Innovative Approach to Dementia Care: The Pittsburgh Regional Dementia Caregiver Training and Employment Program

In December 2022, the Henry L. Hillman Foundation awarded the University of Pittsburgh a $500,000 grant to improve training of individuals caring for persons living with dementia. The grant, given through the Hillman’s Healthy Aging Challenge, provides significant funding to create the Pittsburgh Regional Dementia Caregiver Training and Employment Program. This program enhances and expands upon pilot work in caregiver training conducted by the University of Pittsburgh’s Division of Geriatric Medicine and UPMC Senior Communities. The program seeks to strengthen the number of both professional and family caregivers trained in dementia care across all communities of Allegheny County. It also hopes to encourage young adults to consider caregiving careers.

Alzheimer’s Disease and Related Dementias: A Growing Health Care Burden Locally and Globally

Alzheimer's disease (AD) and related dementias continue to increase in prevalence, locally and globally. In the United States and in Allegheny County and the greater Pittsburgh region, AD is the sixth leading cause of death.

More than six million people in the U.S. live with AD or other forms of dementia, and that is likely an undercount of the true numbers. These numbers are growing, and consequently so is the need for specialized care for this patient population. In the Pittsburgh region, more than 26,000 older residents are estimated to be living with dementia. Importantly, access to dementia care and trained caregivers is not equal across all communities with significant, documented racial disparities.

The specialized care demand for individuals living with dementia far surpasses the available capacity of trained professional dementia caregivers. As a result, care often falls upon the shoulders of family members and friends. The Alzheimer’s Disease Foundation, in its 2023 Facts and Figures Special Report estimates that, “more than 11 million Americans provide unpaid care for a family member or friend with dementia, a contribution to the nation valued at nearly $340 billion.”

To address this critical shortage and in response to the Pennsylvania Department of Aging’s “Blueprint for Strengthening the Direct Care Workforce”, the University of Pittsburgh created its Pittsburgh Regional Dementia Caregiver Training and Employment Program. To improve access to training, and ultimately care, the program increases efforts to reach caregivers residing in underserved or underrepresented communities.

The multidisciplinary program is led by experienced clinicians and dementia care experts from the UPMC Division of Geriatric Medicine, the Departments of Neurology and Psychiatry, and the Alzheimer’s Disease Research Center (ADRC), and include David A. Nace, MD, MPH (Geriatric Medicine); Oscar Lopez, MD, FAAN (ADRC); and Ellen Whyte, MD (Psychiatry).

The program and grant are also supported by UPMC Senior Services, and its Educational and Consultative Services, who have collaborated to develop the training curriculum and conduct the educational training modules. The program provides training session for professional caregivers, family members and friends of those living with dementia, and young adults seeking to learn more about dementia and caring for individuals living with various forms of dementia. April L. Kane, MSW, LSW, UPMC Senior Services project director, Ronnie Edwards, MSW, LSW aging educator, and Christine Cassese, BS, UPMC Senior Services coordinator and dementia trainer lead participants through each training module.

The first year of the grant was devoted to revising and expanding the training program curriculum and establishing the necessary infrastructure, support, and outreach to begin conducting the training sessions in 2023. The first of the training sessions with participants began in June 2023.

Hands-on Training Program

The in-person, hands-on training program consists of three modules designed to provide a comprehensive understanding and approach to dementia care. The training curriculum enables caregivers to manage common challenges they may encounter and fosters practical skills development. Participants are taught to leverage a person’s reserved cognitive abilities, promoting engagement in daily tasks and social activities.

Module 1, titled “What is Dementia? How Do We Help?” provides participants with a basic understanding of what dementia is and how it can affect individuals across a spectrum of presentations. The module provides learners with an appreciation of the cognitive changes occurring in the brains of people living with dementia, and by doing so, enable more effective communication using visual, verbal, and touch cues.

This first module provides a baseline understanding of dementia, a particular need for family members who might be new to navigating this journey with their loved one. An important part of this education is debunking misconceptions about dementia, such as the common myth that memory loss is a standard part of aging or that Alzheimer's and dementia are synonymous. It also emphasizes that not everyone with dementia will manifest memory-related symptoms.

The second training module, “Approach to Brain Change,” focuses on learning practical caregiving skills and the Positive Physical Approach (PPA)™, as well as the Hand-under-Hand® technique, enabling the caregiver to help dementia patients maintain aspects of independence.

One significant focus of the training is the impact of dementia on sensory perceptions, with vision being a primary concern. The training makes participants aware that vision changes can be both a natural part of aging and influenced by dementia. Through sensory exercises, participants are given an opportunity to empathize with those affected by dementia. For instance, participants use special glasses to simulate visual disorders like macular degeneration and cataracts, which can be compounded by cognitive impairment in dementia.

Module 3, “Team Approach to Unexpected Behaviors,” targets the management of dementia-related behaviors, which can vary widely person to person. This aspect of the training provides guidance on how to identify dementia-related behaviors as potentially preventable nonverbal communications or expressions of unmet needs. The training also educates participants on how to intervene using a team-based resident centered approach to prevent or decrease triggers of dementia-related behaviors.

For example, participants apply their learning to practical scenarios, discussing potential symptoms and behaviors they might encounter and brainstorming strategies for addressing challenges of caregiving, for example dealing with repetitive questions.

Learn more about the program.