Keeping Memories Alive: Caregivers use past life to help those with dementia and Alzheimer's

SIERRA VISTA, Ariz. (KGUN) — Two pieces of paper, that’s what’s left of a lifetime of stories from one woman who lost her life to dementia, in Sierra Vista. On the two pages are stories she told her family, so her memory and part of their family history could live on after she passed.

The stories also helped her caregivers understand the person who didn’t remember most of herself, allowing them to build a connection with their patient. Shelby Weller, Executive Director for Casa de la Paz Hospice, says having the memoir-type of document helped her and her team see the person the patient once was, because she couldn't tell them herself.

"(It) let her live," Weller said of the document. "(It showed us) the person she really was. The person we knew was not her.

"People need to remember dementia is a disease."

She says it’s important to know who a person was prior to their dementia diagnosis. That way, care providers can help build trust and treat patients like the person they see themselves as.

“It’s just a few pages but it talks about his mom and where she was born, and the games they would play,” Weller said.

She says knowing a patient’s likes and dislikes can help a caregiver or volunteer connect with the patient, even if they can’t speak. Weller says some of the volunteers that sit with some of their patients often bring them something they like, or talk to them about their interests to help with relationship building, but to also make the patient feel like a person.

“You don’t always know if you’re making that connection but sometimes people get less anxious," Weller said. "They may not be able to tell you what’s in their mind but when they hear something that’s sort of familiar or see something, you can see them relax.”

Caregiver support, whether through hospice or assisted living facilities, can help provide 24-hour specialized care to patients. They help patients complete daily tasks like eating, bathing and changing. Casa de la Paz Hospice uses volunteers to help support families who are the sole caregivers. The volunteers will spend time with the patient to give families a break to run errands or focus on their own self care.

Karla Aguilar, Director of Nursing at Haven Health Sierra Vista, says it’s important to remember the needs of the patient, not just their diagnosis. Including having activities, like Bingo and movie time, in their specialized care unit —as they do for their general population.

“With Dementia and Alzheimer’s we can’t forget that these are people," she said. "The best thing we can do with dementia and Alzheimer’s patients is listen. Listen to them and where they are at.”

Aguilar says remembering they are people allows a natural connection to be made, which can help see when they are in pain or need something. She said simple changes in their routine, like sitting in a new place, can indicate something may be wrong. Having a connection with her patients makes easier to help patients when they are most vulnerable and helping them not feel alone.

“I had a connection where when she would become agitated, she would grab my hands (and the only word she'd say is sorry)," Aguilar said. "I am going to be one of the last people taking care of her and this is the impact I want her to have in her life that she’s not alone and we care about her.”

Weller says people often associate hospice with death but the reality is people can be on hospice as soon as they receive a terminal diagnosis. She says more than half of Casa de la Paz Hospice's patients have dementia as a secondary diagnosis. Having hospice care can provide more resources to patients and their families, even if a patient already has a caregiver.

“I don’t think there will ever be a time where we’re going to (say) ‘no, you don’t have to step in’ (to hospice nurses)," Aguilar said. "The more care the better.”

She says Haven Health Sierra Vista has a specialized care unit, which is a secured section of the facility intended for wanderers and those with memory-related health problems. But she says there are patients there with a dementia diagnosis that live and interact with the general population because they don't pose a threat to their own safety, like someone who could wander out of the building and forget why they left.

Weller and Aguilar listen to their patients to provide the best possible care, but they encourage families to listen to their loved ones and take note of their stories, so family histories and the memory of their loved one lives on long after they pass.