HDSA 2025: Long-term care transition requires communication
Social workers at HDSA convention share tips for managing change
Long-term care facilities can help people with Huntington’s disease thrive, and successfully managing the transition into long-term care requires cooperation and communication from everyone involved, social workers said.
Caregivers need to pay attention to “indicators,” assessments of what a person can do without assistance — that can involve anything from dressing and using the toilet to driving and managing finances — and use those to guide care decisions, said Carlette McDaniels and Susan Reynolds, social workers with the Huntington’s Disease Society of America (HDSA).
The pair shared this and other tips in a talk, “Care Mapping Your HD Journey: How to identify and gauge the level of services necessary to support your journey,” at the HDSA annual convention, held June 26-28 in Indianapolis.
Huntington’s symptoms include movement disorders and cognitive challenges. As these symptoms progress, people with Huntington’s start to struggle with daily activities, and many eventually need regular assistance for tasks they once did independently. Navigating the changes can be frustrating and emotional for patients and caregivers, and often the patient needs more support than a caregiver can provide, the social workers said.
“The ultimate goal is the quality of life — to allow the level of functioning that that person can do and engage in a way that’s meaningful,” McDaniels said.
Yes or no?
Indicators are a valuable tool for evaluating when it’s time to move to the “next level of care,” McDaniels said. “The indicator speaks,” she said. “It points you in a direction.”
“It is a yes or no factor,” McDaniels said. “Can you do this? … How well do you navigate through personal hygiene dressing, eating, drinking and so on,” she said.
Reynolds shared a worksheet, taken from The Complete Caregiver Support Guide, to objectively assess these indicators, listing tasks and asking if the person can do them independently always, sometimes, or never.
“What we saw that was so valuable in this is that it helps objectively identify the level of assistance that someone who is living with HD [Huntington’s disease] is needing in the here and now,” from “little to no help all the way to [requiring] ongoing assistance with all independent activities of daily living,” Reynolds said.
McDaniels and Reynolds gave an overview of three types of long-term care beneficial for people with Huntington’s: home care services, which rely on family, friends, or healthcare professionals; assisted living facilities, apartment-like settings in which residents live mostly on their own but can rely on on-site staff for support; and skilled nursing facilities, or nursing homes, which provide round-the-clock care.
Many nursing home patients are “socially thriving,” McDaniels said. “They’re not isolated in the community, and they’re seeing people who look like them and that they can engage and talk about who they are,” McDaniels said. “They’re living. They’re not just existing.”
“There is no one specific pathway in terms of HD,” McDaniels said. “Not everyone lands in and goes from phase one, phase two, phase three. There’s no such thing.”
Open communication between caregivers and care facility personnel is crucial so that facilities can understand the unique needs and desires of each patient, McDaniels said.
“You, as the caregiver, [are] part of the team,” she said. “It doesn’t run well without you. We need you.”
Facility staffers rotate, and aides may not be familiar with a patient’s routine or how to interpret a person’s needs, said Reynolds. Caregivers, she said, can provide “very personal pieces of information” about what works and what doesn’t.
“Having that personal information, having those likes, those dislike, those triggers, is really valuable in helping with this transition and adjustment,” she said.
It’s also important to have realistic expectations, the social workers said. For instance, medication administration at nursing homes has a time window, so if someone usually takes medication at 9 but doesn’t get it until 10, that doesn’t necessarily mean the meds are late, said McDaniels. Emergencies can also delay attention to less urgent needs, she said.
Understanding insurance coverage and financial realities is also crucial for long-term care decisions, as government programs like Medicare and Medicaid have varying levels of coverage, and costs can increase as care needs grow, Reynolds said.
McDaniels and Reynolds emphasized that everyone — patients, family, and professionals — is striving towards the same goal of maximizing life quality for the patient.
“No one asks for this disease,” Reynolds said. “No one expects what’s going to happen, even if you’ve seen it over generations in your family,” and “the more you can identify in a calm way, where … you need help,” the smoother the transition will be, she said.
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America annual convention June 26-28. Go here to see the latest stories from the conference.
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