Dementia caregivers urgently need early access to palliative care support

Just as people are learning to live with COVID-19, living with dementia is becoming an increasing reality for 6.5 million older Americans and their 11 million family caregivers. A new study reported that older people infected with COVID have as much as 50-80 percent higher risk of developing Alzheimer’s disease within a year than those who did not have COVID. Another recent study found that infections are associated with increased risk of some neurodegenerative diseases including Alzheimer’s and Parkinson’s diseases later in life.

It is urgent to develop better systems and models of care and support for people living with dementia and their family caregivers to avoid unnecessary hospitalization, and to cope with challenges during care transitions. With no cure in sight, dementia accounts for one-third of deaths among older Americans. Characterized with often slow and uncertain progression, dementia can span between an average of four to eight years after the diagnosis. Up to 40 percent of people with dementia spend an average of 40 percent of time in the severe stage. As dementia progresses with increasing need for care, those living with dementia get hospitalized often, up to three times more than others without dementia. Their Medicare expenditure is almost three times that of their non-dementia peers, with an average cost of $21,024, compared to $7,576.

For those with dementia, being in the hospital is something to avoid if possible. That is because hospitalization often comes with unintended, harmful consequences such as delirium, psychological distress, falls, procedure-related complications, undertreatment of pain, and even death.

For people with dementia, it is their family caregivers who are responsible for not only managing but also providing essential daily care and sometimes complex medical and nursing tasks after hospitalization, such as wound care, managing pain and administering pills or injections. A 2022 report shows intensified caregiving demands during this time of care transition affect caregivers’ ability to manage care and capacity to handle emotional, physical, financial and other stress. Yet, a 2017 report shows there is inadequate education and support for these families, which can make managing the transition from hospitals back to home a harrowing experience for many.

It is critical to start referring people with dementia to palliative care support early in the dementia trajectory. Palliative care — which is delivered by interdisciplinary teams in over 80 percent of U.S. hospitals and in various community settings — educates and supports family caregivers in decision-making and improves symptom control and quality of life for patients with life-threatening illnesses such as those with dementia. Proactive palliative care is a promising holistic model of care that can reduce unnecessary hospitalization and enhance quality of life and care for these families.

Next, it is crucial to provide education and support for family caregivers starting from the moment of hospital admission and continuing even as family members return home to the community in a way that is cost-effective. As shown by research, including my team’s studies, caregivers need education, training and practical support during care transitions. This can come in the form of support by community health workers.

Because such health workers are trusted allies of the community, they can effectively bridge cultural gaps between vulnerable patients, family caregivers and the health care system to address their needs. A 2021 report shows there is a small but growing number of community health worker programs for people with dementia and their family caregivers.

Policymakers, administrators, community leaders, health care providers, families and individuals need to increase efforts to create and offer programs to target education, screening and navigation support needs for families, and to help maintain caregiving and their own well-being.

Understandably, efforts or attempts to transform the historically fragmented health care system seem like an impossibly long, arduous and frustrating process. Although legislative efforts to support dementia family caregivers exist at both federal and state levels, much more work needs to be done. Many Americans may now know a family member with dementia, or a caregiver of someone with dementia. Perhaps they will become that person with dementia or will care for someone themselves. 

Although there is no singular experience of what it’s like to live with dementia, dementia impacts so many lives in profound ways. It is important to encourage all stakeholders to address the problem with simple, evidence-based solutions to transform care and support for those with dementia, so each person lives their life as best as possible with dignity.

Jung Kwak, PhD, MSW, is an associate professor in the School of Nursing at University of Texas at Austin, a Public Voices Fellow through The OpEd Project and a 2021 Sojourns Scholar Leader.