CE/CME

Caregivers of Dementia Patients: Mental Health Screening & Support

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

References

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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.
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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.
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19. Michigan Dementia Coalition. Caregiver Assessment Tool Grid. The Rosalynn Carter Institute. www.rosalynncarter.org/UserFiles/Michigan%20Assessment%20Grid.pdf. Accessed May 20, 2016.
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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.
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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.
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28. Caregiver Burden Scale. Family Practice Notebook. www.fpnotebook.com/Geri/Exam/CrgvrBrdnScl.htm. Accessed May 20, 2016.
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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.
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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.
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Interventions
Assessing caregiver challenges is only half the task of seeking to improve their lives. The next step is to provide advice and referral for supportive services including structured, valid, and reliable interventions. Structured support groups have been studied locally, nationally, and internationally.^26,31,32 Burns and colleagues developed a study to test two 24-month primary care interventions for caregivers of those with AD, focused on alleviating caregivers' distress.³³ In this randomized clinical trial, subjects were assigned to one of two groups: one received behavior management alone and the other added stress coping to the behavior management. Those who received only behavior management had worse outcomes for general well-being and depression. The researchers concluded that “brief primary care interventions may be effective in reducing caregiver distress and burden in the long-term.” This study underscores the need for a multifaceted approach to supporting caregivers in their complex and demanding role.

For depression
Depression is a common caregiver complaint; however, measuring incidence and prevalence of mental health issues is a challenge. Studies evaluating the effectiveness of interventions have had mixed results. The REACH II study showed that although caregivers do not usually meet criteria for clinical depression, they nonetheless experience depressive symptoms.³⁴ But, although depression is the most widely studied health consequence of being a caregiver for someone with AD,³⁵ experts report that there is little consistent evidence about the effectiveness of caregiver interventions.

A prospective single-blind randomized controlled trial with a three-month follow-up evaluated whether a cognitive–behavioral family intervention, consisting of education, stress management, and coping skills training, was effective in reducing the burden of care among caregivers of persons with AD.³⁶ Caregiver burden was assessed at pretreatment, posttreatment (nine months after trial entry), and three-month follow-up (12 months after trial entry), using measures of psychological distress and depression and general health. The results showed that the intervention resulted in a significant reduction in distress and depression for caregivers and had a positive effect on modifying patient behaviors. Unfortunately, the intervention is lengthy and requires special training for the interventionist.

A study by Chu and colleagues explored providing a 12-week structured support group to Taiwanese caregivers of those with dementia and found that the support group reduced caregivers’ depression but did not have an effect on burden of care.³⁷ Two other studies showed that support groups have a significant effect on depression and decrease caregiver burden and bother.^38,39 Another study of spouses of persons with AD (n = 406) randomly assigned them to either a support and counseling intervention (comprised of six counseling sessions followed by a support group) or to a control group that received routine care.⁴⁰ The authors assessed all participants before and after the intervention using the Geriatric Depression Scale and found significantly fewer symptoms of depression in the intervention group; these effects were sustained for 3.1 years postintervention. They also found that only group interventions based on psychoeducational theory had a positive effect on depression of caregivers. In a subsequent analysis, the researchers concluded that additional studies of psychosocial interventions for caregivers are warranted and should incorporate biological measures of physical health outcomes.⁴¹

Lavretsky, Siddarth, and Irwin conducted the first randomized placebo-controlled double-blind trial of the use of an antidepressant to reduce depression and improve resilience and quality of life among caregivers of persons with dementia.⁴² Their study demonstrated the efficacy of antidepressant therapy for caregiver depression: 86% of caregivers in the intervention group achieved remission, compared to 44% in the placebo group. Caregivers treated with antidepressants reported reduced anxiety, improved resilience, and decreased burden and stress. The authors also found that the level of depression and burden correlate to the severity of the care recipient’s dementia, related disability, and behavioral problems.⁴² However, these findings are limited due to the study’s small sample size (n = 28).

Elliott and colleagues report that depression serves a mediating function between the health of caregivers and their experience of burden.³⁸Mediating variables play an important role in governing the relationship between caregiver burden and the health of the caregiver, while moderating variables change the effect between them when increased or decreased. In the first case, caregiver education would likely mediate burden of care; in the second, caregiver sleep (or lack thereof) would moderate the impact of caregiving on depression.

For caregiver burden
Three areas that cause burden for caregivers are activities of daily living, such as eating, bathing, and toileting; instrumental activities of daily living, encompassing shopping, food preparation, and financial management; and behavior and safety, including falls, fires, and driving.⁴³ Caregivers experience physical symptoms, depression, and feelings of burden when faced with a greater number of tasks, more problematic behaviors, and/or more family disagreements.⁴⁴

The concept of caregiver burden is the focus of many studies, all of them seeking answers for how best to support caregivers caring for a loved one with AD.^37,43,45,46 In a multicenter prospective randomized study conducted in 11 hospital and nonhospital psychiatric outpatient clinics in southern Europe (N = 115), the intervention group participated in eight individual sessions over four months that focused on learning strategies for managing AD patient care.⁴⁶ Data were collected on caregiver stress, quality of life, and perceived health to determine the impact on caregiver burden. The intervention was found to minimize caregiver burden as measured by the ZBI.

Lai and Thomson evaluated a random sample of family caregivers (n = 340) and concluded that providing tangible services and resources should be the first step in reducing burden of care. They report that caregivers’ perceived adequacy of support services predicts caregiver burden. They noted that emotional support results in only marginal benefits.⁴⁵ Other studies have concurred with the finding that support groups provide emotional support, information, and problem-solving skills to caregivers but do not reduce caregiver burden.³¹

For caregivers of those with dementia, the strongest predictor of distress is care recipients’ problem behaviors.²⁶ Some theorize that the distress that caregivers experience has multiple components, including belligerence, lack of cooperation, oppositional behaviors, and disruption of sleep patterns of the care recipient.¹³ Support groups should address behavioral interventions that caregivers can use when faced with the challenging behaviors that often concur with neurocognitive disorders, including confusion, wandering, agitation, crying, swearing, and combativeness.

Caregivers may experience increased stress as their loved one’s dementia progresses. The New York University (NYU) Caregiver Intervention is a long-running randomized controlled study of counseling and support interventions for caregivers of spouses with dementia, conducted by the NYU School of Medicine. Among the array of published analyses of data from this study was a trial reporting that counseling and support interventions reduced the rate of nursing home placement by 28.3%, compared with usual care, and delayed nursing home placement; 61.2% of this delay was attributed to social support, response to patient behaviors, and reduced depression.⁴⁷ Comprehensive counseling and support provided during the progression of AD patients transitioning to institutionalization can be beneficial to spouses and may translate more broadly to caregivers in general.⁴⁸

Equipping caregivers to manage the most difficult aspect of their role should be a priority. Many towns and cities offer day programs for those with memory disorders, allowing for respite for caregivers. Councils on aging are a great resource for service information and specialized programs. For those who meet the income guidelines, there may even be financial support for family caregivers. To seek out services, contact the national Alzheimer’s Association (Alz.org) or a local branch. For information on behavioral interventions, Caregiver.org has many available resources on a variety of topics. (Additional resources are listed in “Caregiving Resources.”)

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Caregivers of Dementia Patients: Mental Health Screening & Support

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