The population of elderly adults in the U.S. continues to grow, leaving many families with the often difficult job of caring for them as they age. In fact, 83 percent of long-term care provided to older adults comes from family members or other unpaid helpers. As the population of older adults grows, so do the expectations of family care — especially for people living with Alzheimer’s disease and related forms of dementia.
The emotional toll of dementia caregiving
If you’re caring for a parent or other adult with dementia, you know firsthand the challenges involved, as care needs steadily increase while cognitive abilities decline. Caregiving can be an honor, but it can also be a heavy burden. Caregivers experience more depression and stress than non-caregivers, and many report retiring early or quitting their jobs because of caregiving concerns.
“Caregivers, no matter what stage their loved one is in, need help, knowledge and support,” said dementia caregiver Sue Marshall.
After Sue’s husband was diagnosed with dementia in 2016, she became his caregiver, dedicating her days to supporting him. Her biggest challenge as a caregiver? The sometimes overwhelming feeling of loss.
“My feeling of loss is very large as we journey through this awful disease,” she said. “My husband has lost his ability to do much of anything on his own and is totally fixed in his chair to watch TV for as many hours as I would let him. At this point in his disease, the doctors say let him do this if it keeps him comfortable. I have lost my partner of almost 45 years, so I am often sad and lonely since all of what we used to do is gone.”
Recognizing this deep need, researchers are hard at work developing innovative ways to improve the lives of dementia caregivers like Sue. Harnessing the power of telehealth, two new programs hope to bring much-needed educational and emotional support to family caregivers across Texas.
New online support for dementia caregivers
At the Baylor Scott & White Research Institute’s Center for Applied Health Research, we have engaged in decades of research, documenting the impact of dementia caregiving on the health and well-being of the family caregiver. We’ve learned a lot about family caregivers and their needs, coming to the conclusion that caregiving demands should be matched by community-based support systems.
But because of various barriers — from geographic distance, to time constraints, to lack of community resources — most caregivers struggle to access these lifechanging support systems. This leaves many alone to provide 24/7 care that can be complicated and exhausting.
Knowing there must be a better way, the Center for Applied Health Research was recently awarded a grant by the National Institute on Aging to develop and test different ways of supporting dementia caregivers with new online tools and supports.
We started by analyzing the features of existing, scientifically proven dementia caregiver programs, then redesigning and reformatting them to be delivered over the internet. We are now in the process of testing two different online interventions — GamePlan4Care and Resources4Care — to see how they impact the lives of real dementia caregivers. Both programs include:
- Online caregiver portal: Both GamePlan4Care and Resources4Care include access to an online caregiver portal with articles and videos covering a variety of topics we know to be important to caregiver health and well-being.
- Dementia Care Specialist: Both programs also include access to a trained Dementia Care Specialist who outreaches participants over phone and email over a 6-month period. One of the two programs is a little more structured, while the other one is a bit more self-paced.
The data and information we get from the study will help us learn more about which specific features of online dementia caregiver programs best meet caregiver needs.
For Sue, the program has helped build her knowledge and ability to cope with the inevitable emotional challenges of caring for her husband.
“Using the different modules in the program opened my eyes to new coping skills,” she said. “The videos, tip sheets and exercises all helped me to better organize my thoughts and increase my confidence that I was doing the best I can.”
We are now recruiting dementia caregivers into our research study from across the Baylor Scott & White Health service area, which includes most of North Texas, East Texas and Central Texas. If you are a dementia caregiver looking for support and you’re interested in helping improve the lives of future caregivers like you, email BSWHCaregiver@bswhealth.org today.