Caregiving is a journey that starts well before the official diagnosis. As the disease gets worse so then the need for caregiving increases – what affects one, affects the other. The end of caregiving may also extend beyond the time the person they are caring for needs them, as the caregiver adjusts to life post-caregiving. But caregiving interventions are not designed to think of caregiving as a journey. They are designed to meet unique needs that are only visible during those crisis moments when the caregiver or the patient interacts with the medical system and that need becomes paramount.
How can interventions switch from an episodic to a more holistic approach? One way is to adjust the conceptual framework for researchers to understand and frame the subject matter. The article, Conceptual Framework to Guide Intervention Research Across the Trajectory of Dementia Caregiving written by Dolores Gallagher Thompson PhD, ABPP (one of the original founders of OAC) and myself, Ann Choryan Bilbrey PhD, along with our colleagues Ester Carolina Apesoa-Varano PhD,
Rita Ghatak PhD, Katherine K. Kim PhD, MPH, MBA, and Fawn Cothran PhD, RN, GCNS-BC propose a conceptual framework that can guide intervention research which can take into account the trajectory of the progression of the care recipient’s disease.
Building on prior theoretical models and intervention literature in the field, it also addresses notable gaps including inadequate attention to cultural values; lack of longitudinal research; focus on primary caregivers almost to the exclusion of other family members or the person living with dementia; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers’ quality of life. The framework looks at how intervention research should take into consideration factors such as sociocultural values or issues, health care systems’ expectations and demands, and the changing dementia care needs across time when interventions are designed and researched. The article provides a template to encourage longitudinal research on reciprocal relationships between caregiver and the person they are caring for because significant changes in the physical and/or mental health status of one will probably affect the physical and/or mental health status of the other.
If you wish to read the article you can click here, on the image, or contact Dr.Bilbrey at ann@optimalagingcenter.com and request a copy.
