Annals of Long Term Care

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.