Break Out Session
In groups of 2 to 3, share -
Experience of Caregiving
Condition of Care recipient:
e.g. Cancer / Stroke / Dementia
Relationship to the care recipient:
Spouse / Children / Grandchildren / Niece / Nephew/ Others
Years of care-giving: ___years
Feelings
e.g. Tired / Angry / Helplessness / Guilty / Resentful / Bitter / Frustrated / Lonely / Overwhelmed etc.
Impact
E.gs.
- Decline in Health
- Poorer Relationship with other family members
- Financial Strain
- Neglecting other family members
- Etc.
Coping Strategy
E.gs.
- Spreading Responsibility
- Sharing with friends
- Support Group
- Setting aside "me" time
- Etc.
Perspectives
What can we do? How can we help?
Physician Role
Our duties...
Primary care 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 caregiver or care recipient.
Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life.
Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.
•LAUREN G. COLLINS, MD, and KRISTINE SWARTZ, MD, Jefferson Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania
•Am Fam Physician. 2011 Jun 1;83(11):1309-1317.
Supporting Caregivers
Support, Support, Support!
- Encouraging caregivers to take breaks, take care of their own health, maintain a healthy diet, exercise, seek preventive health care, join a support group, and locate respite care when needed are key ways to provide direct caregiver support.
- Physicians can also identify coping strategies, such as praying (73 percent), talking with friends and family (61 percent), and obtaining additional information from books or Web sites (44 percent).
- Caregivers identified as having unmet educational and informational needs should be directed to appropriate resources, such as national care giving organizations, Web sites for additional training, and respite care services.
- Practical online resource locators (e.g., Eldercare Locator, Family Care Navigator) and online toolkit, such as a planning guide from the AARP can be easily accessed and provided during an office visit.
Caregiver Studies
What did the research shows?
- Evidence suggests that when patients and caregivers are treated as a dyad, outcomes for both are improved.
- Recent research has identified a number of successful models of caregiver interventions. These interventions come in a variety of formats, from universal, community-based interventions to illness-specific, individualized interventions.
- In a meta-analysis of 78 caregiver interventions targeting caregivers of older adults, psychoeducational and psychotherapeutic interventions had the most consistent effects on all outcome measures.
- Studies about caregivers of persons with dementia and other chronic illnesses have demonstrated significant effect sizes from caregiver interventions.
- A 2010 meta-analysis that included 29 randomized controlled trials (RCTs) of interventions designed to support caregivers of patients with cancer found that psychoeducational, skills-training, and therapeutic counseling interventions reduced caregiver burden and increased caregiver self-efficacy, quality of life, and coping skills with small to moderate effect sizes.
However, these interventions did not reduce caregiver depression
Caregiver Intervention and Innovation
Training and Technology
Caregiver care is improved by offering innovations in self-management, decision support, information systems, and delivery redesign. One important advance in caregiving is the increased use of high-tech home health care, Web-based technology, and assistive technology. Nearly one-half of caregivers use some form of technology to improve the quality of the care they provide.
Examples of new tools include Internet-based solutions such as the Comprehensive Health Enhancement Support System and Link2Care, which have resulted in increased delivery of information to family caregivers, decreased depression, and increased sense of social support.
Other tools include home telemedicine, telehealth, and disease-state monitoring systems, which can transmit data on health status to base stations. Devices such as automatic medication dispensers, vibrating alarm watches, scooters, and lifting systems can also relieve caregiver burden and improve the safety of the care recipient at home.
Special Care Senarios
Different Conditions will have different challenges!
CANCER
End of life care
- Because of changes in the health care system and insurance reimbursement, much of cancer care is now provided at home.
- More than 50 percent of caregivers of persons with cancer provide care for patients with metastatic disease or severe co-morbidities who are undergoing treatment, yet these caregivers receive little formal training, information, or support.
- Family caregivers of patients with cancer report high levels of depression, often higher than their care recipients.
- Information for these caregivers is available online through national organizations
- In a 2006 RCT of 354 family caregivers of persons with advanced cancer, a coping-skills intervention led to significantly improved quality of life and decreased caregiver burden.
- A 2010 meta-analysis of 29 RCTs assessed psychoeducational, skills-training, and therapeutic counseling interventions in caregivers of persons with cancer, and results showed small to medium effects in decreasing cancer burden and increasing coping skills, self-efficacy, and quality of life.
- Given the high level of responsibility and the generally low level of training for these unpaid caregivers, additional research is needed to implement these evidence-based interventions.
Dementia
Understand behaviours
- More than 25 percent of caregivers provide care for someone with cognitive impairment.
- Caregiving for a person with dementia is associated with high levels of strain caused by associated behavioral disturbances, intense physical needs, and need for constant vigilance. High strain has been identified as a predictor of long-term care placement.Therefore, physicians need to identify these caregivers early and provide appropriate support.
- Fact sheets from the Family Caregiver Alliance are free, easy to download, and provide practical guidance to caregivers on topics such as understanding dementia behaviors, finding community care options, controlling frustration, and maintaining self-care https://www.caregiver.org/fact-sheets
- Evidence supporting interventions that target caregivers of persons with dementia has become more robust in the past decade.
- Examples of effective interventions in RCTs directed at these caregivers include the Tailored Activity Program, Resources for Enhancing Alzheimer's Caregiver Health, and the Adult Day Services Plus program.
- A 2006 meta-analysis of 127 RCTs with interventions targeting caregivers of persons with dementia demonstrated a small to medium effect on caregiver burden, depression, well-being, and coping skills.
- Psychoeducational interventions that involve active participation of caregivers demonstrate the broadest effects on care giving domains, and multi-component interventions reduce the risk of institutionalization.
Stroke
A long term commitment
- Advances in stroke care have decreased the rate of severe disabilities among stroke survivors, allowing more stroke survivors to live at home. However, these patients often require significant assistance with activities of daily living and instrumental activities of daily living.
- The prevalence of caregiver burden ranges from 25 to 54 percent.
- Physical care activities, particularly assistance with toileting, mood disturbances, and memory deficits, cause significant emotional stress in caregivers of stroke survivors.
- However, caregiver interventions providing education, emotional support, and access to services have been non-significant or have shown only modest effects on caregiver burden.
- A 2010 systematic review of 117 studies of longitudinal family stroke care found that caregiver stress, depression, and health measures did not change significantly across the selected cross-sectional studies.
- Given the higher stress levels associated with care-recipient depression and anxiety, interventions to target these co-morbidities as part of post-stroke care giving are still needed.
Heart failure
Close monitoring
- Caregivers of patients with heart failure report similar problems as those caring for patients with other chronic illnesses.
- However, patients with heart failure often have frequent exacerbation requiring hospitalization, which can increase caregiver strain. These caregivers report that the most burdensome aspects of care are enforcing dietary restriction and adherence, as well as monitoring for signs and symptoms of heart failure.
- A growing number of multidisciplinary team interventions that target patient and caregiver education and include technologic innovations such as home tele-monitoring are effective in decreasing hospital readmission and caregiver burden; however, many of these programs are not yet widely available.
Transitions in Care
Everything changes
- Many caregivers experience a decrease in depression symptoms after the death of a care recipient, perhaps marking the end of the care recipient's suffering.
- The placement of a care recipient into a long-term care facility is not associated with positive effects and may be accompanied by an increase in caregiver anxiety.
- To ease these care transitions, primary care physicians can provide anticipatory guidance, assistance with advance care planning, and appropriate resources for respite, long-term, and end-of-life care
Resources
Help in Singapore
Resources online:
AIC - Caring for the Elderly 101
SgEnable - Caregiver Basis 101
CWA - http://www.cwa.org.sg/
More disease specific support organisations, for example
- Stroke - Stroke Support Station
- Dementia - Alzheimer Disease Association
- Parkinson's - Parkinson Society Singapore
- End of Life Care - Hospice Care Association
- Cancers - Singapore Cancer Society
