Caregiver Care

 

Am Fam Physician. 2019 Jun 1;99(11):699-706.

  Patient information: See related handout on caregiver care, written by the authors of this article.

Author disclosure: No relevant financial affiliations.

Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Family caregivers serve as a critical extension of the U.S. health care system, and the demand for family caregivers is expected to increase during the next few decades. Caring for loved ones is associated with several benefits, including personal fulfillment; however, caregiving is also associated with physical, psychological, and financial burdens. Family physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments—interviews directed at identifying high levels of burden—as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of the caregiver or the care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local elder care agencies, websites, and respite care. Psychoeducation, skills training, and therapeutic counseling interventions for caregivers have shown small to moderate success by decreasing caregiver burden and increasing caregiver quality of life. Additional research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Support and anticipatory guidance for the caregiver is especially helpful during care transitions and at the care recipient's end of life.

A family caregiver is broadly defined as a friend or relative who provides unpaid assistance for a person with a chronic or disabling condition.1 Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care.2 These caregivers fill an important role for the family and provide a substantial cost savings of an estimated $470 billion nationwide in 2013.3 Family caregivers serve as a critical extension of the U.S. health care system, and supporting this “invisible and isolated army” has emerged as a national public health priority.3,4

WHAT IS NEW ON THIS TOPIC

Caregiver Care

Online interactive programs significantly reduce patient physical symptoms and decrease caregiver burden and depressive symptoms.

In caregivers of people with dementia, a meta-analysis showed that multicomponent interventions (e.g., education, resiliency training, problem solving) can reduce depressive symptoms, improve quality of life, and reduce caregiver burden.

The National Family Caregiver Support Program is the first federally funded program to formally recognize caregivers. However, in 2016, the program received only $150 million in federal funding, approximately one-twentieth of one percent of the estimated value of caregiver contributions to the health system.

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SORT: KEY RECOMMENDATIONS FOR PRACTICE

Clinical recommendationEvidence ratingReferences

All caregivers should be offered assessment to identify high levels of caregiver burden.

C

1, 12, 16

Encouraging caregivers to take a break, take care of their own health, seek preventive health care, join a support group, and seek respite care when needed are key ways that a family physician can provide direct caregiver support.

C

5

Caregivers identified as having unmet educational or informational needs should be directed to appropriate resources for support.

C

1, 6, 13, 16

Psychoeducational, skills training, and therapeutic counseling interventions for caregivers of patients with chronic conditions (e.g., dementia, cancer, stroke, heart failure) have small to moderate success in decreasing caregiver burden and increasing caregiver quality of life.

B

34, 35, 3739

Anticipatory guidance, assistance with advance care planning, and information about appropriate resources should be provided to the care recipient and caregiver during care transitions and at the end of life.

C

36, 37, 43


A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited-quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, go to https://www.aafp.org/afpsort.

SORT: KEY RECOMMENDATIONS FOR PRACTICE

Clinical recommendationEvidence ratingReferences

All caregivers should be offered assessment to identify high levels of caregiver burden.

C

1, 12, 16

Encouraging caregivers to take a break, take care of their own health, seek preventive health care, join a support group, and seek respite care when needed are key ways that a family physician can provide direct caregiver support.

C

5

Caregivers identified as having unmet educational or informational needs should be directed to appropriate resources for support.

C

1, 6, 13, 16

Psychoeducational, skills training, and therapeutic counseling interventions for caregivers of patients with chronic conditions (e.g., dementia, cancer, stroke, heart failure) have small to moderate success in decreasing caregiver burden and increasing caregiver quality of life.

B

34, 35, 3739

Anticipatory guidance, assistance with advance care planning, and information about appropriate resources should be provided to the care recipient and caregiver during care transitions and at the end of life.

C

36, 37, 43


A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited-quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, go to https://www.aafp.org/afpsort.

In the next few decades, the demand for family caregivers is expected to increase.5 This growing demand is attributed to shorter hospital stays, limited hospital discharge planning, and an aging U.S. population. By 2030, one in five adults will be 65 years or older, and a significant number of these older adults will require assistance with instrumental activities of daily living or activities of daily living.5  Table 1 lists common characteristics of care recipients.6

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TABLE 1

Characteristics of Care Recipients

Average age: 69 years

Behavioral problems (7%)

Female (65%)

Hospitalized in past 12 months (53%)

Memory problems (26%)

Need assistance with activities of daily living (59%)

Need assistance with instrumental activities of daily living (99%)


Information from reference 6.

TABLE 1

Characteristics of Care Recipients

Average age: 69 years

Behavioral problems (7%)

Female (65%)

Hospitalized in past 12 months (53%)

Memory problems (26%)

Need assistance with activities of daily living (59%)

Need assistance with instrumental activities of daily living (99%)


Information from reference 6.

Caregiver Burden

Caring for loved ones is associated with several benefits, including personal satisfaction in relieving another's discomfort, feeling useful and needed, and finding more meaning in life. Caregiving is also associated with significant physical, psychological, and financial burden for care providers (Table 2).1,3,612  Stressors associated with caregiving situations are often persistent, uncontrollable, and unpredictable, and one-third of all caregivers describe a high burden of care. Caregivers reporting the highest burden are more likely to be less educated, to live with the care recipient, to provide more than 21 hours of caregiving per week, to care for someone with cognitive impairment or difficult to manage behaviors, and to perceive they had no choice in assuming the caregiver role (Table 3).6 It is less common to have multigenerational family homes in the United States, which may place a more direct burden on one family member. Spousal caregivers are at high risk of caregiver burden, often providing a high number of care hours and assisting with medical tasks, and they are less likely to have additional help.6 Most caregivers report having less time for family and friends, having increased emotional stress, and neglecting self-care, such as healthy sleep, exercise, and dietary habits.5,13

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TABLE 2

Elements of Caregiver Burden

Financial effects6

Increased absenteeism or reduced work hours

Increased self-reported financial strain

Loss of promotional and training opportunities

Loss of salary and benefits

Reduction in retirement savings and Social Security benefits

Health effects

Higher inflammatory burden and other biomarkers of poor health in caregivers for people with dementia7

Higher rates of insomnia and depression8

Higher risk of serious illness9

Increased mortality for spousal caregivers10

Less likely to engage in preventive care10

Subjective sense of worsening health11

Inadequate preparation, knowledge, and skills

Lack of information on how to care for recipient: safety, activities of daily living1,3,12

Lack of information on self-care: coping with stress, finding time for self1,3,12

Lack of information on support services1,3,12


Information from 1, 3, 6 through 12.

TABLE 2

Elements of Caregiver Burden

Financial effects6

Increased absenteeism or reduced work hours

Increased self-reported financial strain

Loss of promotional and training opportunities

Loss of salary and benefits

Reduction in retirement savings and Social Security benefits

Health effects

Higher inflammatory burden and other biomarkers of poor health in caregivers for people with dementia7

Higher rates of insomnia and depression8

Higher risk of serious illness9

Increased mortality for spousal caregivers10

Less likely to engage in preventive care10

Subjective sense of worsening health11

Inadequate preparation, knowledge, and skills

Lack of information on how to care for recipient: safety, activities of daily living1,3,12

Lack of information on self-care: coping with stress, finding time for self1,3,12

Lack of information on support services1,3,12


Information from 1, 3, 6 through 12.

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TABLE 3

Characteristics of Caregivers

Average age: 49 years

Average hours of care provided per week: 24.4

Feel they had no choice in role (50%)

Female (60%)

Help with medical and nursing tasks (57%)

Provide care more than five years (24%)

Provide care more than 21 hours per week (26%)


Information from reference 6.

TABLE 3

Characteristics of Caregivers

Average age: 49 years

Average hours of care provided per week: 24.4

Feel they had no choice in role (50%)

Female (60%)

Help with medical and nursing tasks (57%)

Provide care more than five years (24%)

Provide care more than 21 hours per week (26%)


Information from reference 6.

Caregiver Assessment

Caregiver assessment refers to a systematic, family-centered process of gathering information about a caregiver situation to identify needs and resources. Assessment can be performed by the family physician or other health care team member.1 Ideally, caregivers and care recipients should be interviewed together and separately to allow assessment of confidential information such as elder abuse or caregiver stress.14

Initial assessment may be performed as soon as a person self-identifies as a caregiver. This may include the primary caregiver as well as other family members, friends, or neighbors who consider themselves caregivers. Repeat assessments can be offered as the care recipient's or caregiver's condition changes. These changes may be triggered by the diagnosis of a medical condition associated with high burden (i.e., care requiring more than 21 hours per week), change in functional status of a caregiver or care recipient, or care transitions, and should involve development of a care plan for additional support and resources.12 The National Consensus Development Conference for Caregiver Assessment developed practice guidelines that have been incorporated in the Guided Care model15 and promoted by numerous national organizations.1,12,16,17 See a caregiver assessment table at https://www.caregiver.org/caregivers-count-too-section-3-caregiver-assessment-table for practical in-office questions,16 and the Modified Caregiver Strain Index at https://consultgeri.org/try-this/general-assessment/issue-14.pdf.18 The adapted Zarit Burden Interview is another validated tool that can be used to assess caregiver burden; see appendix at https://bit.ly/2Hso3qt.19

Caregiver Support

Despite many published research trials showing effective interventions, such as multidimensional and psychoeducational interventions,2022 there has been a delay in translating the research into resources that are readily accessible to caregivers. This requires development of best practices, assessment of clinical relevance, and restructuring of reimbursements to allow for sustainability. Until this happens, family physicians can focus on practical, individualized interventions aimed at assisting caregivers.23

Caregivers should be encouraged to take a break, join a support group, and pursue their own interests. They should be encouraged to take care of their own health, including preventive health care, and to seek respite care when needed.5

Family physicians should provide accurate, disease-specific education and resources for obtaining more information1,6,13,16  (Table 4). Online toolkits, such as the AARP's Prepare to Care: A Planning Guide for Families, can be easily accessed and provided during an office visit.24 Caregivers should be offered training in medical tasks and specific care needs with the help of therapists and nurses. Referrals should be made to appropriate resources such as local elder care agencies, home health care services, adult day programs, and meal delivery services.

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TABLE 4

Caregiver Resources

OrganizationWebsiteResources

National organizations

AARP

https://www.aarp.org/caregiving/

Prepare to Care guide, legal and financial information, local resources

American Academy of Family Physicians

https://familydoctor.org/caregiver-stress/

General information on caregiver self-care

Caregiver Action Network

https://caregiveraction.org/

Scenario-specific tips and toolbox, caregiver connections

Family Caregiver Alliance, National Center on Caregiving

https://www.caregiver.org/

Disease- and issue-specific fact and tip sheets, caregiver connections, policy and advocacy information

Mather Lifeways Institute on Aging

https://www.matherlifewaysinstituteonaging.com/category/caregiving/

Caregiver-specific articles, senior housing initiatives

National Institute on Aging

https://www.nia.nih.gov/health/caregiving

Caregiving tips with focus on dementia and older adults

Rosalynn Carter Institute for Caregiving

http://rci.gsw.edu

Caregiver workshops and resources, research

Caregiver education and respite care

Alzheimer's Association and AARP

https://www.communityresourcefinder.org

Programs, resources for housing, caregivers

American Elder Care Research Organization

https://www.payingforseniorcare.com

Resources for paying for care, managing insurance, reducing costs

ARCH National Respite Network and Resource Center

https://archrespite.org/

Respite locator and funding by state

AssistGuide Information Services

http://www.agis.com

Explanation of government resources, Medicare/Medicaid, assistive devices

Caring Today

http://caringtoday.com/blog/

Caregiver blog

Family Caregiver Alliance Camp for Caring

https://www.caregiver.org/camp-caring

Respite camp for caregivers and recipients

Hospice Foundation of America

https://www.hospicefoundation.org

Information about hospice care

United Hospital Fund Next Step in Care

https://www.nextstepincare.org

Focus on helping caregivers with transitions in care, communication with health care teams

U.S. Administration on Aging

https://www.eldercare.gov

Local community resources

U.S. Administration on Aging

https://www.longtermcare.gov

Resources for long-term care placement

Specific caregiving scenarios

Caregiving.com

https://www.caring.com/support-groups/caring-for-a-spouse

Caregiver blog for spouses, topics including finances, intimacy, and managing symptoms

Centers for Disease Control and Prevention

https://www.cdc.gov/ncbddd/disabilityandhealth/family.html

Tips for caregivers of people with disabilities

National Organization for Rare Disorders

https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/

Disease-specific resource for support groups

Parent to Parent

http://www.p2pusa.org/

Resources with local options for families of children who have special needs

U.S. Department of Veterans Affairs

https://www.caregiver.va.gov/

Resource for caregivers, mentoring program, hotlines, access to support coordinator

Well Spouse Association

https://wellspouse.org

Support group locator, national conference, social community

TABLE 4

Caregiver Resources

OrganizationWebsiteResources

National organizations

AARP

https://www.aarp.org/caregiving/

Prepare to Care guide, legal and financial information, local resources

American Academy of Family Physicians

https://familydoctor.org/caregiver-stress/

General information on caregiver self-care

Caregiver Action Network

https://caregiveraction.org/

Scenario-specific tips and toolbox, caregiver connections

Family Caregiver Alliance, National Center on Caregiving

https://www.caregiver.org/

Disease- and issue-specific fact and tip sheets, caregiver connections, policy and advocacy information

Mather Lifeways Institute on Aging

https://www.matherlifewaysinstituteonaging.com/category/caregiving/

Caregiver-specific articles, senior housing initiatives

National Institute on Aging

https://www.nia.nih.gov/health/caregiving

Caregiving tips with focus on dementia and older adults

Rosalynn Carter Institute for Caregiving

http://rci.gsw.edu

Caregiver workshops and resources, research

Caregiver education and respite care

Alzheimer's Association and AARP

https://www.communityresourcefinder.org

Programs, resources for housing, caregivers

American Elder Care Research Organization

https://www.payingforseniorcare.com

Resources for paying for care, managing insurance, reducing costs

ARCH National Respite Network and Resource Center

https://archrespite.org/

Respite locator and funding by state

AssistGuide Information Services

http://www.agis.com

Explanation of government resources, Medicare/Medicaid, assistive devices

Caring Today

http://caringtoday.com/blog/

Caregiver blog

Family Caregiver Alliance Camp for Caring

https://www.caregiver.org/camp-caring

Respite camp for caregivers and recipients

Hospice Foundation of America

https://www.hospicefoundation.org

Information about hospice care

United Hospital Fund Next Step in Care

https://www.nextstepincare.org

Focus on helping caregivers with transitions in care, communication with health care teams

U.S. Administration on Aging

https://www.eldercare.gov

Local community resources

U.S. Administration on Aging

https://www.longtermcare.gov

Resources for long-term care placement

Specific caregiving scenarios

Caregiving.com

https://www.caring.com/support-groups/caring-for-a-spouse

Caregiver blog for spouses, topics including finances, intimacy, and managing symptoms

Centers for Disease Control and Prevention

https://www.cdc.gov/ncbddd/disabilityandhealth/family.html

Tips for caregivers of people with disabilities

National Organization for Rare Disorders

https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/

Disease-specific resource for support groups

Parent to Parent

http://www.p2pusa.org/

Resources with local options for families of children who have special needs

U.S. Department of Veterans Affairs

https://www.caregiver.va.gov/

Resource for caregivers, mentoring program, hotlines, access to support coordinator

Well Spouse Association

https://wellspouse.org

Support group locator, national conference, social community

Family physicians should encourage caregivers to participate in the health care of the recipient. Evidence suggests that when care recipients and caregivers are treated as a dyad, outcomes for both are improved.25 Caregivers often know the most about the needs of the care recipient and can be vital allies in the care management plan. Evidence shows that caregiver involvement and agreement with the care plan increases adherence to recommendations.26

There is strong evidence that early palliative care interventions for patients with serious illness improve quality of life and family satisfaction, and can reduce caregiver burden.27 Family physicians are uniquely positioned to provide primary palliative care, such as facilitating goals of care discussions and advance care planning. Addressing the care recipient's symptoms of chronic illness can improve the caregiver's quality of life and help relieve the caregiver's distress over the recipient's discomfort.28

Caregiver care often necessitates offering innovations in self-management through technology. Family caregivers can now access educational materials as well as connect with other caregivers online.13 Websites and apps are available to schedule tasks and help families coordinate caregivers, meal delivery, and appointments. Wearable technology and remote monitoring systems are expanding and hold promise for improving the lives of caregivers.29 Online interactive programs have shown reductions in patient physical symptoms and in caregiver burden and depressive symptoms.30,31 Advancements in smart home environments allow caregivers to monitor care recipients from remote locations, detecting changes and preventing adverse events in the care recipient.32  Telehealth options are expanding and offer real-time access to health care teams. Table 5 lists apps and services recommended by reputable online resources such as AARP and the National Alliance on Caregiving. Despite potential benefits of new technologies, these innovations may be limited by the ability of caregivers to access and learn how to operate new devices, overcome cost barriers, and avoid the perception of depersonalized care.32

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TABLE 5

Technology and Apps for Caregivers

OrganizationWebsiteResources

General information

AARP

https://www.aarp.org/caregiving/home-care/info-2017/technology-apps-ag.html

Tips for choosing caregiving apps

Family coordination

AARP Caregiving App

https://states.aarp.org/aarp-caregiving-app

Calendar, caregiver coordination

CareZone

https://carezone.com/home

Caregiver coordination health care record keeping, scheduling

Caring Bridge

https://www.caringbridge.org

Calendar, scheduling, forum for updates, fundraising

Caring Village

https://www.caringvillage.com

Calendar, communication, document storage, to-do lists

Evernote

https://evernote.com

Organization, to-do lists

Google Calendar, Google Docs

https://www.google.com

Calendar and shared documents

Lotsa Helping Hands

https://lotsahelpinghands.com

Calendar, forum for updates

Transportation

AARP Transportation Services

https://www.aarp.org/caregiving/home-care/transportation-services/?intcmp=CAR-LRS-R3-C2

General information

Arrive

https://arriverides.com

Links to Uber and Lyft without need for smartphone

GoGoGrandparent

https://gogograndparent.com

Remote monitoring

Blipcare (blood pressure monitoring)

http://www.blipcare.com

Various monitoring tools using wearable devices

eCare 21

https://ecare21.com

GPS SmartSole (trackable shoes)

http://gpssmartsole.com/gpssmartsole

Luna Lights (automated lighting)

https://lunalights.org

SafeinHome (alerts)

http://www.safeinhome.com

Consumer Reports: Medical Alert Systems

https://www.consumerreports.org/medical-alert-systems/how-to-choose-a-medical-alert-system

How to choose medical alert system

Medication management

Medisafe

https://medisafe.com

Medication management, reminders

MyMeds

https://www.my-meds.com

MyMedSchedule

https://secure.medactionplan.com/mymedschedule

Telehealth services

AARP Telehealth Services

https://www.aarp.org/caregiving/health/telehealth-services/?intcmp=CAR-LRS-R3-C1

General information

TABLE 5

Technology and Apps for Caregivers

OrganizationWebsiteResources

General information

AARP

https://www.aarp.org/caregiving/home-care/info-2017/technology-apps-ag.html

Tips for choosing caregiving apps

Family coordination

AARP Caregiving App

https://states.aarp.org/aarp-caregiving-app

Calendar, caregiver coordination

CareZone

https://carezone.com/home

Caregiver coordination health care record keeping, scheduling

Caring Bridge

https://www.caringbridge.org

Calendar, scheduling, forum for updates, fundraising

Caring Village

https://www.caringvillage.com

Calendar, communication, document storage, to-do lists

Evernote

https://evernote.com

Organization, to-do lists

Google Calendar, Google Docs

https://www.google.com

Calendar and shared documents

Lotsa Helping Hands

https://lotsahelpinghands.com

Calendar, forum for updates

Transportation

AARP Transportation Services

https://www.aarp.org/caregiving/home-care/transportation-services/?intcmp=CAR-LRS-R3-C2

General information

Arrive

https://arriverides.com

Links to Uber and Lyft without need for smartphone

GoGoGrandparent

https://gogograndparent.com

Remote monitoring

Blipcare (blood pressure monitoring)

http://www.blipcare.com

Various monitoring tools using wearable devices

eCare 21

https://ecare21.com

GPS SmartSole (trackable shoes)

http://gpssmartsole.com/gpssmartsole

Luna Lights (automated lighting)

https://lunalights.org

SafeinHome (alerts)

http://www.safeinhome.com

Consumer Reports: Medical Alert Systems

https://www.consumerreports.org/medical-alert-systems/how-to-choose-a-medical-alert-system

How to choose medical alert system

Medication management

Medisafe

https://medisafe.com

Medication management, reminders

MyMeds

https://www.my-meds.com

MyMedSchedule

https://secure.medactionplan.com/mymedschedule

Telehealth services

AARP Telehealth Services

https://www.aarp.org/caregiving/health/telehealth-services/?intcmp=CAR-LRS-R3-C1

General information

Specialized Caregiving

CANCER

Changes in health care and insurance reimbursement have led to much of cancer care being provided at home, with the family assuming more responsibilities.33 A 2017 meta-analysis found that psychoeducational interventions were the most common intervention researched; however, they often require significant time, making them hard to translate to clinical practice.34 Pain management skills and symptoms assessment are the largest caregiver needs.34 A 2015 study found that interdisciplinary palliative care interventions such as educational sessions and self-care plans improved caregivers' social well-being scores, lowered psychological distress scores, and significantly reduced caregiver burden.35 Continued research with a focus on palliative care interventions, the effect on caregivers, and ways to increase the availability of these services is needed.

DEMENTIA

Caregiving for a person with dementia is associated with high levels of strain caused by associated behavior disturbances, intense physical tasks, and the need for constant vigilance. High caregiver strain has been identified as a predictor of long-term care placement in these patients; therefore, family physicians should identify caregivers early and provide support.36 Fact sheets available from Family Caregiver Alliance are free, easy to download, and provide practical guidance on topics such as understanding and managing dementia behaviors, controlling frustration, self-care, and end-of-life decision-making.1

Evidence to support caregiver interventions in this subgroup is fairly robust.3739 Structured education provided in home and telephone-based sessions to improve caregiver coping skills and management of behaviors have decreased caregiver burden and improved quality of life for the caregiver and care recipient.37 A meta-analysis showed that multicomponent interventions (e.g., education, resiliency training, problem solving) can reduce depressive symptoms, improve quality of life, and reduce caregiver burden.38 Interventions are cost saving or cost neutral by helping to keep care recipients in the community longer.39 Additional resources are needed to translate these interventions into opportunities accessible to all caregivers.

HEART FAILURE

Caregivers of patients with heart failure report similar issues as those caring for patients with other chronic illnesses.40 The most burdensome aspects of care are enforcing dietary restrictions and monitoring for signs and symptoms of heart failure.40,41 Care recipients with heart failure may have frequent exacerbations requiring hospitalization and a more uncertain clinical trajectory that can increase caregiver strain. During the past decade, there have been significant advances in the availability of advanced heart failure therapies (e.g., left ventricular assist devices, inotropic medications) that can lower hospitalization and mortality rates. Availability of these therapies may increase life expectancy, but often leave care recipients with a higher degree of functional disability, thereby increasing the burden of caregiving.42 Overall, few interventions have been thoroughly studied to effectively support caregivers of patients with heart failure.43 Given the high level of symptom monitoring, caregiver burden, and uncertainty in disease trajectory, many experts are calling for earlier and concurrent involvement of palliative care with the goal of improving caregiver education and confidence, assistance with management of symptoms, and skilled advanced care planning.43

STROKE

Stroke is the leading cause of serious long-term disability, and most stroke survivors return home.44 These care recipients often require significant assistance with activities of daily living and instrumental activities of daily living.44 A review of caregiver interventions shows that those with a focus on dyad interventions may help survivor outcomes; however, interventions targeted specifically toward caregivers are needed to improve caregiver outcomes.45 Skill-building interventions (e.g., problem solving, tips for communicating with health care professionals, strategies for lifting) were more effective at improving caregiver outcomes than providing information about the diagnosis alone.45 Appropriate referrals to home health care, skilled therapy, and respite care should be offered by the family physician in addition to options for home modifications.

TRANSITIONS IN CARE

Many caregivers experience a decrease in depressive symptoms after the death of a care recipient, which may mark the end of the care recipient's discomfort. The placement of a care recipient into a long-term care facility is not associated with positive effects on the caregiver and may be accompanied by an increase in caregiver anxiety.46 This implies that the relief of the daily caregiving burden does not account for the reduction in depressive symptoms in bereaved caregivers. To ease these care transitions, family physicians should provide anticipatory guidance, assistance with advance care planning, and appropriate resources for respite, long-term, and end-of-life care.36,37,43 It may be more useful to intensify resources and support in the time preceding death rather than afterwards.47

Public Policy

Providing optimal care for the patient and caregiver mandates an understanding of financial reimbursement strategies. The Family and Medical Leave Act allows qualified employees to take up to 12 weeks of continuous or intermittent unpaid leave to provide care. The United States is one of the few developed economies that does not offer mandatory paid leave, a topic that has emerged as a new public policy interest. The National Family Caregiver Support Program was the first federally funded program to formally recognize caregivers. However, in 2016, the program received only $150 million in federal funding, approximately one-twentieth of one percent of the value of caregiver contributions.47 Consumer-, participant-, and self-directed care programs are now available in nearly every state, allowing informal caregivers, such as a spouse or other family member, to be paid for the services they provide. Most programs are based on Medicaid home- and community-based service waiver programs that provide in-home assistance for nursing home–eligible care recipients who qualify for Medicaid services. However, options have expanded to include non-Medicaid programs, veterans' programs, life insurance, and long-term care insurance to allow family members to be paid caregivers.48

This article updates previous articles on this topic by Parks and Novielli,49 and by the authors.50

Data Sources: A PubMed search was completed using Clinical Queries and the key terms caregiver, burden, and stress. The search included meta-analyses, randomized controlled trials, clinical trials, and reviews. Also searched were the Agency for Healthcare Research and Quality evidence reports, Clinical Evidence, the Cochrane database, and the Institute for Clinical Systems Improvement. Search dates: February 15, 2018, and January 2, 2019.

The Authors

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KRISTINE SWARTZ, MD, is an assistant professor in the Department of Family and Community Medicine at Thomas Jefferson University, Philadelphia, Pa....

LAUREN G. COLLINS, MD, is a Josiah Macy Jr. Foundation Faculty Scholar and an associate professor in the Department of Family and Community Medicine at Thomas Jefferson University.

Address correspondence to Kristine Swartz, MD, Thomas Jefferson University, 1015 Walnut St., Ste. 401, Philadelphia, PA 19107 (e-mail: kristine.swartz@jefferson.edu). Reprints are not available from the authors.

Author disclosure: No relevant financial affiliations.

References

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1. Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. Volume 1. April 2006. https://www.caregiver.org/caregiver/jsp/content/pdfs/v1_consensus.pdf. Accessed February 11, 2018....

2. U.S. Institute of Medicine; Committee on the Future Health Care Work-force for Older Americans. Retooling for an Aging America: Building the Health Care Workforce. Washington, DC.: National Academies Press; 2008.

3. Reinhard SC, Feinberg LF, Choula R, Houser A. Valuing the invaluable: 2015 update. AARP Public Policy Institute. July 2015. https://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf. Accessed February 15, 2018.

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