Behaviors and factors that create the greatest caregiver burden
With estimates of the prevalence of dementia doubling every 20 years, the burden of care on the family of dementia sufferers is a growing crisis. Worldwide and in the US, the large majority of people living with dementia are cared for by family members rather than in institutions, such as nursing homes. In this post, we will focus primarily on influences on caregiver stress.
Caregiver burden has a number of elements including financial impact, social isolation, ‘sandwich generation issues’ (i.e., caring for children and parents simultaneously), and stress/health impact.
The 2019 Alzheimer’s Disease Facts and Figures, an annual report released by the Alzheimer’s Association, revealed that 60% of dementia caregivers report high or very high stress levels associated with the care of a demented family member, with an estimated 40% experiencing clinical depression.1
In addition to direct caregiving, a significant number of family members report economic impact including employment changes (i.e., changing from full to part time, quitting a job, taking a leave of absence, or turning down a promotion).
Disruptive behaviors are the greatest caregiver burden, according to study
Cheng’s 2017 review of caregiver burden gives a sobering picture of the impact of caregiver stress.2 The author’s review of evidence reported that 60% of caregivers have depressive or anxiety disorders, with strong indications that the behavioral health conditions emerge in the course of caregiving instead of being pre-existing conditions. Stress-related cardiovascular risk is also identified as a consequence of the chronic stress of caregiving.
The most compelling conclusions from Cheng’s review was the impact of the demented individual’s neuropsychiatric symptoms on the caregiver’s well-being. In particular, disruptive behaviors such as aggression, agitation, or loss of inhibition, followed by delusions and mood disturbance, create the greatest caregiver burden.
These behaviors negatively affect the emotional connection between the impaired individual and the family member as well as interfering with the caregiver’s attempts to assist with activities of daily living (ADLs). Dementias with early-stage disruptive behaviors, such as seen in frontotemporal conditions, may introduce particular challenges.
How cognitive care planning can help caregivers
Anticipatory grief and family conflicts that can emerge in the course of extended caregiving can be important additional sources of caregiver stress. Without recognition of these multiple stressors, both the patient and family suffer.
The cognitive care plan (CCP) can:
- Provide the physician and family a critical opportunity to identify neuropsychiatric symptoms in the impaired individual
- Assess caregiver stress
- Recommend interventions that can reduce the burden of disruptive behaviors, such as psychiatric intervention, respite options for the family, and other family support services
- Facts and Figures. (n.d.). Retrieved from https://www.alz.org/alzheimers-dementia/facts-figures
- Cheng, S. (2017). Dementia caregiver burden: A research update and critical analysis. Current Psychiatry Reports, 19(64). https://doi.org/10.1007/s11920-017-0818-2