Family Caregiver Self-Management of the Unmet Needs of Persons with Dementia
Sarah W. Morgan, PhD, RN, Project Director
Relevance In community dwelling elders 10-15% are living with moderate to severe memory impairment. The number of chronic conditions reported by these people include those related to pain and discomfort such as arthritis and diabetes. What is not evident in the literature is an intervention appropriate for the community setting. This project which proposes the development of such an interventionSummary The purpose of this two-phase project is to evaluate the feasibility and efficacy of an innovative intervention the Caregiver Self-Management of Unmet Needs (C-SUM) intervention. The C-SUM was designed in consultation with Dr. Christine Kovach as an adaptation of her Serial Trial Intervention (STI) in order to translate the work into the community setting. Kovach and colleagues have been successful in teaching professional caregivers in the long term care setting to address discomfort and unmet needs in persons with moderate to severe dementia by responding to behavioral changes using the STI to reduce discomfort and agitation. The C-SUM intervention is intended to teach family caregivers to self-manage the needs of their family members living with dementia in hopes of avoiding unmet needs resulting in reductions in family member’s discomfort, agitation, and stress and caregiver burden and stress. The C-SUM is a three step, staged intervention that incorporates the caregiver as well as a registered nurse. By making the caregiver the primary assessor it makes this a more realistic model for more wide-spread use in the community setting. Unlike the long term care setting a nurse will not be readily available to perform an assessment and intervene when a problem behavior arises. Providing caregiving to persons with dementia is stressful and burdensome and an accumulation of negative factors over time can lead a caregiver to place their family member in long term care. In Phase 1 ten caregiver/family member dyads will be enrolled to test the feasibility of the C-SUM intervention as determined by successful completion of all aspects of the intervention. In Phase 2 a pilot study of the C-SUM intervention will be conducted with 40 caregiver/family member dyads (20 treatment and 20 control) to test the efficacy of the intervention on five outcome measures: family member discomfort, agitation, and stress and caregiver burden and stress. The pilot study will inform a future fully powered randomized control trial.