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Journal of Gerontological Social Work Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wger20
Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities a
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Zina Kally , Debra L. Cherry , Susan Howland & Monica Villarruel
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Institute for Change, Partners in Care Foundation, San Fernando, California, USA b
California Southland Chapter, Alzheimer’s Association, Los Angeles, California, USA c
Institute for Change, Partners in Care Foundation, San Fernando, California, USA Accepted author version posted online: 30 Oct 2013.Published online: 12 May 2014.
To cite this article: Zina Kally, Debra L. Cherry, Susan Howland & Monica Villarruel (2014) Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities, Journal of Gerontological Social Work, 57:6-7, 710-727, DOI: 10.1080/01634372.2013.854856 To link to this article: http://dx.doi.org/10.1080/01634372.2013.854856
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Journal of Gerontological Social Work, 57:710–727, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2013.854856
Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities ZINA KALLY Downloaded by [University of Nebraska, Lincoln] at 19:04 27 October 2014
Institute for Change, Partners in Care Foundation, San Fernando, California, USA
DEBRA L. CHERRY and SUSAN HOWLAND California Southland Chapter, Alzheimer’s Association, Los Angeles, California, USA
MONICA VILLARRUEL Institute for Change, Partners in Care Foundation, San Fernando, California, USA
This study presents the results of the work of the Asian Pacific Islander Dementia Care Network (APIDCN)—a collaborative model of care created to develop community capacity to deliver dementia capable services, build community awareness about Alzheimer’s disease and other dementias, and offer direct services to caregivers in the API community in Los Angeles. Through trainings, mentoring, and outreach campaigns, the APIDCN expanded the availability of culturally competent services in the API community. The knowledge that was embedded within partner organizations and in the community at large assures sustainability of the services after the project ended. KEYWORDS Alzheimer’s, dementia, Asian, APIDCN, Dementia Care Network
INTRODUCTION From 2005 to 2050, the nation’s elderly population will more than double in size (Pew Research Center, 2008) with the fastest rate of growth occurring among Asian/Pacific Islander (API) and Hispanic elderly (Campbell, 1994). Received 15 May 2013; revised 28 September 2013; accepted 30 September 2013. Address correspondence to Zina Kally, Research & Evaluation, Institute for Change, Partners in Care Foundation, 732 Mott Street, Suite 150, San Fernando, CA 91340, USA. Email: [email protected] Color versions of one or more of the figures in the article can be found online at www.tandfonline. com/wger.
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In California, the API population is projected to reach almost 10 million by 2020 (Campbell, 1994) with those aged 50 and older growing at more than twice the rate of all baby boomers by 2016 (AARP, 2012). As the number of minority elders increases, so does the number of those suffering from neurocognitive disorders (American Psychiatric Association, 2013; Chen, Borson, & Scanlan, 2000). Between 2000 and 2004, African Americans and APIs showed the greatest increase in reported deaths due to Alzheimer’s disease (Alzheimer’s Association, 2009). In 2010, Alzheimer’s disease was the 10th leading cause of death for API men and the 6th leading cause of death for API women (Centers for Disease Control and Prevention/National Center for Health Statistics [CDC/NCHS], 2011). Although the incidence of Alzheimer’s disease in the general population over age 55 in California is projected to double by 2030, it will triple among the API community, creating a burgeoning need for culturally competent dementia care (Ross, Brennan, Nazareno, & Fox, 2009). Minorities face extra challenges in accessing care and dementia services. Structural barriers, such as accessibility, affordability, and availability of services, including lack of knowledge about services, lack of linguistically matched services, lower rates of health insurance and other financial resources, and lack of transportation, are very common. The API population is more likely to be uninsured than the general population (AARP, 2012; Asian American Center for Advancing Justice, 2013). Many API populations are foreign-born and unfamiliar with the Western health system. The Chinese elders in one study found the American health care system very confusing and intimidating (Pang, Jordan-Marsh, Silverstein, & Cody, 2003). They reported that they did not use their Medicare or Medicaid benefits because they did not fully understand the policies and what treatments and medications were covered (Pang et al., 2003). This unfamiliarity, combined with the medical community’s lack of understanding of API health practices and beliefs, can create distrust. Although there is great variability in levels of acculturation among different API communities, in general, language is one of the greatest barriers in access to care for API populations. More than three-quarters (77%) of all Asian Americans speak a language other than English at home, and 37.4% speak English less than “very well” (US Census Bureau, 2011). Among local households that speak a language other than English at home, Asian Americans have the highest rate of linguistic isolation in Southern California (Asian American Center for Advancing Justice, 2013; Asian & Pacific Islander American Health Forum, 2009). Approximately 65% of Asian Americans aged 65 years and older experience some difficulty communicating in English (Asian Pacific American Legal Center, 2009). Accessible and culturally proficient services for API families are limited, further isolating these communities. Many elders depend on others to assist them with transportation and translation for appointments with doctors (Pang et al., 2003).
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There is a general lack of awareness of dementia in the API community, which contributes to the stigma of the disease (Jones, Chow, & Gatz, 2006; Trinh & Ahmed, 2009). Asian American families report that they experience shame when an older family member develops a chronic health condition, especially when that illness causes mental changes, like those seen in Alzheimer’s and other dementias (Liu, Hinton, Tran, Hinton, & Barker, 2010; Paniagua, 2005; Trinh & Ahmed, 2009). Families try to protect their loved ones from exposure and are reluctant to reveal these illnesses and seek help. Others view dementia as a normal part of aging and delay seeking help or never seek help (Liu et al., 2010). Yet, prompt and thorough assessment of older adults exhibiting cognitive changes is essential to rule out other treatable health or mental health conditions that may be partially or wholly reversible with appropriate treatment. Medications are also available to slow the progress of Alzheimer’s disease, which can extend quality of life for both elders and their families, but they are most effective at the early stages of the disease (Sano, 2003; Winblad & Jelic, 2004). Ethnic minority elders generally are less likely to receive an Alzheimer’s diagnosis until the disease is in its late stages, when effective intervention and treatment are no longer possible (Ayalon, & Areán, 2004; Hinton, Guo, Hillygus, & Levkoff, 2000; Ross et al., 2009). The three Asian cultural groups, Chinese, Japanese, and Filipino, engaged through this project exhibited similarities to some common cultural barriers to service utilization among APIs. They valued filial piety or respect for elders; they viewed dementia as a highly stigmatized condition; and, perhaps as a result, they were reluctant to access supportive services that could expose the elder or the family to shame (Yeo & Gallagher-Thompson, 2006). To address cultural barriers to service utilization and the growing need for information, education, and services in ethnically diverse communities, the State of California’s Departments of Aging and Public Health Services in collaboration with the Alzheimer’s Association, California Southland Chapter, have invested over 20 years of effort into first developing and then implementing a model of care for under-served communities, called Dementia Care Network (DCN). Established to provide dementia care services within ethnic communities, the DCN is an interorganizational community-based collaborative model that brings together nonprofit human services providers, program consumers, community representatives, and government entities. The DCN model has five major goals: (a) to convene a network of local community organizations and service providers that serve older adults in a targeted ethnic community; (b) to collaboratively conduct a needs assessment and asset-based community mapping identifying gaps and barriers to service delivery as well as strengths; (c) to immediately offer services by better coordinating existing services in the target area; (d) to develop community capacity to deliver dementia capable services through care management and professional training; and (e) to build community awareness about Alzheimer’s disease and other dementias. To date, the DCN model
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has been applied to a number of individual ethnic communities in California and other states, including Latino/Hispanics, African Americans, Chinese, Japanese, Korean, Filipino, and Vietnamese. In July 2009, with the funding from the Harry and Jeannette Weinberg Foundation, the Alzheimer’s Association, California Southland Chapter began a project to expand existing Japanese and Chinese DCNs and to start a DCN for Filipino Americans. A combined Asian Pacific Islander Dementia Care Network (APIDCN) was established to bridge the gap in services available to these three API communities in the central city area of Los Angeles. This article presents the results of the work the APIDCN carried out during the project period (July 2009–November 2012), including services established and outcomes achieved in participating communities.
ASIAN PACIFIC ISLANDER DEMENTIA CARE NETWORK Goal 1: Convening a Dementia Care Network The Network was initially convened by the Alzheimer’s Association with input from two community partner organizations: Little Tokyo Service Center (LTSC) and Chinatown Service Center (CSC). Upon their suggestions, Filipino-focused agencies were identified and interviewed. Asian Pacific HealthCare Venture (APHCV) was selected to develop services for that community. Additional members of the DCN were invited to participate because of their particular expertise or services (respite, legal assistance, and evaluation) and their ability to provide services in API communities. The final formal APIDCN consisted of the Alzheimer’s Association, California Southland Chapter, three Asian community focused agencies, LTSC, CSC, APHCV, the Los Angeles Caregiver Resource Center (LACRC), Bet Tzedek Legal Services, and Partners in Care Foundation. The structure of the APIDCN is presented in Figure 1. The Alzheimer’s Association, California Southland Chapter was the lead agency. LTSC, the Association’s oldest partner in delivering caregiver services Alzheimer’s Association, Little Tokyo Service Center Care Advocate Roles: California Southland Chapter Technical Assistance • CommunityOutreach Lead Agency Mentoring • Community and Caregiver Education • Care Coordination Partners in Care • Support Group Leader Foundation • Arrange for Respite & Legal Appointments Evaluator • Bridge to the Community
Little Tokyo Service Center Care Advocates Support Groups Caregiver Education Community Outreach
Chinatown Service Center Care Advocates Support Groups Caregiver Education Community Outreach
Asian Pacific Health Care Venture Care Advocates Support Groups Caregiver Education Community Outreach
Bet Tzedek Legal Caregiver Resource Services Center Access to Respite Care Legal and Advocacy Svcs
FIGURE 1 Structure of the Asian Pacific Islander Dementia Care Network.
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in the API community, provided technical assistance and mentoring to staff from the newer agencies. Each social services agency (LTCS, CSC, APHCV) hired a bilingual/bicultural care advocate to conduct community outreach to identify families needing services, conduct a home visit, offer community and caregiver education about dementia and its care, provide caregiving families with care coordination and support groups, arrange for respite and legal appointments, and to serve as a cultural and linguistic bridge connecting families to services. Care advocates are key persons in the delivery of culturally competent care through this model. LACRC provided access to respite care, and Bet Tzedek Legal Services provided legal services and advocacy for public benefits. Partners in Care Foundation served as the project evaluator. Staff members from the collaborating agencies, including both decisionmakers and direct service providers, met quarterly to monitor implementation and explore opportunities for developing a sustainable, culturally- and linguistically-capable continuum of care for people with dementia and their families in the three targeted Asian communities. This Steering Committee was co-led by staff members from the Alzheimer’s Association and the project’s API Mentor, an experienced social worker from LTSC with expertise in both dementia care and in API cultural approaches to caregiving. There were also monthly meetings to discuss clinical and cultural issues. These were attended by the Care Advocates, their mentor from LTSC, the Alzheimer’s Association’s API Outreach Manager, and a representative from the evaluation team. Supervisors of the care advocates were also encouraged to attend these case conferences to assure that the knowledge about dementia care was better assimilated into their organizations and would be sustained beyond the project.
Goal 2: Conducting a Needs Assessment and Asset-Based Community Analysis Two early tasks of the DCN were to conduct an asset-based analysis and an assessment of the needs and gaps in resources in each of the three ethnic communities. The DCN developed a chart that identified availability of different services across the continuum of care, including community awareness activities, diagnostic and treatment centers, care management services, community and family caregiver education programs, family support groups, legal/financial planning resources, adult day care services, in-home respite services, residential care services, and end-of-life services. The gaps identified in the chart became the starting point for the Network’s work. At the end of the project, the chart was revised to reflect the services and resources that the Network helped establish through its efforts to build community capacity (Goal 4) and to identify which gaps still remained. Discussion of the results of the needs assessment is presented in the Results section under Building Community Capacity.
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Goal 3: Better Coordinating Existing Services Through quarterly interagency meetings and the asset assessment process, all existing services for APIs with cognitive impairment were identified and communicated between Network participants. A system of mutual referral was established and a mutual intake form was created and translated. The goal of the mutual intake form was to reduce the number of times a client would need to complete the intake process when receiving services from multiple partner agencies from within the Network. Additionally, partners in the Network learned about each other’s relevant services and became familiar with potential barriers. This familiarity and the common intake form helped create a more seamless interagency service system, facilitating transfer of clients between project partner organizations.
Goal 4: Building Community Capacity Capacity-building activities focused both on building dementia capacity in API community agencies, and on building cultural competency in the Alzheimer’s Association and other non-API network members. The methodologies used to increase capacity were staff training and mentoring. First, efforts focused on the training of staff members directly engaged in service delivery for the project, the care advocates. These key staff members learned care management skills for working with dementia caregivers and also were trained to become community educators, leading classes on dementia and caregiving. The care advocates and their agency supervisors also were mentored through case conferences at which key dementia care and cultural issues in their clients were identified and addressed. Because a key value of the DCN model is reciprocity, it should be noted that staff of the Alzheimer’s Association, California Southland Chapter also received training about API cultural views and values pertaining to dementia and caregiving so that this organization would be better prepared to serve this population. Then the focus of capacity-building activities spread outward to target key API professionals with training. First, training on dementia care and cultural issues related to caregiving were offered to care management staff of the three participating API organizations. The care advocates played a role in delivering this training. This helped to embed dementia care knowledge within the Network’s API partner agencies. Later, multilingual multicultural medical personnel at APHCV’s federally funded community health clinic, which serves low-income patients from a variety of API backgrounds, agreed to be trained in the recognition, treatment, and management of dementia, thus increasing the availability of diagnostic and treatment services in the target community. Annually, the Alzheimer’s Association recruited API mental health providers and offered them free training on caregiver support-group leadership skills. Also, an organization of API attorneys cosponsored training for their membership on elder law issues and how to access public benefit
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advocacy for clients through Bet Tzedek Legal Services. Over 3 years, step by step, the targeted communities gained knowledge of dementia care, as colored by the cultural and social contexts of their communities.
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Goal 5: Building Community Awareness From the start, the DCN sought to raise community awareness about Alzheimer’s disease, related dementias, and family caregiving issues. Three strategies were adapted for building community awareness: placing stories in ethnic media, general community education delivered by care advocates and other project members, and caregiver education through written materials and through public events. Community leaders identified through the early asset analysis were cultivated as spokespersons. These included legislators, city officials, celebrities, and a Consul General.
METHODS Building Community Capacity A process evaluation examined whether the program met its goals for increasing community capacity by developing services in support of these ethnically diverse caregivers. Using a continuum of ideal service availability developed for this project, the evaluators compared the availability of services at baseline with the availability of services at the conclusion of a 3-year period to assess service growth. DCN members provided this information during meetings of the Steering Committee. The evaluators also tracked the number of trainings and education programs offered to diverse professional groups.
Building Community Awareness The assets analysis identified potential media partners for this effort, and Network participants were activated to reach out to their respective media partners to ask them to publicize project activities. Each community had preferred sources for information. For instance, the Chinese community was reached through radio talk shows, whereas an effective outreach to the Japanese community was through bilingual Japanese newspapers. Additionally, care advocates conducted a number of successful outreach campaigns by publishing in community newspapers; presenting on community radio and television stations; participating in community celebrations; attending meetings and conferences of various community organizations; and distributing information to church leaders, senior programs, physician offices, community centers, libraries, apartment complexes, and at various educational events. Care advocates and other project staff members were
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also trained to deliver caregiver education programs in matched language and to make the programs culturally appropriate.
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Caregiver Services and Outcomes Population served. A total of 127 caregivers received care coordination services through the program. Consistent with the program goals, 95% of participating caregivers were of Asian descent, speaking one of the Filipino languages, English, Chinese, or Japanese as their primary language (Table 1). Seventy-six percent of caregivers were women with the mean age of 64 (SD = 14, range = 21–92) and were primarily the spouse/partner (47%) or daughter/son (34%) of the care recipient (Table 1). Sixty-one percent had some college education or a college degree. On average, care recipients were older than the caregivers, with an average age of 82 (SD = 10, range = 27–105; Table 1). About half of the care recipients were women and about half were men (Table 1). Sixty-one percent of the care recipients had an approximate monthly income of $1,000 or less; another 21% had an approximate monthly income between $1,000 and $2,000 (Table 1). Outcomes. To evaluate the impact of the program on participating family caregivers, they were asked to complete an assessment upon enrollment TABLE 1 Caregiver and Care Recipient Demographics (N = 127) M (SD) or %
Age Gender (% female) Race (% Asian) Chinese Filipino Japanese Language spoken and understood (primary) Filipino (Tagalog, Ilocano, Visayan, Cebuano, Pampango, Pangasinan) English Chinese (Mandarin or Cantonese) Japanese Other or Missing Education (% some college or a college degree) Relationship of caregiver to care recipient Spouse/Partner Daughter/Son Other Approximate monthly income ≤ $1,000 $1,001–$2,000 > $2,000 Missing
Caregivers
Care Recipients
64 (14); Range: 21–92 76% 95% 16% 59% 20%
82 (10); Range: 27–105 51% 92% 16% 56% 20%
53%
54%
17% 13% 13% 4% 61%
15% 14% 12% 5% —
47% 34% 19%
— — —
— — — —
61% 21% 10% 8%
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and again 6 months later. The assessment asked for caregiver and care recipient demographics, service utilization history, and assessed caregiver burden, risk, depression, and satisfaction with life. Caregiver assessment instruments used in this study included the Zarit Burden Interview (4-question screening version; Bédard et al., 2001), the Guberman Caregiver Risk Screen (CRS; Guberman, Keefe, Fancey, Nahmiash, & Barylak, 2001), and the depression scale of the Patient Health Questionnaire (PHQ-9; Spitzer, Kroenke, & Williams, 1999). The 4-question Zarit Burden Interview is a short version that screens caregivers for burden. Responses are scored on a five point scale (0–4); the total score is obtained by summing the answers on all four questions. The recommended cut-off point is 8; a total score of 8 or greater indicates a high caregiver burden. The Guberman CRS is a 12-item instrument designed to determine whether the caregiver’s well-being is at risk. The answers are scored on a 4-point scale (0–4); the total score is obtained by summing the answers on all 12 questions. The recommended cut-off point is 23; the well-being of caregivers who score 23 or higher should be considered at risk. The PHQ-9 is a nine-item depression scale of the Patient Health Questionnaire. The answers are scored on a 4-point scale (0–3). When a caregiver answered “not at all” to the first two questions, they were instructed to skip the rest of the questions and were assigned a total score of 0 (no depression). The total score was obtained by summing the answers on all 9 items. Scores of 1–4 indicate minimal depression, 5–9 = mild depression, 10–14 = moderate depression, 15–19 = moderately severe depression, and 20–27 = severe depression. In addition, caregivers were asked to rate their satisfaction with life on a 4-point scale: very dissatisfied, dissatisfied, satisfied, and very satisfied. PHQ-9 was the only assessment available in different languages. All of the other measures had to be translated into Japanese, Chinese, and Tagalog. The translated assessments were back translated for accuracy, but were not validated. Most measures were administered to caregivers orally. Analyses of caregiver outcome data were performed using IBM SPSS Statistics 19. Service utilization and satisfaction with life data were analyzed using a McNemar test. Caregiver burden, risk, and depression were analyzed using a paired samples t-test.
RESULTS Building Community Capacity As noted in the literature, there are barriers faced by API community members who wish to access dementia care. Some documented barriers include the lack of culturally appropriate services, lack of understanding of dementia
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and a desire to shield the family and elders from shame. These barriers were also found to apply to API community members in Los Angeles. The initial needs assessment revealed many gaps in services, especially in the Chinese and Filipino communities. The stigma associated with dementia among professionals had to be addressed, as well. Many professionals who work in the API community are unaware of Alzheimer’s disease and its impact. Like family caregivers, they may also hold negative cultural stereotypes about dementia that prevent them from identifying cognitive impairment and make it challenging to engage them in efforts to build services to meet the needs of this population. Even professionals in the health care system often retain beliefs about dementia based on their cultural reference. As a result of the DCN, however, significant capacity building did occur in each of the three targeted API communities. In the Chinese community, partial or complete gaps were identified in the lack of diagnostic and treatment centers, community and caregiver education, support groups, legal/financial services, day care, and end-of-life services. Most of these gaps were addressed through the work of the DCN. For example, a number of Chinese-speaking physicians were identified who have knowledge of Alzheimer’s disease and other dementias and were then utilized for assessment and treatment of these patients; two caregiver support groups were established; additional educational materials and workshops were translated, and trainers are now available to deliver educational programs; relationships with additional legal providers were established; and church groups and seniors centers that can provide day care were identified. Identifying end-of-life services and providing information about end-of-life options remains a significant gap. The Network continues to work toward filling this need and deepening overall capacity in the Chinese community. The Filipino community, as the newest partner in this effort, had the most gaps in services. There was a complete lack of awareness activities, diagnostic and treatment services, care managers, community and caregiver education, support groups, legal services, residential care, and end-of-life services. Through the work of the Network, these needs began to be addressed. Using the print media and with support of the Consul General of the Philippines, a large number of awareness activities were undertaken. Medical providers at the host organization’s federally funded community health clinic received training on diagnosis, treatment, and management of cognitive impairment, and can now serve this and other API populations. Social service and outreach workers at the host agency received training on dementia and Alzheimer’s disease. New, culturally-adapted educational materials and workshops were developed and delivered in the community and to family caregivers. A support group was established; and residential care facilities capable of catering to this ethnic group were identified. The major gaps that remain are the need for adult day services, legal services for middle income family caregivers, and end-of-life services and information.
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Pre
2
Post
1 0
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Support Groups
Trained Support Care Advocates or Group Leaders Experienced Dementia Case Manager
People Who Can Educational Deliver Caregiver Topics/Materials Education Available in Each of the API Languages
FIGURE 2 Pre- and post-availability of services developed through the Asian Pacific Islander Dementia Care Network.
The Japanese community has been collaborating with the Alzheimer’s Association, California Southland Chapter over the longest period of time, over 20 years. The community needs assessment identified fewer gaps in services, compared to the other two communities participating in the APIDCN. However, it did identify significant gaps in the information on culturally appropriate day care and end-of-life services. As a result of the project, a number of organizations that provide day care services were identified, and information and trainings on end-of-life options were delivered to service providers and caregivers. For a composite description of pre- and postavailability of some of the services developed through the APIDCN (see Figure 2). Overall, five support groups were created; each agency established at least one caregiver support group in their community, which has been steadily attended by 5–15 caregivers; six new API support group leaders have been trained; 255 professionals, including attorneys, physicians, health educators, and social workers, from the community have attended training in dementia care and, as a result, are likely to be offering better services. The Network also produced booklets (one for each community) describing culturally appropriate community assets including media outlets, churches, professional organizations, service providers and more. Information for the booklet was provided primarily by the community-based ethnic agencies and then compiled and distributed to each community by the Alzheimer’s Association, California Southland Chapter.
Building Community Awareness A number of steps were taken to increase awareness and understanding of dementia and memory loss and the importance of an early diagnosis in the API community itself.
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Care advocates and other DCN members were trained on delivering educational presentations on Memory Loss and Aging and Understanding Communication and Challenging Behaviors in each of the API languages. The staff members used these presentations to educate community members at various community venues, such as churches, temples, senior centers, senior housing, and adult day centers. Brochures and fact sheets on The Ten Warning Signs of Alzheimer’s Disease, The Basics of Memory Loss, Dementia and Alzheimer’s Disease; and project brochures were created in each language and distributed at Network partner organizations, health fairs, festivals, and community expos. The photographs selected for inclusion in the brochures reflected Asian American individuals. In all printed materials and presentations, careful consideration was given to the language used to describe dementia. For example, the characters used for the word dementia in Chinese translate roughly into crazy and stupid; not terms one is likely to want to apply to one’s loved and honored parent. In the Filipino community, the word dementia is rarely used while the terms Alzheimer’s disease and senility are discussed by the general public, but changes in cognition are often referred to as “being picky” or “too much going on in the brain” (McBride, 2006, p. 195). Project staff members tapped into the cultural knowledge of community gatekeepers and those involved with the DCN to identify acceptable vocabulary. Focus groups were used to help to refine the language, images, and overall look of the printed materials and presentations. The result was creation of materials and presentations that are nonthreatening and acceptable to these communities and that can be successfully utilized outside of the project to expand awareness of the disease. The acceptability and helpfulness of the materials were evident through their acceptance and extensive use by the community. Due to the cultural belief that providing care to the elderly is a familial responsibility, many API caregivers do not identify themselves as caregivers. API caregivers also show tendency not to seek assistance outside of the immediate family to avoid upsetting or angering other family members. The presentations, printed materials, and outreach conducted by care advocates included educating the community about the role of caregivers and the importance of seeking outside help. Through all community-building activities, it is estimated that care advocates were able to reach an estimated 860,000 individuals and provide educational information to over 9,000 individuals.
Caregiver Services and Outcomes Of the 127 caregivers who received care coordination services, 100 received respite care, 72 participated in support groups, and more than half received referrals to free legal service. Trust is a common barrier encountered in working with API communities. Caregivers, who received direct care coordination
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services through the program, often questioned why someone would want to help them at no cost. Some participants were reluctant to fill out the uniform intake form for the fear of their answers being seen by the government or by strangers. The involvement of the Alzheimer’s Association, a mainstream agency, often needed to be explained to the participants to establish trust in the program. Knowing that trust would be an issue, the DCN model relied on partnership with trusted community partners that are from the targeted ethnic communities. Generally, ethnically and linguistically matched agencies are more trusted by members of API communities. To counteract families’ reluctance to allow a stranger in their home and to provide respite in the language of the care recipient, several home health agencies were identified that offered workers with similar linguistic and cultural background as the care recipients and understood dementia care. Chinatown Service Center offered its own 16-week training for inhome workers, which included sessions on dementia care. Respite funds were dispersed through a state-funded agency, the LACRC. In the Filipino community, family caregivers expressed a strong preference to stay with the care recipient even at adult day care centers or with an in-home worker present. As a result, caregiver support groups offered to the Filipino population provided on-site respite for the care recipients. In the future, alternative respite options should be developed to reflect the very strong preference of some Filipino caregivers to have activities together with other families in the same caregiving situation. Of the 127 participating caregivers, 89 completed a 6-month reassessment. Of the 38 caregivers who did not complete a 6-month reassessment, 21 left the program prior to completing a reassessment, predominantly due to either death or residential placement of the care recipient; one caregiver could not be reached; and 16 were not due for a reassessment when the program ended. Before program enrollment, 54% of the caregivers were not familiar at all and 21% were familiar only a little with the services available to them as caregivers. As a result, before program enrollment, service utilization among caregivers was very low. Because the purpose of the program was to make people aware of existing services and connect them with services in their community, at 6 months postenrollment, there were some notable increases in service utilization. Specifically, there was a statistically significant increase in the use of case management, information/referrals, caregiver support groups, caregiver training programs, and chore services among caregivers, and an increase in use of transportation and legal services for care recipients (Table 2). At both intake and follow-up, the caregivers, on average, scored low, below the cut-off points on both the Zarit Burden scale and the CRS (Table 3), evidencing minimal caregiver burden and risk. The differences between intake and follow-up were not statistically significant (Table 3). Similarly, caregivers obtained low scores on the PHQ-9 at both intake and
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Service Utilization
Intake
Caregiver service utilization Caregiver support groups Caregiver training programs Case management Chore services Information/referral Care recipient service utilization Day care I.D. bracelet Transportation services Legal services
Follow-up
p
11 6 17 8 15
(12%) (7%) (19%) (9%) (17%)
25 18 48 18 40
(28%) (20%) (54%) (20%) (45%)
.001 .004
Journal of Gerontological Social Work Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wger20
Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities a
b
b
Zina Kally , Debra L. Cherry , Susan Howland & Monica Villarruel
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Institute for Change, Partners in Care Foundation, San Fernando, California, USA b
California Southland Chapter, Alzheimer’s Association, Los Angeles, California, USA c
Institute for Change, Partners in Care Foundation, San Fernando, California, USA Accepted author version posted online: 30 Oct 2013.Published online: 12 May 2014.
To cite this article: Zina Kally, Debra L. Cherry, Susan Howland & Monica Villarruel (2014) Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities, Journal of Gerontological Social Work, 57:6-7, 710-727, DOI: 10.1080/01634372.2013.854856 To link to this article: http://dx.doi.org/10.1080/01634372.2013.854856
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Journal of Gerontological Social Work, 57:710–727, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2013.854856
Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities ZINA KALLY Downloaded by [University of Nebraska, Lincoln] at 19:04 27 October 2014
Institute for Change, Partners in Care Foundation, San Fernando, California, USA
DEBRA L. CHERRY and SUSAN HOWLAND California Southland Chapter, Alzheimer’s Association, Los Angeles, California, USA
MONICA VILLARRUEL Institute for Change, Partners in Care Foundation, San Fernando, California, USA
This study presents the results of the work of the Asian Pacific Islander Dementia Care Network (APIDCN)—a collaborative model of care created to develop community capacity to deliver dementia capable services, build community awareness about Alzheimer’s disease and other dementias, and offer direct services to caregivers in the API community in Los Angeles. Through trainings, mentoring, and outreach campaigns, the APIDCN expanded the availability of culturally competent services in the API community. The knowledge that was embedded within partner organizations and in the community at large assures sustainability of the services after the project ended. KEYWORDS Alzheimer’s, dementia, Asian, APIDCN, Dementia Care Network
INTRODUCTION From 2005 to 2050, the nation’s elderly population will more than double in size (Pew Research Center, 2008) with the fastest rate of growth occurring among Asian/Pacific Islander (API) and Hispanic elderly (Campbell, 1994). Received 15 May 2013; revised 28 September 2013; accepted 30 September 2013. Address correspondence to Zina Kally, Research & Evaluation, Institute for Change, Partners in Care Foundation, 732 Mott Street, Suite 150, San Fernando, CA 91340, USA. Email: [email protected] Color versions of one or more of the figures in the article can be found online at www.tandfonline. com/wger.
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In California, the API population is projected to reach almost 10 million by 2020 (Campbell, 1994) with those aged 50 and older growing at more than twice the rate of all baby boomers by 2016 (AARP, 2012). As the number of minority elders increases, so does the number of those suffering from neurocognitive disorders (American Psychiatric Association, 2013; Chen, Borson, & Scanlan, 2000). Between 2000 and 2004, African Americans and APIs showed the greatest increase in reported deaths due to Alzheimer’s disease (Alzheimer’s Association, 2009). In 2010, Alzheimer’s disease was the 10th leading cause of death for API men and the 6th leading cause of death for API women (Centers for Disease Control and Prevention/National Center for Health Statistics [CDC/NCHS], 2011). Although the incidence of Alzheimer’s disease in the general population over age 55 in California is projected to double by 2030, it will triple among the API community, creating a burgeoning need for culturally competent dementia care (Ross, Brennan, Nazareno, & Fox, 2009). Minorities face extra challenges in accessing care and dementia services. Structural barriers, such as accessibility, affordability, and availability of services, including lack of knowledge about services, lack of linguistically matched services, lower rates of health insurance and other financial resources, and lack of transportation, are very common. The API population is more likely to be uninsured than the general population (AARP, 2012; Asian American Center for Advancing Justice, 2013). Many API populations are foreign-born and unfamiliar with the Western health system. The Chinese elders in one study found the American health care system very confusing and intimidating (Pang, Jordan-Marsh, Silverstein, & Cody, 2003). They reported that they did not use their Medicare or Medicaid benefits because they did not fully understand the policies and what treatments and medications were covered (Pang et al., 2003). This unfamiliarity, combined with the medical community’s lack of understanding of API health practices and beliefs, can create distrust. Although there is great variability in levels of acculturation among different API communities, in general, language is one of the greatest barriers in access to care for API populations. More than three-quarters (77%) of all Asian Americans speak a language other than English at home, and 37.4% speak English less than “very well” (US Census Bureau, 2011). Among local households that speak a language other than English at home, Asian Americans have the highest rate of linguistic isolation in Southern California (Asian American Center for Advancing Justice, 2013; Asian & Pacific Islander American Health Forum, 2009). Approximately 65% of Asian Americans aged 65 years and older experience some difficulty communicating in English (Asian Pacific American Legal Center, 2009). Accessible and culturally proficient services for API families are limited, further isolating these communities. Many elders depend on others to assist them with transportation and translation for appointments with doctors (Pang et al., 2003).
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There is a general lack of awareness of dementia in the API community, which contributes to the stigma of the disease (Jones, Chow, & Gatz, 2006; Trinh & Ahmed, 2009). Asian American families report that they experience shame when an older family member develops a chronic health condition, especially when that illness causes mental changes, like those seen in Alzheimer’s and other dementias (Liu, Hinton, Tran, Hinton, & Barker, 2010; Paniagua, 2005; Trinh & Ahmed, 2009). Families try to protect their loved ones from exposure and are reluctant to reveal these illnesses and seek help. Others view dementia as a normal part of aging and delay seeking help or never seek help (Liu et al., 2010). Yet, prompt and thorough assessment of older adults exhibiting cognitive changes is essential to rule out other treatable health or mental health conditions that may be partially or wholly reversible with appropriate treatment. Medications are also available to slow the progress of Alzheimer’s disease, which can extend quality of life for both elders and their families, but they are most effective at the early stages of the disease (Sano, 2003; Winblad & Jelic, 2004). Ethnic minority elders generally are less likely to receive an Alzheimer’s diagnosis until the disease is in its late stages, when effective intervention and treatment are no longer possible (Ayalon, & Areán, 2004; Hinton, Guo, Hillygus, & Levkoff, 2000; Ross et al., 2009). The three Asian cultural groups, Chinese, Japanese, and Filipino, engaged through this project exhibited similarities to some common cultural barriers to service utilization among APIs. They valued filial piety or respect for elders; they viewed dementia as a highly stigmatized condition; and, perhaps as a result, they were reluctant to access supportive services that could expose the elder or the family to shame (Yeo & Gallagher-Thompson, 2006). To address cultural barriers to service utilization and the growing need for information, education, and services in ethnically diverse communities, the State of California’s Departments of Aging and Public Health Services in collaboration with the Alzheimer’s Association, California Southland Chapter, have invested over 20 years of effort into first developing and then implementing a model of care for under-served communities, called Dementia Care Network (DCN). Established to provide dementia care services within ethnic communities, the DCN is an interorganizational community-based collaborative model that brings together nonprofit human services providers, program consumers, community representatives, and government entities. The DCN model has five major goals: (a) to convene a network of local community organizations and service providers that serve older adults in a targeted ethnic community; (b) to collaboratively conduct a needs assessment and asset-based community mapping identifying gaps and barriers to service delivery as well as strengths; (c) to immediately offer services by better coordinating existing services in the target area; (d) to develop community capacity to deliver dementia capable services through care management and professional training; and (e) to build community awareness about Alzheimer’s disease and other dementias. To date, the DCN model
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has been applied to a number of individual ethnic communities in California and other states, including Latino/Hispanics, African Americans, Chinese, Japanese, Korean, Filipino, and Vietnamese. In July 2009, with the funding from the Harry and Jeannette Weinberg Foundation, the Alzheimer’s Association, California Southland Chapter began a project to expand existing Japanese and Chinese DCNs and to start a DCN for Filipino Americans. A combined Asian Pacific Islander Dementia Care Network (APIDCN) was established to bridge the gap in services available to these three API communities in the central city area of Los Angeles. This article presents the results of the work the APIDCN carried out during the project period (July 2009–November 2012), including services established and outcomes achieved in participating communities.
ASIAN PACIFIC ISLANDER DEMENTIA CARE NETWORK Goal 1: Convening a Dementia Care Network The Network was initially convened by the Alzheimer’s Association with input from two community partner organizations: Little Tokyo Service Center (LTSC) and Chinatown Service Center (CSC). Upon their suggestions, Filipino-focused agencies were identified and interviewed. Asian Pacific HealthCare Venture (APHCV) was selected to develop services for that community. Additional members of the DCN were invited to participate because of their particular expertise or services (respite, legal assistance, and evaluation) and their ability to provide services in API communities. The final formal APIDCN consisted of the Alzheimer’s Association, California Southland Chapter, three Asian community focused agencies, LTSC, CSC, APHCV, the Los Angeles Caregiver Resource Center (LACRC), Bet Tzedek Legal Services, and Partners in Care Foundation. The structure of the APIDCN is presented in Figure 1. The Alzheimer’s Association, California Southland Chapter was the lead agency. LTSC, the Association’s oldest partner in delivering caregiver services Alzheimer’s Association, Little Tokyo Service Center Care Advocate Roles: California Southland Chapter Technical Assistance • CommunityOutreach Lead Agency Mentoring • Community and Caregiver Education • Care Coordination Partners in Care • Support Group Leader Foundation • Arrange for Respite & Legal Appointments Evaluator • Bridge to the Community
Little Tokyo Service Center Care Advocates Support Groups Caregiver Education Community Outreach
Chinatown Service Center Care Advocates Support Groups Caregiver Education Community Outreach
Asian Pacific Health Care Venture Care Advocates Support Groups Caregiver Education Community Outreach
Bet Tzedek Legal Caregiver Resource Services Center Access to Respite Care Legal and Advocacy Svcs
FIGURE 1 Structure of the Asian Pacific Islander Dementia Care Network.
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in the API community, provided technical assistance and mentoring to staff from the newer agencies. Each social services agency (LTCS, CSC, APHCV) hired a bilingual/bicultural care advocate to conduct community outreach to identify families needing services, conduct a home visit, offer community and caregiver education about dementia and its care, provide caregiving families with care coordination and support groups, arrange for respite and legal appointments, and to serve as a cultural and linguistic bridge connecting families to services. Care advocates are key persons in the delivery of culturally competent care through this model. LACRC provided access to respite care, and Bet Tzedek Legal Services provided legal services and advocacy for public benefits. Partners in Care Foundation served as the project evaluator. Staff members from the collaborating agencies, including both decisionmakers and direct service providers, met quarterly to monitor implementation and explore opportunities for developing a sustainable, culturally- and linguistically-capable continuum of care for people with dementia and their families in the three targeted Asian communities. This Steering Committee was co-led by staff members from the Alzheimer’s Association and the project’s API Mentor, an experienced social worker from LTSC with expertise in both dementia care and in API cultural approaches to caregiving. There were also monthly meetings to discuss clinical and cultural issues. These were attended by the Care Advocates, their mentor from LTSC, the Alzheimer’s Association’s API Outreach Manager, and a representative from the evaluation team. Supervisors of the care advocates were also encouraged to attend these case conferences to assure that the knowledge about dementia care was better assimilated into their organizations and would be sustained beyond the project.
Goal 2: Conducting a Needs Assessment and Asset-Based Community Analysis Two early tasks of the DCN were to conduct an asset-based analysis and an assessment of the needs and gaps in resources in each of the three ethnic communities. The DCN developed a chart that identified availability of different services across the continuum of care, including community awareness activities, diagnostic and treatment centers, care management services, community and family caregiver education programs, family support groups, legal/financial planning resources, adult day care services, in-home respite services, residential care services, and end-of-life services. The gaps identified in the chart became the starting point for the Network’s work. At the end of the project, the chart was revised to reflect the services and resources that the Network helped establish through its efforts to build community capacity (Goal 4) and to identify which gaps still remained. Discussion of the results of the needs assessment is presented in the Results section under Building Community Capacity.
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Goal 3: Better Coordinating Existing Services Through quarterly interagency meetings and the asset assessment process, all existing services for APIs with cognitive impairment were identified and communicated between Network participants. A system of mutual referral was established and a mutual intake form was created and translated. The goal of the mutual intake form was to reduce the number of times a client would need to complete the intake process when receiving services from multiple partner agencies from within the Network. Additionally, partners in the Network learned about each other’s relevant services and became familiar with potential barriers. This familiarity and the common intake form helped create a more seamless interagency service system, facilitating transfer of clients between project partner organizations.
Goal 4: Building Community Capacity Capacity-building activities focused both on building dementia capacity in API community agencies, and on building cultural competency in the Alzheimer’s Association and other non-API network members. The methodologies used to increase capacity were staff training and mentoring. First, efforts focused on the training of staff members directly engaged in service delivery for the project, the care advocates. These key staff members learned care management skills for working with dementia caregivers and also were trained to become community educators, leading classes on dementia and caregiving. The care advocates and their agency supervisors also were mentored through case conferences at which key dementia care and cultural issues in their clients were identified and addressed. Because a key value of the DCN model is reciprocity, it should be noted that staff of the Alzheimer’s Association, California Southland Chapter also received training about API cultural views and values pertaining to dementia and caregiving so that this organization would be better prepared to serve this population. Then the focus of capacity-building activities spread outward to target key API professionals with training. First, training on dementia care and cultural issues related to caregiving were offered to care management staff of the three participating API organizations. The care advocates played a role in delivering this training. This helped to embed dementia care knowledge within the Network’s API partner agencies. Later, multilingual multicultural medical personnel at APHCV’s federally funded community health clinic, which serves low-income patients from a variety of API backgrounds, agreed to be trained in the recognition, treatment, and management of dementia, thus increasing the availability of diagnostic and treatment services in the target community. Annually, the Alzheimer’s Association recruited API mental health providers and offered them free training on caregiver support-group leadership skills. Also, an organization of API attorneys cosponsored training for their membership on elder law issues and how to access public benefit
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advocacy for clients through Bet Tzedek Legal Services. Over 3 years, step by step, the targeted communities gained knowledge of dementia care, as colored by the cultural and social contexts of their communities.
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Goal 5: Building Community Awareness From the start, the DCN sought to raise community awareness about Alzheimer’s disease, related dementias, and family caregiving issues. Three strategies were adapted for building community awareness: placing stories in ethnic media, general community education delivered by care advocates and other project members, and caregiver education through written materials and through public events. Community leaders identified through the early asset analysis were cultivated as spokespersons. These included legislators, city officials, celebrities, and a Consul General.
METHODS Building Community Capacity A process evaluation examined whether the program met its goals for increasing community capacity by developing services in support of these ethnically diverse caregivers. Using a continuum of ideal service availability developed for this project, the evaluators compared the availability of services at baseline with the availability of services at the conclusion of a 3-year period to assess service growth. DCN members provided this information during meetings of the Steering Committee. The evaluators also tracked the number of trainings and education programs offered to diverse professional groups.
Building Community Awareness The assets analysis identified potential media partners for this effort, and Network participants were activated to reach out to their respective media partners to ask them to publicize project activities. Each community had preferred sources for information. For instance, the Chinese community was reached through radio talk shows, whereas an effective outreach to the Japanese community was through bilingual Japanese newspapers. Additionally, care advocates conducted a number of successful outreach campaigns by publishing in community newspapers; presenting on community radio and television stations; participating in community celebrations; attending meetings and conferences of various community organizations; and distributing information to church leaders, senior programs, physician offices, community centers, libraries, apartment complexes, and at various educational events. Care advocates and other project staff members were
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also trained to deliver caregiver education programs in matched language and to make the programs culturally appropriate.
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Caregiver Services and Outcomes Population served. A total of 127 caregivers received care coordination services through the program. Consistent with the program goals, 95% of participating caregivers were of Asian descent, speaking one of the Filipino languages, English, Chinese, or Japanese as their primary language (Table 1). Seventy-six percent of caregivers were women with the mean age of 64 (SD = 14, range = 21–92) and were primarily the spouse/partner (47%) or daughter/son (34%) of the care recipient (Table 1). Sixty-one percent had some college education or a college degree. On average, care recipients were older than the caregivers, with an average age of 82 (SD = 10, range = 27–105; Table 1). About half of the care recipients were women and about half were men (Table 1). Sixty-one percent of the care recipients had an approximate monthly income of $1,000 or less; another 21% had an approximate monthly income between $1,000 and $2,000 (Table 1). Outcomes. To evaluate the impact of the program on participating family caregivers, they were asked to complete an assessment upon enrollment TABLE 1 Caregiver and Care Recipient Demographics (N = 127) M (SD) or %
Age Gender (% female) Race (% Asian) Chinese Filipino Japanese Language spoken and understood (primary) Filipino (Tagalog, Ilocano, Visayan, Cebuano, Pampango, Pangasinan) English Chinese (Mandarin or Cantonese) Japanese Other or Missing Education (% some college or a college degree) Relationship of caregiver to care recipient Spouse/Partner Daughter/Son Other Approximate monthly income ≤ $1,000 $1,001–$2,000 > $2,000 Missing
Caregivers
Care Recipients
64 (14); Range: 21–92 76% 95% 16% 59% 20%
82 (10); Range: 27–105 51% 92% 16% 56% 20%
53%
54%
17% 13% 13% 4% 61%
15% 14% 12% 5% —
47% 34% 19%
— — —
— — — —
61% 21% 10% 8%
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and again 6 months later. The assessment asked for caregiver and care recipient demographics, service utilization history, and assessed caregiver burden, risk, depression, and satisfaction with life. Caregiver assessment instruments used in this study included the Zarit Burden Interview (4-question screening version; Bédard et al., 2001), the Guberman Caregiver Risk Screen (CRS; Guberman, Keefe, Fancey, Nahmiash, & Barylak, 2001), and the depression scale of the Patient Health Questionnaire (PHQ-9; Spitzer, Kroenke, & Williams, 1999). The 4-question Zarit Burden Interview is a short version that screens caregivers for burden. Responses are scored on a five point scale (0–4); the total score is obtained by summing the answers on all four questions. The recommended cut-off point is 8; a total score of 8 or greater indicates a high caregiver burden. The Guberman CRS is a 12-item instrument designed to determine whether the caregiver’s well-being is at risk. The answers are scored on a 4-point scale (0–4); the total score is obtained by summing the answers on all 12 questions. The recommended cut-off point is 23; the well-being of caregivers who score 23 or higher should be considered at risk. The PHQ-9 is a nine-item depression scale of the Patient Health Questionnaire. The answers are scored on a 4-point scale (0–3). When a caregiver answered “not at all” to the first two questions, they were instructed to skip the rest of the questions and were assigned a total score of 0 (no depression). The total score was obtained by summing the answers on all 9 items. Scores of 1–4 indicate minimal depression, 5–9 = mild depression, 10–14 = moderate depression, 15–19 = moderately severe depression, and 20–27 = severe depression. In addition, caregivers were asked to rate their satisfaction with life on a 4-point scale: very dissatisfied, dissatisfied, satisfied, and very satisfied. PHQ-9 was the only assessment available in different languages. All of the other measures had to be translated into Japanese, Chinese, and Tagalog. The translated assessments were back translated for accuracy, but were not validated. Most measures were administered to caregivers orally. Analyses of caregiver outcome data were performed using IBM SPSS Statistics 19. Service utilization and satisfaction with life data were analyzed using a McNemar test. Caregiver burden, risk, and depression were analyzed using a paired samples t-test.
RESULTS Building Community Capacity As noted in the literature, there are barriers faced by API community members who wish to access dementia care. Some documented barriers include the lack of culturally appropriate services, lack of understanding of dementia
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and a desire to shield the family and elders from shame. These barriers were also found to apply to API community members in Los Angeles. The initial needs assessment revealed many gaps in services, especially in the Chinese and Filipino communities. The stigma associated with dementia among professionals had to be addressed, as well. Many professionals who work in the API community are unaware of Alzheimer’s disease and its impact. Like family caregivers, they may also hold negative cultural stereotypes about dementia that prevent them from identifying cognitive impairment and make it challenging to engage them in efforts to build services to meet the needs of this population. Even professionals in the health care system often retain beliefs about dementia based on their cultural reference. As a result of the DCN, however, significant capacity building did occur in each of the three targeted API communities. In the Chinese community, partial or complete gaps were identified in the lack of diagnostic and treatment centers, community and caregiver education, support groups, legal/financial services, day care, and end-of-life services. Most of these gaps were addressed through the work of the DCN. For example, a number of Chinese-speaking physicians were identified who have knowledge of Alzheimer’s disease and other dementias and were then utilized for assessment and treatment of these patients; two caregiver support groups were established; additional educational materials and workshops were translated, and trainers are now available to deliver educational programs; relationships with additional legal providers were established; and church groups and seniors centers that can provide day care were identified. Identifying end-of-life services and providing information about end-of-life options remains a significant gap. The Network continues to work toward filling this need and deepening overall capacity in the Chinese community. The Filipino community, as the newest partner in this effort, had the most gaps in services. There was a complete lack of awareness activities, diagnostic and treatment services, care managers, community and caregiver education, support groups, legal services, residential care, and end-of-life services. Through the work of the Network, these needs began to be addressed. Using the print media and with support of the Consul General of the Philippines, a large number of awareness activities were undertaken. Medical providers at the host organization’s federally funded community health clinic received training on diagnosis, treatment, and management of cognitive impairment, and can now serve this and other API populations. Social service and outreach workers at the host agency received training on dementia and Alzheimer’s disease. New, culturally-adapted educational materials and workshops were developed and delivered in the community and to family caregivers. A support group was established; and residential care facilities capable of catering to this ethnic group were identified. The major gaps that remain are the need for adult day services, legal services for middle income family caregivers, and end-of-life services and information.
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Pre
2
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1 0
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Support Groups
Trained Support Care Advocates or Group Leaders Experienced Dementia Case Manager
People Who Can Educational Deliver Caregiver Topics/Materials Education Available in Each of the API Languages
FIGURE 2 Pre- and post-availability of services developed through the Asian Pacific Islander Dementia Care Network.
The Japanese community has been collaborating with the Alzheimer’s Association, California Southland Chapter over the longest period of time, over 20 years. The community needs assessment identified fewer gaps in services, compared to the other two communities participating in the APIDCN. However, it did identify significant gaps in the information on culturally appropriate day care and end-of-life services. As a result of the project, a number of organizations that provide day care services were identified, and information and trainings on end-of-life options were delivered to service providers and caregivers. For a composite description of pre- and postavailability of some of the services developed through the APIDCN (see Figure 2). Overall, five support groups were created; each agency established at least one caregiver support group in their community, which has been steadily attended by 5–15 caregivers; six new API support group leaders have been trained; 255 professionals, including attorneys, physicians, health educators, and social workers, from the community have attended training in dementia care and, as a result, are likely to be offering better services. The Network also produced booklets (one for each community) describing culturally appropriate community assets including media outlets, churches, professional organizations, service providers and more. Information for the booklet was provided primarily by the community-based ethnic agencies and then compiled and distributed to each community by the Alzheimer’s Association, California Southland Chapter.
Building Community Awareness A number of steps were taken to increase awareness and understanding of dementia and memory loss and the importance of an early diagnosis in the API community itself.
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Care advocates and other DCN members were trained on delivering educational presentations on Memory Loss and Aging and Understanding Communication and Challenging Behaviors in each of the API languages. The staff members used these presentations to educate community members at various community venues, such as churches, temples, senior centers, senior housing, and adult day centers. Brochures and fact sheets on The Ten Warning Signs of Alzheimer’s Disease, The Basics of Memory Loss, Dementia and Alzheimer’s Disease; and project brochures were created in each language and distributed at Network partner organizations, health fairs, festivals, and community expos. The photographs selected for inclusion in the brochures reflected Asian American individuals. In all printed materials and presentations, careful consideration was given to the language used to describe dementia. For example, the characters used for the word dementia in Chinese translate roughly into crazy and stupid; not terms one is likely to want to apply to one’s loved and honored parent. In the Filipino community, the word dementia is rarely used while the terms Alzheimer’s disease and senility are discussed by the general public, but changes in cognition are often referred to as “being picky” or “too much going on in the brain” (McBride, 2006, p. 195). Project staff members tapped into the cultural knowledge of community gatekeepers and those involved with the DCN to identify acceptable vocabulary. Focus groups were used to help to refine the language, images, and overall look of the printed materials and presentations. The result was creation of materials and presentations that are nonthreatening and acceptable to these communities and that can be successfully utilized outside of the project to expand awareness of the disease. The acceptability and helpfulness of the materials were evident through their acceptance and extensive use by the community. Due to the cultural belief that providing care to the elderly is a familial responsibility, many API caregivers do not identify themselves as caregivers. API caregivers also show tendency not to seek assistance outside of the immediate family to avoid upsetting or angering other family members. The presentations, printed materials, and outreach conducted by care advocates included educating the community about the role of caregivers and the importance of seeking outside help. Through all community-building activities, it is estimated that care advocates were able to reach an estimated 860,000 individuals and provide educational information to over 9,000 individuals.
Caregiver Services and Outcomes Of the 127 caregivers who received care coordination services, 100 received respite care, 72 participated in support groups, and more than half received referrals to free legal service. Trust is a common barrier encountered in working with API communities. Caregivers, who received direct care coordination
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services through the program, often questioned why someone would want to help them at no cost. Some participants were reluctant to fill out the uniform intake form for the fear of their answers being seen by the government or by strangers. The involvement of the Alzheimer’s Association, a mainstream agency, often needed to be explained to the participants to establish trust in the program. Knowing that trust would be an issue, the DCN model relied on partnership with trusted community partners that are from the targeted ethnic communities. Generally, ethnically and linguistically matched agencies are more trusted by members of API communities. To counteract families’ reluctance to allow a stranger in their home and to provide respite in the language of the care recipient, several home health agencies were identified that offered workers with similar linguistic and cultural background as the care recipients and understood dementia care. Chinatown Service Center offered its own 16-week training for inhome workers, which included sessions on dementia care. Respite funds were dispersed through a state-funded agency, the LACRC. In the Filipino community, family caregivers expressed a strong preference to stay with the care recipient even at adult day care centers or with an in-home worker present. As a result, caregiver support groups offered to the Filipino population provided on-site respite for the care recipients. In the future, alternative respite options should be developed to reflect the very strong preference of some Filipino caregivers to have activities together with other families in the same caregiving situation. Of the 127 participating caregivers, 89 completed a 6-month reassessment. Of the 38 caregivers who did not complete a 6-month reassessment, 21 left the program prior to completing a reassessment, predominantly due to either death or residential placement of the care recipient; one caregiver could not be reached; and 16 were not due for a reassessment when the program ended. Before program enrollment, 54% of the caregivers were not familiar at all and 21% were familiar only a little with the services available to them as caregivers. As a result, before program enrollment, service utilization among caregivers was very low. Because the purpose of the program was to make people aware of existing services and connect them with services in their community, at 6 months postenrollment, there were some notable increases in service utilization. Specifically, there was a statistically significant increase in the use of case management, information/referrals, caregiver support groups, caregiver training programs, and chore services among caregivers, and an increase in use of transportation and legal services for care recipients (Table 2). At both intake and follow-up, the caregivers, on average, scored low, below the cut-off points on both the Zarit Burden scale and the CRS (Table 3), evidencing minimal caregiver burden and risk. The differences between intake and follow-up were not statistically significant (Table 3). Similarly, caregivers obtained low scores on the PHQ-9 at both intake and
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Service Utilization
Intake
Caregiver service utilization Caregiver support groups Caregiver training programs Case management Chore services Information/referral Care recipient service utilization Day care I.D. bracelet Transportation services Legal services
Follow-up
p
11 6 17 8 15
(12%) (7%) (19%) (9%) (17%)
25 18 48 18 40
(28%) (20%) (54%) (20%) (45%)
.001 .004
