There are an estimated 27.6 million informal caregivers in the United States providing an average of 20 hours of care per week. Informal caregivers are often not adequately trained or offered support services, and are frequently left to their own devices to negotiate the complex health care system to find help where they can. Meanwhile, their own health suffers. A major gap exists between research and practice, i.e., few programs routinely use what is known to address caregiver's well-being and need for support.
The primary objective of the proposed study was to define existing patterns and outcomes regarding the health and needs of caregivers for veterans with chronic illness. Research questions are: What caregiver characteristics are associated with caregiving appraisal (satisfaction, strain and burden)? What veteran characteristics are associated with caregiving appraisal (satisfaction, strain and burden)?
This study employed telephone interviewing to collect data from VISN 15 veterans enrolled in the Care Coordination Home Telehealth (CCHT) program and their identified primary caregivers. The sample includes 120 veterans and 120 caregivers. The survey data were analyzed using a variety of statistical methods tailored to each question type.
The final sample included 120 veterans and their caregivers (n=240 overall). Veterans had a mean age of 67 years, were largely male (97%), married (75%), Caucasian (92%) and had a high school education or greater (84%). Most were retired (53%) or disabled (40%). Most were enrolled in the CCHT program for diabetes (61%), followed by heart failure (19%) and hypertension (10%). Only 9% rated their health as 'excellent', with 28% stating it was 'poor'. Caregivers had a mean age of 59 years, were largely female (91%), married (82%), with a highschool education or greater (83%). Many were employed full or part time (31%), with 34% retired and 13% disabled. Few caregivers (8%) rated their health as 'poor' with 32% rating their health as 'excellent'.
All veterans surveyed took prescription medications. Of the 120 veterans, close to half reported needing help with medications (by either veteran or caregiver report). While only 24% of veterans stated they needed to know more about their medications, 69% of caregivers stated they needed more information about the veteran's medications. Few caregivers used paid (10%) or unpaid (33%) help with the veteran.
Veteran characteristics associated with increased strain in caregivers include: coping though counseling or praying, poor self-reported health, greater dependency in activities of daily living and instrumental activities of daily living, and greater levels of depression. Being a non -spouse caregiver and seeking advice from friends and family are associated with more positive perceptions of caregiving. Caregiver characteristics associated with increased strain include: assisting the veteran with medications, use of paid help but receiving less help from family and friends, seeking advice from friends or VA staff, and coping though counseling.
The move away from institutional care to ambulatory and home care has shifted the burden of care to the home. Consequently, VA care coordinators are increasingly providing teaching, support, and referrals for caregivers of veterans. The long-term goal of this project is to develop decision-support tools for VA care coordinators to help them identify caregivers at risk and target appropriate teaching and community referrals.
None at this time.
Caregivers – not professionals