Informal caregivers, often family members, care for 22 million older adults in the US, including 3 million with cognitive impairment. Nearly one-third of these families provide care coordination, independence maintenance, and socialization for elders from a distance greater than a 60 minute drive from the caregiver. Caregiving for cognitively impaired (Cl) elders on-site imposes a heavy emotional, physical, and financial toll on caregivers. Caring at a distance further complicates caregiving roles. The exact nature of distance caregiving needs for families caring for Cl elders living alone at home is unexplored, yet essential for planning clinically significant interventions to address the needs. At issue are problems of less physical contact with elders and greater coordination of services from afar. Modem computer / video technology with telecommunication innovations suggest a means for dialogue, remote wellness checking, information seeking and decision-support that could potentially bridge significant socialization and communication gaps by distance. However, these modalities remain relatively untapped. There is a need to provide evidence to inform the selection/customization of technology-based interventions to support distance family caregivers in a way that fosters independence and quality of life for Cl elders. This study is a first step in a program of research to accomplish this goal.
Aims of this preliminary, descriptive study are to describe and prioritize caregiving concerns of distance caregivers, identify caregiving facilitators, identify technology-based interventions to address priority concerns, and explore caregivers views of feasibility of the selected interventions. Focus group interviews of a purposive sample of culturally diverse distance family caregivers (n=48) of Cl elders will be qualitatively analyzed to identify caregiving concerns and facilitators. A panel of experts in technology, elder care and cognitive impairment, and caregiving, and a long distance caregiver, will identify technology-based interventions to address priority concerns. Caregivers who composed the focus groups will then assess feasibility and usability of the recommended technologies. Understanding caregiving needs of distance caregivers should enable development and testing of user-friendly interventions for caregivers and promote cost-effective care delivery and beneficial outcomes for Cl elders.
