Alzheimer's disease and other dementias are the sixth leading cause of death in the United States, accounting for one third of all deaths among U.S. older adults in 2016 (Alzheimer's Association, 2018). Due to progressive memory loss and other cognitive impairments associated with dementia, it is important for persons with dementia (PWDs) and their family members to engage in advance care planning (ACP) early in the disease process. During ACP, individuals with dementia are encouraged to complete advance directives such as a living will (which specifies preferences for life support) and durable power of attorney for health care (which designates proxy decision makers for medical decisions). ACP can help PWDs discuss their values and preferences with family members and health care providers, record their wishes, and help their designated health care proxies. Often a family member makes decisions reflecting PWDs' values when PWDs can no longer make their own decisions at the end of life (EOL) (Dixon, Karagiannidou, & Knapp, 2018).
However, little is known about the experience of ethnically diverse PWDs and families, especially those living in rural areas. Approximately 14% of U.S. residents, 46.2 million of a total 316 million, live in rural areas, which cover 72% of the nation's geography (U.S. Department of Agriculture Economic Research Service, 2017). For PWDs who live in rural areas, there may be special challenges to engaging in ACP because their remote locations have fewer health care providers and services, including palliative care and hospice (Ashcraft & Owen, 2016). Unique cultural factors may influence ACP in rural areas such as those near the border between Mexico and Southwest Texas, where there are many Hispanic residents. Prior studies have documented lower rates of ACP participation among Hispanic individuals than among their non-Hispanic White counterparts (Ko, Lee, Ramirez, Lopez, & Martinez, 2018; Kwak & Haley, 2005).
Although, research suggests potential barriers to ACP and lower levels of ACP engagement among Hispanic residents in rural areas, no empirical study has explored ACP among Hispanic PWDs and families, as well as how family caregivers would make EOL care decisions for their relatives in rural communities. The current authors report an exploratory study of ACP and proxy decision making among PWDs and families in rural areas in Southwest Texas near the border with Mexico. The authors' goal was to understand PWDs' advance directive completion and the role of the family in proxy decision making in predominantly Hispanic rural communities.
A self-report survey was administered among a convenience sample of family caregivers of patients with memory problems or a diagnosis of Alzheimer's disease and related dementia. Family caregivers were recruited from outpatient family practice clinics near the border in South Texas where their relatives were receiving care. In the current study, family caregivers were defined as individuals who self-identify themselves as a family caregiver, or who have been caring for a relative by assisting with activities of daily living for at least 2 years. The clinics were in a predominately rural county with a population of 27,245, where 70% of the population was Hispanic individuals (U.S. Census Bureau, 2015). The county is designated by the U.S. Department of Health and Human Services (2002) as a medically underserved area, which is an area or population with too few primary care providers, high infant mortality, high poverty, or a high older adult population.
To participate in the survey, participants had to be 18 or older, able to read and write in English, and self-identify as a family caregiver. A total of 47 caregivers completed the self-administered questionnaire during a 3-week period between April and May 2017. Participants were recruited verbally or from flyers posted at the research sites. During the survey, caregivers answered questions about their relatives' demographic and functional characteristics, ACP, and about their own preferences for proxy decision making for PWDs (including EOL care decisions). The survey took approximately 20 to 25 minutes to complete. Informed consent was obtained prior to data collection and each participant received a $10 gift card upon completion of the instrument. The current study was approved by the University of Texas at Austin Institutional Review Board.
Participants answered four questions that have been used in previous studies with caregivers of PWD or Parkinson's disease (Kwak, De Larwelle, Oconnell-Valuch, & Kesler, 2016). These questions were about whether the caregiver's relative had completed a living will, shared the living will with the caregiver, completed a durable power of attorney for health care, and selected the caregiver as the durable power of attorney for health care. Response options were yes = 1 or no = 0.
Caregivers were presented with a hypothetical EOL scenario with conditions likely to occur at the end stage of dementia. This scenario was adapted from studies concerning PWDs (Volandes, Ariza, Abbo, & Paasche-Orlow, 2008) and their caregivers (Kwak et al., 2016). The EOL scenario included common end-stage dementia symptoms and indicated that the PWD's life expectancy was <1 year. Caregivers were asked to choose a goal of care and set of treatment options (Volandes et al., 2008) for their relative as the PWD within the scenario. The three options for goal of care were: life-prolonging care; limited care, which focuses on maintaining current physical and mental functions but not extending life; and comfort only care. The three options for treatments included performing everything available, performing everything except for cardiopulmonary resuscitation (CPR) or procedures used in the intensive care unit (ICU), and performing only procedures for pain and symptom control.
Caregivers were also asked two questions about medical decision making for their relative. The first question was: “Within the family, who makes health care decisions for your relative?” Response options included my relative alone, mostly my relative, my relative and myself and/or other family members equally, mostly myself and/or other family members, and myself and/or other family members alone. The second question was: “Who do you think should make health care decisions for your relative's condition?” Response options included the health care provider alone, mostly the health care provider, the health care provider and the family equally, mostly the family, and the family alone. Health care provider was defined as physician, nurse, and/or other health care professional. Family was defined as “your relative, you, and/or other members of your relative's family who have a role in making decisions for your relative.”
Descriptive statistics were used to examine sociodemographic, functional, and advance directive characteristics of PWDs and caregivers, as well as caregivers' choices for PWDs' EOL care goals and treatments in the hypothetical scenario. Other findings from the current study were reported elsewhere (Xie, Champion, Kwak, & Fleischmann, in press). All analyses were performed with SPSS version 25.0.
The final sample of caregivers included a total of 47 participants who identified themselves as non-Hispanic White (34%) or Hispanic and not White (66%) (Table 1). Caregivers have been caring for their relatives for an average of 32 months (SD = 26.2 months). Approximately 70% of caregivers were caring for their parents (data not shown). Hispanic caregivers were younger than White caregivers (mean age = 47.9, SD = 11.9 years vs. mean age = 58.5, SD = 13.4 years, p < 0.05), and not likely to have attended or completed college or graduate school (42.9% vs. 81.3%, p < 0.05). Hispanic PWDs were younger than White PWDs (77.3 vs. 84.2 years, p < 0.05), not likely to have attended or completed college or graduate school (7.4% vs. 68.8%, p < 0.05), and more likely to be on Medicaid (51.6% vs. 18.8%, p < 0.05). Fewer Hispanic PWDs than White PWDs had moderate to high memory problems (32.3% vs. 56.3%, p < 0.05).
Characteristics of Persons with Dementia (PWD) and Caregivers
As shown in Table 2, more than one half of PWDs had completed a living will (60%) and made legal arrangements to designate a health care power of attorney (60%). Hispanic PWDs were less likely than White PWDs to have completed a living will (45% vs. 88%, p < 0.05) or to have designated a health care power of attorney (48% vs. 81%, p < 0.05).
Advance Care Planning and Medical Decision Making by Persons with Dementia (PWD) and Caregivers
Thirty-six percent of caregivers reported that the PWD, caregiver, and family members made decisions equally, although 46% of caregivers reported that either family members or caregivers made medical decisions for patients. Approximately 57% of caregivers reported that medical decisions for the PWD should be made equally by the health care provider and family.
When caregivers were asked about goals of care and treatment options, the choices of treatment options varied between Hispanic and White caregivers. Approximately 81% of White caregivers chose the option to perform only procedures for pain and symptom control, whereas 42% of Hispanic caregivers chose this option. Higher proportions of Hispanic caregivers as opposed to White caregivers chose the options to perform everything available (29% vs. 0%) and to perform everything except for CPR or procedures used in the ICU (26% vs. 13%).
In the United States, the populations of PWDs and Hispanic older adults are growing rapidly. Given the progressive nature of dementia and the higher risk of dementia among older Hispanic individuals (Alzheimer's Association, 2018), it is essential for health care providers to effectively support this growing group to engage in communication and planning for their future health care, including ACP.
In the current study, more than one half of PWDs (60%) reported having completed a living will or designated a health care power of attorney. The advance directive completion rates of this sample are somewhat similar to rates reported in other studies with PWDs (65% completion rate reported in the current study [Lingler et al., 2008]), but higher than rates in studies with rural samples (32% [Ashcraft & Owen, 2016]). The ACP literature (Institute of Medicine, 2015) has consistently documented that older adults with health problems are likely to engage in ACP than those without health problems. It may be that as dementia affects cognitive and functional health progressively, even PWDs in rural areas are likely to be encouraged to engage in ACP with increasing recognition of the need for family members and health care providers to be actively engaged in medical decision making. For example, most caregivers preferred medical decisions for the PWD be made equally by the health care provider and family, and one half of caregivers reported that medical decisions for the PWD were made mostly by the caregiver or family members.
Regarding ethnic differences, the results of the current study support the findings of prior descriptive research. Hispanic PWDs in the current study were less likely to have advance directives, and Hispanic caregivers were likely to choose curative treatments for PWDs under the EOL scenario. Hispanic individuals may be reluctant to talk with someone about EOL care planning because discussion about EOL topics is discouraged (Kwak, Ko, & Kramer, 2014). An emphasis on respect for health care providers and family-centered decision making, as well as disparities in access to information and resources regarding ACP, may also serve as factors influencing ACP and EOL decision making among Hispanic individuals (Ko et al., 2018; Kwak & Haley, 2005).
Several limitations of the current study should be noted. The cross-sectional design with a small convenience sample of caregivers limits generalizability. The small sample prevented multivariate analysis to further examine the unique role of ethnicity or culture while controlling for group differences in key characteristics (i.e., PWDs' age, education, cognitive impairment, and Medicaid status). In addition, PWDs' preferences for EOL care as expressed by caregivers are only a proxy for actual decision making. Finally, PWDs' preferences were obtained from caregivers because the authors did not have access to actual advance directive documents.
Despite these limitations, the authors' findings provide implications for clinical practice and research. Although participation in ACP is lower for Hispanic PWDs than for their White peers, the rates of ACP participation for both groups were still higher than those reported among rural older adults. Hispanic PWDs may be likely to consider and plan for EOL care if further efforts are made by nurses and other health care team members to develop and deliver culturally sensitive ACP support and palliative care programs and services. Nurses can help patients and families reflect on their values and integrate them into their care planning. Nurses and other health care providers can improve their skills for engaging in ACP by using many available resources, including a training video developed by the Centers for Disease Control and Prevention (2015) for health care and aging services professionals, to consider their roles in ACP for older adults. In addition, the Conversation Project (access https://theconversationproject.org) provides useful tools and training resources on ACP, including resources for PWDs. With necessary skills to facilitate ACP conversations, nurses can focus their efforts to engage PWDs and family members in education about dementia care, including the trajectory of dementia and the need for future care planning. Culturally sensitive training curricula should reflect the importance of family involvement, including whom they want to be present in discussions about EOL and how they want to receive information.
Future studies should further assess ACP and actual EOL decision-making situations by using prospective, mixed methods designs with more representative samples of Hispanic PWDs and family caregivers across regions to provide a fuller picture of ACP practices and the role of ethnicity and culture. Important questions that should be explored include who initiates the ACP process among culturally diverse PWDs and their families, which topics are discussed, how much PWDs and family members are engaged in the discussion, and if these discussions are facilitated by health care providers. Furthermore, as ACP is a continuous dynamic process that needs to be revisited throughout the trajectory of dementia, there is a need for prospective studies to examine if and how PWDs and family caregivers revisit their preferences for EOL care and discuss them with health care providers over time. Findings from such studies can help inform development of targeted intervention approaches to promote ACP among culturally diverse groups of PWDs and families across the dementia trajectory.
- Alzheimer's Association. (2018). 2018 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 14, 367–429. doi:10.1016/j.jalz.2018.02.001 [CrossRef]
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- Centers for Disease Control and Prevention. (2015). Advance care planning course. Retrieved from https://www.cdc.gov/aging/advancecareplanning/care-planning-course.html
- Dixon, J., Karagiannidou, M. & Knapp, M. (2018). The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: A systematic review and critical discussion. Journal of Pain and Symptom Management, 55, 132–150.e1. doi:10.1016/j.jpainsymman.2017.04.009 [CrossRef]
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- Ko, E., Lee, J., Ramirez, C., Lopez, D. & Martinez, S. (2018). Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region. Palliative & Supportive Care, 16, 520–527. doi:10.1017/S147895151700092X [CrossRef]
- Kwak, J., De Larwelle, J.A., Oconnell-Valuch, K. & Kesler, T. (2016). Role of advance care planning in proxy decision making among individuals with dementia and their family caregivers. Research in Gerontological Nursing, 9, 72–80. doi:10.3928/19404921-20150522-06 [CrossRef]
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- Xie, B., Champion, J.D., Kwak, J. & Fleischmann, K.R. (in press). Mobile health, information preferences, and surrogate decision-making preferences of family caregivers of persons with dementia in rural Hispanic communities: A pilot study. Journal of Medical Research.
Characteristics of Persons with Dementia (PWD) and Caregivers
|Characteristic||All (N = 47)||Hispanic (n = 31)||Non-Hispanic White (n = 16)||p Value|
|Mean age (years) (SD) (range)||52.6 (13.8) (27 to 85)||47.9 (11.9) (27 to 78)||58.5 (13.4) (37 to 85)||<0.05|
|Gender: female (n, %)||39 (83)||28 (90)||11 (69)|
|Education (n, %)||<0.05|
| Less than high school||6 (13)||6 (19)||0|
| Completed high school||13 (28)||10 (32)||3 (18.8)|
| Attended or completed college or graduate school||25 (53)||12 (39)||13 (81.3)|
|Mean months in caregiving (SD) (range)||32.3 (26.2) (2 to 96)||34.4 (29.1) (2 to 96)||28.2 (19.6) (4 to 60)|
|Mean age (years) (SD) (range)||78.9 (9.2) (60 to 95)||77.3 (8.8) (60 to 91)||84.2 (8.1) (65 to 95)||<0.05|
|Gender: female (n, %)||37 (79)||24 (77)||13 (81)|
|Education (n, %)||<0.05|
| Less than high school||23 (49)||21 (71)||1 (6.3)|
| Completed high school||7 (15)||3 (10)||4 (25)|
| Attended or completed college or graduate school||13 (28)||2 (6)||11 (68.8)|
|Health insurance: Medicare (n, %)||38 (81)||26 (84)||12 (75)|
|Health insurance: Medicaid (n, %)||19 (40)||16 (51.6)||3 (18.8)||<0.05|
|PWD is a parent to the caregiver (n, %)||37 (79)||26 (83.9)||12 (75)|
|Living situation (n, %)|
| Alone||12 (26)||8 (25.8)||4 (25)|
| With the caregiver||9 (19)||5 (16.1)||4 (25)|
| With another relative||15 (32)||11 (35.5)||4 (25)|
| In a group home or nursing home||11 (23)||7 (22.6)||4 (25)|
|Memory problem: yes (n, %)||39 (83)||24 (77.4)||15 (93.8)|
|Dementia diagnosis: yes (n, %)||30 (64)||21 (68)||9 (56)|
| Mean no. of months since diagnosis (SD) (range)||41.1 (42.7) (1 to 183)||39.9 (48) (1 to 183)||43.9 (28.8) (3 to 77)|
| Severity (n, %)||<0.05|
| Not at all||15 (32)||13 (41.9)||2 (12.5)|
| A little||10 (21)||6 (19.4)||4 (25)|
| Moderate||15 (32)||10 (32.3)||5 (31.3)|
| Very to extreme||4 (9)||0||4 (25)|
|Mean activities of daily living score (SD) (range)||11.8 (5.8) (6 to 24)||12.2 (6.13) (6 to 24)||10.3 (4.4) (6 to 24)|
|Mean instrumental activities of daily living score (SD) (range)||26.6 (9.3) (11 to 40)||27.1 (9.7) (11 to 40)||25.4 (8.9) (14 to 37)|
Advance Care Planning and Medical Decision Making by Persons with Dementia (PWD) and Caregivers
|Variable||n (%)||p Value|
|All (N = 47)||Hispanic (n = 31)||Non-Hispanic White (n = 16)|
|PWD's Advance Care Planning|
|PWD completed a living will||28 (60)||14 (45)||14 (88)||<0.05|
| Shared a copy of a living will with the caregiver||20 (71)a||11 (79)a||9 (64)a|
|PWD designated a health care power of attorney||28 (60)||15 (48)||13 (81)||<0.05|
| Caregiver is the health care power of attorney||18 (62)b||8 (53)b||10 (77)b|
|Medical Decision Making for PWD's Care|
|How medical decisions for the PWD are made within the family|
| Relative alone||2 (4)||2 (6)||0|
| Mostly relative||3 (6)||2 (6)||1 (6)|
| Relative and myself and/or other family members equally||17 (36)||12 (39)||5 (31)|
| Mostly myself and/or family members||11 (23)||6 (19)||5 (31)|
| Mostly myself and/or other family members alone||11(23)||7 (23)||4 (25)|
|How medical decisions for the PWD should be made|
| Health care provider alone||0||0||0|
| Mostly health care provider alone||3 (6)||3 (10)||0|
| Health care provider and family equally||27 (57)||16 (52)||11 (69)|
| Mostly family||10 (21)||6 (19)||4 (25)|
| Family alone||5 (11)||5 (16)|
|Treatment the caregiver would choose for the PWD in the scenario|
| Life prolonging||9 (19)||8 (26)||1 (6)|
| Limited care||17 (36)||12 (39)||5 (31)|
| Comfort only||19 (40)||10 (32)||9 (56)|
|Treatment the caregiver would choose for the PWD in the scenario||<0.05|
| Everything available||9 (19)||9 (29)||0|
| Everything except for CPR/ICU||10 (21)||8 (26)||2 (13)|
| Only pain and symptom control||26 (55)||13 (42)||13 (81)|