Exploring Experiences and Perceptions of Aging and Cognitive Decline Across Diverse Racial and Ethnic Groups

Abstract

Objective: To explore how older adults from three prominent ethnoracial groups experience cognitive decline and aging. Method: Semistructured key informant interviews (KIIs) and focus groups (FGs) were conducted with caregivers, experts, and older adults. Results: (N = 75). Fifteen KIIs regarding cognitive aging issues were conducted among health care professionals and community-based agencies serving older adults. Eight FGs included family caregivers and physicians, and six FGs with Latino, African American, and White older adult community members. Major themes included (a) personal expectations about aging, (b) societal value of older adults, (c) model of care preferred, and (d) community concerns. An overarching theme was a sense of loss associated with aging; however, how this loss was experienced and dealt with varied. Discussion: Distinct patterns of concerns and views are important to understand for the development of programs aimed at meeting the needs of diverse older adult community members to improve health outcomes.

Background

Globally, we are experiencing historically unprecedented increases in the aging population. In the United States, the number of adults 65 years of age and older has steadily increased from 35 million in 2000 to 41.4 million in 2011, representing 13.3% of the population with a predicted proportion of 19% by 2030 (Administration on Aging, 2010, 2012). Older adults are also becoming increasingly diverse with an estimated 28% of elders self-identifying as a race other than non-Hispanic White (hereafter referred to as Whites) and 16% as Hispanic/Latino ethnicity (U.S. Census Bureau, 2011a). Furthermore, growing evidence suggests that like other chronic diseases (Henderson, Kendall, & See, 2011), cognitive illnesses disproportionately affect minority ethnoracial groups in the United States (Alzheimer’s Association, 2010; Chin, Negash, & Hamilton, 2011). For instance, the Alzheimer’s Association (2010) estimated the prevalence of Alzheimer’s Disease (AD) and other dementias among African Americans 65 years of age and older to be about twice the proportion among older adult Whites. Similarly, the prevalence among Hispanic older adults is estimated to be 1.5 times greater than in White older adults.

Adding to the disparities between ethnoracial groups, researchers have documented differences in knowledge, awareness, and beliefs about cognitive health. Overall, however, we know relatively little about differences in knowledge and beliefs about dementia across ethnoracial groups and associated health outcomes (Chin et al., 2011). Improved understanding regarding the attitudes and perceptions of cognitive aging among various population subgroups by comparing and contrasting cultural differences is critically important given the increasingly diverse U.S. population (Laditka et al., 2009). This is also one of the priorities identified in the National Public Health Road Map to Maintaining Cognitive Health (Centers for Disease Control and Prevention & Alzheimer’s Association, 2007).

In an effort to understand cognitive aging among population subgroups, perspectives most commonly explored are those of primary relatives and caregivers of individuals with AD (Connell, Roberts, McLaughlin, & Carpenter, 2009). However, these studies have mostly explored knowledge of cognitive illnesses (mainly AD) rather than facets of culture that may offer explanation for outcomes such as social support, health expectations and treatment seeking, or views on one’s community and self-perceptions of health (McLaughlin, Jette, & Connell, 2012). Clearly, contextual and cultural perceptions around the issue of aging in subgroups of older adults are too important to ignore (Anderson, McCaul, & Langley, 2011).

Study Aim

The Inland Empire (IE) region of southern California, encompassing Riverside and San Bernardino Counties, is highly diverse with 49% of the population self-identifying as Hispanic and 9% as African Americans (U.S. Census Bureau, 2011b). This diversity is not reflected in the patients seen by geriatricians, psychiatrists, and neurologists engaged in the treatment of cognitive decline, who report seeing nearly exclusively White patients (Physician Focus Group, personal communication, August 19, 2010). While access issues such as structural barriers may be involved, other factors may also be linked to treatment seeking. In light of the dearth of literature exploring attitudes and beliefs related to cognitive illness, culture, and aging, we conducted a mixed-methods study (titled Project RECAP—Research Exploring Cognitive Aging Perceptions). The purpose of the study was to explore how respondents from the three prominent ethnoracial local communities (a) Latino, (b) African American, and (c) White experience aging and more specifically cognitive decline and aging. This article will review some of the key qualitative findings collected in the contextualization phase of the study.

Method

Design

Using a qualitative research paradigm and a grounded theory framework (Strauss & Corbin, 1990), RECAP researchers explored physician and formal caregiver perspectives as well as the perspectives of community stakeholders and adult community members age 55 years and older (N = 75). We used purposive sampling (Patton, 2002) to assure relevant perspectives on the topic starting with 15 key informant interviews (KIIs) with professionals involved in service delivery for elders, followed by two focus groups (FGs) with (a) 8 family caregivers and (b) 10 physicians involved in dementia care (see Figure 1). The resulting information was then used to guide six FGs with older adults (≥ 55 years of age) recruited via local churches (two FGs with 19 Whites, two FGs with 16 African Americans, and two FGs with 22 Latinos; one group was done in Spanish).

Figure 1.

Purposive sampling of older adults, community stakeholders, physicians, informal and formal caregivers.

Procedures

Interviewers trained in ethics and qualitative research methods conducted the KIIs and moderated the FGs using semistructured outlines with open-ended questions. Audio recordings were transcribed verbatim. Data collected in Spanish were translated and transcribed in English.

Data Analysis

Field notes and transcripts were coded using the data-driven inductive approach described by Boyatzis (1998); drawing from grounded theory (Strauss & Corbin, 1990), two levels of coding (open and axial) were used to derive a shared emergent codebook and analyses was conducted concurrently with data collection to responsively adapt our inquiry using previous stages of coding for constant comparison (La Fontaine, Ahuja, Bradbury, Phillips, & Oyebode, 2007). Through comparing and contrasting interpretation and desired codes, researchers were able to discuss and reach consensus concerning the most logical, likely, and participant-grounded interpretation (La Fontaine et al., 2007). Data were coded and reviewed within and across subgroups (i.e., physicians, family caregivers, and ethnoracial-specific older adult groups), and determination of final themes and subcategories were based on the final stage of comparison. A total of 23 transcriptions were coded and analyzed for emerging themes.

Results

Participants

A total of 75 men and women participated in the study, including 15 key informants and 60 FG participants. Participants were recruited from multiethnoracial community-based organizations concerned with older adults and multidenominational churches in local Latino, White, and Black communities. While the target region income and educational levels are generally low, we deliberately recruited participants from lower as well as somewhat higher income areas. Average household income ranged from US$28,804 to US$57,155, and educational levels ranged from less than 10% having completed a high school education to areas where 40% had greater than a high school education. Participants self-identified their racial/ethnic group and ranged in age from 55 to 78 years. Women participants (60%) outnumbered men.

Triangulation of data from KIIs and FGs supported comparisons made within and across five participant groups (older adult White, Latino, and African American participants, physicians, and family caregivers; see Table 1). Initial review of the data (emergent coding) resulted in 39 codes. These codes were then clustered into 10 major codes, which resulted in four themes: (a) expectations about aging, (b) societal value of older adults, (c) model of care, and (d) community concerns.

Table 1.

Summary of Perceptions of Cognitive Aging, by Participant Group.

Theme	Older AA	Older Latinos	Older Whites	Physicians	Family caregiversa
Expectations about aging
Fear, disappointment, loss of respect	✓		✓		✓
Acceptance of aging as natural		✓
Aging defined by deficits	✓		✓	✓	✓
Aging defined by assets		✓
Aging defined as an occurrence	✓		✓
Aging defined as a process		✓			✓
Memory loss as a normal occurrence	✓	✓	✓		✓
Community awareness of cognitive illness			✓	✓	✓
Social value of older adult
Determined by contribution to society	✓		✓		✓
Influenced by financial status	✓		✓
Influenced by cognitive health	✓	✓	✓	✓	✓
Age discrimination	✓		✓		✓
Model of care preferred
Maintenance of independence			✓	✓
Depending on family/neighbors	✓	✓		✓	✓
Paying for help at home			✓		✓
Out-of-home care			✓	✓	✓
Importance of a positive relationship with physician		✓	✓		✓
Community concerns
Availability of care	✓	✓	✓	✓	✓
Disparity in care available due to finances	✓			✓	✓
Neglect of older adults			✓		✓

Note. A checkmark indicates that the theme was commonly expressed in focus groups regarding their own community (with the exception of physicians) of the indicated category. AA = African American; FG = focus group.

^aThe family caregivers FG was a multiethnic, multicultural group.

Expectation About Aging

In general, participants’ expectations regarding physical and cognitive aging and the reality of the aging they observed were often very different. The response to unmet expectations was expressed as denial, skepticism, shock, and little or no hope. Expressed fear regarding the loss of cognitive abilities was greater than fear regarding anticipated physical decline. The expectations theme will be further discussed under two categories: (a) expectations associated with general aging and (b) expectations associated with cognitive aging.

Expectations associated with general aging

Aging was described with negative connotations alluding to the fear of change and no longer being useful or seen as a productive, contributing member of society. The elder years were described as a whirlwind of changes emphasizing “stress, worry, and illness” ending in a state of helplessness. Fear and disappointment were expressed as predominantly “American” culture, while other cultures (i.e., Latinos) were more likely to accept the aging process as a natural occurrence accompanied by family-wide understanding of parents’ decline in physical and cognitive function.

Fear, inability to function as you have functioned before, and that causes a lot of stress on an individual. In your mind if you have mind-set that “I am helpless now, I am getting old and no one really wants to see me around, what am I going to go through before I actually die?” can be somewhat paralyzing. (Older African American FG participant)

A distinction was made between aging defined by deficits versus assets, and aging defined as an occurrence versus a process. White and African American participants used a deficits model to describe aging. Discussion by White participants included the description of aging as a “progression toward death” and participants from the African American community echoed these fears by describing aging as a time of loss. Both perspectives described aging negatively and associated with the desire to maintain function to remain independent, representing a strong cultural value tied to individualistic societal norms in the United States. They also saw aging as beginning at a certain age (i.e., the current age of baby boomers). Latino participants were more inclined to describe aging as a process across the life span marked by natural transitions that manifest as changing, but nevertheless valued, roles in the family.

In terms of aging in society, most non-Latino participants felt that older adults are generally not respected in American society and that any value assigned to them aligns with their capacity for independence and productivity. Many expressed avoidance of the thought of aging because of the negativity associated outcomes.

When you’re old you forget things, loss of identity, more medical issues, fear and discrimination . . . . (Older African American FG participant)

Some of us get older and . . . aren’t as capable as we used to be . . . and some people [experience] “age discrimination” “losing respect.” (Older White FG participant)

The perspective of Latino participants, however, did not echo the views of the White, African American, and physicians. Instead, Latinos focused on perceived positive factors associated with aging, their overarching responses describing no limit to learning or to wishing and desiring associated with one’s age.

I believe that a person can reach an old age still loving life and having a desire to do something new, to learn above all. So there is no limit, in that regard. (Older Latino FG participant)

Expectations associated with cognitive aging

Across the five study groups, memory loss throughout the aging process was expected. Participants expressed ordinary qualities of memory loss such as forgetfulness but had difficulty quantifying how much memory loss was “normal” versus related to illness.

African American participants additionally expressed increased fear associated with a family history of cognitive illness and subsequent exclusion from society.

My Dad has Alzheimer so I kind of worry about it. When I forget my keys, something, I’m worried about it. I think, am I having Alzheimer’s? I think about that. People won’t come to visit. (Older African American FG participant)

Expressing a slightly different perspective, the Latino respondents noted the normalcy of memory loss with gradual onset as part of a continuum of loss and described “normal” versus “abnormal” memory loss based on comparison with other same-age individuals.

. . . if you’re starting to forget things, everybody forgets, but I think it has a lot to do with remembering your kids, your childhood . . . Then you compare it with other people your age. (Older Latino FG participant)

While all participants agreed that some memory loss is part of aging, perceptions about awareness of issues related to aging varied. African American and Latinos participants expressed concern regarding a lack of awareness in their community because of the emphasis health professionals place on chronic diseases (e.g., diabetes and hypertension).

I think most people do not know the difference between dementia and Alzheimer’s. The people in the senior center talk about it, but the other people rarely talk about it. It is different . . . not like diabetes and cancer patients, and those are the main categories in African American health issues. People talk of diabetes, hypertension, cancer, like that—that what on the radar. (Older African American FG participant).

Latino participants similarly expressed and explicitly stated that cognitive illness is “not part of their community” but rather other chronic diseases are prevalent and of concern.

No . . . no . . . no, we have not heard much about that among the Latinos. Like saying, sometimes they say that diabetes; we have it a lot among ourselves. Dementia, aging . . . not much. (Older Latino FG participant)

White participants’ discussions reflected greater awareness of cognitive illnesses and expressed belief in prevention strategies. There was no mention of knowledge deficit or obstacles to understanding the issues of cognitive aging.

Social Value of Older Adult

Participants expressed beliefs that within American society, an individual’s value is determined by one’s ability to contribute to family or society. Value was also expressed as having purpose; participants expressed frustration and loss related to retirement. Financial status was viewed as a factor that could either partially alleviate or exacerbate one’s change in value due to aging.

You can have good health, good mental stamina, still able to function and therefore you want to be a part and participate and contribute to your society but you are discriminated or limited to what you can do because of certain age. (Older African American FG participant)

But the American concept of aging is . . . to put you on a shelf. You are no longer any use, your useful is over, you have nothing to say, let the younger ones have the field. (Older White FG participant)

Sometimes people of old age are being disregarded may be because of the status in the society like, for example, if you an old man who drives a nice car, looking good physically may be respected more than an old poor person. It really depends on material things. (Older African American FG participant)

Participants indicated that cognitive decline threatens one’s place in family or society. While it was acknowledged that much of the disregard for elders suffering cognitive illnesses stems from people in society not understanding the illness, they expressed concern that the lack of understanding leaves elders feeling rejected.

Sometimes people of old age are being disregarded . . . because they [other people in society] don’t understand and don’t know how to treat them. (Older African American FG participant)

I think that the people that suffer from either one of them [Alzheimer’s disease or stroke] feel a sense of rejection from other people . . . (Family Caregiver FG participant).

Nobody cares . . . . (Family caregiver FG participant)

White participants also expressed a sense of decreased status in society due to intergenerational differences. They described a disconnect between generations in their community and conveyed a void of common points of interest. This seemed to contribute to their impression of a general lack of respect for older persons, which further devalued them.

Losing respect . . . discarded, like you don’t have any value anymore. (Older White FG participant)

It’s too much hustle and bustle and, and a lot of times families are fragmented so they don’t really have any real interest in taking care of their parents and so consequently they don’t. (Older White FG participant)

Model of Care

Given the physical and possible cognitive declines anticipated with aging, participants acknowledged the need for various types of care. In general, all participants discussed that preferred caregivers are usually family members, typically a spouse or a child. However, White participants emphasized health as being a personal matter more than their African American and Latino counterparts. While each group recognized a personal responsibility in health, White participants emphasized maintenance of independence as a critical issue and expected of their own aging experience. This particular group discussed wanting to have a changing, flexible model of care throughout the stages of aging along the anticipated inevitable decline, stressing that they did not want to negatively impact/affect their often working families with the responsibility of older adult care. They also openly discussed paid help when the situation requires it.

I have heard about families that are very busy either with their job, or their children, or grandchildren, or whatever and so . . . their parents, they do pay, maybe they don’t live near them so they can check on them . . . so they’re paying somebody to take care of their family . . . I’m thinking “these are the parents that raised them and now they need that care,” and I think it’s sad. (Older White FG participant)

African American participants similarly expressed a struggle between having family members as caregivers and their recognition of the demands that would put on their family. Interestingly, this particular group brought up the potential role of neighbors in care, as had been the case in the past, and the shift that has occurred in neighborhood structure over the last few decades, reflecting the decline in social engagement and social isolation seen in the United States (Sander & Putnam, 2010).

I think also another problem is that we don’t have a long relationship with neighbors now that we used to have. We used to have relationships with our neighbors for 10 to 20 years. Now you might only have 5 and even it might not be 5 years now, so there is no bond. The communities are like everybody is in their separate household; they are afraid to step out. (Older African American FG participant)

Participants’ trust in neighbors relied not only on length of the relationship but also on the background of the individual. Participants stated that in the African American community, members help and trust only their own kind with the intention of protecting their own from untrustworthy outsiders.

Communities are so different now, and it just depends on if I know you and if my neighbor next door to me is White! No I am not going to ask you too much of anything even come into my house or if you are of any persuasion other than African American, [then] “No.” (Older African American FG participant)

Similar to African American participants, Latino older adults also emphasized the importance of neighborly action within the Latino community. They expressed a more community-oriented, collectivistic view of caring for elders. Participants discussed the role of young family members as those who accompany elders to appointments with health care professionals and that someone outside of the family would not fill the role of caregiver.

It’s mostly (someone) in the same family that helps because other people . . . no one will receive help. I say it because of my mother-in-law because she received help from her same family only. (Older Latino FG participant).

The Latino participants discussed the importance of seeking a good relationship with physicians. In a similar vein, White participants expressed that if physicians would take time with older adults, it would be a big help. African American participants were more likely to emphasize their lack of trust in physicians and described physicians as insincere “pill-pushers.”

Physicians noted differences in the chosen model of care among minority groups compared with their White counterparts. Physicians expressed the belief that all older adults desire aging in place surrounded by family; however, they recognized that minority groups (described as mainly Asian and Latino) practice a home care model, while their White counterparts practice an out-of-home care model. The African American community was viewed as a “transitional” group between White and other minority groups as their care for older adults typically takes place in the home but with more of an individualistic family attitude than collectivistic minority groups. Moreover, they identified female caregivers (often the child of the adult with the illness) as more common than male caregivers. Among the Latino community, an additional female role—that of matriarch—was identified, as the woman that holds the family together.

In terms of their own roles, physicians strongly and quite emotionally expressed both personal and professional frustrations, feeling overtaxed, even overwhelmed by not knowing how to deal with the issues of older adults, particularly due to what they saw as a nearly complete lack of systematic referral mechanisms in our local area, lack of coordination for home care, and lack of community health infrastructure. They acknowledged the tremendous needs and isolation of older adults. Furthermore, they expressed awareness of health disparities among minority groups, associated with socioeconomic status, due to limited health care resources available to those with limited finances.

Community Concerns

Community concerns varied across participant groups reflecting each group’s expectations, value beliefs, and anticipated model of care. Concerns included lacking resources, social support, treatment choices, nutrition, mental health, choice of primary caregivers, and ethics. Although the Affordable Care Act (ACA) in theory is expected to address the issues participants mentioned, the reality is that ACA progress is slow. Furthermore, even ACA opponents worry about the care of insured Americans as the population ages. Similar to their discussion on the link between the value of older adults and materialistic status, the African American participants expressed that one of their biggest concerns is the disparity in availability of care based on income status.

Their belief is that those who belong to middle-income America do not have enough discretionary income to pay for good care, yet their income disqualifies them from receiving government supported care. Although after the age of 65, all U.S. citizens are eligible for Medicare, supplemental insurance may not be affordable.

. . . If they want to apply for Medi-Cal or one of the programs that would assist them and they know that they are going to assist them, when they fill out the paperwork they are, you know, tested like “oh do I tell the truth about this? But if I tell the truth, then I won’t get the services. . . . but I need the services.” So [their honesty] is tested. (Key informant—Family consultant with a local resource center)

White participants expressed concern regarding their struggle with place-of-care issues. While many White participants expressed that they automatically affiliate care for older adults with nursing homes or other professional care facilities, they also described one of their main concerns as older adult neglect and financial abuse.

. . . have put their grandparent, parent, whatever in a nursing home and then the money that comes into their care they suction off and buy a new car and since the institution is supposed to be taking care of them. . . . (Older White FG participant)

Latino participants voiced their main concern as the desire that Hispanics not forget the care of their own community members. Rather than their concerns focusing on factors outside of their community, Latino participants focused on the responsibility of people in their community to care for others from their same community. They stressed the value of collectivism in the context of camaraderie and the responsibility of caring for those who are your own.

How ethical is it for us Hispanics that one of our elderly is in a convalescent or to be at home? Because the Hispanic culture is different than the White culture. We maintain our elderly and we want to take care of them at home. . . . (Older Latino FG participant)

Family caregivers expressed more concerns than any of the other community groups about the effects of aging. Their concerns included approaching a loved one regarding power of attorney, lack of knowledge regarding how to exercise power of attorney, navigating through medical insurance, maintaining trust when handling a loved one’s income and expenses, full disclosure of medical conditions, discerning cognitive ability, seeking care, and ensuring compliance. They also expressed the complexity of these multifaceted issues with the associated emotional and psychosocial components.

Discussion

The aging process is often described in five different realms across multiple cultural groups: (a) social involvement and interaction, (b) mental attitudes, (c) cognition, (d) physical health, and (e) spirituality (Laditka et al., 2009). In the context of American society, aging is commonly described as loss in multiple contexts of life. Our participants described loss as a common expectation overshadowing the later years of their lives. These losses include the loss of relationships (isolation), loss of their current or preferred lifestyle (expressed in terms of their ability to preserve it), loss of independence (associated with change in physical health), and loss of identity (associated with each these changes).

Expectations related to aging are important because these expectations may influence subjective measures of healthy aging. Ferri, James, and Pruchno (2009) found that the perception of being healthy was more closely associated with healthy aging than their actual state of health. Healthy aging was positively related to social support, life satisfaction, and subjective health, all of which may be colored by one’s expectations. Reviewing expectations across participant groups, African American participants emphasized lack of respect more than Whites and Latinos. They also mentioned discrimination associated with age due to decreased physical capacity. White participants emphasized the expectation of being regarded as a “burden” to society and family, a common theme discussed among older adults (Bosma, Apland, & Kazanjian, 2010).

The focus on physical changes by Latino participants reflects concerns stressed in the literature regarding the limitations placed on completing simple daily activities (Beyene, Becker, & Mayen, 2002), an area where others can “step in” (Fausset, Kelly, Rogers, & Fisk, 2011). In that respect, Latinos and others from similarly collectivistic groups may have an advantage—In Latin culture, part of the transition in roles includes an increased status for individuals as they age. This shift in roles is an essential component for social relations in the Latin culture, allowing elders to live in the present and enjoy a sense of community (Hilton, Gonzalez, Saleh, Maitoza, & Anngela-Cole, 2012). African American and White participants did not discuss this shift in roles at all.

Most participants, and specifically caregivers, expressed that as older adults lose their independence, their value to society seemingly diminishes. This view reflects the independent research on aging by Bramstedt (2001) and Cole (2002), which describes Americans as feeling the need to fight growing old, a desire that is associated with a general view of aging as a negative process ending in a state of lost value. As Cole (2002) stated, “‘Anti-aging’ has emerged (again) as a powerful theme in American culture. It is a zeitgeist which takes many forms (in medicine, consumer culture, and especially in marketing to baby boomers)” (p. 51).

Participants discussed expectations associated with cognitive aging by comparing perceptions and literal experience. Participants delineated expectations as normal, the expected occurrence of memory loss (i.e., forgetfulness) and the unexpected diagnosis of dementia (Moser, Spagnoli, & Santos-Eggimann, 2011). Family caregivers similarly discussed the normalcy of and expected loss of memory with aging (i.e., forgetfulness), yet the response to a loved one’s diagnosis of cognitive illness included the recollection of shock as they had never wanted to consider that the event would ever happen, despite previous familial encounters with the disease.

It was common for participants to discuss children’s acceptance or lack of acceptance of changes in parents’ health. Many noted that physical limitations tend to be better accepted than cognitive limitations. This finding reflects the importance of cognitive health as it relates to identity, respect, and social relationships in addition to an individual’s ability to cope with physical declines (Hendrie et al., 2006). The dichotomization of changes in health relates to the common finding in our research and across the literature, which describes the tendency for adult children to be in denial or meet the parent’s diagnosis of cognitive illness with skepticism or fear of stigma (Hinton, Franz, Yeo, & Levkoff, 2005). Family caregivers emphasized an AD diagnosis as one of no hope.

In the context of American society, the belief commonly held that one’s value comes mostly from sources affiliated with economic success and achievement (productivity), measures of efficiency (great output for little input), and effectiveness (a positive monetary outcome) can have a negative effect on older adults (Cole, 2002). Our participants expressed similar beliefs or reflected on experiences attributed to these attitudes. In addition, much of the value that is assigned to individuals is based on what they do for a living. Participants noted that when older adults retire, they often find themselves losing value. Rabbi Abraham Joshua Heschel similarly described this source of devaluation in his address to the first White House Conference on Aging in January 1961 where he simply stated that our capitalist culture turns the individual into a “machine for the making and spending of money” (Cole, 2002).

The United States is experiencing a significant demographic shift with people living longer and technology facilitating triumphant feats over once incurable diseases (Peterson, 2000). Our participants were keenly aware of an intergenerational disconnect. Due to the widening spectrum of ages, a subsequent “gap” occurs with youngsters embracing the fast pace and energy of progress and modernism while older adults seek a holistic, balanced culture for growth and adaptation. Intergenerational differences are promoted in social settings in American society; for example, at social gatherings, attendees and activities are often separated by age, whereas in other cultures, age groups are more integrated, and gender may be the separating factor.

With delayed parenthood for most, the family caregivers described the struggle to choose between being the primary caregiver for a sick parent or working to support family. The two (work and family) seem to be inseparable, yet U.S. public policy treats families more as a personal responsibility instead of a social priority (Hacker, 2006). The family, which once had its place in American society as “a refuge” from instability and threat, has now become the “epicenter of risk” for many (Binstock, 2007) within which individuals are forced to choose between economic security and family. This difficult choice also threatens the possibility of older adults aging “in place.”

Our participants specifically mentioned race/ethnicity as a criterion for giving or receiving neighborly action, and the influence of income status, which has been studied for its effect on social capital. Many times, inequalities that are sensed by individuals, no matter what the underlying factor may be (e.g., income, race, etc.), can contribute to a lack of trust in neighbors and limited social cohesion in communities (Bjornstrom, 2011). African Americans, in addition to the already noted social isolation in the United States (Sander & Putnam, 2010), further noted continued mistrust of other race/ethnicities stemming from postslavery experiences where African Americans had to rely on their own people to survive.

When considering models of care and the roles represented in these varying models, neighborhood environments can have an effect on the feasibility of idealized paradigms. In review of our data, differing preferences for models of care are noted across groups. Participants from the physician FG noted the often-debated issue regarding place-of-care for older adults. The options include home, community, or institutional settings, with the most common U.S. model being institutional-based care for older adults in the form of nursing homes and independent living facilities, and so forth (Kodner, 2006), all high cost models not available to many.

The physician participants described minority groups (which they identified as Asian, Latino, and African American) as generally exhibiting greater respect for older adults when compared with Whites. They also identified the family approach to caring for older adults as a characteristic of minority groups. The collectivistic nature of these groups was described in a positive tone. While it is suggested that two forms of self-construct (e.g., collectivistic and individualistic) can coexist in an individual of any culture (Lee & Eaton, 2009), physicians suggested that the collectivistic background strongly influences resource utilization among minority groups. They noted that Asian and Latino families had a tendency to delay treatment seeking and saw this as a negative aspect of collectivistic approaches to caring for older adults. Difficulty with access to health care may (Chung, Grogan, and Mosley, 2012), however, be a reason for delayed treatment seeking. Henderson et al. (2011) noted in their review of the literature that culturally and linguistically diverse communities are challenged to find health care providers that are knowledgeable in providing culturally appropriate services.

Whites were noted to seek treatment earlier than minority groups and the White participants themselves expressed the belief that preventive strategies were worthwhile. This pattern mirrors the literature (Bryant, Laditka, Laditka, & Mathews, 2009), and although it is noted that the two concepts may not be linked (i.e., because Whites seek treatment earlier does not necessarily mean that they believe that cognitive illnesses can be prevented), it is worthy of emphasis that only our White respondents explicitly discussed prevention contributing to better cognitive health. When individuals believe a disease is preventable, he or she is more likely to adopt behaviors in an attempt to prevent the disease (Anderson et al., 2011)

Although not always recognized, cognitive aging can be delayed or prevented to some extent. Behaviors that have been associated with cognitive and emotional health include diet, physical activity, and social involvement (Bryant et al., 2009; Hendrie et al., 2006). Our data reflect the large variation in responses to known causes and prevention strategies for AD seen in the literature (Anderson et al., 2011) suggesting the opportunity for public health education. However, an important caveat to consider as researchers seek to develop interventions is that as beliefs about prevention permeate society, we might expect more blaming of victims as issues of access (poverty) and awareness or cultural barriers keep individuals from instituting such behavioral changes. As suggested by Bryant and colleagues (2009), well-designed interventions for promoting cognitive health need to be developed with cultural humility and be culturally relevant as well as sensitive.

Study Limitations

Our participants consisted of a purposive sample of older adults, family caregivers, and physicians caring for older adults. The White FG participants did not have as wide a range of income and education as did the Latino and African American FG participants, limiting comparison on these variables. Last, our findings may not be generalizable to other African American, White, and Latino subgroups outside of our target area, which is highly diverse. Also, although the local Asian community is increasing in size, we were not able to include members of this community, mainly due to distrust and a negative inclination to discuss these highly personal challenges. Future studies should collect additional data to provide broader insights to the perceptions of cognitive aging among diverse groups. Nonetheless, our present study provides useful insights and a unique glimpse of the similarities and differences in the perceptions and knowledge of cognitive aging across diverse racial and ethnic groups, laying the groundwork for future research on the aging population of Southern California.

Conclusion

Understanding similarities and differences in perceptions, expectations, and preferences about aging and for caregiving is important. Perceptions of aging influence societal behaviors and expectations toward older people (Pasupathi & Lockenhoff, 2002) as well as older adults’ well-being and coping with the aging process (Levy & Myers, 2004; Löckenhoff et al., 2009). Few studies have explored differences in perceptions of aging between U.S. ethno/racial groups. Our study provides evidence of differing views not only within but especially across cultures, pointing to a need to design and implement culturally relevant interventions for older adults and their loved ones. Clinicians caring for older adults need to be aware of these differences to better understand patient and family needs, preferences, and goals. This will facilitate collaborative planning for the identification of appropriate caregivers and place of care to support optimal social, cognitive, physical, and spiritual health.