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Family caregiver research seeks to lighten the load

Amanda Goodman

An Alzheimer’s disease or a related dementia diagnosis impacts more than just the person receiving it. According to data from the Alzheimer’s Association, 16.1 million Americans provide unpaid care for people living with the disease and most of those caregivers are family members.

It’s a role almost all step into without any medical, direct care, or care coordination background — and as a result, they feel ill-prepared. That, coupled with the financial and emotional toll of taking care of a loved one with Alzheimer’s, can lead to incredibly stressful situations.

Efforts to alleviate some of those caregiver stressors through research-based initiatives are well underway at Arizona State University’s Edson College of Nursing and Health Innovation

And thanks in part to the transformative gift from Charlene Edson and her late husband, J. Orin Edson, there is added support to translate emerging evidence-based approaches and investigate new methods focused on improving the quality of life of people with dementia and their family caregivers. 

David Coon, Edson College associate dean of research and director of the new Center for Innovation in Healthy and Resilient Aging, has developed a number of interventions over the years for Alzheimer’s and related dementia patients and their family caregivers.

Later this month he’ll emcee and present at the Arizona Alzheimer’s Consortium Public Conference, which seeks to connect patients, caregivers and family members with resources and research.

We spoke with him to get a better understanding of the current state of research around family caregiving, to learn what has been successful and to find out which areas need additional attention.

Question: What does caregiver research encompass, and why is it necessary that we research it? 

, Edson College associate dean of research and director, Center for Innovation in Healthy and Resilient Aging

David Coon

Answer: Caregiver research encompasses the whole journey from the first sign of symptoms, to diagnosis, to care and the end of life. What we’re interested in is developing skill-building interventions for caregivers to manage stress, stay connected with others and handle behavioral problems, which can vary across individuals and the course of the disease. We’re also looking at ways to communicate more effectively all around. Part of that communication element puts emphasis on the early-stage individual, so really discussing and then documenting quality care values in order to hear and honor their wishes.

This research is necessary because depending on what the source, as great as 50% of caregivers are clinically depressed. They can experience anxiety and frustration while at the same time feeling guilty that they still just don’t do enough or do it “right”. 

Additionally, we know that caregiving can be socially isolating, as you focus more and more on assisting, you have less and less time for anything or anyone else.

Research in this area raises the issue of the importance of identifying ways to intervene that can impact key caregiver outcomes. 

Q: Is there a sense of urgency around this work?

A: Yes, age is the biggest risk factor for Alzheimer's and related dementias, and we know that our society is aging. In fact, the Census Bureau is projecting that in 2035 there will be more people over the age of 65 than under the age of 18, a first for this country.

In Arizona, we have the fifth-largest aging population in the United States, and between now and 2025, we are projected to be the state with the greatest increase in the proportion of people living with dementia in America.

These numbers are worth noting because the vast majority of people living with dementia will be cared for at home by a family caregiver who is typically a spouse, adult child, sibling or friend who is considered family. This is why it is critically important that we continue identifying evidenced-based programs to support caregivers, so they can stay healthy.

At the same time, our role as educators at Edson College comes into play as well because we need to continue developing a well-trained workforce interested in engaging with older adults and caregivers. 

Q: What are some of the positive findings from the interventions you’ve developed and studied in the past?

A: Clearly, evidence-based interventions directed at caregivers can work. One of the programs my colleagues and I developed is called CarePRO, Caring Partners Reaching Out, and the Alzheimer’s Association has deployed it across the Southwest with good success. CarePRO is group-based, and it teaches caregivers self-care skills and strategies to reduce their stressors and related distress while enhancing positive coping and emotional well-being. 

Known outcomes include a reduction in stress, depression, other negative mood states, and improved self-efficacy, which can help caregivers manage behavior problems of their loved ones. Plus, the group format helps to reduce social isolation, and caregivers can support one another in the strategies they learn and practice. Caregivers often enter the program overwhelmed with their situations. We repeatedly get positive feedback, and some participants have even said CarePRO “saved my life”. 

Another one of our programs with very promising results from the pilot project is EPIC, which is in the clinical trial phase right now supported by funding from NIH’s National Institute on Aging. This is different from CarePRO because it involves both the early-stage individual and their care partner with a focus on hearing the voice of the person living with the disease. The goal is to map out a care plan for the future, and it combines group sessions, breakouts and individualized sessions for early-stage and care partner dyads. It’s an especially important approach because there are very few evidence-based programs developed specifically to assist early-stage people and their caregivers. 

Q: Are there areas of caregiver research that still need more attention? 

A: There is still much to do in many ways, particularly in terms of more work in the early stages and in the very late stages, including for caregivers who have placed their loved ones in a long-term-care facility and at the end of life to help caregivers cope with grief and bereavement.

Something else worth exploring is the appropriate mix of high-tech and high-touch interventions. When we talk about high-touch, we mean interventions that are in-person and allow for interaction with the individual. High-tech, among other things, can involve assistive devices, smart homes, apps and the like. Trying to find the right blend of these approaches is important so that we can assist versus annoy or disconnect family caregivers from supportive others. Yes, we still have a lot more work to do.