Incorporation of health promotion activities (HPAs) in Alzheimer's disease care services is critical to quality care outcomes (Price & Keady, 2010). With family members providing the majority of care for older adults with Alzheimer's disease and related dementias (ADRD) (Waite & Das, 2010), it is important for nurses to understand the HPAs that family caregivers provide to better support them and individuals with ADRD, as well as develop culturally informed HPA programming. This support is particularly relevant for African American individuals who have limited access to health promotion programming (Centers for Disease Control and Prevention, 2009) and are twice as likely to be diagnosed with ADRD than Caucasian individuals (Alzheimer's Association, 2016).
Health and Health Promotion Activities
Health is defined in myriad ways. Merriam & Webster (n.d.) define health as “the condition of being well or free from disease.” The World Health Organization (WHO; “Preamble to the Constitution…”, 1948) defines health as the complete physical, mental, and social well-being and not merely the absence of disease. Pender, Murdaugh, and Parsons (2006) define health as a positive dynamic state, rather than just the absence of disease. It is important to understand how one defines health as an underpinning to understanding HPAs. Pender et al. (2006) explain HPAs are motivated by a desire to prevent illness and focus on wellness, and used to reach optimum levels of health and well-being. The Health Promotion Model proposes that individuals are more likely to participate in HPAs to reach the health goals they believe are achievable and will result in the desired outcome (i.e., improved health) (Pender et al., 2006). HPAs are influenced by individual characteristics and experiences (i.e., prior behavior and personal factors) and behavior-specific cognitions and affect (i.e., perceived benefits, barriers, self-efficacy, and interpersonal and situational factors) (Pender et al., 2006). Pender et al. (2006) propose these factors are antecedent to a commitment to planning for and undertaking HPAs and aid in understanding and motivating individuals to increase HPAs and improve health.
Older Adult Health and Health Promotion Activities
Research on the definitions of health and HPAs is essential to the development and delivery of health promotion programs for older adults. This component of health promotion programming is particularly salient within the African American community. In a qualitative study with 10 focus groups of older adults, including two groups of African American older adults, health was defined as the absence of symptoms or illness (Walcott-McQuigg & Prohaska, 2001). Social connections with family members was identified as a HPA that helped prevent isolation and depression, allowing older adults to live longer with chronic illnesses while maintaining functioning and quality of life (Walcott-McQuigg & Prohaska, 2001). In addition, older adults' involvement in faith-based community programs influenced functional fitness and quality of life (Anderson & Pullen, 2013; White, 2011). Encouraging older adults to pursue physical, social, and intellectual activities enabled them to have active and fulfilling lives (Anderson & Puller, 2013; Pascucci, Chu, & Leasure, 2012; Walcott-McQuigg & Prohaska, 2001; White, 2011).
Despite the promising fulfillment that older adults can receive through participation in HPAs, obstacles exist. Community-dwelling older adults identified the lack of family support, harsh changes in the weather, and safety of their physical environment as key barriers to their participation in HPAs (Stark, Chase, & DeYoung, 2010). Many older adults find themselves in communities with increased crime, which presents a challenge to engaging in HPAs (WHO, 2002; Wieck, 2000). In addition, older adults have identified how declines in their physical, social, and cognitive abilities interfere in their participation in HPAs (Pascucci et al., 2012; Stark et al., 2010).
Older Adults' With ADRD Involvement in Health Promotion Activities
Mild to moderately cognitively impaired community-dwelling older adults reported that being active in leisure activities, household chores, and social involvements was a main driving force that gave them meaning and provided a sense of continuity in their lives (Phinney, Chaudhury, & O'Connor, 2007). Buettner and Fitzsimmons (2009) examined the effects of a HPA intervention that included cognitive stimulation, social connections, and lifestyle opportunities in community-dwelling older adults with early-stage memory impairment. Results showed a significant positive change for the treatment group with an increase in cognition (p < 0.05) and decrease in depressive symptoms (p < 0.001), in comparison to the negative outcomes observed in the control group with a decline in cognition (p < 0.04) and increase in depressive symptoms (p < 0.001). In addition, participants in the treatment group indicated a significant increase in their involvement in health behaviors compared to those in the control group (p < 0.03). The authors recommended further research to determine whether any difference in results would occur if family caregiver support was included. This finding underscores the importance of learning more about HPAs and family member involvement in HPAs for older adults with memory impairment (Fitzsimmons, 2010).
Research exists documenting the effects of HPAs on the health of older adults with and without ADRD (Anderson & Pullen, 2013; Buettner & Fitzsimmons, 2009; Pascucci et al., 2012; Pender et al., 2006; Phinney, Chaudhury, & O'Connor, 2007; Stark et al., 2010; White, 2011). Most studies, however, are of female, non-Hispanic Caucasian older adults (Pascucci, 2012; Phinney et al., 2007; White, 2011). In addition, in the current authors' review, no research was found on HPAs exclusively for African American individuals with ADRD. Therefore, the purpose of the current study was to describe family members' definition of health, HPAs, HPA barriers, and the perceived effectiveness of HPAs on functioning and well-being across the care trajectory for African American older adults with ADRD.
A qualitative descriptive design was used to provide a description of families' and older adults' with ADRD involvement in HPAs and the impacts on functioning and health (Sandelowski, 2000; Sullivan-Bolyai, Bova, & Harper, 2005). The goal is to better understand participants' situations (Sandelowski, 2000) for the development of interventions (Sullivan-Bolyai et al., 2005).
Institutional review board approval was received. Culturally informed strategies were used to enhance the researchers' familiarity with the context of rural and urban areas of greater New Orleans and Baton Rouge and recruit participants (Epps, Skemp, & Specht, 2015). Culturally informed strategies include ethnographic interviews and observations to systematically gain an understanding of the recruitment area and develop trusting relationships with community members for engaging in research and program development (Epps, Skemp, & Specht, 2015; Skemp, Dreher, & Lehmann, 2016). Recruitment strategies for the current study included gaining trust, promoting visibility of the project, networking with key stakeholders, appropriate follow up with participants, and purposeful activities for engaging with community members (Epps, Skemp, & Specht, 2015). During the recruitment process, community participants assisted in refining wording on the recruitment materials to more culturally appropriate terms. For example, family members would deny dementia or cognitive impairment, explaining that their older adult relative was “just very forgetful” and “it just comes with getting old.” They recommended not using terms such as dementia or medical diagnoses but rather forgetful, memory impairment, or memory loss. Theoretical sampling with maximum variation in rural/urban settings and across the care trajectory was used (Sullivan-Bolyai et al., 2005). Inclusion criteria for older adults were: (a) self-identified as African American or Black, (b) at least 60 years old, (c) resided at home or with a family member, (d) had a family caregiver willing to participate, and (e) self-reported experiencing signs and symptoms of ADRD. Inclusion criteria for family member caregivers were: (a) self-identified as African American or Black, (b) at least 18 years old, and (c) currently providing care and assistance to a non-institutionalized family member who is at least 60 years old and experiences signs and symptoms of ADRD.
Interviews and observations were conducted in the family caregiver's and/or care recipient's home. To promote description of the health promotion experiences, the researcher (F.E.) attempted multiple strategies: (a) a maximum of three formal interviews, one at the beginning of the study, the second follow-up interview within 6 months, and the last interview at the end of the study; and (b) observations at each visit. Data were collected using a demographic questionnaire, interview guide, and observation protocols for each family. The Global Deterioration Scale (GDS; Reisberg, Ferris, de Leon, & Crook, 1982) and a demographic questionnaire were used to assist family caregivers in identifying care recipients' stage of memory impairment. Inductive interviews were conducted with caregivers and care recipients, except for two families caring for individuals with severe dementia who were unable to communicate. All families agreed for interviews to be audiorecorded.
Observations were conducted before and after each interview to include descriptions of the home physical environment, family care environment, social and cultural context of the family, caregiving activities, and care recipients' cognitive and physical level of functioning. In addition, HPAs were observed at each visit. Interviews ranged from 30 to 90 minutes. The first interview with the family caregiver included an introduction and focused on exploring and describing what constitutes health and HPAs, their involvement in HPAs with the care recipient, and the perceived effectiveness on the functioning and health of the care recipient. The first interview with the care recipient included the above and an additional question on the perceived effectiveness of his/her family caregiver's involvement in HPAs on their functioning and health. Two to 6 months elapsed before the second interviews, allowing the researcher to analyze data from the first interview and make preparations for the second interview. The second interviews were used to expand and clarify the descriptive detail and preliminary analysis of the first interview and gather more data. The third interviews were conducted to validate the study results. No new validation themes emerged after interviewing 10 families, which occurred within 1 year of the initial interviews. Regardless of whether both caregiver and care recipient were interviewed, a gift card valued at $20 was given to the families at the second and third interviews. To foster credibility of data collection, brief field notes were taken by the researcher during each visit and expanded on immediately after interviews, along with a journal to capture the researcher's immediate impressions and perceptions.
Data collection and analysis were performed concurrently. Descriptive statistics were used for demographic data. Qualitative content analysis was performed using the manifest and latent content (Miles, Huberman, & Saldaña, 2014; Sandelowski, 2000; Sullivan-Bolyai et al., 2005) of the interview and observation data, including the description of the family environment, social and cultural context of the family, and family involvement in HPAs.
Saturation of the data occurred at 18 families of 44 participants (n = 26 family members, n = 18 care recipients). Family members included 10 non-consanguineous kin. Family caregivers were between ages 36 and 88 (mean age = 60.6; SD = 13.36 years), and 18 (69%) were females. Caregivers attained a high educational level, with 81% having had at least some college education. The majority (n = 16) of caregivers were blood-related children between ages 36 and 69 (mean age = 54.6; SD = 10.3 years), with 56% (n = 9) employed. One daughter received financial assistance as a personal care attendant for her mother. Overall, the length of time caregivers had been providing assistance ranged from 1 to 21 years (mean = 7.1 years, SD = 5.7 years), with 54% (n = 14) reporting their length of caregiving as more than 5 years. Of care recipients, 83% (n = 15) resided in the same home with a caregiver.
Care recipients were between ages 60 and 101 (mean age = 78.4, SD = 11.18 years), and 10 (66%) were females. Care recipients' stage of dementia ranged from very mild to severe according to the GDS, with the most frequent stage identified as moderate dementia (39%, n =7). During the study, five participants passed away: two female care recipients with severe dementia, one female care recipient with mild cognitive impairment, one female care recipient with moderate dementia, and one male spouse caregiver. The spouse caregiver passed away 4 months after his wife died. Two care recipients were admitted into a nursing home within 1 year of data collection. Religious affiliation included Baptist (caregivers, n =12; care recipients, n = 9) followed by Catholic (caregivers, n = 7; care recipients, n = 3). Table 1 provides an overview of the family members and study characteristics.
The relationship of the caregiver to the older adult is listed rather than self-identifying as primary and secondary caregivers because these titles were not relevant to African American family members. For example, Mr. Scott (note all names are pseudonyms) had eight children with the eldest daughter (Mrs. Alice) serving as the “coordinator” of his care. She provided the scheduling of activities and assignments for her siblings and extended family to engage in her father's care, while she was responsible for coordinating his transitions through the health care system. Mrs. Alice was pleased with the system they developed as a family, stating, “Everyone has a job and they know their role, which helps my father stay active and reduces my stress.”
Health and Activities that Promote Health
During the interviews, family members provided a range in their definitions of health. Milee expressed health as “feeling good.” Conversely, Mrs. Fields communicated that “without health you don't have anything.” Mrs. Bobby further explained health has to do with self-care and her mother is not healthy, stating, “It [health] is what you make it.” Another family member described the meaning of health as dependent on an individual's chronological age, stating, “It [health] shifts as you get older.” All definitions were grouped according to commonalities. Having no disease, taking care of self, and having physical strength were the prominent categories described by care recipients (n = 5). Similarly, caregivers described health as taking care of self (n = 9), having physical strength (n = 13), having a good quality of life (n = 13), being mentally sound (n = 8), and being spiritually in tune (n = 9). One of the nine caregivers that defined health as being spiritually in tune shared how a person is “not happy if their soul is not happy.” Family members explained how the above descriptions of health all work together and are linked to one another.
Family member definitions of health led to their description of activities that caregivers and care recipients believe promote health. All but one of the families (n = 17) described the importance of going to the physician, following prescribed orders, receiving proper rest, and eating right as HPAs. Stimulating and physical activity were identified by 15 families. Of the three family members who did not identify these activities as HPAs, two were in life transitions, with one family member facing a new diagnosis of ADRD for their older adult relative and the other family members contemplating hospice services for their care recipient. The third family included an ambulatory, 101-year-old woman with moderate dementia that heavily focused on religiosity as the primary avenue to promote health. However, Mr. and Mrs. Williams, whose care recipient had moderate dementia, shared how HPAs could be as simple as getting up and going outside or peddling a mini stationary exercise bike while sitting in the living room. Three families believed that reading and using technology helped stimulate care recipients' minds. Financial stability was important to participation in HPAs, as stated by one care recipient: “If I don't have money or the right insurance, I can't go to the doctor and afford healthy foods.” In addition, nine families discussed how praying, attending church, actively believing in God, and having faith played significant roles in health promotion. Claire summarized how “God will take care of you as long you ‘do the best in life.’”
HPA descriptions were grouped by common themes. Among the caregivers' themes of HPAs, taking care of self, having a positive attitude on life, social engagement, spiritual and religious activity, stimulation and active movement, and financial stability were included. The top three themes were taking care of self (n = 17), having a positive attitude on life (n = 15), and stimulation and active movement (n = 15). Taking care of self included taking medications, staying informed, going to the physician, and having a secure environment. Activities included in the category of having a positive attitude toward life were “being encouraging and persistent,” “having patience and commitment,” “showing love and affection,” “surrounding self in a good environment,” and “doing whatever makes you feel good as a person.” The category for stimulation and active movement included activities such as going outside, going to church, physical exercise, and intellectual exercise.
Consistent with their definitions of HPAs, family caregivers described four thematic domains of HPAs they were actively participating in with their care recipients: (a) social engagement, (b) stimulation, (c) care management, and (d) affection (Figure 1). Table 2 provides specific activities for these domains. All HPA domains were embedded throughout the trajectory. Specific activities, however, within the HPA domains varied across the ADRD trajectory (i.e., in the domain of care management, going to the physician was most frequent at the early stage, decreased at the moderate stage, and became non-existent with moderately severe and severe dementia). In the domain of stimulation, various forms of physical exercise were only in the early and moderate stages of dementia. The majority of individuals with moderate dementia considered watching television as a stimulation HPA, and listening to music, dancing, and singing prevailed in the moderate to severe stages of ADRD as healthy active and stimulating activities they enjoyed.
Health promotion activities performed together.
Family Involvement in Health Promotion Activities
Family members and older adults identified several barriers to participation in HPAs. These barriers were grouped according to those that directly relate to contextual/environmental features, the care recipient, and family caregivers. Contextual barriers included: (a) health care–related issues (n = 5); (b) limited community resources (n = 5); (c) insufficient financial/insurance support (n = 7); and (d) lack of support from family, church, and community (n =5). Three urban families addressed unsafe neighborhoods, increased incidence of local crime, and not having security cameras as reasons for not participating in outdoor HPAs. Mrs. Alice expressed that the older adult service organizations located in her area would not take her father because “they don't want the liability” of caring for an individual with moderate dementia who wanders. Further, the health care–related issues identified included lack of trust in the health care system, lack of communication between physicians, inadequate physician knowledge of ADRD, and that physicians were “always in a rush,” not taking time during appointment visits to listen to concerns: “After witnessing the breakdown in communication between the treating physicians and facilities, I hollered, screamed and cried…this is ridiculous. So imagine what all these other people go through, who don't have nobody to say this for them” (Mrs. Alice, caregiver).
In addition, four families commented on the poor services provided by the Veterans Health Administration (VA) and the extended amount of time it took to access the resources that could support family involvement in healthy activities: “The VA is really giving people the run around.... He [VA employee] wouldn't help none of the Blacks, that's why they got rid of him” (Paw Paw, care recipient).
The top three barriers to care recipients' participation in HPAs were comorbidities (n = 10), behavior and mood (n = 7), and mobility issues (n = 5). Paw Paw explained how his goddaughter “gets on [his] nerves,” which makes him not want to do anything. Caregiver barriers related to ability and/or involvement in HPAs with older adults included: working (n = 4), no transportation (n = 3), and their own health (n = 3). Caregivers shared how overwhelming this journey was, as Claire summed her frustration, stating, “There is just so many hours in the day when you have to work, be a wife, mother, and caregiver.”
All families believed that their involvement in HPAs enhanced the caregivers' and care recipients' quality of life. Families shared how performing HPAs together made their loved ones happy, put smiles on their faces, and, in return, when care recipients were happy, caregivers were motivated to stay involved. Twelve families discussed how their involvement in HPAs improved functional outcomes and increased care recipients' energy level. Mrs. Thomas explained that engaging in these activities made her feel “perkier and lighter…[and] keeps this brain flowing in the right direction.... I'm 75, but I'm still alive!” She acknowledged that when she does not participate in healthy activities, she is sluggish and more forgetful. These activities also promoted care recipients' emotional well-being. Milee explained that her mother's morale is great with activity. Likewise, her mother shared how she enjoys doing these things with her family; it makes her happy and feel good.
Family Involvement in Health Promotion Model
Description of the experiences resulted in a preliminary model of family involvement in HPAs for individuals with ADRD (Figure 2). This model begins with families (i.e., caregivers and care recipients) providing their definition of the concept of health, which inform HPAs that promote health. Next, family members describe their level of involvement in past and current HPAs. The type of activities and level of involvement are impacted by the care and disease trajectory, along with situational environments. Toward the end of the current study, families evaluated the impact of the level of involvement described on care recipients' happiness and functioning, which linked back to their perception of health. Ultimately, this preliminary model is intended to inform future research and the development of policy through testing person- and family-centered interventions.
Family involvement in the Health Promotion Model.
The current study provides a beginning understanding of the definition of health and HPAs for the design of interventions that supports increased family assistance with HPAs in African American older adults with ADRD. Families in the current study defined health consistent with the WHO's definition of complete physical, mental, and social well-being and not merely the absence of disease (“Preamble to the Constitution…”, 1948), despite the presence of ADRD. The importance of health as a care activity outcome was important to these family members, not solely the treatment of a disease, ADRD. Although ADRD is correlated with progressive loss of ability and function (Taylor, 2007) and associated with excess disability (Slaughter, Eliasziw, Morgan, & Drummond, 2011), similar to the study by Pender et al. (2006), the older adults and family caregivers in the current study viewed health for the individual with ADRD as a dynamic state and used HPAs to maintain functioning and promote happiness across disease and illness trajectories. In contrast to Pender et al. (2006), this dynamic view of health alters as older adults lose cognitive and functional abilities. In addition, Pender et al. (2006) suggest that motivation for healthy behavior is based on the individual's desire to prevent illness. The current research suggests that motivation for HPAs for individuals with ADRD is influenced by family members' and older adults' desire to promote happiness and maintain functioning as long as possible rather than focusing on preventing illness. Consistent with Pender et al. (2006), health promotion behaviors were influenced by both individual (lifestyle) and contextual (interpersonal and situational) factors. It is necessary to continue to clarify the meaning of health and importance of HPAs for families and individuals with ADRD and how these activities are valued in the overall context of their lives. In addition, there is a need to further explore the role that HPAs have in preventing illness for individuals with ADRD, as families in the current study expressed that going to the physician is a significant HPA but participation in this activity decreased as the disease progressed. Therefore, further research is needed to understand the correlation between illness prevention and health promotion for individuals with ADRD.
Similar to findings reported by Loeb (2006), family caregivers did not identify themselves as primary and/or secondary caregivers. Within the African American family unit there are multiple caregivers, extended family systems, and non-consanguineous kin involved in HPAs, reaffirming the importance for health care providers to pay close attention to family dynamics and capitalize on the advantage of having multiple family caregivers. Family caregivers do much more than just help with activities of daily living (Bookman & Harrington, 2007); rather, family involvement is complex and changes across the care trajectory (Epps, Skemp, Specht, & Maas, 2015). Future research should include methodologies that have the capabilities to capture complex care systems when exploring HPAs, such as older adult networks and network analysis. Many families in the current study engaged in care management HPAs, such as making sure their care recipients were clean, had their hair combed, and nails kept neat. Attractiveness can have an impact on older adults' quality of life (Campbell, 2005) and improve care networks and social interactions (Skemp Kelley, 2005). Findings for the current study support previous literature regarding individuals' with dementia involvement in HPAs impacting their quality of life (Phinney et al., 2007) and positive health behaviors (Buettner & Fitzsimmons, 2009). It is imperative for health care professionals to understand how families are promoting the health of older adults with ADRD to support active aging and quality of life.
As exemplified by Paw Paw's interactions at the VA, the African American community faces barriers to receiving and seeking proper and quality health care because of racism and cultural mistrust (Benkert, Peters, Clark, & Keves-Foster, 2006). The availability of formal African American–appropriate health care resources tends to be scarce and affects involvement in HPAs (Davies, 2011). Major barriers to HPAs were not within the purview of the family, but rather associated with the social determinants of health, such as neighborhood safety, health care–related issues, and lack of resources (U.S. Department of Health and Human Services, n.d.), necessitating system and policy interventions. Despite a desire to participate in HPAs (e.g., walking, going to church), there are insufficient resources and policies to provide safe environments for these activities. Physical modification of neighborhoods and communities can support families' and older adults' with ADRD participation in HPAs, such as providing sidewalks to allow for safe walking. Safe neighborhoods are imperative for these families to engage in HPAs. Future policy should address the safety in all neighborhoods regardless of zip codes or violence rates. Public campaigns are also required to promote awareness and understanding of the behaviors and needs of individuals with ADRD.
In the current study, more than one half of the families identified trying to access health care services, in particular those offered by the VA, as a barrier. Interestingly, families expected problems accessing services, as well as acknowledged that they were not aware of the services, other than those provided by the Council on Aging. This finding validates the critical importance for health care providers and service organizations to determine culturally informed ways to reach and educate older adults and families on services that could be of benefit (Skemp et al., 2016). Caregivers only saw physicians; gerontological nurses were not available. Caregivers spoke negatively about physicians' lack of knowledge and information given about HPAs. This behavior is consistent with the medical mandate to diagnose and treat illnesses and reinforces the critical need for gerontological nurses to practice to the full extent of their licenses in the provision of holistic care to treat the human response to an illness rather than treating a disease (American Nurses Association, 2016). To address the vulnerability of dementia caregivers, researchers need to further explore barriers associated with African American individuals with ADRD and their families accessing services and resources in the United States. Investigation of inequity in access to dementia care resources is essential to the provision of care for this underserved population. Training in advocacy skills will assist caregivers in navigating the health care system to access appropriate services at the right time and place.
Care recipients' mood and behavior when approached to engage in HPAs was a barrier and can be associated with depression and the progression of the disease (Pascucci et al., 2012). Slaughter et al. (2011) found that depression in individuals with ADRD was related to excess disability. However, as pleasant activity increased, older adults were more willing to participate in activities (Slaughter et al., 2011). Assisting families in identifying HPAs that will help overcome barriers associated with care recipients' mood behaviors is important. Thus, an understanding of barriers provides opportunities to develop appropriate health promotion interventions for optimal individual and family outcomes.