You can hear the emotion in Nicole “Nicki” Dawson’s voice when she talks about her early work as a physical therapist working with patients with dementia living in a secured facility.

“You just see that there’s this ‘loss of self’ happening,” Dawson says. “And when you sit and you talk to them, you know they’re there. Other healthcare providers would say that there’s little we can do, and I just didn’t agree with that. I knew there had to be something better.”

She would set off on a path to help develop exactly that.

Dawson and her collaborators have created LEAD — Leveraging Existing Abilities in Dementia — a treatment framework designed to provide daily guidance to rehabilitation professionals such as physical therapists, speech-language pathologists and occupational therapists and to improve outcomes for patients.

The publication, Dawson’s labor of love for seven years, is a culmination of decades of clinical experience, an extensive literature review across multiple disciplines, and hundreds of hours conceptualizing the model’s framework with her collaborators and co-authors Katherine Judge, a professor at Cleveland State University, and Ashleigh Trapuzzano ’18, a former graduate student of Dawson. It was published in Spring 2024 in the journal OBM Geriatrics.

At the foundation is the Strength-Based Approach, a common and well-established concept often used in counseling, psychology and social work that hasn’t been brought over to medicine and physical rehabilitation, a key move Dawson and her collaborators wanted to make. The premise is to treat the patient in a manner that targets their capabilities, abilities and interests, rather than try to remedy their deficiencies.

Dementia is complex; it can affect cognitive, behavioral or neuropsychiatric symptoms. And step one of the LEAD framework addresses the simple yet pervasive myth that has troubled Dawson from the beginning.

“I think in our traditional medical model, we focus on deficits, and what they can’t do,” she says. “Whereas with patients with dementia, it’s really focusing on what they can do. What strengths are still available that we can use to help this person manage this chronic illness?”

Judge, a psychologist who was also Dawson’s mentor as a doctoral student, was already using the Strength-Based Approach in practice, specifically for psychosocial intervention and training dementia caregivers on strategies and techniques. Dawson, who earned her doctorate in adult development and aging psychology, drew from her physical therapy clinical expertise, in particular building strength and balance in geriatric populations.

The LEAD framework gives clinicians a roadmap for daily practice, providing specific techniques and interventions for addressing barriers to care, managing behaviors, and engaging effectively with patients and their caregivers.

The program is structured around the three key areas that Dawson and Judge call “the 3 C’s”: communication, cognition and coping.

For example, communication strategies may include tactics such as rephrasing questions to focus on immediate rather than short-term memory, using physical cues, avoiding unnecessary details and asking questions that can be answered in short responses or by selecting from choices. The framework’s cognitive strategies recommend the therapist use spaced-retrieval, external memory aids and teaching activities by modeling, among others. Coping strategies can include adjusting the environment to correct under- or over-stimulation, substituting behaviors, and reframing issues to decide whether it truly presents as a concern.

The approach is tailored and highly personalized to the patient, incorporating their abilities and interests. It’s what they like and want to do. It’s what they do well.

A therapist with a patient who is an avid gardener may incorporate gardening activities into therapy sessions, encouraging using a sitting stool rather than squatting to ensure proper balance. If a patient responds well to visual cuing, the clinician can be sure to demonstrate tasks rather than rely solely on verbal instructions. If a patient was formerly a schoolteacher, a therapist could incorporate activities using a chalkboard or whiteboard to facilitate standing activities.

“It’s really me as the therapist that has to shift,” Dawson says. “If my patient has high blood pressure, the way I approach them has to be different. If my patient has Parkinson’s disease or dementia, the way that I approach them is different. It doesn’t mean that because of their diagnosis, that they can’t benefit from the work that we’re doing together. I just have to make adjustments based on their abilities.”

An estimated 5% to 7% of the population are living with Alzheimer’s disease and related dementias worldwide and these numbers are expected to double every 20 years.

Dawson wants to reach more of this population and further test out her framework. She and Judge have developed a 12-hour training program for rehabilitation professionals based on the LEAD framework and completed a pilot study with published findings in the journal Dementia. Results showed it increased the therapists’ knowledge about dementia, improved their confidence and changed their practice patterns when providing services to those with dementia.

The researchers are actively looking for partners, ideally a large nursing home or a major outpatient rehabilitation center, where they can deliver the same training to the rehabilitation professionals on staff and conduct research on efficacy.

Dawson wants people to share the confidence she has that people with such conditions can actively improve the quality of their lives.

“It’s all about helping clinicians, families and researchers understand that while there’s not a cure or treatment for the disease process, that there’s still a way to help manage it so these patients can be as functionally independent as they can for as long as they can,” she says.