When Susan Shelton’s 99-year old father Chet was in the hospital, he received care that was tailored specifically to his needs as an older adult. Chet is hard of hearing and needed staff to look directly at him when they spoke to him. He also needed to use the closed captions feature on his television. And when her father had an episode of delirium, nurses contacted Susan. She was able to talk to him on the phone, calm him down, and then stay the night with him at the hospital.
Susan saw how impactful this was, and she wanted to bring that model into the community. She and her coworkers at the Anne Arundel County Department of Aging and Disabilities developed MY STORY: a free tool to collect information about the needs and preferences of an older patient or resident in a simple format that can be sent with them when they’re admitted to the hospital or sent for a rehab visit. Staff find this is very helpful, and crucial for learning about people with dementia.
The front of MY STORY has space for 2 photos. One photo is often of the adult with their family or a few of their favorite things. If the adult has dementia, the second photo can be of them as a younger adult, which they may identify with better.
The back of MY STORY gives a snapshot of each individual’s baseline ability to perform activities of daily living. Staff can easily learn how people functioned before they were in the hospital or rehab facility.
The information at the top tells staff what really matters to the person so they can provide personalized care, engage people in topics that matter to them, know what makes them happy, calm, or helps them sleep.
The Impact of Knowing
A MY STORY pilot program was conducted at 14 small (4 to 16 bed) community-based assisted living facilities in Anne Arundel, Howard, and Baltimore counties. The program was well received by clinicians and other caregivers.
How did it help? They loved knowing what was important to each resident to create meaningful relationships and how to care for them beyond their physical needs. For example:
- Mary, a resident with dementia, became anxious and agitated as evening approached. Because of MY STORY, staff knew she’d be more comfortable if she had a cookie, a glass of milk, and an opportunity to sit with staff in a quiet area.
- They learned George’s arthritic pain intensified if he was cold. Staff used warm blankets to make him more comfortable and this greatly improved his quality of life.
The initial goal of the pilot program was to expand the use of the MY STORY to reach 900 community members. The program has already reached about 1,300 older adults residing in assisted living facilities, nursing homes, hospice care facilities, and private homes of those still living independently in the community. On at least 2 occasions it reduced the use of physical restraints on patients with dementia.
And benefits are reaped on all sides. Consider a couple other examples:
- Judy hated to take her daily walk to get exercise. From MY STORY, the staff learned she loved music and dancing. So instead of trying to make her take a walk, they played lively music, and she happily danced with them instead of resisting a walk.
- Bill was very quiet and isolated himself in his room. But he enjoyed sports on TV. Staff discovered they could sit with him and watch part of a game and interact with him one on one. This reduced his social isolation and allowed him to enjoy sports while connecting with others.
Families are able to quickly tell their family member’s story and see them treated as a whole person. Staff can better understand patients’ needs and quickly gain insights on how to be effective, and they can develop a relationship, even when caring for those with dementia.
On the MY STORY link you can play the video which demonstrates that the needs and preferences of older adults are what really matters.
Susan Shelton is the Director of the Assisted Living Program for the Anne Arundel County Department of Aging and Disabilities. She has a Masters in Adulthood and Aging and over 30 years of experience working to improve the care older adults receive in any setting. She believes that what matters to older adults should matter to everyone who cares for them. Visit MY STORY: https://www.aacounty.org/services-and-programs/my-story
Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams. She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn