Connecting caregivers, practitioners, and researchers to build better lives for patients and their caregiving families
Every year, more than 1.5 million patients enroll and die in hospice. The majority of hospice patients have at least one person who is caring for them every day. Most of the time these caregivers are family or close friends, often a spouse. Research has shown that hospice caregiver quality of life gets worse as the caregiving experience goes on. These caregivers do not get paid and are not trained; they must learn to do the things that doctors and nurses train years to learn.
*Assist with walking.
*Assist with toileting.
*Help with bathing.
*Assess physical symptoms, including pain.
*Understand what is an emergency and what is normal.
*Decide when to try to handle things on their own and when to call the hospice agency or their doctor
Caregivers are dutifully attending to the needs of their family member while also realizing they are going to loose this person. In the midst of anticipating their loss, they provide a positive attitude for the sake of the patient who is slowly dying. They often do not have time to think of themselves or take care of themselves, as their energy and emotion are directed toward trying to keep their patient comfortable.
The science of caregiving
Researchers at the Lab for Caregiving Innovation have been studying hospice caregivers for nearly 20 years. Other researchers have also been testing innovations. The goal of all research is to improve the caregiving experience and the quality of life for hospice caregivers. We are committed to advancing the science of caregiving by sharing our knowledge and helping those who work with hospice caregivers to make caregiving easier.
Hospice caregiver quality of life: Measurement
Many researchers have tried to figure out how to measure a caregiver’s quality of life. At the Lab for Caregiving Innovation, our definition of caregiver quality of life looks at four aspects of a caregiver’s life. We ask caregivers to rate each domain 0-10, with 10 being the best possible. We look at emotional, physical, social, and financial quality of life. This simple way to measure caregiver quality of life measured the same way as more complicated instruments with more questions. While we conclude this is a worthwhile tool we need to begin assessing spiritual quality of life as well.
The paradox of hospice for caregivers of cancer patients and unique characteristics of hospice caregivers of cancer patients
Caregivers of cancer patients have numerous unique characteristics as compared to non cancer caregivers. Caregivers of cancer patients have more and longer times to provide care, they have more out of pocket expenses, and their schedule is impacted more than caregivers of non-cancer patients. These studies show caregivers of hospice cancer patients are at a higher risk than are those of non-cancer patients.
Sleep problems, anxiety and global self-rated health among hospice family caregivers
Our research also has found that a significant number of caregivers struggle in getting enough quality sleep. Anxiety and depression are also prevalent, as 30-40 percent of hospice caregivers report symptoms of moderate to severe anxiety and depression upon admission into hospice. Despite this, hospice agencies rarely assess caregivers for anxiety and depression.
Hospice caregiver quality of life: Bottom line
Our research, as well as that of others, consistently shows that the quality of life for hospice caregivers is less than satisfactory. These hardworking caregivers are saying they have symptoms of anxiety and depression, they do not sleep well, and they have related health issues. Too often, they feel ignored by their health care team. They feel alone and isolated.
Testing caregiving innovations improve hospice caregiver quality of life
The Lab for Caregiving Innovation is testing several interventions designed to improve the caregiving experience and, as a result, the patient experience. We are testing innovative educational materials for caregivers and online support groups facilitated by research staff. We are currently testing the use of Zoom to bring hospice caregivers into the hospice care plan meetings so they can participate in the plan of care for their loved one. Working with the Hospice Caregiving Network, we are testing a problem-solving intervention that builds caregiver problem-solving skills and focuses on the positive aspects of caregiving. We will soon be testing a photo intervention with caregivers of hospice Alzheimer’s patients to improve their caregiver’s quality of life.
Developing caregiving innovations
Researchers at the Lab for Caregiving Innovation are working on developing and securing funding the next generation of caregiving innovations. New innovations will involve caregiver applications for decision making and symptom reporting, a new tool for hospice teams to display patient and caregiver information, and the application of our problem-solving intervention with hospice caregivers in the palliative care clinics. Making it to our innovations lab most recently are thoughts about the use of virtual reality interventions for caregivers. Watch this blog for much more detail and the new innovations we are pursuing in our mission to build better lives for patients and caregiving families.
Call to action
We would like to ask all health care providers to remember caregivers as they assess patients. Assess the caregiver’s quality of life, anxiety, and depression. Ask them how they are doing. Support them by acknowledging the difficulties that exist in caregiving. Reach out your hand and help caregivers know they are not alone as they seek to care for and protect the people for whom they are sacrificing so much. Listen to one former caregiver share her reflections on her quality of life.