Academic journal article Scholarly Inquiry for Nursing Practice

The Long Gray Tunnel: The Day-to-Day Experience of Spouse Caregivers of People with Alzheimer's Disease

Academic journal article Scholarly Inquiry for Nursing Practice

The Long Gray Tunnel: The Day-to-Day Experience of Spouse Caregivers of People with Alzheimer's Disease

Article excerpt

This phenomenological study provided the means to describe the day-today experience of living with and caring for people with Alzheimer's disease (AD). Twelve participants, 10 females and 2 males, were interviewed using a semistructured in-depth audiotaped interview technique. Data were analyzed according to protocols adapted from Colaizzi's (1978) descriptive phenomenological method.

Through the analysis of data nine themes emerged:

1. there is an overall sense of uncertainty that is dealt with one day at a time;

2. changes in the spouse and the spousal relationship create a climate in which fidelity to care survives;

3. as the person with Alzheimer's deteriorates, the spouse caregiver develops power;

4. coping with this illness trajectory leads to continual watchfulness and strategies to keep the impaired spouse healthy and safe;

5. hospitalization of the impaired spouse cultivates a sense of advocacy in the caregiver;

6. the caregiver experiences concern for the impaired spouse's future as the spouse caregiver's health shows signs of decline;

7. financial concern emerges as the spouse caregiver makes decisions as a couple of "one";

8. coping with living with and caring for a spouse with AD involved the use of humor; and

9. coping with living with and caring for a spouse with AD occurs through faith.

Some of the findings of this study support previous research; however, the findings pointing to the growing power of the spouse and the emergence of a fidelity to care are unique. Additionally, the invisibility of nursing from the perspective of the spouse caregivers was revealed.

Four million Americans have Alzheimer's disease (AD) with a dramatic increase expected in the next century, if a cure is not found (Alzheimer's Association, 1993; Mackenzie, 1998). Guttman, Altman, and Nielsen (1999) report that based upon longer life projections, AD is expected to afflict 14 million people over the next few decades. According to Monahan and Hooker (1997), "the nature and complexity o f . . . caregiving tasks have driven up the overall costs of enabling a cognitively impaired adult to remain at home" (p. 285). Leon, Cheng, and Neumann (1998) report that the 1996 annual costs of caring for patients with mild, moderate, and severe AD were $ 18,408, $30,096, and $36,132, respectively. They further indicate that annual institutional cost savings of $9,132 are possible if residential settings are used. Ory, Hoffman, Yee, Tennstedt and Schultz (1999), in a study of family caregivers (N= 1500), found that dementia caregivers spend significantly more hours per week than other family caregivers providing care and sustain greater employment complications, caregiver strain, and mental and physical health problems. The primary caregiver to the married victim of Alzheimer's disease has been identified as the spouse (Cummings, 1996; Moody, 1994), who struggles daily with these issues.

The purpose of this study was to describe the experience of spouse caregivers of people with AD in order to contribute to the understanding of their day-to-day experience. An understanding of the day-to-day experience of living with and caring for people with Alzheimer's disease is essential to meaningful and appropriate nursing interventions for spouse caregivers of persons with AD. Such knowledge can be used to assist caregivers in promoting their own quality of life and health outcomes and, ultimately, those of their AD spouses. In addition to the positive effects on the well-being of spouses, this type of knowledge may ultimately enable people with Alzheimer's disease to remain at home for a longer period of time. Through appropriate nursing intervention, nursing has the potential to play a key role in helping to preserve the health of the caregiver and to assist the spouse caregiver to deal with the high costs of dementia.

REVIEW OF THE LITERATURE

Literature review focused primarily on the areas of Alzheimer's disease, the chronic illness trajectory, uncertainty, and spouse caregivers. …

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