HDSA 2026: Planning ahead can help in Huntington’s crisis care, speaker says
Noticing warning signs, symptom changes is key, per social worker
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A social worker and Huntington’s disease advocate says planning ahead for emergencies — and paying attention to early signs of changing symptoms and needs — can help support better care during a crisis for people with the genetic condition.
The key, according to Carlette McDaniels, a therapist and clinical social worker from New York, who’s also a member of the Huntington’s Disease Society of America (HDSA) Albany Chapter, is advance preparation, and not waiting for a flare of Huntington’s symptoms. Keeping a focus on one’s current health is also important, McDaniels said.
McDaniels spoke at a session last week at the HDSA annual convention, held in Phoenix. In her talk, “Crisis Preparation: What is Needed to Assist a HD Family Member During a Crisis Situation,” the therapist offered advice on how to best notice warning signs and prepare information for medical professionals.
“You plan when you’re not in crisis, when things are going well,” McDaniels said. “That allows the individual [person with Huntington’s] to participate in the planning before any emergency happens.”
Such planning also helps a patient’s caregivers, McDaniels noted, letting them know “what help may be needed.”
Huntington’s is a complex, progressive neurological disorder. It can cause a range of symptoms, including behavioral challenges, cognitive difficulties, and movement problems. One hallmark sign is chorea, or involuntary muscle movements that can resemble dancing.
Take action during the whisper stage, advocate says
As the disease evolves, existing symptoms may become more severe or new ones may appear. This can mean a shift in needs that requires adjustments to the existing care plan. This, according to McDaniels, is often when a crisis occurs — the gap in care leads to emergency situations, such as falls and choking, that force a change.
However, Huntington’s progression isn’t the only possible source of crises. “[It’s] not only an ambulance ride. Crisis can be a breakdown in safety, services, caregiving capacity, or the home environment,” McDaniels said. “What was working is no longer working now.”
“Crisis reveals what overwhelm conceals,” she added.
McDaniels outlined a framework for identifying these types of changing circumstances early, which can help address needs before a crisis occurs. The framework starts with so-called whispers, or subtle suggestions of changing needs, then progresses to full warning signs.
“Ask yourself, what’s building underneath, what’s changed, what was missed, what supports have not kept up with the changing needs?” McDaniels said.
Whispers may manifest as occasional worsening of symptoms, such as increasing difficulty with balance or social withdrawal. However, McDaniels urged caregivers to monitor not only their loved ones with Huntington’s, but also themselves. A caregiver feeling extra tired or worried can be a crisis whisper, she noted.
After the whisper stage, more prominent warning signs may emerge. From the patient side, this may represent larger changes in symptoms, such as “more frequent, irritable, frustrated, explosive outbursts, frequent falls with injury, refusing medication, increased confusion, more pulling away from family and friends,” McDaniels said. From the caregiver side, stress, exhaustion, and overwhelm may be warning signs of shifting needs.
Ask yourself, what’s building underneath, what’s changed, what was missed, what supports have not kept up with the changing needs? … Do you want to respond to a ‘whisper’ or do you want to respond to a crisis?
Huntington’s typically progresses slowly, so careful observation can often, though not always, reveal whispers or warning signs, the therapist noted. McDaniels recommended that caregivers ask people who see the person with Huntington’s less regularly to tell them about changes that may be too subtle to notice on a day-to-day basis.
“Do you want to respond to a whisper or do you want to respond to a crisis?” she asked. Seeking extra care at an earlier point may help prevent a full-blown emergency situation, and healthcare providers at centers of excellence may also see things that a caregiver is not seeing, McDaniels said.
“We don’t want to wait for a crisis to get services,” McDaniels said. “You don’t want to deal with that risk. You can connect with the center of excellence, your social work, your team, and let them know.”
Planning ahead can prepare both patients and caregivers for any crisis
Sometimes, however, crises will still develop, McDaniels noted. When they occur, caregivers may need to repeatedly explain the situation to different healthcare professionals, such as 911 operators, first responders, emergency department nurses, and specialists. At each repetition, there is a risk of missing important information. Additionally, the process can be emotionally and mentally taxing, she noted.
A written crisis plan reduces the risk of losing key information and may ease the caregiver burden. “Just think about how much energy you are preserving from having to retell that story,” McDaniels said.
She recommended preparing a crisis binder for this purpose. This can also help ensure that caregivers understand their loved ones’ needs and preferences.
“The notion is, you are communicating your needs beforehand [so] the professionals can respond in a manner that supports what it is that you want,” McDaniels said.
The binder should include a medical history, with Huntington’s at the top of the list, she suggested. It can also contain emergency contact information and numbers for healthcare providers, such as primary care doctors and specialists. Legal information, such as a power of attorney or guardianship documents, is also important.
Caregivers can also highlight specific concerns or possible complications, such as mobility limitations and swallowing difficulties.
After preparing a crisis binder, the next step is to make sure that emergency contacts and others know about the plan and where to find it. “It doesn’t work if no one knows it exists,” McDaniels said.
Taking these steps may help caregivers be more present to support their loved ones rather than focusing on logistics.
Social worker advocates for holistic approach to care
While an emergency plan is essential, McDaniels also recommends an overall more holistic crisis approach to care that incorporates whispers and warning signs.
“Crisis doesn’t have to be the turning point,” she said. “If you connect with services today, you can then recognize that [there are] unmet needs. If you make a decision today that [you’re] going to listen to the early warning signs, you can tap into your team today.”
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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