Case Study: Cultural Aspects of Caregiving

An emergency department physician called me to “take care of” Mr Jones, a 67-year-old African American man with a history of Alzheimer disease (AD), hypertension, and diabetes. He was accompanied by his youngest daughter, June. When I stepped into the examination room, Mr Jones glared at me, tight-jawed. He clenched his fists, squirmed in the chair, and leaned forward, poised to bolt past me.

June sat beside her father, stroking his hands and rubbing his back. She turned to me, tears welling up in her eyes, and said, “He’s up every night, pacing around the house, rattling the door knobs and trying to get outside. I have a full-time job and two teenagers to raise. I can’t stay up all night watching him. Can’t you give him something to slow him down? I can’t take this much longer.”

Entering into this situation long after the family had run out of time, patience, and emotional reserves, I felt powerless and somewhat frustrated. I decided to use the Cultural Formulation Interview (CFI) Caregiver Supplementary Module to get a better handle on how to work with them.

[[{"type":"media","view_mode":"media_crop","fid":"27309","attributes":{"alt":"Cultural Formulation Interview","class":"media-image","id":"media_crop_8985159109382","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"2631","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","title":" ","typeof":"foaf:Image"}}]]The  CFI is a semi-structured, clinician-administered assessment instrument, composed of 16 questions that focus on the individual’s experience, perceptions, and social context of his mental health problems. The objective of the CFI is to identify cultural issues that arise in mental health clinical encounters using a person-centered approach.¹ Numerous studies have described ethnic differences in knowledge, beliefs, and concerns about AD among minority patients and their caregivers.^2-4 This area of research suggests that the way people understand, think about, and interpret their physical and mental health conditions influences their emotional and behavioral responses (eg, minimization of symptoms, impact of stigma, help-seeking behaviors).⁵

The CFI Caregiver Supplementary Module provides a systematic approach for the clinician’s exploration of “the experiences and views of individuals who perform caregiving functions, in order to clarify the nature and cultural context of caregiving and how those factors affect social support in the immediate environment of the individual receiving care.”¹ The module promotes rapport building and collaborative dialogue between the clinician and caregiver and helps elucidate the extent and resilience of the care recipient’s existing support system. The Caregiver Supplementary Module consists of the following 4 domains:

1. The nature of the relationship
This section outlines the duration of the caregiving relationship and whether the caregiver is familial or non-familial, paid or unpaid, and has professional training.

2. Caregiving activities and cultural perceptions of care
In this section, the respondent is asked to describe the nature and extent of assistance that he or she provides to the care recipient and to identify the positive and challenging aspects of the caregiving relationship. This portion of the module encourages the respondent to articulate the cultural beliefs and traditions that influence his approach to caregiving. The caregiver is asked to assess whether his current activities are consistent with or at odds with the role expectations of most caregivers in his community.

3. Social context of caregiving
Here the caregiver outlines current coping strategies for managing the care recipient. The caregiver is asked to describe the extent and adequacy of support and assistance that he receives from family members, friends, or neighbors.

4. Clinical support
This section explores how long the respondent expects to continue his role as caregiver and what resources and assistance the caregiver would like to receive from the health care team.

For this time-limited consultation, I selected relevant questions from each of the 4 domains of the CFI Caregiver Supplementary Module to highlight the family’s most pressing issues.

My first question for June was, “How long have you been taking care of your father? How did this role start for you?” June said that her mother-Mr Jones’s primary caregiver-had died 6 months earlier. As the youngest of 4 children, June had been raised to accept her role in the family as her parents’ primary caregiver.

Like many African American families, Mr Jones’s family made a collective decision to care for him at home, fueled by their strong cultural belief that home-based caregiving represents traditional values, such as repaying the debt to parents for being cared for as a child, as continuing a family tradition of mutual concern, or as setting an example for one’s children.⁶ In the past, support networks of African American elders have relied heavily on a collection of extended kin and non-kin for informal help and caregiving instead of formal elder care services (eg, nursing homes, adult day programs).^7,8

I then asked June to identify the area she found most challenging in caring for her father. She admitted that she felt trapped as she struggled to manage her father’s multiple medical conditions, angry outbursts, and insomnia. Even though kinship ties are a very powerful force in African American families, there is a growing body of research that suggests that African-American caregivers have smaller social networks and fewer resources in comparison with whites.^9,10

In the midst of an extended family network, one person usually bears the burden of caregiving and has few opportunities for shared responsibility and shared decision making. This caregiver may feel overwhelmed and frustrated by a lack of family and community support.^11,12

When I asked June about the ways in which other family members participated in caring for her father, she admitted that she felt too embarrassed to ask for their help. She believed it was her sole responsibility to take care of her father. During our interview, she agreed to ask for more assistance from her sisters and church members. She agreed that having someone stay with her father for several hours on Sunday while she attended church services would provide a much needed respite.

My final question: “How can we make it easier for you to help your father?” Initially, June was not sure what medical providers could do. Eventually, she understood that improving her father’s sleep might reduce his irritability and restlessness. She agreed to giving him low-dose trazodone and to take him to follow-up appointments with his primary care physician for management of his hypertension and diabetes. She also accepted a referral to the Web site of her local Alzheimer’s association.

At the conclusion of the consultation, June was relieved that her concerns had been heard and that she had been given practical help. I hoped that her regular health providers would set aside the time to use the complete Caregiver Supplementary Module to refine the treatment plan for June, Mr Jones, and their family.

We may not have all the answers for patients and their caregivers, but at least we have the right questions.

Disclosures:

Dr Hargrave is a psychiatrist at the Martinez VA Outpatient Mental Health Clinic in Martinez, California, and consulting psychiatrist at the University of California, Davis Alzheimer’s Disease Center in Sacramento, California. She is Chair of the American Board of Psychiatry and Neurology Committee on Geriatric Psychiatry Certification and Recertification. She is the founder of www.ethnicelderscare.net, a Web site focused on ethnicity and dementia.

References:

References
1. American Psychiatric Association. Cultural formulation interview. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA: American Psychiatric Association 2013. http://www.psychiatry.org/practice/dsm/dsm5/online-assessment-measures#Cultural. Accessed August 23, 2014.
2. Ayalon L, Areán PA. Knowledge of Alzheimer’s disease in four ethnic groups of older adults. Int J Geriatr Psychiatry. 2004;19:51-57.
3. Gray HL, Jimenez DE, Cucciare MA, et al. Ethnic differences in beliefs regarding Alzheimer disease among dementia family caregivers. Am J Geriatr Psychiatry. 2009;17:925-933.
4. Hinton L, Franz CE, Yeo G, Levkoff SE. Concepts of dementia in a multiethnic sample of family caregivers. J Am Geriatr Soc. 2005;53:1405-1410.
5. Lobban F, Barrowclough C, Jones S. A review of the role of illness models in severe mental illness. Clin Psychol Rev. 2003;23:171-196.
6. Lawton MP, Rajagopal D, Brody E, Kleban MH. The dynamics of caregiving for a demented elder among black and white families. J Gerontol. 1992;47:S156-S164.
7. Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005;45:90-106.
8. Dilworth-Anderson P, Williams IC, Gibson BE. Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980-2000). Gerontologist. 2002;42:237-272.
9. Ajrouch KJ, Antonucci TC, Janevic MR. Social networks among blacks and whites: the interaction between race and age. J Gerontol B Psychol Sci Soc Sci. 2001;56:S112-S118.
10. Hargrave R. Caregivers of African-American elderly with dementia: a review and analysis. Ann Longterm Care. 2006;14:36-40. http://www.annalsoflongtermcare.com/article/6317. Accessed August 25, 2014.
11. Fox K, Hinton WL, Levkoff S. Take up the caregiver’s burden: stories of care for urban African American elders with dementia. Cult Med Psychiatry. 1999;23:501-529.
12. Skaff MM, Pearlin LI. Caregiving: role engulfment and the loss of self. Gerontologist. 1992;32:656-664.