EVIDENCE-BASED CARESHEET

AuthorsLaura McLuckey, MSW, LCSW

Cinahl Information Systems, Glendale, CA

Jennifer Teska, MSWCinahl Information Systems, Glendale, CA

ReviewerLynn B. Cooper, D. Criminology

Cinahl Information Systems, Glendale, CA

January 1, 2016

Published by Cinahl Information Systems, a division of EBSCO Information Services. Copyright©2017, Cinahl Information Systems. All rightsreserved. No part of this may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or byany information storage and retrieval system, without permission in writing from the publisher. Cinahl Information Systems accepts no liability for adviceor information given herein or errors/omissions in the text. It is merely intended as a general informational overview of the subject for the healthcareprofessional. Cinahl Information Systems, 1509 Wilson Terrace, Glendale, CA 91206

Alzheimer's Disease: Support for Caregivers

What We Know› The global prevalence of Alzheimer’s disease (AD) is rapidly increasing. By 2010, there

were an estimated 35.6 million people worldwide with dementia, a number projected toincrease to over 115 million by the year 2050(37)

› Alzheimer’s diseaseaccounts for 60–80% of those with dementia.In 2015, the Alzheimer’sAssociation estimated that 5.3 million people in the United States have AD, and over15 million people, primarily family members, served as unpaid caregivers (CGs) forindividuals with AD(32)

› In recognition that excessive CG burden can affect not only the individual receiving carebut also the CGs’ quality of life (QOL), increasing attention has been drawn to the needsof nonprofessional CGs, or individuals who care for disabled individuals(16,18,22)

› Care of individuals with AD often is provided in the home by their spouses/partners,grown children, other relatives, or friends. Individuals with AD often require extensiveassistance, including help carrying out activities of daily living (e.g., managing householdchores and finances, transportation, mobility, bathing, toileting, dressing,feeding);assistance with following treatment recommendations and medication regimens;supervision and management of behavioral manifestations (e.g., wandering, nighttimedisturbances, aggression); and arranging for support groups, day programs, in-home care,and out-of-home placement. They also tend to receive care from their nonprofessional CGfor a longer duration than older individuals with other conditions(32)

› The process of caring for individuals with AD is demanding, and the burden associatedwith caregiving may significantly impair the health of the CG, especially when both theCG and the individual with AD are older adults(1,7,9,11,12,13,14,17,18,19,25,26,30,32)

• A particularly difficult aspect of providing care to individuals with AD is the burdenassociated with the neuropsychiatric symptoms that occur during the course of thedisease (e.g., agitation, delusions, hallucinations, depression, anxiety, irritability,aggression, sleep disorders). The behavioral and psychological symptoms tend tofollow a trajectory of increasing severity over time, a feature they have in common withcognitive and functional decline(3,10,22,30)

–The patient’s cognitive decline increases the level of assistance required for activitiesof daily living and increases the burden on the CG(3,6,30)

• Spousal CGs may go from mourning the change in their marital relationship, sacrificingself-care, reclaiming self-care, and relinquishing the mindset of “couplehood” tolearning to become a CG and accepting help from others while caring for their spouses/partners with AD(7)

–Spousal CGs often forsake friendships and self-careactivities (e.g., hobbies, exercise,healthcare appointments) to care for their spouse/partner with AD

• The “sandwich generation” (those who must juggle the responsibility of meeting theneeds of children and older parents) has difficulty balancing caregiver responsibilitieswith the demands and need for interaction with spouses and children, which oftencreates feelings of neglect and inequity in the home(5)

• The burden of caregiving varies between individuals. Investigators in an Italian studyfound that time restrictions and the physical toll of caregiving were greater concerns

among older CGs, and unfulfilled goals and opportunities were a greater concern amongfemale CGs(33)

• CGs of individuals with AD often experience worry, anxiety, frustration, depression, fatigue, and poor health associatedwith chronic stress(11,12,13,17,18,19,25,26)

–Researchers in a study conducted in China found that higher educational levels were associated with better health-relatedQOL and fewer depression symptoms in CGs, while older CGs and those caring for individuals with more severedementia had poorer health-related QOL(34)

–Factors associated with an increase in CG burden, which can be emotional, physical, and/or financial, include difficultyobtaining a diagnosis, acting as an advocate for the individual with AD, perceived lack of social support, reduced abilityto work, out-of-pocket expenditure (e.g., money for copays, household help, respite care), worries and uncertainties,exhaustion, balancing multiple demands, stresses of caring, loneliness, loss of freedom, and anxiety about one’sown aging. Admission of a spouse/partner to a skilled nursing facility (SNF) is associated with a decrease in CGburden(2,9,11,27,28)

- Long-term placement of the individual with AD is associated with significant reduction in depression symptoms inCGs, which is attributed in part to having less restriction of social and recreational activities, and an increased sense ofpersonal mastery(35)

- The caregiving burden does not end with nursing home placement, however, as the CG continues with bill paying,insurance requirements, coordination of appointments, and ensuring proper care is being provided(8)

–Factors associated with depression in CGs of individuals with AD include social embarrassment (i.e., embarrassment dueto inappropriate behavior by the patient in social settings), perceived duty to provide care, poor health of the CG, anxietyabout one’s own aging, low income, and caring for a person with severe AD-related behavioral problems(6,11,12,13,19,25)

- CG depression typically improves after SNF admission or, if the patient was being cared for at home, death of thepatient(9)

› Although CGs face numerous challenges in providing care and assistance to individuals with AD, there has been a great dealof research exploring which resources are most helpful for CGs(1)

• Substitute care providers (e.g., respite care staff) can be helpful if CGs perceive them to be trustworthy(7)

• Financial assistance for obtaining support services (e.g., respite care) has been shown to increase support service usage andsupport group attendance, as well as reduce CG depression (26)

• Support group attendance provides emotional support and offers a sounding board and increased understanding of the signsand symptoms of the disease(29)

• Multicomponent programs which utilize multiple interventions may have benefits for CGs as well as for individuals withAD(36)

–Researchers studying the effects of a multicomponent program in the United States report that in addition todemonstrating positive outcomes for individuals with dementia, interventions such as exercise, behavior management,and education regarding dementia are linked with improved CG efficacy in providing care, and reduced physical healthand relationship strain among CGs

• CG training has been shown to be helpful: the more skilled the CG and the higher the CG’s level of self-efficacy, the moreeffective he or she was in providing care to the person with AD and taking care of his or her own physical and emotionalhealth(4,17,26,29)

• Counseling in a variety of formats has been shown to be helpful(3,25)

–Counseling and support group attendance by spousal CGs of a patient with AD continue to provide benefit after thepatient’s death

–Researchers in a Brazilian study report that psychoeducational groups can reduce neuropsychiatric symptoms among CGsand that cognitive-behavioral group therapy (CBT) was associated with a reduction in physiological effects of stress(31)

What We Can Do› Learn about the specific or unique challenges faced by individual CGs in order to better evaluate their needs and provide

support; share this information with our colleagues› Develop an awareness of our own cultural values, beliefs, and biases, and develop knowledge about the histories, traditions,

and values of our clients. Adopt treatment methodologies that reflect the cultural needs of the client(15,21,23)

› Share knowledge and collaborate with CGs to develop goals and strategies for improving CG self-care, reducing the risk ofdepression, and providing resources for assistance in caring for the person with AD(5)

› Develop a continuum of services for the CG at all stages of the disease, especially in the early stages when information andcoping skills are most critical

› Assist CGs in addressing grief and loss feelings that arise with their loved one’s decline; be empathic and validate CGfeelings(20,24)

› Assess CGs’ stressors and dysfunctional coping strategies and tailor interventions to their individual needs(33)

› Recognize the link between the well-being of CGs and care recipients. Assess CGs for depression and request a referral to amental health clinician, if indicated(18,26)

› Encourage CGs to find balance by setting limits on caregiving, creating routines for themselves and the care recipient, andsetting aside time to get away and relax(6,7)

› Encourage CGs to obtain more information about AD and provide them with a list of online resources(1,26)

• Alzheimer’s Association (http://www.alz.org)(1,26)

• Alzheimer’s and Dementia Caregiver Center (https://www.alz.org/care/alzheimers-dementia-support-groups.asp)• Alzheimer’s Disease International (http://www.alz.co.uk)• Alzheimer’s Society (http://www.alzheimers.org.uk)(1)

• Family Caregiver Alliance (http://www.caregiver.org)(1)

• National Institute on Aging (http://www.nia.nih.gov/alzheimers)(1)

• WebMD: Alzheimer’s Disease Health Center (http://www.webmd.com/alzheimers/guide/alzheimers-dementia)(1)

Coding MatrixReferences are rated using the following codes, listed in order of strength:

M Published meta-analysis

SR Published systematic or integrative literature review

RCT Published research (randomized controlled trial)

R Published research (not randomized controlled trial)

C Case histories, case studies

G Published guidelines

RV Published review of the literature

RU Published research utilization report

QI Published quality improvement report

L Legislation

PGR Published government report

PFR Published funded report

PP Policies, procedures, protocols

X Practice exemplars, stories, opinions

GI General or background information/texts/reports

U Unpublished research, reviews, poster presentations orother such materials

CP Conference proceedings, abstracts, presentation

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