Over five million people in the United States are diagnosed with some form of dementia, and many more with cognitive impairment remain undiagnosed. In addition, most individuals with dementia experience one or more neuropsychiatric symptoms such as depression, anxiety, irritability, agitation, hallucinations, or delusions at some point during disease progression. The vast majority of individuals with dementia, including those with symptoms of serious mental illness, are cared for in home and community based settings by unpaid caregivers, often family members, who struggle with the daily challenges of providing care and services to someone with dementia. This article will briefly review selected aspects of the need for community care for individuals with dementia and cultural aspects related to dementia and mental health. A detailed case study will illustrate some of the challenges related to the mental health of individuals with dementia living in the community. We specifically discuss culturally competent care, using the example of a Nepalese refugee family caring for a family member with dementia and depression, as a critical aspect of the care plan. Finally, we provide implications for practice for organizations wishing to engage families in a comprehensive system of home-based dementia care.
Key words: Dementia, mental health, community-based care, acculturation, culture, cultural competence
The vast majority of individuals with dementia, including those with symptoms of serious mental illness are cared for in home and community based settings by unpaid caregivers... Over five million people in the United States (U.S.) are diagnosed with some form of dementia, and many more with cognitive impairment remain undiagnosed (Centers for Disease Control and Prevention [CDC], 2014). In addition, most individuals with dementia experience one or more neuropsychiatric symptoms (NPS) such as depression, anxiety, irritability, agitation, hallucinations, or delusions at some point during disease progression. One study that considered the cumulative prevalence of NPS over a five year period reported depression and apathy as most common, with a cumulative prevalence of 77% and 71% respectively (Steinberg et al., 2008). While depressive symptoms are extremely common in patients with dementia, it is not clear whether depression is a risk factor for dementia, an early symptom of dementia, or simply a reaction to cognitive and functional decline (Richard et al., 2013).
The vast majority of individuals with dementia, including those with symptoms of serious mental illness (SMI) are cared for in home and community based settings by unpaid caregivers, often family members, who struggle with the daily challenges of providing care and services to someone with dementia (Miller, 2012). As with many progressive chronic conditions, the needs of individuals with dementia and their caregivers change over time, as individuals in later stages of dementia require more physical care; skills to address unmet needs (often characterized as “challenging behaviors”); assistance with activities of daily living (ADLs); and support with making end-of-life decisions.
...individuals with dementia and their caregivers often contend with a variety of challenges related to managing cognitive, psychological, and behavioral symptoms of the illness. As with other mental health conditions, individuals with dementia and their caregivers often contend with a variety of challenges related to managing cognitive, psychological, and behavioral symptoms of the illness. For this reason, nurses and other members of the healthcare team must develop skills and expertise to support and engage individuals with dementia and their caregivers. The goals of care are to prevent, identify, and manage manifestations of dementia and related mental health disorders, such as psychosis or depression, in order to promote the best possible quality of life for the individual and caregiver.
This article will briefly review selected aspects of the need for community care for individuals with dementia and cultural aspects related to dementia and mental health. A detailed case study will illustrate some of the challenges related to the mental health of individuals with dementia living in the community. We specifically discuss culturally competent care, using the example of a Nepalese refugee family caring for a family member with dementia and depression, as a critical aspect of the care plan. Finally, we provide implications for practice for organizations wishing to engage families in a comprehensive system of home-based dementia care.
...in some cultures, mental illness and dementia are considered shameful or embarrassing. The Congressional Budget Office (2013) estimates that unpaid caregivers represent about 55% of long term services and support (LTSS) providers and an economic value of approximately $234 billion dollars. Despite attempts at innovation through various state waiver and other programs over the past few decades, resources for unpaid community-based caregivers are insufficient to meet the needs of caregivers trying to provide 24/7 care for an individual with dementia (Bynum et al., 2004; Epstein-Lubow, 2014; Komisar, Feder, & Kasper, 2005). Families from other countries of origin and ethnic backgrounds face additional barriers in understanding dementia and obtaining needed support for caregiving in communities, such as cultural and language difference, and lack of familiarity with the U.S. healthcare system.
Aspects Related to Language
Numerous culturally based factors have been identified as potential factors in the well-being and coping ability of people caring for someone with dementia. For example, in some cultures, mental illness and dementia are considered shameful or embarrassing (Dong & Chang, 2014). This may lead families to withhold information from healthcare providers. As a result, a dementia diagnosis is not documented and providers cannot assure that interventions such as support groups, medications and other types of support, are put into place.
...families may think that an individual is simply “trying to be difficult” and that “they know better.” Given the stigma associated with mental health and dementia in many cultures, health teams must be sensitive to the use of language and discussions around mental health issues (Shankar, Paudel, & Giri, 2006). Without an understanding of the disease and how it affects cognitive functioning, families may think that an individual is simply “trying to be difficult” and that “they know better.” Care team members must be sensitive, thoughtful, and creative in how they describe the individual’s symptoms and behaviors to be able to engage family caregivers in a constructive conversation. Table 1 describes common terms that may be used to describe individuals with dementia, and suggests more effective alternatives.
More Effective Terms
Confusion or forgetfulness
Describe specific or unfinished actions (e.g., leaves stove on, unable to dress independently)
Evil or possessed
Mood changes (e.g., sad, angry, or worried)
Behavior changes (e.g., pacing or repetitive actions)
Brain disorder, illness, dysfunction
Brain no longer able to work as well
In many cases, specific terms (e.g., dementia or Alzheimer’s disease) in English may not have an equivalent word in other languages. Furthermore, the way in which questions are framed may not translate to a different culture. This has implications for mental health assessments in which questions are asked such as, “How often do you feel sad? Anxious? Worried? Fearful?” These specific terms may have slightly different meanings in other languages, and asking about ‘how often’ something occurs may be influenced by cultural ideas about the passage of time. The concept of pain may be influenced by culture; in some cultures, expressing pain is a sign of weakness. Therefore asking someone to use a pain scale may not lead to accurate information about a person’s level of discomfort.
Aspects Related to Normal Aging versus Dementia
In cultures where dementia and cognitive impairment are not differentiated from normal aging, families may not seek medical care for individuals with dementia. In cultures where dementia and cognitive impairment are not differentiated from normal aging, families may not seek medical care for individuals with dementia. This may lead to increased caregiver strain, since functional decline and challenges with activities of daily living (ADLs) may be exacerbated by a lack of support and avoidance of the healthcare system. Knowledge and skill building around how to cope with geriatric syndromes such as incontinence, falls, and behavioral aspects of dementia can reduce caregiver strain and burden (Roland & Chappell, 2014). Building trust and rapport with families from different ethnic backgrounds is critical to gaining acceptance of Western healthcare practices that may support family caregiving. While professional interpreters are essential, having a member of the care team (e.g., nurse, care manager, social worker) who not only speaks the language, but is from the same culture or ethnic group, may facilitate a deeper understanding of how to engage caregivers and how to support them as well.
Inclusion of cultural aspects in the care of individuals with dementia is one way to address promotion of positive mental health in patients and families struggling with great challenges. Inclusion of cultural aspects in the care of individuals with dementia is one way to address promotion of positive mental health in patients and families struggling with great challenges. The detailed case study below, a composite of several related cases, illustrates the use of an innovative model of community-based long term care called Structured Family Caregiving (SFC), a term introduced by Caregiver Homes (n.d.), a division of Seniorlink Inc. located in Boston, Massachusetts. The case study begins with a basic profile and social history of the patient, followed by a description of the SFC model applied to this case, and an example of conversation about dementia with family members. Names and details have been changed to protect the privacy of the individuals, families, and caregivers. We follow with discussions related to other considerations in the case, such as the effects of the refugee camp; the meaning of caregiving and caregiver roles; health literacy and dementia care plans; and then include a plan that describes patient concerns and a comparison of possible strategies. Since this is a complex case study, a timeline is included at the conclusion of the case study to provide a visual summary of the case progression.
Nepalese families are expected to care for older relatives, including those with dementia. Rishi is a 59 year old male, newly diagnosed with early-onset dementia (unspecified). He also has diagnoses of depression, vitamin deficiencies, protein-calorie malnutrition, hypertension, multiple dental caries.
Rishi, of Nepalese descent, was a farmer in Bhutan until ethnic cleansing by the Bhutanese government resulted in his family being sent to a refugee camp back in Nepal. The family arrived in the U.S. as refugees in the summer of 2011. The family consists of the patient/consumer Rishi; his wife, Sita; eldest son, Deepak who is 25 years old and the primary caregiver; and two teenage children. Some of their relatives live in the area; all are newly arrived refugees with their own adjustment and acculturation issues. Refugee households share a common challenge, which is a need to integrate to certain aspects of U.S. society as quickly as possible: to secure gainful employment, arrange transportation, and be able to provide for all family members in a new setting while still trying to preserve their culture and practices.
This family faces additional challenges. Rishi and his wife did not have the opportunity to attend formal schooling in Bhutan and Nepal. Both attended some adult education classes in the refugee camps for a few months. In the U.S., English as a second language classes are available but Rishi and Sita have not been able to benefit from them due to transportation and health barriers (Sita has significant arthritis, chronic pain, and depression).
Until his illness, Rishi was the primary care taker of the family in a mostly patriarchal Nepalese society. Rishi had limited access to healthcare facilities and the family had limited resources to spend on healthcare. The eldest son, Deepak, completed the equivalent of high school in Nepal, though his education is not recognized here in the U.S. Deepak works part-time at a grocery store, less than 20 hours per week, with no benefits. He is the sole wage earner for the family though some public benefits are being provided. Deepak has conversational English, with limited language skills for writing and limited health literacy.
Deepak had to take on multiple caregiving responsibilities for his father Rishi as his mother Sita is limited due to her arthritis pain. Sita also felt intimidated in healthcare settings due to language barriers; thus Deepak is responsible for taking Rishi to all his medical appointments and managing his medications too. Deepak faces the additional challenges of understanding his father’s illness, acquiring caregiving skills and encouraging other family members to understand Rishi’s needs.
Structured Family Caregiving Model
The family in this case is being supported through use of the SFC model. The purpose of SFC is to enable frail elders and younger disabled adults to live safely and happily in the community.
The purpose of [Structured Family Caregiving] is to enable frail elders and younger disabled adults to live safely and happily in the community. Deepak learned of the program through another Nepalese family living in his area. Nepalese families are expected to care for older relatives, including those with dementia. Use of nursing home care or paid caregivers is not part of their cultural belief system. Even though there was some cultural resistance to reaching out for help, Deepak realized that the family situation was in decline and contacted the program to learn more about SFC. An in-home assessment was performed, and Deepak learned that ongoing support would be provided by a professional care team comprised of a registered nurse and a care manager. The focus of SFC is on engagement with the caregiver and family to provide more effective supports to the elder. Effective communication is critical; the model accomplishes this through home visits, active care coordination, and use of a web and mobile device communication platform.
SFC achieves person-centeredness by embracing the unique cultural and ethnic beliefs and values of the consumer, caregiver and community during the assessment and subsequent phases of the care process. Domains of risk and strength are assessed, including the medical, functional, and psychosocial needs of the individual; dimensions of caregiving such as strain and burden; psychological concerns of both the individual and the caregiver, such as depression, healthcare activation, and engagement. SFC also assesses environmental concerns such as home safety and financial hardship. SFC care plans are developed using a “bottom up” approach, reflecting input of the individual and caregivers.
The Healthcare Team
Rishi receives his medical care at a local community health center, where his primary care provider (PCP) is a nurse practitioner. The PCP is not fully aware of the issues that the family faces on a daily basis, due to the family’s hesitancy to discuss certain behaviors; therefore the PCP has not considered referrals to a neurologist, psychiatrist, or other specialist.
Through the SFC program, the family receives ongoing care and services in the home from Laurie Nelson, a registered nurse (RN); and Sitara Sharma, a care manager (CM). Sitara is an immigrant from Nepal, is fluent in English and Nepali, and is a certified medical interpreter. The following conversations took place in Nepali, with the exception of the RN questions, which were in English and translated by Sitara.
Routine Monthly Home Visit by RN and CM: A Conversation with the Caregiver About Dementia
Laurie Nelson, RN
Sitara Sharma, CM
Rishi D – individual with dementia
Sita D – Rishi’s wife
CG (caregiver) Deepak* - Rishi’s oldest son
(*all names changed to protect privacy)
Laurie and Sitara are visiting the home. They greet Deepak, Rishi and Sita by saying “Namaste” and bowing respectfully. They remove their shoes upon entering the home; they accept an offer of strong hot tea and exchange pleasantries in a relaxed manner. The CM and RN know that rushing through an interview would be disrespectful. They are pleased when CG Deepak opens up and shares a bit about Rishi’s past.
Laurie: Can you tell me how your father is doing?
CG Deepak: He has been sick for a very long time, and it is getting worse.
Laurie: Can you describe how it is worse?
CG Deepak: He gets angry with family members more often. He seems pickier than before, and he wants me to do almost everything for him. He was able to make phone calls to my uncle, and now he wants me to make those calls for him. He misplaces things and blames my mother for this.
Laurie: Can you describe the last time he was angry? Can you give an example?
CG Deepak: Having to wear a button shirt makes him so mad. He only wants a t-shirt. I have to constantly remind him to get dressed.
Laurie: Hm. I wonder if he might be having problems with the buttons.
CG Deepak: Don’t know, I never thought this way.
Sitara: Sometimes these little tasks are difficult, and you might think he is being picky but he might be struggling to do this. You mentioned he is more forgetful, could you please tell us more about that?
CG Deepak: Like I mentioned: dialing phones, losing his appointment cards, mixing up dirty and clean clothes etc.
Laurie: These examples you are giving describe an illness in English called dementia. Have you heard of this illness?
CG Deepak: (Blank look, shakes his head), I don’t know.
Laurie: Sitara, could you please help me explain what dementia is, in Nepali?
People in Nepal identify symptoms as the illness itself.(Sitara talks to Laurie: There is no linguistic equivalent for the diagnosis “dementia” in Nepali and most people are unaware of mental health diagnoses. Together, we will have to describe the symptoms, progress, treatment and outcomes for better understanding of the illness. People in Nepal identify symptoms as the illness itself.)
Sitara to CG Deepak: The nurse is saying that symptoms that your father has such as forgetfulness, being unfamiliar with things he was previously familiar with like buttoning his shirts, etc. suggests an illness called “dementia.” If you Google this word and try to find the Nepali word for this you will get “madness.” But that would be wrong – we are not saying that your father is turning crazy. We want you to understand that dementia is an illness related to the brain. Not all brain-related illnesses mean madness. We are happy to answer any questions that you might have about this, and we can keep talking about it on future visits as well…
CG Deepak: There is something else - recently my father has been talking a lot about his childhood days. He remembers how his grandfather and grandmother used to make him rice pudding and how much he loved it. He is normally forgetful about things so we are very surprised that he has recollection of memories from his childhood. Both his grandparents died many years ago, and after coming to USA, we have not been able to carry out any rituals and offering for our ancestors; so we think they are reminding us to do those through him. We are planning to carry out these rituals soon with a priest so that we can satisfy the dead relatives before something bad happens.
(Sitara’s explanation to Laurie: In Nepal, mostly in Hindu cultures, people make offerings to dead ancestors on different occasions and these rituals are very significant to them. We have certain days dedicated to these rituals and each family has a priest who comes to facilitate these rituals. Since coming to the USA, our family recognizes that they have not been able to carry these rituals out properly and believes that these might have some consequences. They are planning to carry out these rituals soon.)
Sitara and Laurie jointly address this by saying: Thank you for sharing with us how you practice these rituals. We would like to support you. However, in the meantime, it is also important to continue with his treatment as he has other symptoms too, besides remembering his childhood days. Your father’s illness is going to stay. The medicines won’t take the illness out of his body completely. Please do not be frustrated that medicines are not curing him; the purpose of the medications is to reduce the difficulties he is having. He may have fewer outbursts; he may be less tired than before. Although, it does not completely cure him it is still important to take this medication because it may make him more comfortable than before.
Laurie: I see that your father has six refills for this medication (donepezil) so he should be all set for the next six months. It is important to take this medication daily so that his symptoms can be managed.
(Sitara recognizes that the family may not understand the concept of a refill.)
Sitara: Do you know what refills mean? It means that you can take this empty bottle to the pharmacy and they will give you more medication. You do not have to see the doctor to get the next bottle of medicine. Even without seeing the doctor, you can take this empty bottle before you run out of medication and they will fill it again. It can be done up to six times. You have to make sure that you get this medication every month and give it to your father for another six months. Do you have any questions?
Sitara uses the ‘teach back’ method to elicit understanding: Please tell me how you will get more medication before this medication runs out – what will you do when you see that there are only a few pills left in the bottle? (Teach back is a way to confirm understanding of basic concepts and the actions required).
CG Deepak: My father does not know how things are carried out in USA. Even when he tries to learn, he forgets very quickly. He is still stuck with his life in the refugee camp. It is the same case with my mother, because she has no English and she does not understand much. I have to take them everywhere and do everything for them.
Laurie: If you could have extra help, Deepak, what would you like help with? Do you have any relatives or family members around who can help you? What kind of help do you get from them?
(Eventually, but probably not on this visit, Laurie would also ask about whether Deepak could use help with transportation, appointments, or was in need of respite. It would be overwhelming to ask all these questions during one visit).
Sitara: Also, please let me know if you do not understand any of the letters that you receive about medical appointments or insurance. I am here to help you with any communication or mail you receive. You can put it aside and I will help you go through it and explain it in Nepali at our visit. We want to make sure you understand everything before you make any decisions. Would that be helpful?
We can help you to get medical interpreters at your doctor’s office. It is your and your family’s right to receive treatment in the language of your choice so please do not feel like you are asking for extra when you ask for interpreters. Visits carried out in Nepali will involve your father and mother so that they can make decisions for themselves whenever possible.
Additional Mental Health and Cultural Considerations
Effects of years in a refugee camp. A unique aspect of this particular case involves the reason for this Nepalese family’s migration to America; they spent 17 years in a refugee camp after being ‘purged’ from their homeland Bhutan by the government. Nepalese-speaking people in Bhutan and ethnic Nepalis share a common language and culture. Poverty in these countries is often compounded by years of conflict involving multiple ethnic minorities. See map below to provide a geographical context.
Life in a refugee camp is even more physically and emotionally draining, often leading to multiple health problems as a result of years of stress on the mind and body (CDC, 2013). When Laurie and Sitara opened the case, Rishi had a rash on both feet. In the refugee camps, they used kerosene to treat his foot rash. He had severe cracks in both feet, with possible fungal infection. The first step was getting him to accept seeing a dermatologist and stopping the kerosene. The team attempted a prescription ointment, but there was no improvement. However, after several months of alternative therapy prescribed by the dermatologist, the rash resolved.
Individuals arriving in the U.S. after years in a refugee camp may appear much older than their stated age and have more health problems than most people of the same age... Individuals arriving in the U.S. after years in a refugee camp may appear much older than their stated age and have more health problems than most people of the same age, including problems typically more common in older adults. People in their 50s and 60s must be evaluated for geriatric syndromes, including cognitive impairment and geriatric mental health issues, such as anxiety and depression.
In addition to challenges with physical and mental health, individuals coming to the U.S. must now relearn how to survive and thrive in a completely unfamiliar environment, after suffering terrible losses in their home country (Bogenschutz, 2014). Most refugees have lost family members and almost all their worldly possessions. The U.S. healthcare team must learn to deal with grief and loss in the ways that they are meaningful and impact health in Nepali culture. They must also address issues of acculturation in the new environment, both for younger and older family members.
People in their 50s and 60s must be evaluated for geriatric syndromes, including cognitive impairment and geriatric mental health issues, such as anxiety and depression. During the visit, Rishi’s wife Sita commented, “We were fine in the refugee camps in Nepal; we came to USA at this age only for our children and their brighter future. If it was only for us, we would have stayed behind. It is not easy to navigate things here without English, especially in hospitals. Our only hope is our children; they will learn to speak English and then will take care of us. Once they start driving, it will be a whole lot better.”
This illustrates that older generations may retain more traditional cultural practices and roles, but expect their children to integrate or even assimilate into the new cultural matrix.
Meaning of caregiving and caregiver roles. While the meaning of dementia and other mental health disorders must be assessed in each culture and ethnic group, the meaning attached to caregiving must also be ascertained. What does it mean to be a caregiver? In many cultures, it is an expectation that children or family members will care for elders, regardless of what is required. In Upanishads, a Hindu scriptural text written in Sanskrit (the language from which Hindu scriptures followed by many Nepalese are derived), there is a phrase, “Maatri devo bhava, pitri devo bhava.” Essentially this means that parents are equivalent to God, and children are expected to treat and respect them like one. Asking questions about caregiver strain, burden or well-being may not translate, and therefore may not lead to honest or open answers. Not being able to provide care properly for elders directly translates to not being able to fulfill duties by children; this concept may be unfamiliar to someone in certain cultural groups (Roland & Chappell, 2014).
While the meaning of dementia and other mental health disorders must be assessed in each culture and ethnic group, the meaning attached to caregiving must also be ascertained. In addition, traditional gender roles in different cultures must be considered in interactions with families caring for someone with dementia. For example, in Western cultures, physicians or nurses might naturally turn to the daughter or daughter-in-law as the caregiver or decision-maker. But in patriarchal cultures, while the women might actually provide the hands on care, approaching the entire family as a group and including males (e.g., sons or son-in-laws) in care planning is important, since men are often more educated and typically the decision-makers
Health literacy and dementia care plans. An important component of a cultural assessment involves both health and general literacy – not only what people in a particular culture think about dementia (if there is even a word for it), but how they learn about health matters in general. In some cases, individuals may not read or write in any language. Therefore, leaflets or written materials may not be useful ways of imparting knowledge and describing skills. This also creates challenges in terms of retention of information – the care team may explain approaches to behaviors such as wandering or insomnia at one visit, but the family may not remember how to apply those approaches and may not even remember the tips on the subsequent visit. This has particular implications for the practice of developing an individualized care plan for clients and caregivers, a foundational element of care coordination and basic geriatric care. In cultures where there is an expectation that families will care for their elders at home, they may not use a written care plan, believing that the family will naturally take care of any needs that the person with dementia may have. Alternatives such as a recording of someone speaking in the person’s native language are one possibility. The family plays the recording on a device such as an electronic notepad or tablet when behavioral issues arise. Reinforcing the caregiver’s understanding of basic principles such as pharmacy refills is a cornerstone of each monthly visit.
Particularly when the person under care has dementia and/or mental illness, education geared toward navigating the healthcare system is critical and appreciated... Particularly when the person under care has dementia and/or mental illness, education geared toward navigating the healthcare system is critical and appreciated by caregivers who often face language and other barriers. This may include information about how to reach the right department (e.g., neurology or psychiatry) in the local healthcare facility or clinic; management of referrals; medication management; and arranging transportation. Caregivers also benefit from reminders and discussion of follow up strategy related to behavioral manifestations of distress.
Acculturation. Models of acculturation suggest that there are at least four potential combinations or styles of cultural adaptation: assimilation (primarily adopting the dominant culture); integration (adopting the dominant culture but also retaining the traditional culture); separation (primarily retaining the traditional culture); and marginalization (not having any one strong cultural identity).
Figure 1. Model of Acculturation. Adapted from (Ritter & Hoffman, 2010, used with permission)
Understanding where a particular family is on their journey to acculturation may help the healthcare team design appropriate interventions to best support their caregiving needs. The model in Figure 1 also informed decisions and actions related to this case study. It is particularly important to recognize that acculturation may be a slow process, requiring many visits and considerable patience on the part of the care team. Traditional cultural belief systems (worldview) and practices are deeply embedded within family and community structures and may take time to integrate with Western healthcare beliefs and values. In this case, the attitudes and beliefs of the parents, Rishi and Sita, most closely represent separation in the model, with a risk of marginalization. Their son, Deepak, demonstrates the potential for integration or even assimilation over time.
In some cultures, people with dementia are considered “crazy,” and this is thought to be related to an event earlier in their lives that brought on “punishment” from the gods. Combining rituals with western medicine. In some cultures, people with dementia are considered “crazy,” and this is thought to be related to an event earlier in their lives that brought on “punishment” from the gods (Ritter & Hoffman, 2010; Shankar et al., 2006). In these cases, an integrative approach that includes both Western (or allopathic) medicine and traditional ritualistic practices may enable the family to accept treatment that they would otherwise refuse.
Cultural practices have important physical implications that can be challenging to address. For example, traditional Nepali practice and dress includes sandal-like footwear or more often bare feet. For patients with infections or diabetes, this practice can immediately come into conflict with best practices from a Western medicine perspective. How one dresses is a major aspect of cultural identity, so a “simple” request to wear footwear likely has great meaning to people experiencing cultural dislocation.
Considerations for the Plan of Care
Rishi’s care plan must demonstrate cultural competence, particularly related to mental and behavioral health issues, to meet his needs and the needs of his family. Table 2 offers examples that describe his needs, with both potentially ineffective strategies and recommended culturally sensitive strategies listed.
Description of problem/needs identified
Recommendations for culturally-sensitive strategies
Rishi’s relatives may think that he is ‘crazy’ and not understand the dementia diagnosis.
Provide an extensive, detailed explanation of what dementia is during the first visit, so that the family has all the information that they need.
Recognize that the family needs time to absorb information and to learn new skills (such as how to approach behavioral manifestations of dementia and depression).
Explain and reinforce a few principles of dementia care at each visit, assessing caregivers for their level of understanding and using a native Nepalese interpreter whenever possible.
Cultural differences may impact a family’s perception of time.
Involving someone with a Nepalese cultural background and who speaks Nepalese language may enhance understanding of the family's needs and preferences.
Rishi sometimes chooses footwear that is not ideal for his foot problems.
Healthcare team must understand and appreciate accepting risk as a marker of personal agency.
Try to explain to Rishi and his wife that his preferred footwear is not the safest option.
Taking away Rishi’s traditional footwear so that he cannot wear those shoes/sandals.
Meet with the entire family and ask Rishi about why he prefers certain footwear.
Involve Rishi’s son Deepak as well as the women in the family who may provide some of the direct care, in explanation of the risks and benefits of various footwear choices.
Suggest verbal cues that offer Rishi footwear alternatives that are comfortable to him.
Showing respect for traditional dress and beliefs is important in building trust with an individual with dementia and family caregivers.
Removing the offending footwear might work, but could also increase agitation if Rishi tries to rummage around to find his “lost” shoes.
Speaking with all members of the family, instead of just the person’s spouse, may facilitate decision-making among the male and female members (in a patriarchal society, the male family members may need to be included, as well as women who may be providing some direct care).
Rishi is not able to communicate with clinic providers during appointments due to issues of language and culture.
Rishi’s son Deepak may not be available to accompany Rishi to appointments because of working multiple jobs. (Caregivers are expected to accompany a family member to appointments. Usually family members accompany an elder in a Nepali context. Continuity is a challenge when different family members accompany the person each time, and no one has complete information)
Tell family that Rishi’s wife or daughter-in-law should accompany him to appointments.
Have a professional medical interpreter go to appointments instead of a family member.
Encourage Rishi’s son Deepak and also other family members to accompany Rishi on clinic visits.
Explain the role of a medical interpreter; express value of family input during medical appointments as well.
Obtain a professional medical interpreter as well, if the family agrees.
In some cultures, women may not be encouraged to speak up (or at all) during clinic visits; therefore having only a daughter or daughter-in-law at a visit may not facilitate communication between the family and providers.
Families from certain cultures may not wish to appear as though they are abdicating their role in caregiving for their parents.
The medical interpreter can explain to Deepak how valuable his input is, and clarify that the role of the interpreter is simply to assist the healthcare team in understanding all of the conversation.
Rishi’s son Deepak must work multiple jobs. Rishi’s wife has many chronic health issues, and is unable to provide more caregiving to her husband.
Suggest paid caregiver 3 times a week.
Suggest Deepak quit one of his jobs in order to be home more.
Encourage all relatives, male and female, to be involved in care plan process.
Explore option of adult day health center with Nepalese participants, where at least some staff speaks Nepali and has awareness of Nepalese culture.
In certain cultures, the idea of bringing paid caregivers into the home to care for aging relatives goes against cultural beliefs.
Adult day health program could be perceived as an activity or destination, not a substitute caregiving. The family would continue to be the caregivers when Rishi is home.
Rishi does not always take his medication as prescribed.
Explain that the medications will be more helpful than traditional healing practices.
Tell Rishi’s family that he may end up in the hospital if they don’t get him to take his medications.
Take time to learn about traditional healing practices, such as making ritual offerings to dead ancestors.
Demonstrate an appreciation for these practices and express how valuable both traditional practices and medication may be in treating symptoms of dementia.
Ask about other cultural practices, such as those related to food (e.g., ensuring that the family has been able to maintain their vegetarian diet) and physical environment (have they been able to dedicate a room for prayers and support other important religious activities).
Many non-pharmacological interventions are effective in managing the behavioral and psychological manifestations of distress that may accompany dementia.
Since Rishi also suffers from depression, the comfort of these traditional healing practices may have an impact on the frequency or severity of his expressions of distress, on his depression and quality of life. They may also influence the well-being of his wife and other relatives as well.
Families from other cultures caring for individuals with dementia and related mental health conditions in the community have complex needs and many challenges. Table 3 outlines some basic principles of culturally-competent care that should inform nurses caring for this population. We also offer some general recommendations for practice and include Table 4 to provide links to additional helpful resources to provide culturally competent care for patients and families dealing with dementia.
Determine meanings of dementia, depression, and related concepts in the person’s culture of origin.
Determine meaning of caregiving, gender roles, and role of elders in society in culture of origin.
Attempt to ascertain type and degree of cultural adaptation of individual with dementia and caregivers; may differ for older and younger family members.
Determine cultural beliefs about medications and traditional healing practices.
Identify challenges to maintaining food preferences such as: following a vegetarian diet, access to traditional foods used for celebrations, adjustment to/influence of standard American diet (especially reliance on low cost foods that may be high in added sugar, fat, and salt).
Identify environmental issues that may impact cultural practices, such as space constraints limiting use of a dedicated room for prayers; high crime rate making it potentially unsafe to attend services in neighborhood.
Explore attitudes and beliefs about behavioral manifestations of dementia – what does the family think is causing the behaviors; what do the behaviors mean to family members?
Keep an open mind about communication styles of the family. For example, questions and answers are not as direct in Nepali as in English. Ask more open-ended questions versus yes/no questions.
Try to understand priorities of the family in decision-making (for example, an appointment with a specialist may not mean any more to them than a routine appointment; unless education is provided, there is chance the family might miss the specialist appointment).
Collaborate with community organizations that provide support services to the refugee community such as English as a second language (ESL) classes, tutoring, social activities, nutrition or parenting classes, and employment assistance. Community farming opportunities may be particularly important to people from agrarian societies, who may become depressed if unable to farm and spend time outdoors.
In addition to the specific recommendations for culturally-competent dementia and mental health care outlined in the table above, consider the following general recommendations:
- Clarify the roles of each team member. Whenever possible, include a team member who is a native speaker from the family’s culture.
- Be patient. Consider that visits may require a longer duration, to share tea and socialize, not just talk medicine and explain and educate. Visits are not quick, as it may be culturally rude to begin discussing intimate details without being social.
- Allow for multiple visits. Multiple visits are often required to do one task. Account for translation time and use trained medical interpreters when possible (not family or community members).
- Educate and revise care plan often. Use a person-centered, bottom-up approach. Let the family identify their own needs, challenges, and learn how they think a problem can be addressed. Add input; educate and revise the care plan as many times as is necessary. Consider that a written care plan may not be the most practical way to share information, and other options should be considered.
- Empower the individual and caregiver. Refrain from making decisions for the family. Provide them with tools and empower them to make their own decisions at their own speed, which by Western standards may seem slow.
- Acculturate yourself. Learn and respect cultural practices (e.g., removing shoes when entering the home; learning traditional greetings; following the calendar for traditional holidays and festivals that may impact health with requirements such as fasting). Learn about traditional medicine remedies used for common ailments (e.g., herbs, special foods).
Diversity and Cultural Competence in Health Care settings
Alzheimer’s Association Caregiver packet for Spanish Speakers
The Family Caregiver Alliance resources in Spanish, Chinese, Korean, and Vietnamese:
The Stanford Geriatric Education Center Fotonovela for Latino families/caregivers
Community Teaching Guide for how to use the Fotonovela:
Given the significant amount of people in the United States with dementia, both diagnosed and undiagnosed, healthcare providers will likely encounter dementia-associated mental health challenges... Given the significant number of people in the United States with dementia, both diagnosed and undiagnosed, healthcare providers will likely encounter dementia-associated mental health challenges such as depression, anxiety, irritability, agitation, hallucinations, or delusions. Many of these individuals receive care by family members in home settings, and it is essential to consider culture in the effort to help these caregivers access community resources and establish skills to care for individuals with dementia. The above case study described challenges associated with supporting both mental and physical health. The complexity of this case study illustrated both the significant impact of cultural practices and beliefs and the role that healthcare providers with skills in cultural competence can play in encouraging positive mental health outcomes in persons with dementia.
Bindiya Jha, MA
Bindiya Jha is an advocate and educator for refugee rights, language access, and equity. She is actively involved with the Bhutanese refugee population in Massachusetts and speaks Nepali. She has a Masters in International Development and Social Change from Clark University in Worcester, MA. Bindiya is also a trained Medical Interpreter and a Certified Court Interpreter in Nepali. She has worked in refugee resettlement for past 6 years and has extensive experience in immigration law. At present, she works in the capacity of Care Manager at Caregiver Homes. She teaches new Nepali medical interpreter students. In all of her roles, she has been a cultural advocate for the Nepali speaking refugee population.
Julie Seavy, RN, MTS
Julie Seavy is a Registered Nurse with Caregiver Homes in Worcester, MA. She has a BA from Boston College, and a Masters in Theological Studies from Harvard Divinity School with an emphasis on Religion and Culture. Julie is a Board Certified Holistic Nurse (HN-BC) and a Certified Health Coach.
David Young, PhD
David Young is a licensed Clinical Psychologist and Vice President of the Center for Clinical Excellence at Seniorlink in Boston, MA. Seniorlink, through its subsidiary provider Caregiver Homes provides elders and individuals with disabilities with an innovative model of full-time in-home care and support as a quality alternative to more restrictive and expensive long term care. In the Center for Clinical Excellence, Dr. Young focuses on new program innovation and best practices, outcome measurement and quality assurance.
Alice Bonner, RN, PhD, FAAN
Alice Bonner is a geriatric nurse practitioner, caring for nursing home residents and their families for over 25 years. She is currently an Associate Professor in the School of Nursing, Bouve College of Health Sciences and a Faculty Associate in the Center for Health Policy at Northeastern University. From 2011 to 2013, she served as Director of the Division of Nursing Homes in the Centers Medicare and Medicaid Services (CMS) in Baltimore, MD. She currently serves as a consultant to CMS.
© 2015 OJIN: The Online Journal of Issues in Nursing
Article published January 31, 2015
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