In sickness and in health: a qualitative study of elderly men who care for wives with dementia.

1. Introduction

Caring for an aging population presents an extraordinary global challenge, especially for the most rapidly growing segment of the elderly population, the oldest and most frail. In the United States, despite the myth of abandonment and "dumping" of the elderly by uncaring families, most frail elderly individuals, even those with serious disabilities, live in their homes and are cared for by a family member (Pruchno, Michaels, & Potashnik, 1990).

Who, then, cares for frail elderly individuals? Traditionally, the question has been overwhelmingly answered in the female voice. In the wings of the caregiving arena, however, are men (husbands, sons, brothers, and other male relatives) who care for elderly family members. Their ranks are predicted to increase as an aging society enters the new millennium, men's mortality declines (Himes, 1992), and conceptions of family and gender roles continue to broaden. Well over 1,750,000 million men, 1/3 of primary caregivers in some settings, care for ill elderly family member. Of that number, it is estimated that approximately 1,000,000 are elderly men caring for spouses with Alzheimer's disease or other forms of dementia, which often coexists with other physical ailments (Kaye & Applegate, 1990), and it is their experience upon which this study will focus.

Central research questions arise about the role of elderly men who provide care to chronically ill family members. Who are they, and what do they do? What is it like to be immersed in what our culture consistently defines as "women's work"? What do their roles as caregivers mean to them, and how are such meanings derived? What are their distinctive strengths, vulnerabilities, expectations, and needs? What coping strategies do elderly men employ that enables them to ongoing challenges and demands of caregiving, and what can we learn about men and caregiving from their accounts of caregiving?

2. Caregiving and late-life masculinity

In a popular Beatles song from the 1960s, the question is asked, "will you still need me, when I'm 64?" The question speaks to the central urge to be needed and valued; for elderly men, it is especially significant in a culture that diminishes their worth, purpose, and identity in late life. What impact does the process of aging have on men, and what happens to their identities as they withdraw from the world of formal "production" and enter the Third Age?

Rubenstein (1986) argues that aged men, in general, are "forgotten" and known to others mostly through stereotypes, impressions, and anecdotes. Thompson (1997) suggests that elderly men are invisible as men in a culture that considers them to be roleless following retirement and views aging as decline and debility. Elderly men are perceived as a genderless, homogeneous collective group whose value and sense of being needed has diminished rather than a diverse group of individuals who continue to grow and transform. Much of the scholarship that does exist on older men focuses on biomedical concerns of aging such as sexuality, disease, and disability (Solomon, 1982) or "self-orientated" facets of late life such as the personal effects of retirement and widowhood. "Other-oriented" issues, such as nurturant capabilities or the experiences associated with caregiving, have seemingly been lost in the shuffle (Kaye & Applegate, 1994), and the experiences of elderly men as men, as gendered beings, as well as family caregivers, continue to go underexamined.

Based upon the groundbreaking work of feminist scholars over the past two decades, social science has come to recognize gender as a primary hub around which social life is structured and organized, equally central as race and class. The role of gender is central to human experience along the entire life course, from the macrostructural realms of social hierarchies to microarenas of individual personality and interpersonal interactions (Kimmel, 1994). The meaning of femininity and masculinity are not constant over the life course of any woman or man's life; indeed, it may be said that the only "constant" is change and transition. We may be born male and female, but our actions as men and women come about through complex interactions with our social environment, evolving and changing in response to social institutions that inform and reinforce our identities as gendered beings (Messner, 1998).

Caregiving offers an exciting realm in which to examine the social construction of late-life masculinity, as men evolve and change in response to the physical and emotional needs of another, and how such transitions impact their caregiving actions and style. While men caregivers are occasionally observed as caregivers, the understanding of their caregiving as actions of aging men remains significantly unattended (Thompson, 1997).

In addition to gender, heterogeneity among the elderly is often afforded too little attention in scholarship, even in the field of gerontology (Thompson, 1994); diversity among elderly men is attended even less. The role of race, class, ethnicity, sexuality, etc. all impact the attitudes and actions of elderly men in general, as well as in the caregiving arena. Elderly men differ; they do not all care in the same way nor do they derive the same meaning from the caregiving experience (Archer & MacLean, 1993). While structural differences have been investigated (e.g. relationship to care recipient), few studies have sought to understand heterogeneity among men caregivers or how men's individual identities might shape if, when, and how care is given (Harris, 1993; Hirsch & Newman, 1995).

The goal of this study is to explore the richness and diversity of experiences encountered by elderly men caregivers, as well as the variety of subjective meanings ascribed to their caregiving experiences. As a result, the work of elderly men caregivers will be seen as a combination of gender and life course processes, reflecting the diversity of attitudes and abilities of this often overlooked group of caregivers.

3. Men in caregiving literature

The body of caregiving literature that has appeared since the early 1980s is dominated by studies, which focus on women caregivers, and only occasionally have men been mentioned, usually as a variable for comparison (DeVries, Hamilton, Lovett, & Gallagher-Thompson, 1997; Horowitz, 1985; Miller, 1987; Zarit, Todd, & Zarit, 1986). In the few studies in which men caregivers are given consideration, two distinct theoretical perspectives have emerged. The first perspective postulates that the work of men caregivers, for the most part, is ineffective and inconsequential. The second perspective suggests that men are indeed capable caregivers, adaptive and innovative, able to manage as well as nurture in providing competent care.

3.1. Men as ineffective or inconsequential caregivers

In a portion of caregiver scholarship, men are depicted as present for only brief periods of the caregiving experience (cf., Allen, 1994; Stoller, 1990) or "abdicate" their responsibilities when the going becomes difficult (Parks & Pilisuk, 1991). When men do care, they are occasionally acknowledged as caring about another in meeting instrumental needs such as transportation or managing financial matters. When caring about becomes caring for an elder ("hands on" care and assistance), men are frequently absent from the caregiving arena altogether, as it is suggested that men have not been socialized to tolerate the arduous daily burdens of caring for another (Montgomery & Kamo, 1989; Pruchno & Resch, 1989).

When men do care, they are frequently depicted in the literature as ineffective and less capable than their women counterparts. Explanations of men's participation in eldercare suggest that socialization predisposes men to provide a lesser quality of care (cf. Allen, 1994; Finley, 1989). Stoller (1990) suggests that men have "lower tolerance thresholds for providing care," and others theorize that men are not as "dependable" as women or provide fewer hours of care because of socialization or task learning (Young & Kahana, 1989). …