Caregivers' Daily Tasks for Recipients with Alzheimer's Disease and Associations with Levels of Caregiver Burden and Depression

Background and Purpose: The number of persons with Alzheimer’s type dementia is expected to increase in the coming years. To date there are over 15.4 million persons providing direct care for these older adults at home. Caregivers spend considerable time dedicated to helping persons with Alzheimer’s disease and dementia navigate tasks including Instrumental Activities of Daily Living (IADLs) and Activities of Daily Living (ADLs). Persons caring for those who have dementia spend energy and time fulfilling these responsibilities rather than caring for themselves, which increases the risk of poor physical health, depression, psychosocial stress, and emotional distress. The current study explores the multiple predictors of caregiver tasks on perceived feelings of burden and burden’s association with self-reported depression among a nationally representative sample using baseline data of the Resources for Enhancing Alzheimer’s Caregiver Health (REACH II), 2001 – 2004.

Methods: The REACH II baseline data screened family caregivers of patients with Alzheimer’s disease or related dementia diagnosis. REACH II was the first of its kind to comprehensively explore Hispanic, African-American, and Caucasian caregivers’ well-being related to five risk areas including depression, burden, self-care, and patient problem behaviors. This current study examines depression scores using the CES-D depression scale, feelings of burden using the Zarit Burden Interview, the cognitive status of the individual with dementia (assessed through Mini-Mental State Exam, MMSE), and care recipients’ levels of activity monitored by ADLs and IADLs. Importantly, the Zarit Burden Interview focuses on psychosocial stress and difficulty with self-care addressing components of self-care, feelings strained around their relative, and feelings of uncertainty.

Results: Caregivers reported difficulty with assisting the person with ADLs and IADLs were correlated with perceived burden. Correlations of burden with ADLs and IADLs ranged from of 𝜌=.256 to .417 (all p <.001) and 𝜌=.369 to .456 (all p <.001), respectively. Individual reported difficulty with tasks were used to calculate task difficulty scores for each ADLs and IADLs. In bivariate regression models, depression scores were significantly predicted by reported burden scores (𝛽=0.386, t=18.27, p<.001), caregiver’s ability to pay for basic household (𝛽=1.10, t=4.50, p<.001), but not MMSE scores (𝛽=0.01, t=0.22, p=.824). A multivariate regression model with reported burden scores, controlling for caregiver’s ability to pay for basic household needs, explained 36.6% of the variance in caregiver depression scores (F[2, 628]=181.34, p<.001, adjusted r²=.364). Burden scores (𝛽=0.379, t=18.18, p<.001) and caregiver’s ability to pay for basic household needs (𝛽=0.92, t=4.60, p<.001) significantly predicted depression scores with no detected multicollinearity (VIF<1.003).

Conclusion and Implications: Family caregivers are affected by a sense of burden, and this study supported the importance and impact of caregivers’ assistance in performing ADL and IADL tasks for loved ones. Particular attention to self-care and respite services is extremely important to reduce the levels of burden and improve psychosocial well-being of family caregivers. Education is imperative for family members and caregivers including access to community resources including the Alzheimer’s Association and social support services provided through policies such as the National Family Caregiver Support Program.