Coping strategies among caregivers of people with Alzheimer disease: a systematic review

Monteiro, Alexandre Magno Frota; Santos, Raquel Luiza; Kimura, Nathália; Baptista, Maria Alice Tourinho; Dourado, Marcia Cristina Nascimento

doi:10.1590/2237-6089-2017-0065

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Review Article • Trends Psychiatry Psychother. 40 (3) • Jul-Sep 2018 • https://doi.org/10.1590/2237-6089-2017-0065 copy

Coping strategies among caregivers of people with Alzheimer disease: a systematic review

Estratégias de coping entre cuidadores de pessoas com doença de Alzheimer: uma revisão sistemática

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Introduction

Caregivers of people with Alzheimer disease (PwAD) report significant stress, burden and depression compared to caregivers of people with other dementias, especially when neuropsychiatric symptoms are prominent. Adequate coping strategies can modify the impact of stressful situations and increase the caregivers’ quality of life.

Objective

To systematically review the different coping strategies used by caregivers of PwAD to manage neuropsychiatric symptoms.

Method

We carried out electronic searches using MEDLINE (PubMed), SciELO, Web of Knowledge Cross Search (Thomson Scientific/ISI Web Services) and PsycINFO databases to select studies on coping in PwAD caregivers published from January 2005 to July 2017. The search terms were coping, caregivers, strategy, onset, adaptation, family, behavior, dementia and Alzheimer. The studies were organized in three categories: problem-focused, emotion-focused and dysfunctional coping strategies.

Results

We found 2,277 articles. After application of exclusion criteria and exclusion of redundant references, 24 articles were analyzed. Emotion-focused coping was the most commonly used strategy among PwAD caregivers. The use of this strategy associated with religion and spirituality may help reduce symptoms of depression and anxiety. Problem-focused coping strategies were mostly used with active coping interventions. Problem-solving coping may have buffered the impact of acute psychological stressors on procoagulant activity. Dysfunctional coping strategies were associated with increase of caregiver burden.

Conclusion

The evaluated studies showed that the use and development of coping strategies may have ameliorated the depressive symptoms, anxiety and burden of caregivers. However, longitudinal studies are still needed that clearly describe the type of coping strategy used in relation to the presented results.

Alzheimer disease; coping strategies; depression; caregivers

Study	Sample	Design	Instruments	Objectives	Intervention	Results
Geiger et al.²¹	N = 138 male AD caregivers	Cross-sectional	CITS ZBI RMBPC	Examine the effects of coping strategies focused on task, emotion and avoidance, overload of male caregivers of AD patients.	3 coping strategies: problem-focused, emotion-focused, and dysfunctional.	Task focused on the highest reported coping strategy. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden.
Raggi, et al.²⁸	N = 73 AD primary caregiver	Cross-sectional	PwAD: CDR, GDS, ADL, NPI, CIRS Caregivers: CBI, NPI	Determine the severity of caregiver burden in relation to cognitive, behavioral, functional, mood, mobility, and comorbidity status of patients; investigate coping strategies for caregivers according to their distress; and assess psychosocial and medical variables related to caregiver burden.	Problem-focused coping strategies.	The severity of caregiver distress was correlated with specific coping strategies, such as seeking for social support, using avoidance behaviors and focusing on problems.
Li, et al.⁷	N = 260 family carers of PwD	Randomized	START HADS BRCOPE	Test the hypothesis that increased emotion-focused coping at 4 months would mediate the effects of the START intervention in reducing psychological morbidity symptoms at 8 months; and test whether this mechanism was moderated by baseline morbidity.	Emotion-focused coping strategies. Eight-session START intervention. The intervention was based on the stress appraisal and coping model. Treatment-as-usual.	The strategies brought psychological benefits to morbidity in different mechanisms of action. The more psychologically distressed caregivers increased their emotion-focused coping strategy and did not diminish their dysfunctional coping, while others improved burnout through this mechanism.
Williams et al.²⁷	N = 13 caregivers of people with either stroke (n = 5) or dementia (n = 8)	Cross-sectional	Semi-structured interviews	Explore coping strategies that caregivers use to care for the elderly.	Problem-focused coping strategies. Use of photographs that caregivers took exemplifying their caregiving experiences to elicit their description of how they made sense of caregiving.	Caregivers adopted active and information seeking techniques to deal with current problems and to increase their sense of control, but avoidant techniques when considering future logistics of caregiving and when feeling helpless due to the burden they faced.
Sun & Hodge²²	N = 209 Latino caregivers included with parents in USA	Cross-sectional	REACH MMSE IADL ADL ZBI CES-D	Examine the effects of spirituality and religion on depression in a sample of Latino AD caregivers.	Emotion-focused coping strategies.	The findings indicate that church attendance moderates the relationship between subjective forms of stress and depression in tandem with exhibiting direct effects on depression.
Tschanz et al.³³	N = 226 persons with dementia and their caregivers assessed semi-annually for up to 6 years	Longitudinal	WCCL-R MMSE CDR	Examine whether caregiver coping strategies predict dementia progression in a population-based sample.	Problem-focused coping strategies.	Caregiver coping strategies are associated with slower dementia progression.
Livingston et al.²⁵	N = 260 carers of family members with dementia	Cross-sectional	HADS QOL-AD CTS2 NPI CDR BRCOPE START	Assess whether a manual-based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia.	Emotion-focused coping strategies. A manual-based coping strategy program can be delivered by graduate psychologists without clinical training.	Mean total scores on HADS were lower in the intervention group than in the treatment as usual group over the 8-month evaluation period.
Alma et al.¹⁴	N = 11 caregivers	Cross-sectional	Semi-structured interviews	Explore the possible differences in social support for coping mechanisms and help-seeking behaviors in Chinese caregivers.	Emotion-focused coping strategies and problem-focused coping strategies; coping strategies focused on self-regulation, patient and family obligations.	Different standards of flexibility in handling and seeking social support to care.
García-Alberca et al.²⁴	N = 80 patients with AD and their primary caregivers.	Cross-sectional	Patients: MMSE, B-ADL, GDTS, NPI Caregivers: ZBI, BDI, STAI, CSI	Determine whether caregiver coping strategies are independently associated with BPS in AD after accounting for patient characteristics.	Two coping strategies: task-focused, emotion-focused	Coping strategies are associated with BPS regardless of patient characteristics. Interventions to reduce BPS should focus on which psychological coping strategies caregivers use.
Bruvik et al.³¹	N = 230	Randomized	RSS NPI PSMS IADL MMSE GDS	Investigate the association between coping, care of local extent and burden of family caregivers of PwAD.	Problem-solving coping strategies method in steps: 1) definition of a problem, as concrete as possible; 2) brainstorming, all proposals to be recorded; 3) discussing the proposed solutions, pros and cons; 4) choosing a solution or a combination of solutions	The trial did not show a significant difference between usual care and the intervention on depressive symptoms in PwAD or their family caregivers.
Merritt & McCallum¹⁷	N = 78 30 African-American female dementia caregivers and 48 African-American non-caregivers	Cross-sectional	RCOPE IADL RMBPC SSD	Examine the moderating role of religious coping (positive, negative, and combined) in the connection of care recipient functional status with diurnal salivary cortisol patterns among dementia family caregivers.	Emotion-focused coping strategies. Five saliva samples were collected daily (at awakening, 9am, 12pm, 5pm, and 9pm) for two straight days.	The RCOPE by RMBPC interaction was significant. Among caregivers who showed higher RMBPC scores, higher combined and positive (but not negative) RCOPE scores were unexpectedly associated with increasingly flatter cortisol slopes.
García-Alberca et al.¹²	N = 80 patients and caregivers	Cross-sectional	Patients: MMSE, B-ADL, GDTS, NPI Caregivers: ZBI, BDI, STAI, CSI	Investigate the relationship between anxiety and depression, and engagement and disengagement coping strategies, in caregivers of PwAD in an epidemiological population.	Two coping strategies: emotion-focused coping strategies and problem-focused coping strategies.	Coping strategies were associated with BPS regardless of patient characteristics. Interventions to reduce BPS should focus on which psychological coping strategies caregivers use.
Lim et al.¹⁶	N = 107 Asian family caregivers of persons with dementia in Singapore	Cross-sectional	Demographic questionnaire RMBPC ZBI BRCOPE SBI-15R DMSS PAC	Examine the factors associated with negative and positive adjustment outcomes among Asian family caregivers of persons with dementia in Singapore.	Emotion-focused coping strategies and problem-focused coping strategies. Coping styles, management strategies in dementia, religion and spirituality, adjustment problems.	Religion and spirituality gained indirectly through the use of encouragement. Caregivers should aim coping strategies to improve care outcomes for patients.
Rabinowitz et al.¹⁸	N = 256 Latina and Caucasian female caregivers of elderly relatives with dementia	Cross-sectional	MMSE ADL IADL REACH RMBPC BRCOPE	Primary analyses examined the relationship between religious coping (both positive and negative) and an overall index of cumulative health risk. Secondary analyses were conducted on individual health behaviors subsumed in the broader index.	Emotion-focused coping strategies. Caregivers were asked to answer questions about religious coping strategies, religion and their own health.	Findings revealed that negative religious coping was significantly associated with increased cumulative health risk. Positive religious coping was predictive of decreased cumulative health risk among Latina caregivers but not among Caucasians. Negative religious coping was significantly associated with both an increased likelihood for weight gain and increased dietary restriction. Positive religious coping was associated with decreased likelihood for weight gain in Latinas.
Williams et al.³⁰	N = 116 caregivers 59 VCS 57 wait list group	Randomized	Demographic questionnaire PSS STAI STAXI CES-D CMHS CGSE PSQI Biomarkers: BP, HR, SC	Determine whether VCS training with telephone coaching reduces psychosocial and biological markers of distress in primary caregivers of a relative with ADRD	Emotion-focused coping strategies. Video adapted for ADRD family care contexts; exercises and homework for each module presented in an accompanying workbook; and one telephone coaching call per week for five weeks on each week’s two modules.	Compared to controls, participants who received VCS training plus telephone coaching showed significantly greater improvements in depressive symptoms, trait anxiety, perceived stress, and average systolic and diastolic blood pressure that were maintained over the 6-month follow-up period.
Tan & Schneider¹⁹	N = 6 young adult-child caregivers of PwAD	Cross-sectional	BCHUAT	Understand the experiences of young adult-child caregivers, with a key focus on the use of humor as a coping strategy in this caregiving circumstance.	Emotion-focused coping strategies. Interview with caregivers.	Use of humor as a coping strategy prevented caregiver burnout and optimized patient care.
Di Mattei et al.⁴	N = 112 primary caregivers	Cross-sectional	CBI, COPE	Investigate which sociodemographic and clinical variables are significantly associated with higher levels of distress in caregivers, and the relationship between caregiver levels of distress and the coping strategies they adopt.	Problem-focused coping strategies. Social support, avoidance coping, positive attitude, focus on problem, religion	Caregivers with the highest levels of distress were characterized by an impaired physical health status. Avoidance coping may represent a risk factor associated with higher levels of distress. Active and problem-focused approach to stressful situations may act as a protective factor.
Cooper et al.³²	N = 93 patients and caregivers	Longitudinal	Patients: HADS, ZBI, BRCOPE, SRRS, HSQ-12, QOL-AD Caregivers: MMSE, ADAS-Cog, ADCS-ADL, NPI	Investigate the impact of coping on the psychological morbidity of caregivers of people with dementia.	Two coping strategies: problem-focused, emotion-focused.	Using emotion-focused coping strategies in response to caregiver burden seemed to protect caregivers from developing higher anxiety levels a year later; however, using problem-focused strategies did not.
Chun et al.¹⁵	N = 171 caregivers 64 Koreans residing in Korea, 53 Korean-Americans and 54 White-Americans living in the USA	Cross-sectional	Sociodemographic questionnaire RMBPC STAI CES-D ZBI	Compare models of emotional distress on three groups of caregivers of patients with dementia: Korean residents in Korea, White-Americans and Korean-Americans residing in the USA.	Emotion-focused coping strategies. Caregivers were interviewed using structured questionnaires.	Patients with disruptive behavior lead to caregiver burden and cause anxiety and depression. Emotional support is important for Korean-Americans.
Riedijk et al.²⁰	29 FTD 90 AD 34 caregivers of institutionalized FTD	Cross-sectional	MAASBED NPI HQoL UCL	Compare private caregivers and caregivers of institutionalized elderly and to differentiate FTD caregiver burden from AD caregiver burden.	Emotion-focused coping strategies.	Caregivers of FTD patients institutionalized after shorter dementia duration were most burdened and affected in their HQoL. Overall, passive coping strategies were associated with increased burden and decreased HQoL.
Cooper et al.²³	N = 126 family caregivers	Cross-sectional	Sociodemographic questionnaire HADS BRCOPE	Evaluate anxiety in caregivers of PwAD and the relationship with coping strategies.	Three coping strategies: problem-focused, emotion-focused, and dysfunctional-focused.	Anxiety is more likely in caregivers who do not use coping strategies.
Aschbacher et al.²⁶	60 caregivers and 33 non-caregivers control group	Cross-sectional	WAYS-R SP HAM-D HARS PPS WOC	Assess 1) whether coping processes affect hemostatic reactivity to acute psychological stress, and 2) if these effects differ substantially between caregivers and non-caregivers.	Problem-focused coping strategies. The marker hypercoagulable D-dimer was measured at three time points: baseline, post-speech immediately, and during recovery (15 minutes post-speech).	Reduction of D-dimer levels at all points. Caregivers with low levels of PPS showed greater increase in baseline D-dimer than the control group.
Mausbach, et al.¹³	N = 95 spousal caregivers	Cross-sectional	Demographic questionnaire CDR IMED HDRS BDI WAYS-R BSI	Test a mediational model of the associations between patient problem behaviors, escape-avoidance coping, and depressive symptoms in AD caregivers.	Dysfunctional coping strategies. Caregivers were asked to answer questions about themselves and about patients.	Escape-avoidance coping partially mediates the association between patient problem behaviors and depressive symptoms among elderly caregivers of spouses with dementia.

AD = Alzheimer disease; ADAS-Cog = Alzheimer’s Disease Assessment Scale – Cognition; ADCS-ADL = Alzheimer’s Disease Cooperative Study Inventory – Activities of Daily Living; ADL = activities of daily living; ADRD = Alzheimer disease or related dementia; B-ADL = Bayer Activities of Daily Living Scale; BCHUAT = Buffum Caregiver Humor use Assessment Tool; BDI = Beck Depression Inventory; BP = blood pressure; BPS = behavioral and psychological symptoms; BRCOPE = Brief Religious Coping Scale; BSI = Brief Symptom Inventory; CBI = Caregiver Burden Inventory; CDR = Clinical Dementia Rating; CES-D = Center for Epidemiologic Studies Depression Scale; CGSE = Revised Scale for Caregiving Self-Efficacy; CIRS = Cumulative Illness Rate Scale; CITS = Coping Inventory for Task Stressors; CJCS-R = Cultural Justiﬁcations for Caregiving Scale – Revised; CMHS = Cook-Medley Hostility Scale; COPE = Coping Orientation to Problem Experienced; CSI = Coping Strategies Inventory; CTS2 = Revised Conflict Tactics Scales; DMSS = Dementia Management Strategies Scale; FTD = frontotemporal dementia; GDS = Geriatric Depression Scale; GDTS = Global Deterioration Scale; HADS = Hospital Anxiety and Depression Scale; HAM-D = Hamilton Rating Scale for Depression; HARS = Hamilton Anxiety Rating Scale; HDRS = Hamilton Depression Rating Scale; HQoL = health-related quality of life; HR = heart rate; HSQ-12 = Health Status Questionnaire; IADL = instrumental activities of daily living; IMED = interim medical history questionnaire; MAASBED = Maastricht Study of Behavior in Dementia; MMSE = Mini Mental State Exam; NPI = Neuropsychiatric Inventory; PAC = Positive Aspects of Caregiving; POMS = Profile of Mood States; PPS = planful problem solving; PSMS = Physical Self-Maintenance Scale; PSQI = Pittsburgh Sleep Quality Index; PSS = Perceived Stress Scale; PwAD = People with Alzheimer disease; PwD = People with dementia; QOL-AD = Quality of Life in Alzheimer’s Disease; RCOPE = Religious Coping Scale; REACH = Resource for Enhancing Alzheimer’s Caregivers Health; RMBPC = Revised Memory and Behavior Checklist; RRS = Ruminative Responses Scale; RSS = Relative Stress Scale; SBI-15R = Systems of Belief Inventory-15R; SC = salivary cortisol; SP = stress protocol; SRRS = Social Readjustment Rating Scale; SSD = saliva samples daily; STAEI = State-Trait Anger Expression Inventory; STAI = State-Trait Anxiety Inventory; START = Strategies for RelaTives; STAXI = State-Trait Anger Inventory; TMMS-24 = Trait Meta-Mood Scale; UCL = Utrecht Coping List; VCS = video-based coping skills; WAYS-R = Revised Ways of Coping; WCCL-R = Ways of Coping Checklist-Revised; WOC = Ways of Coping; ZBI = Zarit Burden Inventory.

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[1] Correspondence: Alexandre Magno Frota Monteiro. Rua João Lira, 66, 22430-210 - Rio de Janeiro, RJ - Brazil Tel.: +55 (21) 982046913 E-mail: alexandre@centronati.com