Caregiver burden is defined as the negative reaction to the impact of providing care on the caregiver’s social, occupational, and personal roles and appears to be a risk for depressive symptoms.
The caregiver’s own poor health status, increased health-risk behaviors (such as smoking), and higher use of prescription drugs. Researchers have reported that caregivers are at risk for fatigue and sleep disturbances, lower immune functioning, altered response to influenza shots, slower wound healing, increased insulin levels and blood pressure, altered lipid profiles, and higher risks for cardiovascular disease.
Whether the caregiver develops negative outcomes seems to be directly related to the care recipient’s inability to perform ADLs (activities of daily living like bathing, dressing feeding themselves), either due to physical limitations or cognitive status.
Family caregivers often feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from formal health care providers. Nurses and family caregivers rarely agree about specific needs or problems during hospital admission or discharge. Health care providers may be unaware of the strengths and weaknesses of both the patient and caregiver.
Due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed. They may also not know when they need community resources nor know how to access and best use them.
Multiple Interventions To Reduce Burden and Distress
Rather than one intervention, a combination of support groups, counseling, education, and using health and community resources appear to be more effective in reducing the sense of burden or symptoms of depression.
Examples of effective intervention research
- Comprehensive individual counseling sessions for spouses caring for a person with dementia helps reduce depression.
- Counseling appeared to be effective in improving the quality of life for caregivers of stroke survivors.
- Friendly, socially supportive phone calls provided some respite from caregiving, even without in-home caregiver skills training.
- Even a simple one-to-one telephone call from a health care provider may be effective in helping the caregiver.
- An automated, interactive voice-response telephone support system for caregivers reduced the burden for those caregivers with a lower sense of control over their situation.
- Caregivers receiving home visits and enhanced social support also can help reduce caregiver burden and depression.
- Caregivers who used adult day care services for their relatives with dementia had significantly lower levels of caregiver stress, anger, and depression, with increased well-being.
Interventions To Improve Competence and Confidence
Teaching caregivers how to manage specific problems can improve the caregiver’s well-being. For example, not being able to sleep at night is a serious problem for caregivers of people with Alzheimer’s disease. The caregivers become fatigued and exhausted, which can have an adverse effect on both the physical and emotional health of the caregiver. Teaching them how to improve their family members’ nighttime insomnia through daily walks and exposure to light can improve sleep time for both the caregiver and care recipient.
Even caregivers providing end-of-life care can benefit from structured interventions. McMillan and colleagues found that a skills and coping training with family caregivers of hospice patients improved the caregivers’ quality of life.
- Call 211 or your local area agency on aging to see what programs may be available in your community.
- Contact the physician of the person you care for about caregiver skills training. Alzheimer’s Association alz.org provides support groups and education programs.
- Use your health insurance or identify free sources for individual counseling.
- Visit familycaregiversonline.net for a calendar of virtual and live education and support groups, directory of resources, free online education, and frequently asked questions for caregivers.
Edited by Zanda Hilger, from Patient Safety and Quality
We hope this information is helpful to you in the important work you do as a family caregiver.
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