Association of Depressive Symptomatology with Receipt of Informal Caregiving Among Older American Indians: The Native Elder Care Study Marc B. Schure, Ph.D., R. Turner Goins, Ph.D.
Objectives: Our study objectives were to identify the primary sources of informal caregiving and to examine the association of depressive symptomatology with receipt of informal caregiving among a sample of community-dwelling older American Indians. Design: We conducted a cross-sectional study of older American Indians. Participants: Community-dwelling adults aged 55 years and older who are members of a federally recognized American Indian tribe in the Southeast United States. Measurements: We collected information on the participant’s primary caregiver, number of informal care hours received in the past week, depressive symptomatology, demographic characteristics, physical health status, and assistance need. Results: Daughters, spouses, and sons were the most common informal primary caregivers with distinct differences by sex of those receiving care. Compared with participants with lower levels, those with a high level of depressive symptomatology received substantially greater hours of informal care (33.4 versus 11.5 hours per week). Conclusions: Older American Indians with higher levels of depressive symptomatology received more informal caregiving than those with lower depressive symptomatology. The burden of caregiving of older adults is primarily shouldered by spouses and children with those who care for older adults with depressive symptomatology likely experiencing an even greater burden of care. (Am J Geriatr Psychiatry 2014; -:-e-) Key Words: American Indians, depressive symptomatology, informal caregiving
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ccording to the World Health Organization, by 2020 major depression will surpass many other serious diseases as the second leading contributor to the global burden of disease.1 The prevalence of clinically significant depressive symptoms among
older community-dwelling adults in the United States typically ranges from 8%e16%,2 with occurrence varying primarily by demographic characteristics. For example, some studies have found substantially higher prevalence among certain racial
Received October 23, 2013; revised March 12, 2014; accepted March 31, 2014. From the Health Services Research and Development (MBS), VA Puget Sound Health Care System, Seattle, WA; and the Department of Social Work, College of Health and Human Sciences (RTG), Western Carolina University, Cullowhee, NC, and Center for Healthy Aging, Mountain Area Health Education Center, Asheville, NC. Send correspondence and reprint requests to Marc B. Schure, Ph.D., Health Services Research and Development, VA Puget Sound Health Care System, 1100 Olive Way, Ste. 1400, Seattle, WA 98101. e-mail: [email protected] Ó 2014 American Association for Geriatric Psychiatry http://dx.doi.org/10.1016/j.jagp.2014.03.013
Am J Geriatr Psychiatry
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2014
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The Native Elder Care Study and ethnic minority populations.3,4 Late life depression is associated with increased number of chronic health conditions and physical disabilities.5e8 The presence of comorbid depression appears to have a substantive impact on receipt of informal caregiving independent of physical health status. Informal caregiving is unpaid care provided by family members and friends to those in need of assistance with daily activities. Several studies have found that persons with chronic health conditions and physical disabilities that co-occur with depressive symptoms receive more informal and formal care than those without comorbid depressive symptoms.9e12 In fact, adults aged 70 years and older with depressive symptoms have been found to receive twice the number of informal caregiving hours than those without depressive symptoms.10 Moreover, additional research has indicated that after controlling for disease severity, comorbid depression was associated with greater outpatient service use and approximately 50% increased cost in medical care among adults in the United States.9,13 The availability of informal caregivers is an important resource delaying and/or preventing institutionalization,14 and therefore identifying caregiving need is a key component in achieving most older adults’ desire to “age in place.” Aging in place denotes older adults’ capacity for continued residence at home even until advanced age.15 Informal caregiving need is often determined by the number of activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs) in which a person has difficulty performing. Over 6 million adults aged 65 years and older in the United States need some form of caregiving,16 with approximately two-thirds of them eventually needing such care for an average of two years.17 Adults in the United States aged 65 years and older who died at home between 2000 and 2002 received an average of 65.8 informal caregiving hours per week during their last year of life.18
STUDY OBJECTIVE Older American Indians experience some of the highest rates of physical disability19e21 and disproportionately suffer from poorer physical and mental health compared with other racial and ethnic populations.22,23 Evidence suggests that the prevalence of
2
clinically significant depressive symptomatology among older American Indians is higher than that of same-aged adults of other races and ethnicities.4,24 No identified studies have examined the association of depressive symptomatology with the receipt of informal care among older American Indians. There is a critical need to assess receipt of informal care in this vulnerable population, as evidenced by a high unmet need for long-term care.25,26 Thus, our study objectives were to identify the primary sources of informal caregiving and to examine the association of depressive symptomatology with receipt of informal caregiving among a sample of community-dwelling older American Indians.
METHODS Study Design and Data Collection Data for this study originate from the Native Elder Care Study, a cross-sectional study of communitydwelling older adult members of a federally recognized American Indian tribe located in the Southeast region of the United States.27 Data were collected from 2006 to 2008 using in-person interviewer-administered surveys and included information about demographic characteristics, physical disability, mental and physical health, personal assistance needs, health care use, and psychosocial factors. The tribe’s institutional review board, tribe’s health board, tribal council, tribal elder council, and the West Virginia University institutional review board approved the project. All study participants provided informed consent and received a $20 gift card for completing the interview. The Oregon State University institutional review board approved the secondary data analyses for this study. Sample Study inclusion criteria were being an enrolled tribal member, aged 55 years or older, being a resident in the tribal service area, non-institutionalized, and having passed a cognitive screen. We used an age threshold of 55 years rather than 65 years because it was requested by the project’s tribal stakeholders and data has shown rapid declines in health status and shorter life expectancy among American Indians compared with other racial and ethnic groups.28,29
Am J Geriatr Psychiatry
-:-, -
2014
Schure and Goins Based on age and residential location, we generated a list of 1,430 eligible tribal members from tribal enrollment records. To ensure equal representation across the range of ages, an age-stratified random sample was taken of 680 tribal members from the following age groups: 55e64 years, 65e74 years, and 75 years and older. We recruited study participants by a telephone call or a visit to their home. Of the 680 individuals, 47 could not be located and 50 were deemed ineligible. Of the remaining 583 persons, 78 declined participation, resulting in a total of 505 participants and an 86.6% response rate. Of the 195 persons who had an assistance need, 180 were receiving informal care at the time of this study. Measures Sources and receipt of informal caregiving. We identified the most predominantly used caregivers by asking participants who helps them the most (among the unpaid persons), with a list including spouse/ significant other, daughter, daughter-in-law, son, son-in-law, granddaughter, grandson, neighbor, and other (specifying the relationship to the respondent). Receipt of informal caregiving was measured as the reported number of informal care hours received per week by study participants with disability-associated assistance needs. Participants who had difficulties in performing one or more ADLs or IADLs were asked the number of hours of unpaid per week they receive for these activities. Depressive symptomatology. Depressive symptomatology was assessed with the Centers for Epidemiologic StudieseDepression (CES-D) scale.30 This scale has been widely used in population-based studies and its validity and reliability has been confirmed among older adults and across different racial and ethnic groups,31 including older American Indians.32 Participants were asked how often they felt each symptom in the past week, with sample items including (1) I felt fearful, (2) I enjoyed life, and (3) people were unfriendly. The response options included: 0 ¼ rarely or none of the time; 1 ¼ some or a little of the time; 2 ¼ occasionally or a moderate amount of time; and 3 ¼ most or all of the time. Positive affect items were reverse coded. Therefore, the total sum score ranges from 0 to 60 comprising both the count and frequency of experiencing each of the CES-D items. For our study sample, the internal
Am J Geriatr Psychiatry
-:-, -
2014
consistency was high (a ¼ 0.89). Based on past recommendations, we used a tiered (low: 0e9, moderate: 10e19, and high: 20) approach for identifying subsyndromal depression in addition to identifying higher depressive symptomatology.33 Demographic characteristics. Demographic characteristics included age, sex, marital status (married/ partner versus unmarried), educational attainment (
Objectives: Our study objectives were to identify the primary sources of informal caregiving and to examine the association of depressive symptomatology with receipt of informal caregiving among a sample of community-dwelling older American Indians. Design: We conducted a cross-sectional study of older American Indians. Participants: Community-dwelling adults aged 55 years and older who are members of a federally recognized American Indian tribe in the Southeast United States. Measurements: We collected information on the participant’s primary caregiver, number of informal care hours received in the past week, depressive symptomatology, demographic characteristics, physical health status, and assistance need. Results: Daughters, spouses, and sons were the most common informal primary caregivers with distinct differences by sex of those receiving care. Compared with participants with lower levels, those with a high level of depressive symptomatology received substantially greater hours of informal care (33.4 versus 11.5 hours per week). Conclusions: Older American Indians with higher levels of depressive symptomatology received more informal caregiving than those with lower depressive symptomatology. The burden of caregiving of older adults is primarily shouldered by spouses and children with those who care for older adults with depressive symptomatology likely experiencing an even greater burden of care. (Am J Geriatr Psychiatry 2014; -:-e-) Key Words: American Indians, depressive symptomatology, informal caregiving
A
ccording to the World Health Organization, by 2020 major depression will surpass many other serious diseases as the second leading contributor to the global burden of disease.1 The prevalence of clinically significant depressive symptoms among
older community-dwelling adults in the United States typically ranges from 8%e16%,2 with occurrence varying primarily by demographic characteristics. For example, some studies have found substantially higher prevalence among certain racial
Received October 23, 2013; revised March 12, 2014; accepted March 31, 2014. From the Health Services Research and Development (MBS), VA Puget Sound Health Care System, Seattle, WA; and the Department of Social Work, College of Health and Human Sciences (RTG), Western Carolina University, Cullowhee, NC, and Center for Healthy Aging, Mountain Area Health Education Center, Asheville, NC. Send correspondence and reprint requests to Marc B. Schure, Ph.D., Health Services Research and Development, VA Puget Sound Health Care System, 1100 Olive Way, Ste. 1400, Seattle, WA 98101. e-mail: [email protected] Ó 2014 American Association for Geriatric Psychiatry http://dx.doi.org/10.1016/j.jagp.2014.03.013
Am J Geriatr Psychiatry
-:-, -
2014
1
The Native Elder Care Study and ethnic minority populations.3,4 Late life depression is associated with increased number of chronic health conditions and physical disabilities.5e8 The presence of comorbid depression appears to have a substantive impact on receipt of informal caregiving independent of physical health status. Informal caregiving is unpaid care provided by family members and friends to those in need of assistance with daily activities. Several studies have found that persons with chronic health conditions and physical disabilities that co-occur with depressive symptoms receive more informal and formal care than those without comorbid depressive symptoms.9e12 In fact, adults aged 70 years and older with depressive symptoms have been found to receive twice the number of informal caregiving hours than those without depressive symptoms.10 Moreover, additional research has indicated that after controlling for disease severity, comorbid depression was associated with greater outpatient service use and approximately 50% increased cost in medical care among adults in the United States.9,13 The availability of informal caregivers is an important resource delaying and/or preventing institutionalization,14 and therefore identifying caregiving need is a key component in achieving most older adults’ desire to “age in place.” Aging in place denotes older adults’ capacity for continued residence at home even until advanced age.15 Informal caregiving need is often determined by the number of activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs) in which a person has difficulty performing. Over 6 million adults aged 65 years and older in the United States need some form of caregiving,16 with approximately two-thirds of them eventually needing such care for an average of two years.17 Adults in the United States aged 65 years and older who died at home between 2000 and 2002 received an average of 65.8 informal caregiving hours per week during their last year of life.18
STUDY OBJECTIVE Older American Indians experience some of the highest rates of physical disability19e21 and disproportionately suffer from poorer physical and mental health compared with other racial and ethnic populations.22,23 Evidence suggests that the prevalence of
2
clinically significant depressive symptomatology among older American Indians is higher than that of same-aged adults of other races and ethnicities.4,24 No identified studies have examined the association of depressive symptomatology with the receipt of informal care among older American Indians. There is a critical need to assess receipt of informal care in this vulnerable population, as evidenced by a high unmet need for long-term care.25,26 Thus, our study objectives were to identify the primary sources of informal caregiving and to examine the association of depressive symptomatology with receipt of informal caregiving among a sample of community-dwelling older American Indians.
METHODS Study Design and Data Collection Data for this study originate from the Native Elder Care Study, a cross-sectional study of communitydwelling older adult members of a federally recognized American Indian tribe located in the Southeast region of the United States.27 Data were collected from 2006 to 2008 using in-person interviewer-administered surveys and included information about demographic characteristics, physical disability, mental and physical health, personal assistance needs, health care use, and psychosocial factors. The tribe’s institutional review board, tribe’s health board, tribal council, tribal elder council, and the West Virginia University institutional review board approved the project. All study participants provided informed consent and received a $20 gift card for completing the interview. The Oregon State University institutional review board approved the secondary data analyses for this study. Sample Study inclusion criteria were being an enrolled tribal member, aged 55 years or older, being a resident in the tribal service area, non-institutionalized, and having passed a cognitive screen. We used an age threshold of 55 years rather than 65 years because it was requested by the project’s tribal stakeholders and data has shown rapid declines in health status and shorter life expectancy among American Indians compared with other racial and ethnic groups.28,29
Am J Geriatr Psychiatry
-:-, -
2014
Schure and Goins Based on age and residential location, we generated a list of 1,430 eligible tribal members from tribal enrollment records. To ensure equal representation across the range of ages, an age-stratified random sample was taken of 680 tribal members from the following age groups: 55e64 years, 65e74 years, and 75 years and older. We recruited study participants by a telephone call or a visit to their home. Of the 680 individuals, 47 could not be located and 50 were deemed ineligible. Of the remaining 583 persons, 78 declined participation, resulting in a total of 505 participants and an 86.6% response rate. Of the 195 persons who had an assistance need, 180 were receiving informal care at the time of this study. Measures Sources and receipt of informal caregiving. We identified the most predominantly used caregivers by asking participants who helps them the most (among the unpaid persons), with a list including spouse/ significant other, daughter, daughter-in-law, son, son-in-law, granddaughter, grandson, neighbor, and other (specifying the relationship to the respondent). Receipt of informal caregiving was measured as the reported number of informal care hours received per week by study participants with disability-associated assistance needs. Participants who had difficulties in performing one or more ADLs or IADLs were asked the number of hours of unpaid per week they receive for these activities. Depressive symptomatology. Depressive symptomatology was assessed with the Centers for Epidemiologic StudieseDepression (CES-D) scale.30 This scale has been widely used in population-based studies and its validity and reliability has been confirmed among older adults and across different racial and ethnic groups,31 including older American Indians.32 Participants were asked how often they felt each symptom in the past week, with sample items including (1) I felt fearful, (2) I enjoyed life, and (3) people were unfriendly. The response options included: 0 ¼ rarely or none of the time; 1 ¼ some or a little of the time; 2 ¼ occasionally or a moderate amount of time; and 3 ¼ most or all of the time. Positive affect items were reverse coded. Therefore, the total sum score ranges from 0 to 60 comprising both the count and frequency of experiencing each of the CES-D items. For our study sample, the internal
Am J Geriatr Psychiatry
-:-, -
2014
consistency was high (a ¼ 0.89). Based on past recommendations, we used a tiered (low: 0e9, moderate: 10e19, and high: 20) approach for identifying subsyndromal depression in addition to identifying higher depressive symptomatology.33 Demographic characteristics. Demographic characteristics included age, sex, marital status (married/ partner versus unmarried), educational attainment (
