TEMPLE, TX — Beth Allen noticed her husband Bill's memory wasn't the same. Six years ago, he started to forget people's names, names he should know.
"He began to have trouble remembering people's names and he's always been better at that than I have ever been," Allen said.
Realizing it could be early signs of dementia, she knew she would be taking care of him full time, very soon.
Taking away his driving abilities, after going through hip surgery, Allen was ready to become a full-time caregiver but she needed help and her doctor recommended the D-Care Study.
This study will include more than 2,000 people with dementia and their caregivers at four sites in the United States and will compare the effectiveness of three dementia care interventions.
The three different types of care include Enhanced, Community-Based and Health-System Based Care.
HEALTH-SYSTEM BASED CARE
Allen is working under the Health-System Based Care, which provides a Dementia Care Specialist who works within the health care system plus 24-hour access to an on-call provider, online links to local services/resources, and 24-hour Alzheimer’s Association Helpline.
Shannon Drew is the Lead Dementia Care Specialist at Baylor Scott & White Temple and has worked with Allen the past year. As Bill's memory has gotten worse, Drew has worked with Allen day in and out to make sure they both are receiving care they need.
"With the size of this study we're able to validate how important it is that not just the patient with dementia not just be followed and monitored but their caregiver also," Drew said.
Drew has experience as a history of dementia runs in her family. She loves being able to help and take care of those while understanding what they feel.
Allen spends all day and night caring for her husband. Drew says a caregiver's job is endless.
"It's called the 36 hour day and it truly is that," Drew said.
According to the WHO, around 50 million people have dementia worldwide, and there are nearly 10 million new cases every year.
Bill's memory may be getting worse, but Allen knows she made a commitment 60 years ago, and luckily his sense of humor hasn't gone.
"I married him, you play the hand your dealt," Allen said.
Along with help from Drew, Allen has the following help provided to her in the Health-System Based Care.
- Care is provided by a nurse practitioner or physician assistant called a Dementia Care Specialist who can write prescriptions, and will have access to the medical records to improve working with the doctor
- There is an in-depth, in-person visit at a medical office to go over: medical history, any concerns, and provide education & support
- The specialist works with the person and his/her doctor to make a care plan for memory issues that address both patient and caregiver needs
- Face-to-face visits every year, and in-between visits, as needed
- Contact after a hospitalization or emergency department visit to see if you need help
- Access is available 24 hours a day, 365 days a year
Ann and Dale Runnels have been happily married for 42 years, except the last 3 years have been challenging.
Dale suffered from 3 strokes and after living through his third, Runnels noticed his memory would come and go.
"When I pulled in the driveway, he said it was real nice meeting you and working with you. And I started laughing," Ann Runnels said. "I went to get out of the car and he said what are you getting out of the car and I said we live here, and he said no I live here."
Dale shortly after was diagnosed with Dementia and Alzheimer's. Ann Runnels was then introduced to D-Care and placed under the Community-Based Care side of the study.
The Community-Based care provides a specially trained Care Consultant at a community agency plus on-line links to local services/resources, and 24 hour Alzheimer’s Association Helpline.
"It was amazing, I bless that Study so many times," Runnels said.
After in-depth interviews with the Care Consultant they develop what is called an action plan.
"And these action plans are resources that could help the family caregiver," Dr. Alan Stevens said.
Dr. Alan Stevens is the Director of Center for Applied Research at Baylor Scott & White Health. He says this study is so important today because of the growing demand of those diagnosed with Dementia.
"Currently in Texas there's about 400,000 individuals diagnosed with Dementia and Alzheimer's," Dr. Stevens said. "If you look at 2018 to 2025 we'll see a 28% increase in that number."
Alzheimer's is also the 6th leading cause of death in the United States, according to the Alzheimer's Association.
Runnels wanted to be proactive with her care for her husband but things started to become violent.
"He was hitting me, and twisting my arms and that was not my husband any longer," Runnels said.
She soon needed to admit Dale into a memory care center for added help, a decision that was made with the help from her Care Consultant in the D-Study.
Living alone, Runnels thanks the times when she can pick up her phone and call someone for advice.
"The person you married is gone, just like they died and what you have left is just another person. A stranger," Runnels said.
Throughout the pandemic, Runnels has had to live away from her husband and even when Dale would forget who she is, he still made a point to ask his wife out.
"He said I would really like to see you again maybe we can start dating, and at first, I was just furious," Runnels said. "And then I started laughing and said he's still attracted to me after 42 years."
As Dementia and Alzheimer's effects more than the one losing memory, the D-Care study is working to help bridge the gap between the heartache and loss.
"We are looking for ways to make sure we provide not only the best hospital care," Dr. Stevens said. "But we know care for a dementia patient spans across a continuum of really care delivery arenas, most importantly supporting that family caregiver."
Supporting the family is what Runnels saw in this study and couldn't be more happier with the help she's received through the ups and downs.
"I've realized that there are resources out there and I've learned how to reach out and get them," Runnels said.
In Runnels Community-Based care things like the following are also provided;
- Practical and emotional support given by a trained social worker or nurse called a Care Consultant when you need it
- A plan of action to address the concerns of both the person AND the caregiver
- Help finding health and social services
- Support to better organize and involve family members and friends in helping with care giving responsibilities
- Care, support, and services over the phone or computer; no in-person visits needed
- Regular check-ins and access by phone or email as needed
Baylor Scott & White Temple currently has 277 enrolled into the study. When a patient and their caregiver enrolls they are in the D-Care study for 18 months. Baylor Scott and White Temple is hoping to enroll between 500 and 700 patients and caregivers in total.
The Temple location is also looking to expand this study into the Baylor Scott & White locations in Waco, Bryan, College Station and Brenham.