1800 244 735

Helpline (02) 9874 9777

Carers, Family & Friends

Carers are often partners or other family members, such as parents or siblings. The care they provide can vary from simply helping someone out on a regular basis with shopping, cooking or washing to providing support 24 hours a day, seven days a week. However, many carers who provide this care and support will not view themselves as a “carer”. First and foremost they will view themselves as a partner, parent, child or sibling.

Additionally, due to the hereditary nature of HD, carers may be looking after or supporting more than one member of the family at the same time. Due to the possibility of personality and behavioural changes in the cared for person and the long duration of the illness,  caring for someone affected by this disease can be particularly challenging and demanding – physically, emotionally and financially.

This information and advice is provided on various aspects of caring for a person with HD and aims to support carers who are looking after a family member affected by the disease.

WORDS: adapted from Huntington’s WA

Resource Library

AUDIENCE

TOPICS

RESULTS FILTERED BY:

National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington's Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.

Featured Support Groups and Services

Online Carers Support Group

Calendar of events
This is a facilitated group for people who are caring for a partner, family member or friend with HD.
Places are limited to 8 therefore RSVPs are essential.

Huntington’s NDIS Support Coordination and Specialist Support Coordination

We understand the progressive neurodegenerative nature of Huntington’s disease and the effects it can have on a person’s day-to-day life and the impacts it has on their carers. The support coordinators will work with you at your pace to remove some of your daily stress by coordinating your supports. We are here to empower you to live a quality life with dignity and autonomy. We know that people who are experiencing symptoms of Huntington’s can lose capacity to direct their own life.

Huntington Disease Service – Westmead Hospital University Clinic

GP/Specialist referral required for this service. This service provides regular Medical review by Huntington disease specialist Neurologists for anyone with Huntington disease, at all stages of the disease. It is also available for those at risk of inheriting Huntington’s disease or undergoing testing for Huntington disease. The Social Workers provide support and advice for social ... Read more

Music and Social club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.

‘My Voice’ Art club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.