to be the basis for significant dysfunction and susceptibility to disease.

Finally, what has been called the "loss of self,"' watching a loved one lose the…

A social contract enhancing and strengthening i'amily values is a consistent feature of most societies. In our western cultures, the biblical commandment of homage to one's parents and the vows of marriage, sanctified by ecclesiastical as well as civil law, are reminders of the emotional and legal power of family ties. It is expected then that the care IOr an ill and infirm individual would naturally fall to the family, particularly to the closest able relative. The tradition is clear - parents care for their children and children are. supposed U> eary for their parents. Of course, caring is not only an obligation, it is also an opportunity, despite its challenges. There are many positive rewards - a sense of personal fulfillment, reconnecting with a loving parent, a coming together of family for a common good, becoming pari of a tradition, and many others.

A number of important demographic factors have been emerging over the course of the past century. There are more older and more dependent persons in all parts of the world. Increasing longevity, coupled with the fact that more individuals with special needs are surviving childhood, has resulted in extending the need for caregiving. This need is spearheaded by a changing age pattern so that not only are there more elderly, but there are more older and frail elderly. At the same time, the decrease in fertility over the past several decades in our country has resulted in a relative decrease in the number of younger and middle-aged workers who must support dependent members of the society at both ends of the age spectrum - the very young and the dependent aged. This dynamic situation dramatically underscores the need to understand the role of the family in caregiving.

THE SCOPE OF THE PROBLEM

The dementias alone affect about 10% of the aged and the number and proportion are growing with the aging of the population. It is worth remembering that the prevalence of latelife dementia doubles with every 5 years of life among the population over age 65. This doubling is true for a variety of conditions, including hip fractures and other medical disabilities, and is one of the bittersweet consequences of our increasing longevity. It is reasonably estimated that about 8CKf of those who are frail or for some other reason unable to care for themselves are cared for at home by family. Approximately 2.5 to 3 million caregivers in the United States are involved in helping with Aìzheimer's disease alone - about 10 million for ail problems combined including the older developmontally disabled.1

Caregiving entails a range of demands - physical, economic, emotional, and temporal. The more severely impaired patient may require assistance with the activities of daily living such as eating, dressing, bathing, and toileting. Some patients may require lifting and turning, many will cause caregivers the turmoil of long nights and repeatedly interrupted sleep. Being subject to the same questions again and again is emotionally exhausting as is becoming the target of suspiciousness. including paranoia. Needing to drive a confused patient to medical appointments where they may become agitated and even physically violent is frightening; abuse of caregivers is not a rare event. For some caregivers, worst of all is the isolation that results when friends and family stay away so thai Uiey do not have to deal with the patient. These and the ongoing financial burden are among the elements that make caregiving so stressful as to be the basis for significant dysfunction and susceptibility to disease.

Finally, what has been called the "loss of self,"' watching a loved one lose the awareness and memories oí a lifetime, is particularly stressful. If the patient is no longer able to recognize the loving caregiver, this i.s a terribïe blow causing considerable grief

Although most families do care, the assumption that all family members are willing and able to shoulder the burden of care is flawed. Motivation notwithstanding, not all families are equipped to deal with the special needs of the infirm and mentally impaired. As the title of this article reflects, "caring is more than loving." Many families make a concerted effort, to provide care but, despite their best efforts, the scope and extent of the need and the burden that it puts on family members who are responsible for the provision of care creates overwhelming problems. Every physician is trained in the primary rule of medicine - "Primum non nocere" ("First do no harm'') - yet as we shall see, the caregiving role can become so stressful as to be quite harmful to caregivers as well as to other members in the famiiy.

A substantial body of research literature now demonstrates that caregiving carries with it a rather striking risk for those providing the care. In 1988, Cohen and Eisdorfer1 reported that the principal caregiver for a patient with Alzheimer's disease, living at. home with the impaired family member, stood a better than 509Í chance of becoming clinically depressed. Schulz and his colleagues"1 reviewed 30 research studies and reported in 1990 that depression, insomnia, headaches, and irritability were very common. Studies of the impact oí' caregiving have expanded rapidly since then with reports that family caregivers are

* more likely to be on psychotropic medications such as antianxiety or antidepre.ssant drugs,

* more likely to show alterations in their immune system that make them less resistant to outside infections,

* more likely to get medical attention (in some studies, while in others loss likely until after the patient is in a nursing home or deceased!.

* and that many have experienced economic hardships and lifestyle changes.

The data further show that women are much more likely to suffer than are men of the same degree of kinship. Tn a report of 500 family caregivers,7' wives were likely ?? be suffering from depression in more than 60'/? of the cases, whereas husbands in the same study showed a 4(K? likelihood of depression, daughters or daughters-in-law were at equal risk, ie, 349Í, whereas sons were at 28'/r . The problem is by no means restricted to caregivers for patients with Alzheimer's disease. Similar data have been found in those caring for patients with severe heart disease, for quadriplegic young men after accidents, for patients with Parkmson's disease, and for those with other chronic debilitating conditions requiring a high degree of care and with little hope for improvement of the patient.

THE ROLE OF CULTURE

Culture plays an important role in caregiving. In a review of the studies of black and white American caregivers, several investigators have found thai black caregivers report significantly less burden compared with their white counterparts. It has been suggested1' that the difference may lie in the way in which burden is conceptualized. Caregivers from larger households show less burden, especially among black caregivers who derive much support from extended family members - non-familial kin. which includes what sociologists call fictive relationships, individuals identified as kin who have no blood tie to the rest, of the family but who play a valued roie in sharing responsibilities with the family.

Studies report that impairment in the instrumental activities of daily living, memory, and behavior problems were less stressful for blacks than Cor their white counterparts and that black caregivers were more confident in their ability to handle family members. It is interesting in this context that it was also found that black caregivers were less fikely to seek information about the disease and the formal services available than were the whites. Blacks used prayer as a dominant coping response, whereas whites used more cognitive strategies, including more professional help, venting feelings through anger, crying, and problem-solving strategies. Ail caregivers favored the help of relatives with caregiving.

An important cultural distinction i.s seen for Hispanic Americans. Among Cubans, for example, the oldest, daughters are the expected caregivers even when a spouse is available. For many Hispanic families, getting professional help for caregiving signifies that the family caregiver was not assuming proper responsibility so that Hispanic caregivers who, like their black and white counterparts, are well informed about the availability of resources, did not necessarily use them or used such resources later in the disease process. The caveat is that, with a number of Hispanic cultures, this may not be a universal phenomenon.

RISK FACTORS FOR PROBLEMS

Among caregivers, women experiencing stressful life events (eg, a significant loss, lack of support from family or social network or being cniicized by the family, ieelings of burden, economic hardships, and perceived loss of control) are at increased risk for depression.

The characteristics of the patient that overwhelm caregivers include depression in the patient, the degree to which the caregiver has to deal with behavioral problems such as wandering, screaming, or destruction of property, and in a few studies, the loss of ability to care for oneself in at least three different activities of daily living.

Interventions

A variety of supports are designed to help patients and caregivers. These include opportunities for evaluation and counseling, direct care services both for the patient and the caregiver. supportive groups, personal counseling, providing knowledge about Alzheimer's disease, specific skills aimed at decreasing caregivers' stress, respite care, case management, and day care services.7,8

The data on the effectiveness of these strategies are equivocal. Support groups are valuable and caregivers seem to want the information sharing and peer support. Some individual caregivers, however, seem to find it difficult to express their guilt, anger, and fear in such supportive/didactic groups. Informal support networks do help, but here the data are limited. Part of the problem may be in the way these support groups are organized and how they i'unction relative to the diagnosis and the caregiver role. Individual and family counseling does play a positive role, but very often the caregiver finds it hard to break away from the patient to attend these sessions or, indeed, to admit to the challenges of caregiving. Some studies" indicate that individual counseling is superior to group counseling, but once again, the results vary.

An improvement in the caregivers1 social network has positive effects. In one study that compared professional« to trained peer counselors, the professionals were able to produce a better outcome in level uf caregiver symptomatology and the ability to reíate to the patient. Respite care such as day care, home respite, and institutional respite shows a modest positive effect, in some instances; however, such programs are particularly valuable hecause they make possible the separation of the caregiver and the patient and can start the process that prepares the overburdened caregiver to allow the patient to move to a nursing home gradually without seeing this as a great personal fail ure. Teaching family members how to change patient behaviors may also have a positive effect. Decreased caregiver anxiety and depression are positive results from relaxation training. Some programs provide a comprehensive range of services and (caregiving) treatments to everyone; predictably, it is hard to judge the efficacy of these treatments.

Although in general it seems that more is better, how much better and at what cost is becoming a frequently asked question. Indeed, as Bourgeois and colîeaguesm have reported, more may not always be better, it may just be more expensive. A major problem with community programs is that they still reach relatively few people and we need more information on effective ness.

Why Care?

An array of reasons exist for providing care to dependent older relatives. ' ' These reasons include personal values, setting an example for one's children, the continuing (if a tradition, and even completing the agenda of life with one's parents. Some of these factors include

* Love - perhaps our most powerful force, yet one about which we know so little as scientists or clinicians;

* Equity - the sense of obligation that one feels based on what we received as a child or in the spousal relationship;

* Morality - a concern about what is correct behavior for anyone in our society;

* Ethics - the sense of concern for what others in the community will believe if we do not adequately care for our loved one:

* Greed - I append this last, and with reluctance, but too many examples arise to ignore this, particularly in its disruption of families.

On a persona] level, helping someone you love is an indescribably rewarding experience, but what, if the caregiver to a parent or spouse must shoulder other responsibilities? This group has been described as "caught in ihr middle." The adult child who has her own spouse, children, and job and is caring for a parent is presented with a very basic conflict. Should one take the family savings earmarked for a child's college education and spend it on an elderly parent or needy relative to avoid placing them in a nursing home? How much should one sacrifice in defense of equity? How should you apportion your time?

Caring teaches you about yourself and your charge. It puts you in a new role, but one that has some serious pitfalls. The concept of the caregiver as a surrogate parent creates problems. It may even explain why women are more vulnerable than men. Women are more likely to care by mothering, whereas men see caring as a different kind of job.

A mother provides total care, is respected as a mother, and, with hard work and reasonable luck, sees her children grow in maturity and independence. Mothering one's mother is like taking a walk in a mine field. Parents do not relinquish their roles with age; they rarely become more physically or mentally independent; they may make unrealistic demands or may reject care by refusing to be a burden, thus making a bad situation worse. Treating a parent or any adult like a child rather than as an adult with special needs is asking for trouble. Distant brothers and sisters who may second-guess your every move and add to your burden arc a potential problem.

Men in our current society are more likely to recruit others to do the jo)) while they 7'etaiii a supervisory role. Ui" course, this approach does not always work, particularly if there is no one to call.

Caregiving is not a one-time thing. Patients change, families change, and not every family is available to help all the time. A few questions need to be addressed to the family by the professionals who evaluate the patient and manage the problem. It is also for the family caregiver to know because caregiving is a family pvuject. It is important to understand the family's ability to provide care as a team.

1. What is the state of the family - is it organized, disorganized, functional, dysfunctional?

2. What does the family know about medical u r psychological problems?

3. Are there any major physical problems in family members?

4. Afe there any psychiatric problems in close relatives?

5. Are there any major recent losses that affect the family?

Caring is not merely a social or external process, it is internal as well, and most of us nued to master a number of steps to be able to cope effectively. Among the most important lessons to learn in caregiving is not to be heroic. This job is not a solo one, and the more help you can get, the butter off you are likely to be and the better off your loved one will be. Skills need to be mastered, and the following points may help the caregiver.11-10

1. Recognize and prioritize problems.

2. Overcome denial.

3. Manage emotions.

4. Build collaborative partnerships.

5. Balance needs and resources.

6. Take control in a crisis.

7. Let go and move on.

About 1 5 years ago. in the foreword to a book on aging in primitive cultures, entitled O//Jtv Whys r)/T?mfi'mg O/c/," I pointed out that it was inaccurate to believe in a golden age of pr eliterat e society, a iid that even now in our teclinulogically advanced culture, families provide much of the care ibr their ciders. It is estimated that áO'V of the care ibr our frail coders is provided in thp mmmunity by families. Care and love lavished on children and grandchildren is almost always repaid, if not out of affection, then out of some other motivation. On the other hand, many patients old and young have special needs, and these needs may overwhelm the ability of a family caregiver trying to cope at home. It was clear then, and is more obvious now. that within a society when resources diminish in relation to needs, problems emerge. Victims become villains and arc seen as too demanding if we believe that the balance between the cost of caring for dependent persons compartid with their contnbution ta the group is creating a deficit. When the inclination to provide cart* by the community is jeopardized, it places a greater burden on the family. It is clear then that overburdened families will be put under even greater stress, which in turn will be a threat to the larger community that, in the last analysis, has the family as its basic unit.

REFERENCES

1. Stone Rl. Kemper P. Spouses and children of' disabled olders: how large a constituency for long term care reform? Milbank Q. 1989; 67:485-506.

2. Cohen D, Eisdorfer C. loss of Self. New York. NY: WW Norton & Co. Inc; 1966.

3. Cohen D. Eisdorfer C. Df passion in family members caring for a relative with Alzheimer'a disease. J Am Geriatr Soc. 19SS: 36:835-889.

4. Schuls, R. Visintainer P. Williamson GM. Psychiatric and physical morbidity effects of caregiving. J Gerotol. 1990 45i5r: 181- 191.

5. Cohen D. I .,ut/hi ne D. Eirdorfer C. et al. L'a ring for relatives with Alzhuimer's disease: the menta] health risks to spouse?, adult children, and other family caregiver. Behavior Health and Aging Vol. I New York. NY: Springer Publiching 1990.

6. Gonzales E. Gitlin LN, Lyons KJ. Review of the literature on African American ca regi ver s of indi v idusts with dementia. Journal of Cultural Diversity. 1995;2120:40-48.

7. Eisdorier C. Olaen E. Management of patient g with Alzheiincr's and related dementias. Med Clin North Am. 1994; 78:940.

8. Eisdorfer G. Community reriourfes und thf mrmagement of dementia patients Med Clin north Am. 1994: 78:869-870.

9. Srhulz R. O'Brk'n AT. Uookwala J, Fleisaner K. Psychiatric and physical morbidity efforts of dementia caregiv ing: prevalence, correlates, and csusHs. The Gerontologist. In press.

10. Burgeois MS, Schulz R. Burgo L. Intervention for caregivers of patients with Alzheimer's didease a review and analysis of content, procesa, and outcomes. Int J AGing Hum Dev. In Press.

11. Cohen D. Eisdorfer C. Caring for Your Aging Parents A Planning and Action Guide. Los Angeles/New York: JP Tarcher/Putnam: 1993.

12. Eisdorier C. The implications of public policy of other ways of growing old. In: Amoss P. Harrell S. eds. other Ways of Growing Old. Stanford . Calif: Stanford University Press: 1981:xxiii-xxi.

10.3928/0048-5713-19960501-10

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