By Molly Wylie
Long-distance caregivers face unique challenges when managing care for family members with dementia.
Informal caregivers living at a distance from older family members face multiple barriers when trying to communicate with the relative’s formal care providers, according to a new study. Distance makes it much more difficult for informal caregivers of persons with dementia to monitor care and place their trust in formal care providers.
These are among the findings of a new mixed-method study published in Clinical Gerontologist. Verena Cimarolli, senior health services research associate at the LeadingAge LTSS Center @UMass Boston, co-authored the article with lead author Francesca Falzarano of Weill Cornell Medicine, and Jillian Minahan and Amy Horowitz of Fordham University.
CHALLENGES OF DEMENTIA CAREGIVERS
Informal, unpaid caregivers often act as liaisons between care recipients and formal health care providers. In addition to providing care directly to a care recipient, these caregivers coordinate the provision of formal, paid care, and take on a role that requires consistent interaction with formal care providers.
“Long-Distance Caregivers: What are Their Experiences with Formal Care Providers?” identifies 3 common frustrations experienced by informal caregivers when navigating their role: lack of information, communication, and opportunities for voicing opinions regarding plans for care.
The authors argue that these challenges, likely faced by many informal caregivers, are amplified when care recipients have dementia and live in residential settings.
Caregivers of persons with dementia rely heavily on updates from formal care providers because the care recipients may not be able to self-report effectively. Dementia caregivers have reported difficulties obtaining information from formal care providers, and often feel they are not given adequate resources to handle dementia-related behavioral symptoms or access training and services.
Moreover, when caring for a person with dementia living in a residential care setting, informal caregivers often feel left out of care conversations. Understaffing in nursing homes is thought to leave minimal time for formal care providers to communicate with informal caregivers and address their needs.
ABOUT THE STUDY
Falzarano and colleagues compare the experiences of long-distance caregivers by their care recipients’ dementia status and living arrangement. Approximately 10% of all caregivers in the U.S. live 2 or more hours away from the care recipient, and continued increases in population mobility and migration make long-distance caregivers a growing group.
The authors recruited 296 long-distance caregivers and analyzed 4 subgroups consisting of:
- Caregivers of persons with dementia living in residential care settings and in the community.
- Caregivers of persons without dementia living in residential care settings and in the community.
Researchers examined a variety of outcomes, including:
- Overall satisfaction with formal care providers, including satisfaction with communication and information received from health care providers.
- Challenges associated with navigating the formal care system.
KEY FINDINGS
Researchers found that long-distance caregivers of persons living in a residential care setting reported more challenges and lower levels of satisfaction, compared to caregivers of individuals living at home. This finding was true regardless of the care recipient’s dementia status.
Specific challenges included inadequate care and difficulty in communicating and receiving information from formal care providers. Time restrictions and staff workload issues in residential care settings are thought to keep long-distance caregivers out of the “direct communication loop,” according to the authors.
Surprisingly, caregivers of persons without dementia living in residential care settings reported lower satisfaction with communication and information. The authors suggest that these care recipients likely can communicate directly with their formal care providers, leaving informal caregivers further out of the loop.
“The current study … is important for the purpose of designing interventions to foster connections between long-distance caregivers and formal care providers,” write the authors.