Home Care Worker Perspectives on Person-centered Care for People with Dementia
Emily Xu1, Deborah Watman2, Jennifer Reckrey2
1Medical Education, 2Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai
Objective:

To explore how home care workers (HCWs) are providing person-centered care for their clients with dementia.

Background:

As people with dementia choose to continue living in the community, they often require additional support from HCWs to ensure safety and well-being. Person-centered care for people with dementia has been associated with increase in ability to perform ADLs, quality of life, and wellbeing in residential long-term care settings. Further research is needed to expand our understanding of person-centered care in home settings by HCWs.

Design/Methods:

We conducted longitudinal, semi-structured interviews of HCWs caring for clients (n=11 HCW, n=22 interviews) with dementia. These interviews asked HCWs to describe their role in the care of people with dementia and how they collaborate with families and the healthcare team. We then performed a secondary qualitative analysis to identify themes related to the Dementia Initiative’s person-centered dementia care framework.

Results:

The following themes emerged: 1) HCWs focused both on their clients’ personhood (i.e. recognizing dementia as one aspect of a client’s identity) and their clients’ dementia (i.e. descripting dementia related behaviors as the opposite of normal), 2) relationships between HCWs and other HCWs as well as family caregivers were important to providing cohesive care, and 3) the care plan sometimes served as a barrier to person-centered care, but HCWs advocated within and around this to meet the needs of their clients.

Conclusions:

We found that HCWs were providing person-centered care through prioritizing their clients' personhood over their dementia and advocating for their clients’ needs. However, HCWs also encountered barriers, including the limitations of their roles and challenging dynamics with other HCWs and family caregivers. This analysis can inform further approaches to better integrate HCWs on medical teams and improve how the needs of people with dementia are identified and met in a person-centered manner in the home setting.

10.1212/WNL.0000000000204864