HDSA 2026: Reframing can help caregivers navigate challenges
'You don't get to abandon the boat,' so 'adapt,' social worker says
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Understanding underlying disease processes, reframing challenges, and using self-care techniques can help a person caring for someone who has Huntington’s disease build a sustainable caregiving practice, according to social worker Amy Lemke, PhD.
Caring for a Huntington’s patient is like captaining a boat through a storm, Lemke, clinic coordinator at the University of Iowa’s HDSA Center of Excellence, told the Huntington’s Disease Society of America (HDSA) annual convention, held last week in Phoenix, in a presentation titled, “Caring for the Caregiver: Steady Through The Storms.”
“You don’t get to abandon the boat,” she said. “Someone you love is on board, depending on you. So you adapt.”
Huntington’s is a genetic condition that causes significant brain damage over time. This damage triggers the sympathetic nervous system, which controls the fight-or-flight response and suppresses logical decision-making processes.
That can lead to progressive changes in behavior and personality, Huntington’s symptoms that Lemke said may be particularly challenging for caregivers. “We’re dealing with someone that’s experiencing changes in the organ that makes them them,” she said. These shifts may result in an ambiguous sense of loss and mourning, she said.
‘Running on empty’
Other caregiving challenges are related to the underlying genetic cause of Huntington’s, which may put family members — who are often caregivers — at risk of the neurodegenerative disease themselves. Questions about genetic testing and inheritance may cause extra stress.
As caregivers navigate these aspects of the disease, they are also dealing with increasing logistical tasks (especially when there are children), emotional burdens such as frustration and exhaustion, and cognitive challenges. This “triple load,” combined with the disease’s unpredictability, can make Huntington’s care particularly exhausting, said Lemke.
A caregiver is “responsible for making sure all these bills are paid, making sure all the forms are signed for school, making sure that the person with HD [Huntington’s disease] has everything that they need while I go to work,” Lemke said. “It’s constant decision-making, and I’m doing this alone, and that gets really, really heavy,” she said.
“At some point, the storm isn’t the only problem. The captain is now running on empty,” Lemke said.
Caregiver chronic stress can lead to hypervigilance, or a constant, heightened awareness of potential threats. “Hypervigilance also keeps your own sympathetic nervous system elevated and running high,” Lemke said. This means that, like the people they are caring for, caregivers can have trouble focusing and problem-solving.
Lemke identified a number of “storm generators,” behavioral symptoms that can create particular turbulence for caregivers. Being aware of these potential sticking points and reframing the problems they cause may help make the process easier, she said.
One such symptom is apathy, which is related to changes in the brain that make it more difficult for people with Huntington’s to initiate new activities. Lemke suggested caregivers shift their perspective on apathy to account for these underlying disease processes.
“They’re not choosing not to engage,” she said. “Their brain is just not generating the start signal.”
Getting stuck in repeated loops of thoughts or actions (perseveration), difficulty adjusting to change (rigidity), and lack of insight (anosognosia) are also potential storm generators, Lemke said.
As with apathy, she recommended that caregivers view these symptoms as neurological rather than willful. “It’s not going to respond to logic,” she said. “It’s just not; it is stuck. It is stuck in a part of the brain that has changed.”
This reframing may make it easier to view the caregiver’s loved one as separate from the disease, Lemke said.
Practical strategies can make life easier
In addition to reframing challenging symptoms, Lemke recommended caregivers reframe their own practices. Rather than trying to change their loved one’s behavior, they could consider trying to influence them more subtly, she said. Breaking problems into manageable steps and being ready to compromise may also reduce frustration.
For example, if caring for someone who is too apathetic or rigid to do necessary tasks, caregivers may find a smaller task that feels more achievable.
Lemke also noted that acknowledging and validating the emotional experiences of someone with Huntington’s can go a long way. She suggested identifying “what’s really triggering this [behavior], and saying, ‘I know you’re upset. I see that you’re stressed. I understand you’re mad.’”
Practical self-care strategies may help caregivers avoid burnout. Lemke recommended using the good enough standard. Taking a “micro respite” to stretch, exercise, or get a cup of coffee can “reset your overactivated sympathetic nervous system,” she said.
Huntington’s causes dementia, so caregivers can look to resources such as Positive Approach to Care, the Hope Floats podcast, and a weekly ask an expert program from the Dementia Society of America for added coping advice, Lemke said.
Above all, she said, caregivers should give themselves grace. “I think the goal here is not to become a perfect caregiver when you’re dealing with a very complicated, imperfect disease process,” she said. “The goal is to be a sustainable one.”
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America’s annual conference June 25-27. Go here to see the latest stories from the conference.
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