(As featured by Michigan Medical’s Institute for healthcare Policy & Innovation at http://ihpi.umich.edu/news/caring-caregiver-novel-web-based-approach)
Air travelers well know the instruction to “please put on your own oxygen mask before assisting others” in the event of an emergency.
This is, as it turns out, good advice in general for dealing with many of life’s stressful situations: we need to take care of ourselves to more effectively help others. And for the 15 million family members caring for the 5 million people with dementia in the United States, self-care is an absolute necessity – the daily demands placed on these caregivers create distress that can seriously erode their ability to look after their loved ones’ wellbeing.
As the older U.S. population grows, dementia is projected to affect 16 million Americans by 2050, with 98 percent of them impacted by symptoms such as depression, anxiety, delusions, wandering, aggression and sleep problems.
Michigan Medicine’s Helen C. Kales, M.D., U-M professor of psychiatry, and her Program for Positive Aging (PPA) team have been at the forefront of innovation for dementia caregivers, providing reliable and well-evaluated information and training, creating support tools and studying how to enhance self-care.
One web-based caregiver support tool called the WeCareAdvisor, developed by Kales and the PPA with collaborators at John Hopkins University, has been shown to measurably reduce caregiver distress, according to an evaluation recently published in BMC Geriatrics. Future research will identify whether using WeCareAdvisor for longer periods can impact other caregiver and behavioral outcomes; the caregivers in the study used it for one month; future trials plan to evaluate three months of using WeCareAdvisor.
WeCareAdvisor is designed to lead the family caregiver through the assessment, management and monitoring needed to accomplish the following:
- Identify and address the underlying causes of behavioral symptoms (e.g. pain, urinary tract infection, communication issues, environmental overstimulation, etc.)
- Reduce behaviors
- Reduce caregiver distress
- Enhance confidence in managing behaviors by teaching the user new and transferrable problem-solving skills such as enhanced verbal and nonverbal communication.
Kales will discuss WeCareAdvisor and other PPA-developed products to benefit individuals with dementia and their caregivers at the Precision Medicine World Conference in Ann Arbor, June 6-7.
The bedrock of the WeCareAdvisor tool is the “DICE” approach to dementia behaviors that was developed from a U.S. national multidisciplinary expert consensus panel led by Kales and the PPA in 2011. DICE™ comprises four steps:
- DESCRIBE the behavior from the caregiver’s perspective to derive an accurate characterization and the context in which it occurs;
- INVESTIGATE: having the healthcare provider examine, exclude and identify possible underlying causes of the behavior;
- CREATE and implement a treatment plan for the behavior as a partnership between the caregiver and the provider; and
- EVALUATE which parts of the treatment plan were attempted and effective. Within the DICE approach, behavioral triggers from the caregiver (unrealistic expectations, caregiver stress/depression, etc.), person with dementia (medical conditions, functional status, etc.); and environment (overstimulation, lack of routines, etc.) are evaluated and addressed by the provider and caregiver.
The approach promoted by DICE and the WeCareAdvisor, putting behavioral and environmental strategies ahead of drugs in the management of dementia behaviors is consistent with the stance of multiple medical organizations and expert groups as the preferred first-line treatment approach.