Addressing Family Caregiver Needs in a Disease-Specific Context

By Holly Vossel

Patients with longer disease trajectories can have more complex needs compared to others. The trend has family caregivers facing significant challenges, with hospices employing various strategies to address them.

Some of these patients have longer hospice lengths for stay and also need improved upstream support, according to Diana Franchitto, president and CEO of HopeHealth. The nonprofit health system provides hospice, palliative and dementia care in Massachusetts and Rhode Island.

Family caregivers need access to education and resources well before a patient becomes eligible for hospice, Franchitto said. Having person-centered, disease-specific approaches can help with families’ greatest long-term needs such as health care system navigation and providing emotional, psychosocial and practical support, she stated.

“The hospice has to adapt as these chronic diseases have grown,” Franchitto told Hospice News. “It can be a more gradual decline for the patient, and that means it’s impacting the caregivers with [the] time and intensity of this journey. It is working in a really meaningful way to help the stressors impacting caregivers, like their physical tasks, anxiety or loneliness that can be significant. We have to get creative and figure out what would best meet the needs of caregivers in some of these extended health care situations and journeys.”

Longer, complex journeys

Among the conditions with longer trajectories are Alzheimer’s, dementia, certain cancers, stroke or heart disease, Parkinson’s, Multiple Sclerosis (MS) and Amyotrophic lateral sclerosis (ALS). Cancer, organ failure and dementia or neurodegenerative diseases are the three leading “typical illness trajectories” among patients with progressive chronic conditions, according to a study published by British Medical Journal (BMJ).

Patients with these conditions do not have end-of-life trajectories that follow a “straight line,” said Kelly Sparr, co-founder and executive director of The Grace Space, a hospice facility in Nebraska. Family caregivers often lack an understanding around what to expect and how to provide support, according to Sparr.

“For many families, serious illness comes with a long and confusing trajectory,” Sparr told Hospice News in an email. “Diseases like dementia, Parkinson’s, heart failure or MS often unfold slowly, with unpredictable changes along the way. Caregivers are not only managing physical care, they are [also] navigating constant emotional uncertainty.”

Longer-term illness trajectories often result with family caregivers experiencing higher levels of burnout, emotional distress and physical strain, Franchitto said. Hospices need a five-pronged approach to improving family caregiving support. She said this includes:

• Education around practical skills for assistance with activities of daily living (ADLs) and medical or physical needs

• Continuous emotional validation and support in peer group or individual settings

• Technology-enabled systems that help improve timely access to clinical support

• Strengthened emphasis on self-care and sustainability in addressing their own emotional, physical and spiritual needs

• Person-centered and disease-specific grief support

Building long-term infrastructures

Every disease brings unique challenges and specific challenges for family caregivers, said Lana Wilhelm, founder of the Stroke Caregiver Connection. Wilhelm, a former intensive care unit and home health nurse, is also a family caregiver advocate and author.

Family caregiver support is in an infant state when it comes to sufficient resources and respite, she indicated. For instance, patients who have suffered from a stroke may have different physical limitations that evolve over time, as well as behavioral or cognitive changes. Managing pain and symptoms alongside emotional needs for longer periods of time can take a significant toll on family caregivers, according to Wilhelm.

“With conditions such as a stroke, it’s a marathon, not a sprint,” Wilhelm told Hospice News. “It’s long-term planning with caregivers hungry for information and support that just is not out there yet. There’s an opportunity to fill those gaps. We’re seeing more younger stroke survivors with limited resources for caregivers and families all over the country. The caregiver is just as much your patient as the hospice patient. Thinking outside of the box to really help solidify that relationship between the medical team and caregivers.”

Having greater access to bereavement services further upstream is crucial to improved caregiver support, according to Sparr. Longer disease trajectories can result in complicated and anticipatory grief among loved ones, with primary caregivers often experiencing particularly difficult emotions, she indicated.

Consistent communication and outreach are key to addressing bereavement needs, Sparr said. Family caregivers need spaces to emphasize with others in similar situations to their own. Also important is receiving education around death and dying processes alongside practical resources for funeral and memorial planning.

“There is a particular kind of grief that begins long before death,” she told Hospice News in an email. “Families often find themselves grieving in real time … The experience can feel deeply disorienting. Caregivers are not just supporting a loved one through dying — they are learning, moment by moment, what it means to live in the in-between. Hospices have a unique opportunity to expand the way we think about caregiver support.”