News and Commentary Filling the Gap in Care for People Living with Dementia

Dementias are devastating, progressive, and incurable diseases that impact not just the 6 million afflicted Americans but also the 15 million people who are the family/friend care partners of people living with dementia. Dementias are life-altering and eventually life-ending diseases with annual economic costs to the nation of more than $300 billion and incalculable personal costs.

Despite this impact, few physicians and even fewer nurses receive specialized training in the care of dementia patients. This is a glaring deficit in our healthcare and education systems, and one that the University of Washington School of Nursing is committed to addressing through the development of the Dementia Palliative Education Network (DPEN).

The impetus for DPEN arises from the need for profound change in how educational institutions prepare healthcare professionals to help patients living with dementia and their care partners. Incremental change will not suffice. Only bold, incisive action offers a path to meeting both short- and long-term needs. The need for educational practices like DPEN to be implemented broadly is urgent. It is estimated that by 2050 there will be one million new dementia cases annually in the United States. Presently, far too few clinicians are fully prepared to provide the multifaceted care and support required by patients living with dementia and the often-overlooked people who care for them.

Dementia, whether Alzheimer’s or other types, is a complex disease that requires compassionate, capable care that transcends traditional medical, psychological, financial, legal, and social service specialties and boundaries. It is not simply the availability of individual services that are an issue; it is the integration, titration, and coordination of those crucial to achieving an optimal outcome.

Ask virtually any care partner about accessible resources. You will be told that what is available is a patchwork of care most often assembled by the caregiver themselves that is likely inadequate for meeting all the needs that arise. The uncertainty and resulting feelings of inadequacy significantly contribute to the well-documented and historically adverse effects on the health of care partners, often unseen, uncounted, and unrecognized secondary victims of dementia. The majority of patients living with dementia live at home and are cared for by a spouse or other medically untrained family member. These care partners usually receive little to no external support until the caregiver’s physical and mental burnout or worsening chronic illness or adverse behaviors in the patients living with dementia result in the care recipient’s institutionalization.

For dementia specialists, required skills expand beyond a single discipline and encompass a nurse, psychologist, event coordinator, medication specialist, behavioral expert, recreational therapist, speech and language therapist, mediator, financial planner, medical translator, and a good listener. Creating and nurturing dementia specialization that blends all those skills is the purpose of DPEN.

Our team seeks to integrate workforce development, education, research, and visibility in a way that helps RNs and RNs-to-be to see the fulfillment and possibilities that come with investing the time and effort required to become a dementia care specialist.

DPEN program is underway and seeks to serve three populations. We will pilot training with students who will be designated as “neurocognitive scholars.” They will participate in a highly focused, comprehensive program that develops clinical competencies in the full range of skills required of a dementia care nurse-specialist. They will gain varying perspectives on how different cultures, countries, and organizations provide dementia care. The program will include an optional senior practicum or global student exchange.

For existing RNs, DPEN is developing a series of self-paced, virtual training modules tailored to the unique needs and clinical outcomes of novice, intermediate, and expert levels. Those who complete DPEN training and serve as a preceptor to neurocognitive scholars will be designated as “neurocognitive fellow RNs” and awarded a certificate of competency at the end of the program.

The third target population is comprised of students in allied health professions (e.g., medicine, nutrition, social work, healthcare administration). We are developing interprofessional education (IPE) materials that will be piloted in a one-day IPE session with 500+ University of Washington students, with the intent of national dissemination.

The Dementia Palliative Education Network is an innovative and ambitious attempt to confront and alleviate one of America’s most pressing public health dilemmas. The University of Washington School of Nursing is strongly committed to this endeavor, as is everyone associated with DPEN. The program extends the School of Nursing’s ongoing research and educational contributions within the field of dementia care.

We believe that DPEN has the promise of melding existing nursing education with a demonstrated need for specialty knowledge in order to address this high-impact healthcare issue. The nurse-specialists we empower and educate will be the focal point of new and advanced interventions for people living with dementia. We will be the first to celebrate when a cure for dementia is found. For now, DPEN is taking action in order to create and sustain a measurable, positive difference for patients living with dementia and their care partners’ everyday life. We invite you to join us in building this future and assuring that every person, family, and community living with dementia receive timely, high-quality care. 

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