AD Caregiver Research: Hope, Hopelessness, and Coping

Within the last 20 years, a significant portion of Alzheimer's disease research has focused on understanding how family caregivers adapt to the stress of caring at home for a relative with the disease. Most studies have concentrated on caregiving burden and have found resulting depression, anxiety, social isolation, and poor physical health; yet not all caregivers experience negative emotional and physical consequences.

Caring for a loved one with AD is undoubtedly stressful. Some caregivers adapt poorly, while others appear to adapt well in the face of seemingly similar adverse conditions. These differences have been the subject of much speculation and some research. Focus groups and interviews with caregivers of people with AD suggest that those who feel hopeless and become depressed during their caregiving go on to experience significant emotional distress and physical illness; whereas those who find meaning in their responsibilities appear to grow emotionally and spiritually.

"In potentially hopeless situations, I've seen tremendous reserves of strength and resolve," says Carol J. Farran, DNSc, RN, FAAN, Director, Education and Information Transfer Core at the Rush-Presbyterian-St. Luke's Alzheimer's Disease Center in Chicago. Dr. Farran has focused on mental health and aging, with an emphasis on caregivers of people with AD. She is interested in understanding how families do well under difficult circumstances, and how they find meaning through this experience. Her most concentrated efforts have been on the topics of hope, hopelessness, finding meaning, and effective caregiver coping.

Hope is elusive because it can be expressed in many ways: in emotions, thoughts, and actions. It's overall function, however, is less mysterious. Caregivers of people with AD often depend on hope as both an emotion based support and a problem-solving strategy. Finding positive value in negative events helps caregivers reduce their emotional distress. Through determination to remain hopeful, those responsible for the care of a person with a long-term final illness seek alternatives, regardless of the situation. If one door is closed, a person with hope seeks another open one. For many caregivers of AD patients, hope cannot be separated from faith, and faith cannot be sustained without hope. Hope and faith are part of a personal, spiritual structure. "It is not an "all or nothing" feeling, but a complicated balancing act, and active struggle." added Dr. Farran. Hope can be characterized as faith in oneself and others, or as a conviction or sense of certainty about something that is, in fact, uncertain.

Hopelessness also is expressed in feeling, thinking and behaving, but in contrast to hope, it often is marked by despair, and a passive sense that little or nothing can be done. A hopeless person exercises little change in feelings or the situation. Two characteristic feelings of hoplessness, discouragement and despair, are familiar to the caregiver of an ill and declining loved one. Caregivers who feel trapped in their situation may suffer from impaired thinking, and consequently have difficulty making or carrying out plans and thinking of options of solving problems. According to Dr. Farran's book, "hopelessness includes a behavioral process in which the person attempts little or takes inappropriate action." "Outcomes associated hopelessness have ranged from negative emotional responses to physicial and mental illness and premature death." Researchers have noted associations between hopelessness and recent changes in relationships, unresolved losses, and feelings of helplessness, and an increased incidence of physical illness.

In Dr. Farran's research on cargiver hope, hopelessness, and finding meaning, she often refers to helplessness as a state of "spiritual muteness" or the "inability to cry out to a Higher Power or to others around them." Questions of "Why?", "Why me?", or "What do I make of this experience?" are common with hopelessness. Caretakers and healthcare practitioners alike are challenged to stand by people who are spiritually mute and help them move through these feelings towards a greater sense of hope.

The conclusion to Dr. Farran's research will be posted next week on the ElderWood Senior Care website under memory care tips.

There are many publications and assistance for caregivers in the community. For additional ideas and assistance, feel free to contact the Alzheimer's Association at (716) 626-0600.