Caregiver Burden, a clinical review by Adelman, Tmanova, Delgado, Dion & Lachs - 2014 - Article

Worldwide, millions of individuals provide support to midlife and older adults, for example to their own husband or wife who is chronically ill. These caregivers are often affected by physical, mental and psychological health problems, such as late-life depression, geriatric suicide, social isolation and caregiver burden. The current paper focuses on the latter: caregiver burden. The paper is a review and 1) emphasizes the clinicians responsibility to recognize caregiver burden, 2) provides tools for assessing caregiver burden and 3 ) provides insight into interventions that prevent or mitigate caregiver burden.

What is caregiver burden?

In the International Classification of Diseases (ICD-10), there is no official definition or code for caregiver burden. A useful definition is given by Zarit and colleagues (1986): ‘The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical and spiritual functioning’.
This definition emphasizes two important aspects of caregiver burden: 1) the multidimensional toll it exacts on caregivers 2) the highly individualized experience: what for one person may result in a caregiver burden, can be expressed much less stressful for another person.

What is the epidemiology of caregiving?

Around 90% of in-home long-term care for adults is provided by unpaid family or informal caregivers. Many of these family caregivers are untrained and often feel not well prepared to take on these (medically skilled) tasks. Most caregivers are female, and spend on average 20.5 hours per week providing care. In 2009, 43.5 million individuals in the United States provided care for an adult older than 50 years of age. Approximately 32% of caregivers reported high caregiver burden, and 19% reported medium caregiver burden.

What are risk factors for caregiver burden?

Risk factors for caregiver burden are: female, low education, living with the care recipient, depression, social isolation, financial stress, higher number of hours spent caregiving, and lack of choice in being a caregiver.

What did prior studies focus on?

Many studies focused on caregiver burden are limited by an emphasis on homogeneous diagnostic groups. For example, they focus only on caregivers who take care for patients with Alzheimer disease, cancer or a stroke. An advantage of this homogeneous approach is that it may provide insight in symptoms or the degree for that specific disease: some diseases may result in more caregiver burden than others. A disadvantage however is that it limits the generalizability and identification of features that are common across diagnoses.

How to improve diagnosis and assessment of caregiver burden?

According to the authors, physicians need to interact with family, and in particular with primary caregivers (the invisible patient). Little attention has been paid to how clinicians should relate to family caregivers. The following approach in recommended by The National Consensus Development Conference for Caregiver Assessments:

1. Identify the primary and additional caregivers

2. Incorporate the needs and preferences of both the care recipient and the caregiver in all care planning

3. Improve caregivers’ understanding of their role and teach them the skills necessary to carry out the tasks of caregiving

4. Recognize the need for longitudinal, periodic assessment of care outcomes for the care recipient and family caregiver

The present article provides topics and questions that a clinician can ask to assess caregivers (step 2). It also provides suggested openings to initiate conversions with a caregiver.

Which interventions for caregiver burden exist?

Finally, the present study reviewed several meta-analyses and reviews to provide insight into present interventions for caregiver burden. Several interventions are developed in different domains: for example psychosocial, psychoeducational and pharmalogical. Most interventions showed weak (0.2) or moderate effect sizes (Cohen’s d). Even with small or modest effect sizes, many interventions decreases symptoms of caregiver burden and are warranted.

Some practical interventions for clinicians to reduce caregiver burden are given:

• Encourage the caregiver to function as a member of the care team: be transparent, proactively include the caregiver in the care team.

• Encourage caregivers to improve self-care and to maintain their health (as often caregivers tend to neglect their own health).

• Provide education and information: educate caregivers about the illness and specific needs of the care recipient. For example, teach them proper techniques for lifting and transferring the care recipient.

• Use the support of technology, such as emergency response systems. For example, install an intercom system so that the care recipient can call for help when the caregiver is not at home.

• Coordinate for Assistance with care. Many caregivers are not aware of assistive services, such as medical adult day programs, meal delivery services and volunteer programs. Coordinating such care may lower the experienced burden of caregivers.

• Encourage caregivers to access respite care. For example, the care recipient can stay a brief period of time in an PACE program (Program of All-inclusive Care for the Elderly) to relieve the caregiver.