Preliminary Findings from Feasibility Testing of the Caregiver Self-Management of Unmet Needs (CSUM) Intervention and Insights on Family Self-Management

Almost 11 million American provide unpaid care to persons living with dementia. Persons with moderate to severe dementia may be unable to communicate their needs in a way that their caregivers can recognize them leaving those needs unmet. The inability to recognize unmet needs can result in deleterious health outcomes for the care recipient such as discomfort and agitation. The C-SUM was designed to teach family caregivers to self-manage the needs of persons living with dementia thereby leading to reductions in family member discomfort, agitation, and stress and caregiver burden and stress. The C-SUM is a three step, staged intervention that incorporates the caregiver and a registered nurse. The intention is to provide the caregiver with the ability to recognize and respond to the unmet needs of their family member and to learn when professional intervention is needed. The aim of this feasibility phase was to evaluate the use and usefulness of the study measures and components, describe the sample and evaluate recruitment and retention. Sixteen caregiver/family member dyads completed feasibility testing. The study involved pre and post measures of stress and burden in the family caregiver and stress, pain and agitation in the family member living with dementia. Additional measures included demographics, caregiver sleep and health. The caregivers are primarily female (n=13), diverse, African American (n=6) Hispanic (n=2), and low-income (>50% have a household income of <=39,000). The caregivers (n=16) reported poor sleep quality, poorer health quality relative to bodily pain, vitality, and role emotional state when compared to population norms. Preliminary findings relative to self-management indicate that the C-SUM impacts the process components of self-efficacy, outcome expectancy, self-regulation skills and abilities, decision-making, planning and action. There is little literature about self-management and caregivers of persons with dementia so these initial findings provide important insights into this process.