CE/CME

Caregivers of Dementia Patients: Mental Health Screening & Support

Clinician Reviews. 2016 June;26(6):42-49

References

1. 2015 Alzheimer’s Disease Facts and Figures. Chicago: Alzheimer’s Association; 2015. www.alz.org/facts/downloads/facts_figures_2015.pdf. Accessed May 20, 2016.
2. Wallis L. Reach VA helps family caregivers of dementia patients. Am J Nurs. 2011;111(6):18.
3. Office of Disease Prevention and Health Promotion. 2020 Topics and objectives—objectives A–Z. Healthy People 2020. www.healthypeople.gov/2020/topics-objectives. Accessed May 20, 2016.
4. Levine C, Halper D, Peist A, Gould D. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Aff. 2010;29(1):116-124.
5. MetLife Mature Market Institute, National Alliance for Caregiving, and the University of Pittsburgh Institute on Aging. The MetLife Study of Working Caregivers and Employer Health Care Costs. February 2010. www.metlife.com/assets/cao/mmi/publications/studies/2010/mmi-working-caregivers-employers-health-care-costs.pdf. Accessed May 20, 2016.
6. Zarit SH. Assessment of family caregivers: A research perspective. In: Family Caregiver Alliance. Caregiver Assessment: Voices and Views From the Field. Report from a National Consensus Development Conference. Volume II. San Francisco: Family Caregiver Alliance; 2006:14. https://caregiver.org/sites/caregiver.org/files/pdfs/v2_consensus.pdf. Accessed May 20, 2016.
7. Family Caregiver Alliance National Center on Caregiving. (2012). Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners. 2nd ed. https://www.caregiver.org/selected-caregiver-assessment-measures-resource-inventory-practitioners-2012. Accessed May 20, 2016.
8. Family Caregiver Alliance. Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers. San Francisco: Family Caregiver Alliance; 2006. www.caregiver.org/sites/caregiver.org/files/pdfs/Assessment_Toolkit_20060802.pdf. Accessed May 20, 2016.
9. Antonovsky A. The structure and properties of the Sense of Coherence Scale. Soc Sci Med. 1993;36(6):725-733.
10. Bédard M, Molloy DW, Squire L, et al. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41(5):652-657.
11. Czaja SJ, Gitlin LN, Schulz R, et al. Development of the Risk Appraisal Measure (RAM): a brief screen to identify risk areas and guide interventions for dementia caregivers. J Am Geriatr Soc. 2009;57(6):1064-1072.
12. Gort AM, Mingot M, March J, et al. Short Zarit scale in dementias. Med Clin (Barc). 2010;35(10):447-449.
13. Kinney JM, Stephens MA. Caregiving Hassles Scale: assessing the daily hassles of caring for a family member with dementia. Gerontologist. 1989;29(3):328-332.
14. Locke DEC, Dassel KB, Hall G, et al. Assessment of patient and caregiver experiences of dementia-related symptoms: development of the Multidimensional Assessment of Neurodegenerative Symptoms Questionnaire. Dement Geriatr Cogn Disord. 2009;27:260-272.
15. Picot SJ, Youngblut J, Zeller R. Development and testing of a measure of perceived caregiver rewards in adults. J Nurs Meas. 1997;5(1):33-52.
16. Radloff LS, Teri L. Use of the Center for Epidemiological Studies-Depression Scale with older adults. Clin Gerontol. 1986;5:119-136.
17. Seng BK, Luo N, Ng WY, et al. Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. Ann Acad Med Singapore. 2010;39(10):758-763.
18. Family Caregiver Alliance. Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Family Caregiver Alliance; 2006:12. https://www.caregiver.org/sites/caregiver.org/files/pdfs/v1_consensus.pdf. Accessed May 20, 2016.
19. Michigan Dementia Coalition. Caregiver Assessment Tool Grid. The Rosalynn Carter Institute. www.rosalynncarter.org/UserFiles/Michigan%20Assessment%20Grid.pdf. Accessed May 20, 2016.
20. Zarit SH, Reever KE, Bach-Peterson J. Relatives of impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655.
21. Miyamoto Y, Tachimo H, Ito H. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs. 2010;31(4):246-253.
22. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583-594.
23. American Medical Association. Caregiver Self-Assessment Questionnaire. National Caregivers Library. www.caregiverslibrary.org/Portals/0/CaringforYourself_CaregiverSelfAssessmentQuestionaire.pdf. Accessed May 20, 2016.
24. Greenberg SA. The Geriatric Depression Scale (GDS). In: Try This: Best Practices in Nursing Care to Older Adults. Issue 4. New York, NY: Hartford Institute for Geriatric Nursing, NYU College of Nursing; 2012. https://consultgeri.org/try-this/general-assessment/issue-4. Accessed May 20, 2016.
25. Sheikh JI, Yesavage JA. Geriatric Depression Scale (GDS): recent evidence and development of a shorter version. In: Brink TL, ed. Clinical Gerontology: A Guide to Assessment and Intervention. New York, NY: The Haworth Press; 1986:165-173.
26. Pinquart M, Sörensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18(4):577-595.
27. Matschinger H, Schork A, Riedel-Heller S, Angemeyer M. On the application of the CES-D with the elderly: dimensional structure and artifacts resulting from oppositely worded items. Int J Methods Psychiatr Res. 2006;9(4):199-209.
28. Caregiver Burden Scale. Family Practice Notebook. www.fpnotebook.com/Geri/Exam/CrgvrBrdnScl.htm. Accessed May 20, 2016.
29. Caregiver Stress Self-Assessment. www.mass.gov/elders/docs/caregiver-stress-self-assessment.pdf. Accessed May 20, 2016.
30. US Department of Veterans Affairs. Caregiver Self-Assessment Worksheet. http://www.va.gov/GERIATRICS/guide/longtermcare/Caregiver_Self_Assessment.pdf. Accessed May 20, 2016.
31. Thompson CA, Spilsbury K, Hall J, et al. Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatr. 2007;7:18-29.
32. Chien LY, Chu H, Guo JL, et al. Caregiver support groups in patients with dementia: a meta-analysis. Int J Geriatr Psychiatry. 2011;26:1089-1098.
33. Burns R, Nichols LO, Martindale-Adams J, et al. Primary care interventions for dementia caregivers: 2-year outcomes for the REACH study. Gerontologist. 2003;43(4):547-555.
34. Schulz R, Burgio L, Burns R, et al. Resources for Enhancing Alzheimer’s Caregivers Health (REACH): overview, site-specific outcomes, and future directions. Gerontologist. 2003;43(4):514-520.
35. Gottlieb BH, Thompson LW, Bourgeois M. Monitoring and evaluating interventions. In: Coon DW, Gallagher-Thompson D, Thompson LW, eds. Innovative Interventions to Reduce Dementia Caregiver Distress: A Clinical Guide. New York, NY: Springer; 2003:28-49.
36. Marriott A, Donaldson C, Tarrier N, Burns A. Effectiveness of cognitive-behavioral family intervention in reducing the burden of care in carers of patients with Alzheimer’s disease. Br J Psychiatry. 2000;176:557-562.
37. Chu H, Yang CY, Liao YH, et al. The effects of a support group on dementia caregivers’ burden and depression. J Aging Health. 2011;23(2): 228-241.
38. Elliott AF, Burgio LD, DeCoster J. Enhancing caregiver health: findings from the Resources for Enhancing Alzheimer’s disease Health II intervention. J Am Geriatr Soc. 2010;58:30-37.
39. Sörensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3): 356-372.
40. Mittelman MS, Roth DL, Coon DW, Haley WE. Sustained benefit of supportive intervention for depressive symptoms of caregivers in patients with Alzheimer’s disease. Am J Psychiatry. 2004;161(5):850-856.
41. Mittelman M, Roth D, Clay O, Haley W. Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. Am J Geriatr Psychiatry. 2007;15(9):780-789.
42. Lavretsky H, Siddarth P, Irwin MR. Improving depression and enhancing resilience in family dementia caregivers: a pilot randomized placebo-controlled trial of escitalopram. Am J Geriatr Psychiatry. 2010;18(2):154-164.
43. Wimo A, von Strauss E, Nordberg G, et al. Time spent on informal and formal caregiving for persons with dementia in Sweden. Health Policy. 2002;61(3):255-268.
44. Koerner SS, Shirai Y, Kenyon DB. Sociocontextual circumstances in daily stress reactivity among caregivers for elder relatives. J Gerontol B Psychol Sci Soc Sci. 2010;65(5):561-572.
45. Lai DW, Thomson C. The impact of perceived adequacy of social support on caregiving burden of family caregivers. Fam in Soc: J Contemp Social Serv. 2011;92(1):99-106.
46. Martin-Carrasco M, Martin M, Valero C, et al. Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer’s disease patients’ caregivers. Int J Geriatr Psychiatry. 2009;24:489-499.
47. Mittelman MS, Haley WE, Clay OJ, Roth RL. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology. 2006;67(9):1592-1599.
48. Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer’s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. J Am Geriatr Soc. 2008;56(3):421-428.
49. Lu YFY, Wykle M. Relationships between caregiver stress and self-care behaviors in response to symptoms. Clin Nurs Res. 2007;16:29-43.

Assessment Tools
Assessment tools are commonly used to screen for known negative effects of caregiving and to monitor these effects following targeted interventions. Many caregiver assessment tools exist. According to the Family Caregiver Alliance’s Selected Caregiver Assessment Measures, recent efforts have focused on revising available tools to make them shorter and easier to use.⁷ Newer assessment models attempted to blend content areas (depression, burden, health behaviors, and quality of life) to establish a single screening instrument, in contrast to the stand-alone tools that measure only one domain.⁸

It is important to select an assessment tool that is easy to administer, reliable and valid, and in the public domain.^9-17 In its 2002 consensus project, the Family Caregiver Alliance recommended that assessments be multidimensional in approach, periodically updated, and reflective of culturally competent practice.¹⁸ In addition, they believe that those doing the assessments should have relevant training on the role of caregivers and the impact of caregiving.

The Caregiver Assessment Grid was developed by the Michigan Dementia Coalition following a review of 19 scales that measure caregiver burden, stress, quality of life, memory, behavior, and perceptions of caregiving tasks (among others).¹⁹ Tools range from simple to complex, with some having Yes or No answers and others using four- or five-point Likert scales. Tools listed in the Caregiver Assessment Grid that meet the criteria for brevity and are in the public domain are discussed here.

The Zarit Burden Interview (ZBI) was initially a 29-item tool that was reduced first to 22 items and then further to 12 items, with a brief screening version containing only four items.^10,20 Correlations between the reduced-length versions were .92 to .97 for the short version and .83 to .93 for the screening version.⁷ The Zarit screening version has a sensitivity of 98.5% and a specificity of 94.7%.¹⁰ The ZBI is frequently applied to assess burden, has been cited in many studies, and has been validated for use in other languages.²¹ This interview tool measures subjective burden, distress, perceptions of social and physical health, financial and emotional burden, and relationship with care recipient. The ZBI has been embedded in other blended assessment tools; for example, it is part of the California Caregiver Resource Centers Uniform Assessment Tool.¹⁹

The Pearlin Caregivers’ Stress Scales are based on a conceptual model of the Alzheimer’s Caregiver Stress tool, an eight-item scale developed by the Alzheimer’s Association that links “yes” answers to helpful websites.²² This 15-item instrument addresses cognitive status, problem behaviors, overload, relational deprivation, family conflict, job/caregiving conflict, and economic strain, among others.²²

The American Medical Association (AMA) published an 18-item caregiver assessment tool for health care professionals in 2002, encouraging them to identify the needs of caregivers. This tool includes 16 Yes or No questions and two global scale items.^19,23

The Risk Appraisal Measure (RAM) developed by Czaja et al is a 16-item assessment that takes 5 to 7 minutes to administer and identifies risk areas for caregivers. This instrument explores six domains of caregiver risk that are potentially amenable to intervention: depression, burden, self-care and health behaviors, social support, safety, and patient problem behaviors. The RAM was developed and validated using data from REACH II (Resources for Enhancing Alzheimer’s Caregiver Health)¹¹ in a study involving 642 participants (219 white; 211 black; 212 Hispanic).¹¹ The authors reported acceptable concurrent validity and internal consistency for the entire scale for the overall sample (Cronbach alpha = .65) and across racial and ethnic groups.¹¹ The authors acknowledge that the Cronbach alpha (a measure of internal consistency, or how closely related a set of items are as a group) is relatively low but explain that this is expected due to the six distinct domains the instrument attempts to measure. The findings from this study highlight the challenge of maintaining reliability and validity in blended screening tools.

The Geriatric Depression Scale (GDS) is a broadly used, well-known tool that has been used extensively with the elderly population.²⁴ The GDS has both a long (30 questions) and short (15 questions) version. In the shorter version, five of the Yes or No questions indicate depression if answered negatively and 10 indicate depression if answered positively. The long and short forms were compared in a validation study and found to be successful in differentiating depressed from nondepressed adults (r = .84, P < .001).²⁵

The Center for Epidemiology Studies Depression Scale (CES-D) is a 20-item self-report scale that takes 5 minutes to administer and measures depressive feelings and behaviors over the previous week.¹⁶ It is commonly used to assess depression in caregivers.²⁶ Matschinger and colleagues have expressed concerns about the CES-D being administered to caregivers, many of whom are elderly, because the questions in this instrument are oppositely worded: One part asserts and the other denies the content to avoid a tendency for respondents to give positive answers to questions (known as acquiescence).²⁷ These researchers raise the concern that opposite wording may affect the reliability of the scale and recommend against its use in elderly persons.

The Caregiver Burden Scale, adapted version from the Family Practice Notebook, is a 22-item version of the Caregiver Burden Interview.²⁸ A 12-item version was developed by Bèdard et al, along with a four-question screening version.¹⁰

There are several easily accessible online self-assessment tools. The AMA Caregiver Self-Assessment is self-scored and offers help interpreting the scores, suggestions for next steps, and resource information.²³ The Caregiver Stress Self-assessment offered by Mass.gov is a modified version of Dr. Steven Zarit’s work and is also self-scored.²⁹ The Veterans Administration (VA) has a more complex Self-Assessment Worksheet that focuses on roles and responsibilities as well as stress; a list of “next step” actions is offered, along with information about VA resources.³⁰ While these tools allow users to assess their well-being in privacy, they do not offer the support and interventions that face-to-face screening can include.

Following Henry’s confirmed diagnosis of AD, his NP screened him for depression using the Geriatric Depression Scale and prescribed an antidepressant. She recommended that he take donepezil in the hope of slowing the progression of memory loss in the early to middle stages of the disease. She also screened his wife for her level of caregiver stress using the Zarit Burden Interview, shortened version, and referred her to a caregiver support group, informing her of respite services, including a supportive day program offered at the local Council on Aging. She also referred Henry to a memory loss support group in the community. Despite the available support, the stress in their life was palpable.

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Caregivers of Dementia Patients: Mental Health Screening & Support

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