Strategies to care for a loved one living with Huntington’s disease

Creativity and adaptability are important when devising how to help

Becky Field avatar

by Becky Field |

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My brother, Gavin, has Huntington’s disease. It causes problems with his cognitive, behavioral, emotional, and sensory skills. We’re fortunate to have support from a care adviser from the Huntington’s Disease Association, who has provided my family with strategies to help manage Gavin’s symptoms.

For instance, Gavin is currently stuck on saying no to most questions he’s asked. The adviser suggested that we start a conversation by asking a question that we know he’ll answer with yes. Then we can follow up with the question we really want to ask. This strategy might “unstick” his automatic response.

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Since Gavin might oppose anything that disrupts his normal routine, such as medical appointments or visits from family and friends, we’ve been advised to give him time to prepare and move from one activity to another. To do that, we might select the date and time of his appointment weeks in advance. Giving him control can encourage him to cooperate and balance the loss of control he feels over some aspects of his life. 

Gavin also says we don’t listen to him. To address this, we try to tackle one problem at a time to avoid overloading him. We keep questions short, precise, and with limited choices. Then we give him plenty of time to answer, mostly to accommodate his slower processing skills. It gives him the attention he wants and makes him feel heard.

Reducing the amount of clutter in his home and keeping items in the same place also calms him and helps him remember where his things are. We try to encourage and prompt him to participate in tasks and routines, such as making a cup of tea and taking a shower. We’ve also been advised to avoid crowded, noisy places that may cause an outburst of anger. When he goes for a meal with our mum, for example, she finds a quiet space away from other people. 

He has routines and writes notes to himself, which helps him to remember things and regulate himself. He also writes in a diary. We help by adding reminders to his diary if an appointment or event is happening.

All of these are strategies to help Gavin in living with his Huntington’s disease.

Small wins

While he’s quick to lose his temper, he can calm down just as quickly. It helps to let him shout and not interrupt him. We try not to reason, explain, or persuade him, which would only increase his anger. Sometimes returning to an issue at a later date may be necessary to give him time to process information and calm down. We try to identify triggers and avoid them.

I hope he’ll agree to meet with his neurologist, who can prescribe him some medication that I think could calm his anxiety and anger.

Being consistently calm and polite also helps to build a good relationship with him, so we hope this behavior will allow him to trust a person enough to listen and let them help him. Gavin is also more receptive to professionals approaching him. 

He also becomes fixated on things. It’s impossible for him to wait because of his neurological condition. We try to address this issue quickly, and if we can’t remedy it straight away, we give a realistic schedule of when we will.

In one detail, I’ve noticed that Gavin is more likely to be angry later in the day. He says his sleep is disrupted, so fatigue could play a factor. Organizing trips earlier in the day or allowing quiet time for naps each day can really help. It’s also possible that he’s physically uncomfortable, which might heighten his anger. We try to keep an eye on any possible medical problems and handle them when he’ll engage with us. 

We’re also trying to introduce a personal assistant to our care. At times Gavin’s been open to this idea, but other times he’s strongly opposed it. We hope to build his openness by starting with small amounts of help and letting him work at his pace. We’ve found that it’s best to avoid mentioning his need for help in connection with Huntington’s disease. It feels disempowering to him, particularly because he believes he doesn’t have symptoms.

Despite all these strategies, I’d be lying if I said they work every time, because they often don’t. But some days we do have small wins. Still, I get angry and feel guilty and frustrated at times. I blame myself if I haven’t handled things well and have missed an opportunity to achieve a good response from him. I think it helps to understand and keep in mind why he behaves the way he does and have these strategies ready, even if I don’t get it right the first time.

My brother cannot help his behavior or change it. Therefore, we must try to be creative in how we adapt to him.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Maureen Howley-Brigham avatar

Maureen Howley-Brigham

Thank you for this. My sister has Hd and so do I but although we have same cag repeats we present differently. My dad had HD and has passed so we have some tools. I also use cannabis as plant medicine and I don’t have any chorea. Good luck.

Becky Field avatar

Becky Field

Thank you Maureen. So difficult, especially when each person presents differently. Good luck to you and your family too. I will be thinking of you -Becky.

John Zech avatar

John Zech

This article is helpful, I will share it with family

Becky Field avatar

Becky Field

Thank you, John, for commenting and for reading. I'm glad it is of some help. All the best to you and you family - Becky.

Janet Anderson avatar

Janet Anderson

Hello, I read your post as my husband and son as well as my one daughter All have HD. My husband is in denial, but it was his granpa, a uncle and three cousins on my husband side. They have all passed away from HD. My husband and son get into arguments as my husband thinks he knows everything. My son use to bike to work, but the bike kept having problems, so now he decides to walk to work even though we tell him we would give him a ride ad pick him up, he gets stubborn and keeps walking that 1 1/2 miles, I am concerned when the weather will start being below zero. How can I get though to him, we want to help, he works 12 hrs a day, two days on then 2 days off or maybe 3 days on and thre days off. He enjoys his job, but I am afraid one day they will have to et him go because he might be having mishaps at work. I am concerned for both of them, how their future and mine will be

Becky Field avatar

Becky Field

Dear Janet, I am so sorry to hear of the affect of HD on you and your family. I hope you have some local support and that you can reach out for it. I wish you the very best of luck.


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