Preparing Family Caregivers to Provide High-Quality Care for People with Dementia

Jan 22, 2015, 9:00 AM

Tatiana Sadak, PhD, PMHNP, is an assistant professor at the University of Washington School of Nursing and a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar (2013-2016). She is working to promote “dementia caregiver activation,” a process of preparing caregivers to become ready to manage the multiple needs of loved ones with dementia while caring for themselves.

The well-documented personal and societal burdens of dementia are the central focus of the National Alzheimer’s Plan, which calls for extensive reforms in the delivery of health care for patients with dementia and their family caregivers. RWJF answered this national call to action by funding several innovative dementia health services research projects and nurturing the careers of junior dementia researchers.

I was fortunate to receive RWJF Nurse Faculty Scholars funding. It will make it possible for me to focus a majority of my time on improving health services for people living with dementia and for their family care partners—or ‘caregivers.’

Dementia patients suffer brain failure that leads to progressive loss of autonomy and the inability to understand and meet personal health care needs. Clinicians conduct health assessments, create care plans, and treat symptoms, but it is dementia family caregivers who deliver the day-to-day care and health management these patients need. There is, however, considerable variation in their capacity to assist care recipients in making health care decisions, for providing daily care, and for navigating health care systems.

My team is currently focused on strengthening family caregivers’ capacity to help. We are introducing, defining, and operationalizing a novel construct of dementia caregiver activation:  the caregiver’s capacity and preparedness to successfully manage their care recipient’s health, to partner with clinicians, and to care for themselves. We are completing validation of a new caregiver self-report measure called Partnering for Better Health—Living with Dementia (PBH-LD), which is designed to measure caregiver activation and to support clinician-caregiver communication and partnership to improve health care for people with dementia.

Family members and friends who provide most of the care for people with dementia at home are expected to implement clinician-directed health care plans for patients, typically without training or supervision. Caregivers’ ability to assume these complex, quasi-clinical roles while caring for themselves may be taken for granted by the clinicians who are managing the patient’s health care. The National Alzheimer’s Plan recognizes the critical roles of caregivers in health care, yet effective engagement of caregivers as members of the health care team depends on identifying and meeting their information and training needs, for which models and tools do not yet exist.

For our work, we defined a dementia caregiver activation construct, and derived PBH-LD domains using evidence-based clinical guidelines, comprehensive dementia care models, and data from qualitative interviews with expert dementia clinicians and a diverse group of dementia caregivers. The PBH-LD measure was culturally adapted and modified to meet the needs of African American, Hispanic, and White caregivers. We conducted an in initial pilot study with 125 caregivers that indicated that PBH-LD is a valid, reliable, and practical clinical tool that can be used as a marker of caregiver needs for health care education and behavioral change coaching.

Our future studies will focus on culturally adapting the instrument for use with other ethnic and racial minorities and low-health literacy participants and on developing caregiver activation interventions. RWJF Nurse Faculty Scholar funding, mentorship, and networking resources allowed us to develop a partnership with the Thomas Jefferson University Elder Care Clinic, which will serve as the first study site for a multidisciplinary dementia caregiver activation intervention.

Doctors, nurses, and occupational therapists will use the PBH-LD baseline assessment to identify the specific activation needs of low-income ethnically diverse dementia caregivers.  We hope our findings will systematically guide and focus conversations and problem-solving with caregivers, and that it will provide the means to target, promote, and monitor specific changes in caregiver behaviors to achieve high quality health care for dementia patients.

Read more about the work of RWJF Scholars to support caregiving.

This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.