An update from the University of Washington Dementia & Palliative Education Network (DPEN)

Have you ever noticed that no academic institutions offer a degree in “caregiving”? You’ve heard children say they want to be a nurse or an astronaut; have you ever heard they want to become a caregiver?

Caregiving involves offering oneself to support and sustain another person. Seldom does someone envision becoming a caregiver, yet most of us will take on that responsibility at some point throughout our lives. For millions of people, caregiving is an unpaid task for which they have inadequate preparation, little inclination, and virtually no support.

An increasing need for support for caregivers

As the population ages, the need for informal caregivers is increasing due mainly to a steady climb in the number of people living with Alzheimer’s disease and other forms of dementia. The majority of individuals living with dementia reside in the community. Therefore, the amount and intensity of care needed to meet their complex needs can lead to years of gradual withdrawal from social activities and connections and a decline in the health and well-being of the caregivers.

Caregiving can bring many joys, especially when the care recipient is doing well. However, these moments of respite can rapidly decrease when a loved one is in decline. Informal caregivers are tasked with providing what is often complex, multifaceted, and skilled home care, yet they are asked to do so with limited preparation and no formal training.

Understandably, this lack of training and experience leaves many caregivers feeling unprepared and unsupported by healthcare providers and the healthcare system. We do not send a first-year trainee to perform complex medical procedures. Yet, every day millions of family members and friends are tasked with making decisions about aspects ranging from determining what foods conflict with which medications to deciding whether a skin irritation is an infection requiring medical attention. Due to inadequate knowledge and skills, family caregivers may be unfamiliar with the type of care they must provide or the amount of maintenance needed. They may not know how to access and best utilize available resources. This constant state of uncertainty is anxiety-provoking and highly stressful.

The majority of caregivers report learning crucial aspects of complex illness management independently. Caregivers who perform medical and nursing tasks are two times more likely to experience higher caregiver burden levels. Furthermore, the ethnic/cultural minority groups living in rural areas carry the brunt of the care burden and information chasm. These individuals live in areas where healthcare access is limited, alternatives are often nonexistent, and resources (financial and human) are scarce.

How UW DPEN is working to help

Caregivers want to do it right, but that is not possible without adequate resources. My 2017-19 Cambia Health Foundation Sojourns Fellowship focused on creating information resources for caregivers of older adults and people living with dementia. This work was later expanded, culminating in the launch of the University of Washington Dementia & Palliative Education Network (DPEN). DPEN is a team of researchers, nurses, faculty, and other multidisciplinary specialists working to improve the lives of older adults and people living with dementia. DPEN aims to transform and elevate older adult and dementia care by empowering nurses and other healthcare providers with the knowledge, authority, and training to provide comprehensive and equitable care and to develop partnerships with family/friend caregivers.

As with many aspects of our healthcare system, we can close gaps in care and improve accessibility only when we fully deploy suitably trained clinicians to provide the missing pieces. One of the central goals of DPEN is to develop nursing education specifically directed at graduating individuals with the requisite skills to transform how we care for people living with dementia and those who care for them.

Cultivating clinician-caregiver partnerships is a core guiding principle necessary to transform the future healthcare ecosystem. The partnership triangle includes the patient, the clinician, and the caregiver. This triadic model elevates a caregiver from the role of bystander to an active participant and surveillance system in care planning — someone who is honored and robustly supported by health systems rather
than disregarded or ignored.

As the first step toward this transformation, the DPEN team, in collaboration with the Alzheimer’s Association Washington State Chapter and the Washington Dementia Action Collaborative created a free interactive toolkit entitled, Partnering with Your Healthcare Provider. This toolkit introduces the partnership model and contains video scenarios demonstrating how caregivers can best prepare for healthcare visits, discuss their needs, and engage in collaborative care planning. The toolkit includes care, medication and appointment logs, and other practical tools.

Nationwide policy initiatives focused on identifying and systematically engaging family/friend caregivers in their care recipients’ care planning and health management are urgently needed. Caregiving does not have to be a lonely, isolating, and depleting journey. We must mobilize the community and healthcare resources and develop best practices that assure ongoing partnerships and full caregiver support.

National policies aimed at achieving this goal are beginning to emerge. They include the CARE (Caregiver Advise, Record, Enable) Act, designed to assist family caregivers by helping to ensure a smooth transition when care recipients are moving between their home and hospital; Medicare reimbursement for cognitive assessment and care planning services, aimed at improving detection, diagnosis, and care
planning and coordination for patients living with dementia, and their caregivers; and Medicare reimbursement of chronic care management.

Progress is being made, but progress requires a sustained effort on the part of those with an interest in seeing substantial, meaningful change. What is needed is far more than incremental adjustments. What is needed is a major rethinking, re-envisioning, and revamping of the entire strategy for integrating informal caregivers into the healthcare system. Caregivers must be given the respect, status, and resources they need because they are providing the unpaid, day-to-day care that is sustaining millions of people living with dementia and others with chronic conditions.

Rosalyn Carter once said, “There are only four types of people in the world: (1) those who have been caregivers, (2) those who currently are caregivers, (3) those who will be caregivers, and (4) those who will need caregivers.” This is why all of us should be engaged and invested in the pursuit of better care for caregivers and those for whom they care for.

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DPEN UPDATES

UW School of Nursing Long-Term Care Externship: New autumn cohort: Final Projects from inaugural cohort: https://dpen.nursing.uw.edu/education/ltc/spring-2022-final-projects/

2021 UW QSNA Winner Travels to Sweden for Grand Ceremony: https://dpen.nursing.uw.edu/visibility/uwqsna/trip-to-sweden-2022/

2022 Alzheimer’s Association International Conference: Team member Lyndsy Vasquez presented a poster on the LTC Pilot Externship at AAIC in San Diego, CA. AAIC is the Alzheimers Association International Conference held in San Diego this past August 2022. It was a wonderful experience, and it was an honor to be able to meet others passionate about improving the lives of those living with dementia from all over the world. In addition to the presentations, there were some innovative up-and-coming technological advances and new pharmaceuticals that could possibly make an impact!

2022 Gerontological Society of America Symposium: DPEN co-directors Tatiana Sadak & Soo Borson with team members Emily Ishado, Jingyi Li, and Yuanjin Zhou presented a symposium centered around care partner wellness and resilience at the GSA conference in Indianapolis, IN.