Part One, Section C: Culture and Caregiving: Adapting the Savvy Program to Native Culture
First, there are some required insights about culture that Savvy Caregiver Trainers must understand in order to customize the Savvy Caregiver program to any given American Indian and Alaska Native group. After learning the cultural insights, you will be shown the action-steps to apply them and achieve a culture-specific Savvy program.
Why Are Cultural Insights Needed?
Savvy caregiving trainers will be helped by understanding American Indian and Alaska Native caregiving experiences as a part of tribal ways of life. You will have the ability to provide training that really fits into your trainees’ ways of life. That makes the Savvy training more understandable, acceptable, and better used.
Tribal cultural variations are huge among American Indian and Alaska Native people. One person may not know the tribal ways of another native Nation. This would be particularly true for aspects of tribal culture that are not very obvious to outsiders.
Examples of tribal cultural variation include language differences. Even across tribes that have similar cultural histories, such as the Pueblo people, there can be important language differences. Tribal languages may not have words for “dementia.” However, there may be words for people who have unusual behavior due to schizophrenia or other severe mental disorders. These conditions have been present in all cultures over all time.
Yet, dementia that develops in older adults does not show symptoms until late life. American Indian and Alaska Native people as a group have only started living into the ages of greatest risk for showing signs of dementia in the last few decades. Shorter life-spans in the past meant that fewer people would have the late-life dementias seen today. Specific terms for dementia simply weren’t developed because that experience in life was very uncommon.
Even if all of the trainer’s participants in the Savvy course are from the same tribe, “family culture” within the larger tribal culture can be determined as potentially helpful with the training and use of the Savvy approach. American Indian and Alaska Native elder caregivers are more likely than others to get inadequate support and suffer more stress as caregivers because many aspects of tribal life are not part of mainstream programs. The challenge to caregiving trainers is to develop a self-aware, cultural sensitivity which will help them identify what aspects of their client’s behavior are influenced by their cultural background. This is important because culture is so quietly powerful.
Knowing some of the basic principles of culture can help the Savvy Caregiver Trainer find the cultural ways that make a difference to how caregiving takes place in a certain family in a tribal community. Customizing the Savvy training to any American Indian and Alaska Native cultural system can be done by understanding a few cultural principles and action-steps. These are described immediately below under the heading, “The Power of Culture.”
The Power of Culture
The power of culture is incredible. Culture is the foundation of conscious and unconscious beliefs, values and behaviors that embody “proper” ways to live. Culture strongly influences our thinking, problem-solving skills, and meanings attached to life events.
CASE EXAMPLE: A father and son were in a car wreck. They were transported to a hospital. The father was dead on arrival. The son was alive but needed emergency surgery to survive his injuries. At the hospital, the doctor who was on call to do the surgery said, “I cannot do this surgery. This boy is my son.”
How could this be? Answer: The doctor is his mother.
Cultural reason: Most people don’t get this riddle because our culture accepts that men will become doctors and women will become nurses. We learn this so strongly that we could not come up with the simplest answer, that the surgeon is the boy’s mom. This is a sexist thought to hold. But, culture is so powerful, it can defeat even our best efforts to answer the riddle because, Unknown to us, a culturally derived belief was influencing our thinking.
CASE EXAMPLE: In the 1970’s there was a television show called “All in the Family” which featured a bigoted man named Archie Bunker. One episode was about a temporary beef shortage in the United States. As a result, horse meat was sold at some meat markets. Archie’s family played a trick on him by serving a roast of horse meat without telling him what it was. He ate several bites and kept talking about his day as if nothing was wrong. But, finally the family told him that he was eating horse meat. Upon learning this, Archie jumps-up from his chair and runs to the bathroom where he vomits.
Why would this be? Answer: American culture has values against eating horse meat.
Cultural reason: The cultural insight to learn is not whether eating horse meat is bad or good. The cultural insight to learn is that the cultural rule against eating horse meat (which will not hurt a person) was so powerful, that the cultural rule produced vomiting. Vomiting is a complex physiological event that by itself is strictly biological. But, a cultural belief was able to trigger it. Unknown to Archie, his cultural belief that it was bad to eat horse meat was so strong that it made his body vomit.
CASE EXAMPLE: A class of urban, non-Indian students was told of an event that their teacher saw. At a meeting on American Indian and Alaska Native health, two AI men went walking outside the meeting. Across the street, they saw a group of people huddled together and all looking down at the sidewalk. Wondering what was going on and if someone was hurt, the two men went to see what was causing the commotion. Upon being able to see through the crowd, they saw that people were admiring a very cute puppy that was rolling and bouncing and yapping. One of the two AI men made the comment, “Oh, soup dog.” His friend, although thinking he knew, asked for clarification. The man said, “Yes, you thought right! Small dogs are best for eating.” The classroom broke into loud “Ewwww,”s and “Gross!”
Why would this be? Answer: Most people have learned a cultural rule that dogs are not for eating.
Cultural reason: Some American Indian and Alaska Native tribes have had in the past or may have now cultural rules that “allow” for eating dogs. Today, it is certainly not a common thing, and may not have been common in the past because dogs often helped with hunting, pulling burdens, and keeping other pest-animals away. Still, the cultural rules “allowed” for eating dogs. By the way, this cultural rule is found worldwide. However, the non-Indian students had not imagined such an end to the story and reacted in a disgusted way. Their teacher gave cross-cultural examples of such rules and suggested that one way to understand eating dogs could relate to conditions of low food supplies and need to survive.
Note to Savvy Trainers: Consider creating an example of culture influence from your own life experience as a member of your native family and community.
Professionals who know how to detect cultural aspects of caregiving behavior will be able to:
- Develop services which work with, and not against, caregivers’ culture.
- Communicate with caregivers in more effective ways.
- Obtain better outcomes for caregivers.
People all over the world are more alike than different. For example, all American Indian and Alaska Native caregivers must respond to patients who wander, don’t sleep much, or must be cleaned due to incontinence. So, what are the differences between diverse American Indian and Alaska Native caregivers and other caregivers? Nothing and everything.
Nothing is different, in the sense that wandering away is just that, no matter the tribal culture of the caregiver. But, there are different levels of anxiety, community and neighborhood patterns, and tolerance of symptoms that make a significant cultural difference in caregiving strategies. These cultural differences must be understood in order to effectively increase the use of services among American Indian and Alaska Native caregivers and to better respond to elderly needs in general.
Some Basic Concepts About Culture
Concept #1: What is Culture?
Culture consists of the many things including beliefs, values, and attitudes learned as a member of a certain society. Cultural beliefs, values, and attitude serve as a mental map to guide behavior. In a complex society like the United States, some parts of culture are shared by all, yet some parts of culture are found only in certain segments of society. Family caregiving can be affected by cultural “rules” that define who is a family member and “how close” a family member they are.
Cultural traits can be very obvious or very subtle. American Indian and Alaska Native children learn to treat the elderly with respect in the process of being taught manners. However, more subtle learning leads to the many negative stereotypes about old people. People simply absorb these beliefs by living around behavior that reinforces such biases.
Cultural beliefs are strong! Savvy trainers must understand not only their trainee’s culture but their own as well, since their background and way of life determines what “feels right” to them. People absorb their own cultural map for living so that certain ways of behaving appear to be the only reasonable way to act. Of course, most ways of thinking and acting are cultural in origin. That is, they were learned by individuals as members of a certain society, religious affiliation, political affiliation, economic group, or age.
Caregiving for an elder with dementia is often done in American Indian and Alaska Native homes due to a strong value placed on taking care of elders, whether with dementia or not. Sometimes caregivers may over-do caregiving in ways that exhaust themselves and leaves the elder with dementia without an effective caregiver.
Culture is sometimes not conscious. People are not always aware of the cultural roots of their behavior. For example, research has shown that the distance between people when they talk varies due to cultural background. Overall, Latinos prefer a short, “cozy” distance, and, overall, Anglos favor more distance from each other. The study even gave the average distance in inches for each group. However, imagine if you were asked, “How many inches apart does your culture prefer when having a conversation?” You could not give the answer, but your behavior does!
For caregivers, “unconscious culture” may show in ways that assume (due to cultural “rules”) that women will be the “hands-on” caregivers and men will be the “managers” of how the resources for caregiving are arranged.
Concept #2: Cultural Relativism
Understand cultural matters of another person or group by seeing their way of life through their eyes. For example, think about a person who refuses buffalo meat offered at someone’s house they are visiting. Is this a clear act of rudeness? Refusing the buffalo may be due to that person’s belonging to the Buffalo Clan in their tribe and consequently not being allowed to eat it because buffalos are like family. Their refusal was not rude. The person was honoring their traditions and ways of life.
For example, imagine that a grandson of an elder with dementia is part of the caregiving group. The grandson wants to get married and knows that it will cause a problem with the caregiving coverage for his grandfather. At the time of a family discussion about the marriage plans, another person from a very different tribal culture is visiting in the home. The visitor sees the grandson leave the house by walking past his father to talk with his mother’s brother. At first, the visitor considers this very rude to the father. Later, it is explained that in this culture, the mother’s brother is expected to play a large role in important decisions for his sister’s children.
IMPORTANT: The concept of cultural relativism should not be used to excuse behaviors that are clearly harmful to others. The point is that just understanding a person’s behavior does not necessarily mean that you think it’s acceptable.
Savvy trainers may often observe that caregivers do not use community resources as much as they could. Find out why community resources are under-used. Reasons may include things that relate to certain agencies, clinics, or people working there. Each agency, clinic, and staff can have meanings associated with them that could be negative and keep that caregiver from using them. One agency may have been unhelpful in some past experience and has come to be seen as always unhelpful. Staffing of community resources may have people that are not as friendly and understanding as they could be. Such people come to be seen as barriers to getting services. Work with the caregivers to get past such meanings so they can get the resources needed.
Concept #3: Cultural Pluralism
Cultural pluralism means that many cultures may live in one place and still have distinctive life ways. Many tribal Nations with distinctive cultures and life experiences live across the U.S. Savvy trainers should be sensitive to caregivers’ cultural backgrounds as they do the Savvy course. Caregivers may silently wonder how much of their own personal culture it is safe to reveal. Make specific statements that all American Indian and Alaska Native cultures will be honored and respected. Tribal cultures are different by language, dialect, physical traits, food preferences, religious preferences, and specific living locations.
Why the Special Concern About American Indian and Alaska Native Culture and Services?
Savvy trainers need to be aware of how cultural factors are affect health behaviors. This is important when it comes to dealing with American Indian and Alaska Native elders affected by dementia. Among American Indians and Alaska Natives, whole families may be involved in providing care. That can include multiple generations of cultural beliefs and practices. Age differences between service providers and service receivers may also play a role in communications. Generational differences between Savvy trainers and participants can mean that each grew-up in a different time when life and culture was not like it is now. Savvy trainers and caregivers may also be different due to tribal membership, gender, region, language, religion, etc.
Elder caregivers may be less likely to challenge service providers than are younger patients. Savvy trainers may be effective advocates for them.
Concept #4: Cultural Flexibility
Cultural “Rules” Culture is highly complex and filled with rules and exceptions to the rules. Caregiver trainers can better organize their thoughts about a given culture or caregiving family by recognizing a few basic sources of cultural variation.
Intra-cultural Variation
Cultural variation within American Indian and Alaska Native groups should be expected. There is no one tribal culture that will practice the beliefs of all American Indians and Alaska Natives, for instance. For example, even in the same tribe, it would not be surprising to find one family using a certain cultural value and another not using it. This may be due to individuals having differing degrees of attachment to their original culture.
An example intra-cultural variation is found among the Choctaw people. The tribal name “Choctaw”, for instance, is an artificial one which incorporates numerous specific Choctaw groups (e.g., Oklahoma Choctaw, Mississippi Choctaw, and other Choctaws). Each has variations in history, language, and beliefs. The point is that while you may be able to think of all Choctaws as one tribe, there are many differences across all Choctaws.
Degrees of Attachment
Individuals from the same tribe may vary in how much they cling to certain cultural values. Or they may use some but not all of these values. For example, the value placed on having extended family nearby may be reduced, but there is still a strong value on respecting all of your kin.
Masked Culture
American Indian and Alaska Native people who have adopted a large amount of American culture have not necessarily lost their Native heritage. They have simply shown a great ability for using the cultural system of the majority population. That can be very helpful when living in two cultures.
However, it is important to recognize that American Indian and Alaska Native people who seem to mainly participate in American culture, may still keep many traditional values. The traditional values still connect them to their elders. Savvy trainers should be aware of these cultural roots even in families who appear to be culturally American.
Culturally Traditional American Indian and Alaska Native Elders
What is now considered “traditional,” was at one time, new and different. Culture change is often due to adapting to new situations, such as invasion from outsiders, new laws, and more people from other cultures. The process takes place at variable rates or it may not happen at all. Some tribes have experienced more encroachment from the majority culture and others less. Either way, the older generation is more likely to have traditional cultural orientations than younger tribal members.
Caregivers may be helped by a reminder that although their elder with dementia is living today, their memories may be of much earlier times. Earlier times may have certain cultural expectations that today’s generation does not. Understanding elders’ ways as a valuable window into the past may help to give make the elder’s expectations important and not obsolete.
Culture is Always Changing
Because the world is always changing, culture is always changing. For example, climate, economics, and technology are always changing and often very fast. Even disease patterns can change, such as less TB today but more dementia. As the world changes, people change, too, in order to adjust to new things in the world. People change the ways that they view their world as they adjust to new aspects of life.
Caregivers may explain dementia in today’s medical terms, such as a brain disease in which cells are being lost. However, they may wonder why their loved one was affected, why now, why in this way, and other questions. These types of questions may be answered with cultural beliefs.
Expect caregivers to have many of their own explanations and questions about dementia. That is very normal. Caregiving is not a school test about medical facts only, it is a journey of the heart filled with love and compassion for their elder. Life experiences such as supporting an elder with dementia always causes questions.
Culture is Expressed in Different “Amounts”
The amount of participation or involvement in the majority culture by American Indians and Alaska Natives can be seen to vary from very little to total immersion. For example, some people may be viewed as culturally traditional, multi-cultural, or assimilated. Other casual ways to communicate this range of cultural expression can be understood with the terms, “White Indian” (not very traditional), “Indian” (standard expression of Indian identity), or “Indian Indian” (very traditional).
Culture is Expressed Differently In Different Situations
American Indian and Alaska Native people adapt to life in a multicultural society by using their native culture in certain situations and keeping it to themselves in others. For example, around non-Natives, native language may not be used, or references to religious matters may be kept silent. However, around other American Indians and Alaska Natives, there is more comfort in using native language or mentioning something about native religion. The choice to conceal one’s cultural identity is determined by many things including negative experience of being perceived as “different.”
Action-Steps to Customize the Savvy Caregiver Program to Any Tribal Culture
There are two main ways to customize the Savvy Caregiver Training to the cultural ways of any tribe.
- A list of questions is given below that help to bring-out cultural beliefs about dementia.
- Listen very closely for terms used to talk about caregiving, dementia, family, and ways caregivers have found to adapt to caregiving.
The 2-step approach above is simple in a way. Yet, listening closely to the caregivers’ answers takes some practice and time. Always listen for how caregivers describe their situation. Pick out words they use and discussion of how they deliver care.
Savvy Caregiver Trainers can address the problem of discovering cultural beliefs about dementia and caregiving by using a set of questions to bringout trainees’ health beliefs. Trainers often learn about their own beliefs in the process of understanding others.
The answers to the questions are used to get a clear understanding of problems and their solutions from the caregivers’ viewpoints. The questions help the caregiver tell their story about how dementia is affecting their lives.
Stories of Caregiving: SOCs
Questions that bring-out American Indian and Alaska Native health beliefs about dementia produce a “story or picture” of the caregivers’ ways of explaining what is happening to them. Their SOC is the explanation of their caregiving situation as they see it. Through the questions below, the Savvy Caregiver Trainer can quickly obtain some sense of caregivers’ SOCs. The questions do not have to be asked in the exact form in which they appear.
Caution: The questions included are fairly brief, which helps make them usable. However, this brevity also means that one-time use with a given caregiver trainee will yield a superficial and potentially misleading profile of the SOC. These questions are most effective when you use them over and over during the course of the training sessions. You can change the wording a bit so that you still “get at” their SOC without sounding so repetitive.
Step One
Ask some or all of the questions below in order to help the caregiver give their SOC of how they experience caregiving for an elder with dementia.
- What would be words, phrases or descriptions of dementia that are used in your language?
- What do you think caused the dementia?
- When do you think the dementia started?
- What does dementia do to the elder?
- What do you fear most about dementia?
- What are the main problems caused by dementia?
- What should be done about the dementia?
- Who in the community and family helps you care for the elder with dementia?
- What are good things that your tribal community has or does that helps you adapt?
- What are problems that your tribal community has that hinders your adapting to careing for the elder with dementia?
Step Two
Listen closely to the answers to each question:
1. Are there certain words or phrases used that will help you communicate with the caregiver?
EXAMPLE: If the phrase “crazy behavior” is used, it may indicate that the caregiver is feeling that the elder’s behavior is stigmatizing. If so, emphasize the organic brain damage that is causing the memory loss and behavioral problems. Also, it may be that the caregiver could benefit from being made aware that other terms can be used that more accurately describe the behavioral symptoms of dementia without resorting to the offensive term, “crazy.” For example, the elder is not crazy, the elder suffers from a brain disease that makes normal memory and thinking “come out wrong.”
2. Do the answers reveal belief that dementia is caused by both biological and forces related to religion?
EXAMPLE: Some families or tribes may believe that when the elder talks to people we don’t see, that the elder is communicating with the “other side.” The medical term of such talk could be “hallucinations.” However, the family may stick with the belief that the elder is actually talking to people on the “other side.” If so, ask the family if it’s disturbing. If it isn’t, honor it by accepting their “way.” Take it as an opportunity to learn part of another cultural way of life, or let it reinforce your way if it happens to be the same. Such an interpretation may be less negative and stigmatizing than “hallucinations.”
3. Are there indications that the caregiver has a set of helpers in place, either from family only or from family and community?
EXAMPLE: As caregivers “tell their story” in response to the questions above, they may naturally speak about their caregiving in ways that reveals the presence and help from other family members. If not, that could be information for you that this particular caregiver should be encouraged to pay close attention to the topic of “family” mentioned throughout the course.
4. Do any of the answers suggest that the caregiver will have trouble adapting to caregiving?
EXAMPLE: As the caregiver responds to your questions, notice if there are signs in their voice tones, facial expressions, or actual statements that suggest feeling depressed, “down,” or burned-out. Compassionate responses from you could include an empathetic response, such as, “It seems that you might not be feeling very good. I’m sorry to learn that. The training that we will do together can help the caregiving tasks become a more positive experience.”
NOTE: The Savvy program is not a support group or counseling program! It is a class on caregiving techniques that can make caregiving more beneficial to the “patient” and assist the caregiver in coping due to learning more about the disease and how to manage it. But, it is always appropriate for you to be empathetic and compassionate to caregivers who talk about emotional problems. If a caregiver appears to have difficulties adapting to caregiving that are persistent and interfere with daily life, then that caregiver should be made aware of professional resources in the community.
Step Three
Help the caregiver understand the disease and how to adapt to caregiving in a compassionate way that honors their beliefs and yours.
EXAMPLE: You are not expected to “correct” cultural beliefs that are different currently accepted medical notions about dementia. As caregivers tell their story in response to your questions, you may hear cultural beliefs about what causes dementia or how to treat it. You may realize that their belief would be considered wrong by current medical views. Rather than tell the caregiver that they are “wrong,” you can respectfully learn the fullness of what the caregiver believes. Then, you can offer the medical viewpoint as an additional way to understand what causes dementia. In this way, no one has to give up their cherished beliefs, but can still have their understanding expanded.
