Caregiver Burden in the Context of Dementia - #97Take Quiz
“Caregiver burden” is a multifaceted concept that encompasses the physical, psychological, social, and financial strain experienced when caring for a loved one over time.1
Caring for someone with dementia is even more demanding and stressful than caring for someone without dementia. Dementia caregivers provide three times as many total hours of care over the last 10 years of the care recipient’s life as compared to those caregivers of recipients without dementia.2
Risk factors associated with higher caregiving burden levels include:
- Juggling multiple roles (e.g., caregiving, job, children)
- Having a small social network or being socially isolated
- Spousal caregiver
- Low education
- Low income
- Cohabitate with the care recipient
- Provide more than 21 hours of care per week
- Care recipient has cognitive impairment and/or difficult to manage behaviors
- Perception of having no choice in assuming the caregiver role1,3
Dementia caregiving can negatively impact the caregiver’s quality of life, physical health, emotional well-being, and can lead to a reduction in the quality of care provided.1
- Nearly 1 in 4 caregivers feel caregiving has made their health worse and find it difficult to take care of their own health. These caregivers more often report being in worse health, feeling more physical strain, emotional stress, and loneliness.3
- Caregiving can lead to social isolation and loneliness, which are associated with higher risks for high blood pressure, heart disease, obesity, weakened immune function, anxiety, depression, cognitive decline, and all-cause mortality.5
The Zarit Burden Interview is the most used caregiver burden measurement tool in the literature. A shorter, 12-item version of the tool is appropriate for evaluation of caregiver burden in clinical practice.6 The instrument and instructions regarding cutoff scores can be accessed here:
Spouses and adult children who provide ongoing assistance to another person, especially family caregivers of people with dementia.
Conduct a caregiver assessment—an interview directed at identifying high levels of burden—as soon as a caregiver is 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.
- In 2020, it was estimated that 16.8% (41.8 million) of U.S. adults were caregivers for a recipient aged 50 and older.3
- Over 11 million Americans provide unpaid care for a person with dementia.4
- 4 in 10 (40%) of caregivers are in high-burden situations. The burden of care increases with hours of care provided. 92% of caregivers providing >20 hours care/week score at a high burden level.3
- Define caregiver burden.
- Describe how to assess older patients for caregiver burden.
Review of Systems (ROS)
- Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438-445. doi:10.1016/j.ijnss.2020.07.012
- Reckrey JM, Bollens-Lund E, Husain M, Ornstein KA, Kelley AS. Family Caregiving for Those With and Without Dementia in the Last 10 Years of Life. JAMA Intern Med. 2021;181(2):278–279. doi:10.1001/jamainternmed.2020.4012
- AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. doi.org/10.26419/ppi.0010001
- Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement. 2022;18(4):700-789. doi: 10.1002/alz.12638
- National Academies of Sciences, Engineering, and Medicine. Social isolation and loneliness in older adults: Opportunities for the health care system. 2020. Washington, DC: The National Academies Press. https://doi.org/10.17226/25663.
- Gratão ACM, Brigola AG, Ottaviani AC, Luchesi BM, Souza ÉN, Rossetti ES, de Oliveira NA, Terassi M, Pavarini SCI. Brief version of Zarit Burden Interview (ZBI) for burden assessment in older caregivers. Neuropsychol. 2019;13(1):122-129. doi:10.1590/1980-57642018dn13-010015