Huntington’s caregivers voice need for online and in-person support

Concerns include self-care, balancing work and care, and feeling isolated

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Caregivers of people with Huntington’s disease want support programs that will help them in balancing their own care needs over time with those of the patient, often a family member.

This theme emerged from caregiver focus groups conducted in the Netherlands, where support was considered effective if it would help address their daily life challenges and concerns.

Caregivers generally felt that an online option would make participation easier, but it shouldn’t replace in-person contact altogether.

Findings will be used to develop a “tailored and remote support program for caregivers of people with HD [Huntington’s disease],” the researchers wrote.

The study, “Facilitators and barriers in caring for a person with Huntington’s disease: input for a remote support program,” was published in Aging & Mental Health.

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Huntington’s disease comes with considerable caregiver burden

Huntington’s progressive nature means that over time, patients lose physical and intellectual abilities and become increasingly dependent on caregivers in their day-to-day life. This places a substantial burden on caregivers’ own lives, especially with the disease having an earlier onset, generally between the ages of 30 and 50, than many other neurodegenerative conditions.

Huntington’s also is a heritable genetic disease. Caregivers know that they or other family members could develop the condition, and they could be responsible for the care of more than one patient.

In previous studies, caregivers noted a need for support networks to manage these and other challenges. Still, geographic, economic, and other barriers can limit access to available programs.

In recent years — and particularly during the COVID-19 pandemic — an increased focus was placed on virtual healthcare services. Such online services could expand access to support programs for Huntington’s caregivers, the study noted.

To inform the design of such a program, researchers at Maastricht University conducted focus groups with 19 adult Huntington’s caregivers, mostly spouses, and eight healthcare professionals in the Netherlands.

Adolescents also may be caring for parents or other family members with the disease, but they are expected to have different support needs that “will be addressed in a separate study,” the researchers wrote.

Four focus groups, led by a moderator and involving six to 10 people, were held online using Zoom. Participants were asked about their experiences with Huntington’s, daily life changes and challenges, barriers and facilitators in coping with the disease, and their needs and wishes regarding a support program.

From the interviews, four main themes were identified. One was called “the care paradox,” in which caregivers invest all their energy in caring for a loved one with Huntington’s and fail to take care of their own needs, ultimately limiting their ability to give care effectively.

“I neglected myself for too long,” one caregiver noted. “The time I had for myself just disappeared. … Now I’m struggling with myself. But I’m under treatment for that because I know that the caregiving will only extend.”

Daily challenges due to disease’s changing needs, hereditary nature, loneliness

Another theme was daily life challenges, which were generally consistent with known caregiver concerns, including a lack of Huntington’s awareness among the public, and feelings of loneliness or shame that drive social isolation.

“They always have to explain, explain, and explain,” said a social worker. “Caregivers already have a lot to take, and in addition to that, they must constantly explain. That takes an incredible amount of energy.”

Concerns about the disease’s hereditary nature and continuous coping with Huntington’s many symptoms, ranging from movement to behavioral problems, were among the daily challenges brought up in the focus groups.

“Because HD is so complicated and affects many aspects of life, it is hard to discuss it in our closed Turkish community,” said one caregiver. “Four out of seven children in our family have HD, but it was never talked about.”

Among factors that helped to make life easier, caregivers mentioned speaking openly about it with others, having external support networks of family and friends or daycare programs, a daily structure to care given, and taking time to rest.

A tailored support program was seen as a need, with caregivers favoring a program that helps in gaining insight into how their own behavior influences a loved one with the disease, how best to cope with symptoms as they develop, and how to combine work and care.

“He is no longer the person I was once married to,” one woman said. “It is important to receive support on how to cope with a changing partner as this is very relevant for most caregivers.”

“I’ve experienced several barriers to discussing things with my employer, so it would be very helpful to receive support or hear about experiences from others,” a man caring for his wife said.

The program also should focus on managing concerns about a parent passing this disease to a child and the consequences of such heritance, and help with managing changes over time, ranging from pre-diagnostic symptoms to transitioning to a nursing home and end-of-life decisions.

Interviews to aid in the design of a tailored support program

Caregivers and health professionals agreed on many topics, including the significantly different experiences each family faces, emphasizing “the importance of tailored support,” the researchers wrote.

Many caregivers indicated that online support is easier and more accessible as questions arise. “Having something online makes it easier for me to combine it with work and care responsibilities,” one noted. Still, caregivers indicated that they don’t want remote support to replace in-person contact altogether.

“This focus group study showed that, apart from being open about the disease, most of the experiences in caring for a person with HD are similar as those reported in previous similar studies and therefore, don’t seem to be bound by cultural aspects,” the researchers wrote.

Findings will help “to inform the decision-making process for the content of a blended care self-management support program for HD caregivers,” the researchers wrote, ideally including both social workers and case managers.

The program would aim to balance self-care with caregiving using an online approach, allowing easy contact with healthcare professionals who can answer questions.

Integrated into existing Huntington’s care settings, “it presents an opportunity to continue to support HD caregivers, now and in the future,” the team concluded.