Support for carers

“It isn’t just about the complex symptoms or huge financial challenges. It isn’t just the many years during which you may be a carer, or the possibility of caring for more than one family member during your lifetime. It isn’t just the sadness, grief and sorrow of gradually losing the person you care for. It isn’t just the worry about children living with the genetic condition or the isolation that can come with Huntington’s disease. It is ALL of these things.” (Quote from a family carer)


Being a carer for someone with Huntington’s disease can be very challenging. Because of this, it is important to look after yourself as well as the person you care for. This factsheet will look at what help is available to support you in your caring role.


  1. Mahi Ora – Carer’s Strategy Action Plan 2019-2023

This gives all adult and young carers in New Zealand the right to receive a wide range of services and support as Mahi Ora recognizes, values, and supports carers as an investment in New Zealand’s future.


  1. Respite

It may help to have regular breaks from your caring role. For example, the person you care for may be able to visit a day center a few days a week or someone might come in and sit with them for a few hours. In addition, having a longer respite break can give you and the person you care for something to look forward to.

To find out how to get your own carer’s plan, or to discuss respite, you can contact your local NASC service here


  1. Carers New Zealand

Carers New Zealand is a nonprofit support network that can offer:

  • Information and advice on things such as benefits, training, short breaks, support services and advocacy


  1. Finances

Caring for someone may lead to money worries, especially if your caring role means you have had to give up work. You may be able to get help to increase your income, such as through the Supported Living Payment benefit. To find out if you are eligible for financial assistance, find more information or contact Work and Income here


  1. Emergency Planning

Many carers worry about what will happen to the person they care for in an emergency. It is a good idea to have a plan in place for this type of situation. This is called an emergency plan. You can write your own plan or use one of the templates available, such as the Emergency Planning Toolkit for Carers.

It is useful to talk to friends, family, and support networks about the role they could play in an emergency and share the plan with them. This can provide peace of mind for you and the person you care for. It will also ensure that the relevant people have the necessary information to step into your role temporarily or identify resources when informal networks can’t be relied upon.


  1. HD Specialists

HD Specialists have expertise in working with individuals and families impacted by Huntington’s disease. They help with issues such as symptom management and provide emotional support for carers. Your HD Specialist can meet you at home or in another place of your choice. This can be with or without the person you care for. Your HD Specialist can also give you information on any carers’ support groups that may be running in your area.


  1. Supporting young carers

The Huntington Disease Association provides advice and support for young carers and, if you wish, will introduce you to other young people who are in a similar situation. The HD Association also facilitates regular carer days in Auckland. If you are in Auckland and wish to participate, contact us here. If you are out of the area, contact us and we may be able to work something out such as facilitating you to participate through online/Zoom or advise you of other services for carers.


  1. Looking after yourself

Carers often neglect their own health and wellbeing because they are so busy caring for and thinking about others. They often have little free time and stop doing the things they enjoy. Eating well and exercise can also fall by the wayside. However, it’s important to look after your own physical and mental health. Doing things you enjoy and having time to relax can make it easier to cope when things are difficult. Talking about how you feel can also help, and there is support available if you find it difficult to talk to friends and family. It’s also important to speak to your HD Specialist or GP if you feel your mood is low or you are struggling to cope.


Useful links

Carers New Zealand

New Zealand Carers Alliance

Work and Income (WINZ)

Huntington’s Disease Association Auckland