Alzheimer's is a progressive form of dementia that is characterized by an impairment of intellectual function. The one essential feature of the disease that must be present for diagnosis is memory impairment. Other symptoms include repeating statements frequently, getting lost on familiar routes, personality changes, and misplacing items. As the disease progresses, the symptoms include: hallucinations, violent behavior, delusions, loss of memory about past events including life history, and forgetting who certain people are. The disease is characterized by neurofibrillary tangles and neuretic plaques found in the brain. Not only does the disease cause structural problems in the brain, but it also causes chemical problems due to neuron destruction, which leads to a decrease in neurotransmitters. Because the disease is progressive, but is not physically debilitating many times the primary caregivers is family. Eventually a nursing home or other care facility may be needed. Many studies have been done to determine the effects of the disease on the caregivers.
Many studies have been done to determine the effects of chronic debilitating diseases on family and caregivers. Studies look at the diseases effect psychologically, economically, and functionally. One such study done by Morton Lieberman and Lawrence Fisher, focused on the impact of chronic illness on the health and well being of family members. The study was based on the idea that demands are placed on a family due to a chronic illness. They wanted to determine how most families respond and interpret these demands. They did a cross-sectional study of 97 families composed of 67 men and 30 women diagnosed as suffering from Alzheimer's, as well as their 97 spouses, 201 offspring, and 97 in-laws. The sample was drawn from a group of four San Francisco Bay area university-based Alzheimer's clinics that were developed by the State of California's Department of Health. They developed a stress model that balanced the stresses of the disease with the resources and strengths of the family. The study's framework consisted of five basic assumptions. The first is that the demand that was placed on the family was directly related to the severity of the patient's illness. Second, the amount of hours spent by the second-generation giving care to help out the first generation caregiver was an index of day-to-day involvement. Third, gender plays a role, which is proved in previous studies that found female caregivers experience more stress because they provide the most care. Fourth, services provided by the community aided in coping with the disease. Lastly, not only does the disease affect the spouse, but also it is a burden to all members of the nuclear family. The severity of the illness was determined by seven factors: level of cognitive disturbance, level of functioning, number of psychiatric symptoms, number of neurological signs and symptoms, other health problems, patient behavioral problems, and length of time since onset of dementia symptoms in years. The average number of care hours provided by family is as follows: male offspring 4.5, female offspring 7.1, male in-laws 3.2, and female in-laws 5.1 hours per week. Services were also divided into two groups of extra familial sources through professional and community based programs, as well as direct ADL/IADL help offered by second generation family members. Health and well-being were divided into three measures: somatic symptoms, anxiety and depression, and well-being. The results showed that severity of the disease contributed to higher somatic symptoms, higher anxiety and depression, as well as a lower well-being for the spouse. However, services did not produce any significant benefits. For the offspring severity and somatic symptoms were positively correlated. Services for the patient lowered the offspring's somatic symptoms. The in-laws showed a positive correlation between somatic symptoms and severity, however, there wasn't a difference between the other two.
Marcia Neundorfer, McKee McClendon, Kathleen Smyth, Jon Stuckey, Milton Strauss, and Marian Patterson did a second study that demonstrated the effects of Alzheimer's disease on family and caregivers. Their study focused on the effects, over time, of depressive symptoms in people with Alzheimer's, as well as their family caregivers. This study was done using a multilevel analysis. The participants of the study were 353 people with dementia who were enrolled in the University Hospitals of Cleveland/Case Western Reserve University Alzheimer's Disease Research Center, and their family caregivers. The design of the study was to collect data of the patients from their first visit and each subsequent annual visit through the use of questionnaires. The measures that were used on the patients were the duration of illness, basic activities of daily living, instrumental activities of daily living, and depressive symptoms. The duration of illness was defined as the date of the earliest sign of possible symptoms. Activities of daily living were measured using the Cleveland Scale for Activities of Daily Living. A trained examiner as well as the caregiver administers the test. Depressive symptoms were measured by the Consortium to Establish a Registry for Alzheimer's Disease Behavior Rating Scale for Dementia. The measures for the caregiver include gender, relationship, self-rated health, and caregiver depression. Self-rated health was defined by asking the caregiver to rate their health on a scale of 1 to 5. Depression was measured by the Center for Epidemiological Studies-Depression scale. The results were similar to the first study described. The higher the dependency in instrumental activities of daily living the more depressive symptoms in the patient. There was found to be a positive correlation between more patient depressive symptoms and caregiver depression. The acceleration of patient depressive symptoms did not, however, predict acceleration in caregiver depression. Greater dependency in activities of daily living as well as a shorter duration of illness predicted greater depression of caregivers. If patient depressive symptoms increased at a rapid rate, then so did caregiver depression. However, caregiver depression increased and then leveled off.
Geila Bar-David did a third study that demonstrated the effects of Alzheimer's disease on caregivers. This study was done to find, describe, and interpret a process that a caregiver goes through as they take care of their family member with Alzheimer's disease. This is a qualitative study that outlines the three phases of development that a caregiver goes through. The sample consisted of 16 primary caregivers from the Metropolitan Toronto Alzheimer's Society. The study consisted of interviews done over a 4-year period. Each person was interviewed from 1 to 3 times during the time that they cared for their relative with Alzheimer's. The interviews were conducted in the caregiver's home and they lasted anywhere from an hour to an hour and a half. The question that the interviewer asked each caregiver was, "Can you describe to me what it has been like for you to be a caregiver for your wife/husband/mother since the time you found out that your wife/husband/mother had Alzheimer's?" The caregiver was then allowed to respond openly to the question. The care giving began when the caregiver first found out the diagnosis of their relative. The caregiver's responded in ways such as, "You just throw your hands up, you just can't do it any longer" and, "I get really depressed." "I would just like to go to sleep and not wake up. It's such a strong desire." Caregivers expressed their desire to be able to communicate with the patient, but they continually got frustrated because they could not. The next step was to institutionalize the patient because they could no longer care for them. They would still visit them everyday or very frequently because it was part of their routine. After a while they made the transition back into their normal lives. Following the institution of the patient, they realized they had taken for granted their own health and vitality before dealing and taking care of the patient. They also developed a caring capacity for others. Many of them went on to do volunteer work with Alzheimer's patients. They felt that they now had a purpose in life. The first phase occurred when the caregiver realized the relative had a problem. The second phase occurred when the caregiver developed the capacity for self-care. The third phase occurs when the caregivers begin to give time and effort to caring for others. The fundamental change found in caregivers determined from this study was the fact that the caregiver has an enhanced capacity for caring. The caregiver also has an extended capacity of the self. The study defined this term as the altruistic self, which means that the caregiver becomes selfless and becomes more concerned for the welfare of others.
In conclusion, there are both negative as well as positive effects on the caregivers who take care of relatives with Alzheimer's disease. There tends to be more depression and anxiety as well a lower sense of well-being for caregivers. However, studies show that following the institution or death of the relative there is an improvement of the self. Providing care for a relative with Alzheimer's is a hard task, but as shown by these studies it affects the caregiver in all aspects of life yet a greater sense of self and respect or life follows the end of care giving.
Bar-David, Geila. (1999). Three phase development of caring capacity in primary caregivers for relatives with Alzheimer's disease. Journal of Aging Studies, 13(2), 177-197.
Lieberman, Morton, Fisher, Lawrence. (1995). The impact of chronic illness on the health and well-being of family members. Gerontologist, 35(1), 92-102.
Neundorfer, Marcia, et al. (2001). A Longitudinal Study of the relationship between levels of depression among persons with Alzheimer's disease and levels of depression among their family caregivers. Journal of Gerontolgy, 56(5), 301-313.
Contributed by Christen Davids, October 5, 2001.