Joann Donnellan from Washington, DC

Caring for Patients with Dementia

Joann Donnellan has a lot of ideas about how to improve our health care system. At the top of her list are better training for hospital staff on caring for patients with dementia, and better communication among medical professionals.

Joann’s story began last spring, when her 79-year-old mother, Beatrice, fell and broke her hip. Beatrice, a former nurse, was diagnosed with a mild cognitive impairment in 1997, which has since progressed to "moderate" stage dementia. Joann’s 82-year-old father, Denis, is still healthy and cares for Beatrice at home with weekly assistance.

When Joann heard her mother had fallen, she rushed to the emergency room to be with her parents and to help them navigate her mother’s care and the hospital’s health care system. Little did she know what a frustrating and exhausting ordeal it would turn out to be.

After the family waited 12 hours in the emergency ward, Beatrice was finally admitted to the hospital. From the start, Joann made sure the hospital staff was aware that her mother suffers from dementia and therefore really didn’t understand that she had broken her hip. Joann found herself repeating that mantra time and time again, even though the information was clearly written in her mother’s chart. She also found that some of the nurses and nurses’ aides didn’t have the patience, understanding, or the empathy to handle a patient with dementia. One nurse remarked, "Why doesn’t she just use the call button if she needs us?" Says Joann, "It got to the point where I made sure I knew who was working which shift to determine if I needed to be there to oversee her care and explain the situation. I just couldn’t count on the hospital staff to read her chart and to understand her needs on their own."

Before Beatrice was operated on, another nurse became frustrated because Beatrice kept taking out her IV. "I asked for an ace bandage to cover the IV," says Joann, "but I never got one. So I improvised myself, wrapping my running shirt around her arm so I could stop holding her arm myself and go to sleep."
Another problem involved the lack of communication and coordination between Beatrice’s regular doctors and the hospital staff, and between the hospital staff and the family. Beatrice’s regular doctors were not initially brought in to share her medical history. As a result, the hospital team had to discover her mother’s medical problems and life challenges on their own and from Joann and her father. Nor did the medical staff take the initiative at the beginning of the stay to talk to Beatrice and her family about dementia-specific services and tools that could make their lives easier. As a result, a family already under enormous stress faced even more frustration.

Joann felt strongly that someone needed to stay with her mother because she wasn’t able to use the nurse’s call button or properly articulate her needs. But Joann didn’t know that she could hire an aide to help watch her mother while she was in the hospital. So Joann — an only child — and her dad provided round-the-clock care for Beatrice. Denis stayed at the hospital during the day, and Joann, who works full-time, stayed overnight — and then headed to work each morning. "It was physically and emotionally draining," she says. "I have a lot of energy, but there is a limit."

Joann reached that limit 12 days after her mother’s surgery. At dawn one morning, Beatrice decided to get out of bed and walk to the bathroom on her own, unaware that she had had surgery for a broken hip. Joann, who was sleeping in the room, quickly awakened and realized that her mother was losing her balance and beginning to fall. Half-asleep, she grabbed her mother to try and prevent the fall. "I was thinking, ‘I’m not going to let her fall and have to begin this process all over," said Joann.

But despite her effort, both she and her mother landed on the floor. What’s worse, during the fall, Joann hit her head on the hospital room countertop. Both she and her mother were taken to the emergency room. Fortunately, Beatrice was fine, but Joann needed 10 stitches above her right eye. "After that," Joann says, "I realized I was tapped out. I had to find a better way to handle the situation, since I had nothing left."

The Campaign for Better CareIt was only then that Joann learned that the whole incident could have been avoided. She learned that she could have hired an aide to watch her mother overnight; she could have requested a room closer to the nurses’ station so that staff could keep a watchful eye on Beatrice; they could have routinely taken her mother to the bathroom every two hours to prevent her from getting up herself; and they could have attached an alarm to her mother’s nightgown that would alert the staff if she got out of bed. "It took 10 stitches over my eye to get the information I needed," she said.

Looking back, Joann wishes that the medical team who cared for her mother had talked with her at the beginning of her mother’s stay about the special challenges facing patients with dementia and the resources that are available to help patients and their family members. She also wishes her mother could have worn a wristband reminding her care providers that she had dementia and that she was at risk of falling again. And, perhaps most of all, she wishes that her mother’s regular doctors — a primary care physician, and a geriatric specialist — had been in contact with the hospital staff and could have helped guide her hospital care.

The experience was frustrating and challenging. But Joann is glad she was there for her parents. "I believe I earned my nursing certificate through this ordeal," said Joann. She can’t imagine what would have happened if she hadn’t been able to help them. "I understand now more than ever that if you don’t have an advocate when you’re in the hospital, you’re in bad shape."