Dementia and the Family: Intrapsychic and Interpersonal Issues

Introduction

The treatment of patients with dementia is often complex and may be fraught with difficult decisions for the physician, care manager, and family. There are a number of conflicts and dilemmas that often arise as family members confront unacceptable changes in their parent or spouse, and attempt to negotiate community and governmental organizations that deal with aging and dementia.

There is a growing literature on benefits of psychotherapeutic support for family caregivers.^1,2 The reports generally focus on global outlines of approaches or specific tactics and practical interventions. Relief of caregiver burden also requires an appreciation of family members’ particular interpersonal issues that can interfere with management of the target behaviors. Misunderstandings and unnecessary conflicts may add to the many problems confronting family caregivers.³

This article addresses five specific challenges that frequently require a great deal of clarification, education, and other supportive measures. They arise from deep-seated patterns necessitating change or modification. The five areas of concern are: (1) refusal to accept the need for role reversal; (2) inability to distinguish between innate personality and impaired behavior secondary to cognitive change; (3) the emergence of a family battleground in the context of the patient’s decline; (4) overinvolvement and underinvolvement in care and decision-making; and (5) guilt and other factors interfering with an effective interface with potential support systems.

Role Reversal

When an elderly person develops a dementia, spouses and children are called upon to assume roles and responsibilities that are foreign to them. Their world of life-long established relationships has been overturned, and it can be very difficult to perceive and accept the changes. While problems may be particularly severe if the family member with dementia has been a strong authority figure, dilemmas are not limited to that scenario. No matter how dominant a character the patient may or may not have been, complex feelings, both conscious and unconscious, can serve to inhibit family caregivers from asserting themselves appropriately.

Perhaps the most common instance of a role reversal quandary is the need for children to make clear-cut decisions that conflict with the patient’s stated wishes. Even though the children may have no doubt about the wisdom of a given approach, they may defer to the individual with dementia and express a sense of helplessness and frustration.

When this occurs, the treatment team (doctor, care manager, and therapist) must focus on the dilemma felt by the family caregiver by emphasizing his or her underlying fears and conflicts. Ultimately, the goal is for the caregiver to recognize the advantage to the patient of obtaining optimal care, perhaps by overruling the objections of the incapacitated parent or spouse. In the process, the caregiver may approach this superficially and practically, or may experience a more profound exploration of his or her relationship with the person with dementia.

Innate Personality Versus Pathology

The second dilemma that may confront clinicians concerns the family caregiver’s perception of patient behaviors as fundamentally consistent with longstanding patterns. A prime example is the notion that the patient is being stubborn, just like he or she always has been. The family can be insistent that the patient is just being difficult. The clinician notes a stark discrepancy between this stance and the obvious fact that the patient is acting within a confused and impaired mental state. It is often the case that the caregivers are responding to a caricature of the patient’s former characteristic responses. Even though this may be extreme to the point of near parody, children and spouses can fail to appreciate the divergence from the past.

These caregivers respond with a flood of anger. They are reacting not just to the present situation, but to untold events, perceived insults, and frustrations that were never resolved before the dementia. There may be a sense that resolution is now impossible.

The clinician can acknowledge the family’s portrayal of prior personality traits in the patient, but can then also emphasize the changes he or she observes in the patient. It is clearly important to allow family members to feel safe in expressing the frustration, anger, and loss.

Family Divisions

A difficult constellation of issues arises for the doctor, therapist, or care manager when highly charged divisions appear between family members. There may be many determinants of these conflicts, including sibling rivalries, differential treatment of children by the parent with dementia, intergenerational discord, financial expectations, and even family myths. Whatever the underlying causes may be, the individuals involved displace it all onto patient care issues and decisions. In such an atmosphere, little can be accomplished.

This can be a treacherous terrain for the clinician when various individuals demand support of their position and a rejection of other family members’ views. The family member may demean the motives and actions of the doctor and other team members, may try to split allegiances within the treatment team, may threaten legal actions, or may jeopardize any hope of resolving important patient care questions.

The therapeutic approach is manifold. The usual practice of limiting calls and contacts to one, or maybe two, select family members should be superseded by the need to maintain communication with all factions as long as it is feasible and advisable. Efforts to mediate the discord may be made. The clinician may need to set limits on verbal abuse by some individuals. Throughout the process, there must be cognizance of possible medical-legal issues to be confronted at a later date. Above all, the clinician must be guided by the soundest and safest treatment plan, and this should serve as the essence of the message to all sides of the issues.

Degree of Involvement

It is the experience of virtually all people who treat patients with dementia that there are relatives who are considerably outside the normative expectations for involvement in the patient’s care. There can be overinvolvement or underinvolvement.

Excessive caregiving is sometimes provided by elderly spouses. There may be rejection of assistance from home health aides and from relatives. Despite their own infirmities, the spouses exhaust themselves physically and mentally. They may become demanding of facility staff, accusing them of ignorance, lack of concern, and even abuse.

An abundance of underlying guilt is present in these cases. There is also often identification with the patient and a fear that this generates. Finally, there is sadness, and perhaps depression, over the perceived losses. Psychotherapy and pharmacotherapy directed at these targets can be helpful.

The same feelings of guilt (along with shame), fear, and depression may lead family members to shirk responsibilities and try to flee from the situation. Sensitivity to these underlying feelings helps in addressing the discomfort of caregiving.

Community Interface

Family caregivers confront an array of organizations and systems involved in the care of their relatives with dementia. These may include staff at residential and nursing home facilities, governmental programs, and protective services. Contacts may prove problematic for a number of reasons. Family may find themselves sidelined to an uncomfortable degree.

In some cases, families are treated with suspicion and even hostility. There have been many instances of distortions. This is best illustrated by a case in which a married couple, both with early dementia, began to complain delusionally at their assisted living facility that their children were stealing their money. In short order, the children were accused and investigated by a state agency that protects the elderly. The agency conveyed a sense of “guilty until proven innocent.” The family was subjected to emotional and financial stress as they attempted to cope with the situation. The children felt that the agency was getting between them and their parents, and they responded with a confused mix of anger and helplessness.

Therapeutic attention may be directed to the clarification of what is actually occurring. There is often a tendency for family members to become more passive in the context of these challenges, and the passivity is often related to guilt that has nothing to do with the matter at hand. The doctor, therapist, or care manager must address this.

Conclusions

Family caregiver support is essential to the overall treatment of the patient with dementia. The process of support is aided by an appreciation of the common intrapsychic and interpersonal conflicts, underlying affects, and struggles of the caregiver. Armed with this knowledge, the professional is better equipped to provide optimal care for the family and the patient.

The author reports no relevant financial relationships.

Dr. Serby is Associate Chairman, Department of Psychiatry and Behavioral Sciences, Beth Israel Medical Center, and Professor of Clinical Psychiatry, Albert Einstein College of Medicine, New York, NY.