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Are you a family caregiver of an individual living with Huntington’s disease?

Anglia Ruskin University is inviting adult family caregivers to take part in an 8-week, online, evening music therapy programme designed just for unpaid, family caregivers. Currently recruiting volunteers to create and trial music therapy, the programme is specifically designed to enable caregivers to meet others in a similar situation, as well as make time for themselves.


What is Huntington’s disease?

Huntington’s disease (HD) is a rare, inherited, neurological disorder which causes progressive nerve cell degeneration. An individual living with Huntington’s disease usually lives with reduced movement, changes to their cognitive ability and heightened emotions.

While there is currently no cure for Huntington’s disease, there are therapeutic and emotional support services which are designed to maximise independence and quality of life for individuals.


Is it possible for music therapy to provide a space for caregivers to have their own time and connect to others?

For most of us, we hear music from the day we are born and for many of the most significant milestones in our lives. Despite many genres, there is a comforting quality about music, in that it can bring us closer and bind us together as a group; as well as providing an escape when we want a little alone time.

Many of the neuro-chemicals involved in closeness and connection are directly affected by listening to, or creating, music together, according to several studies.

A new study is hoping to find how relaxation to music, rhythmic interaction and gentle exercise to music can improve the lives of family caregivers of people with HD.


Caring isn’t easy- caring for the caregiver is important!

It can be very challenging living with Huntington’s disease, both for those living with the diagnosis and for their carers. The right support can make a world of difference.

Unfortunately, for individuals who provide care to a friend or family member living with Huntington’s, they are often put at risk of poor health themselves, including the feeling of being isolated.

Respite in any form is a necessity but is often overlooked as the desire to provide person-centred care is so overwhelming.

By connecting with others, many carers can feel less isolated and share experiences, advice and support.

If you are a family carer for a loved one living with Huntington’s, it is always important to take care for yourself. Carers often wait until they reach their breaking point before seeking support, but seeking support before you reach this point is much better for both you and your care receiver.

If you’re a family caregiver for someone living with Huntington’s disease and feel as though you’d like to make a change to your life, as well as the individual in your care – you could benefit from the new study being carried out by Anglia Ruskin University.


How to join the study with ARU

It can be hard to find time for yourself, or to focus on feeling calmer when caring for a loved one who needs frequent support and medical attention.

While so much research is taking place to understand more about Huntington’s – and to hopefully one day find a cure – research is now taking place into how the lives and livelihood of those providing unpaid care could be changed.

Evelyn Mason, Vice Chancellor’s Scholar, PhD candidate and Neurologic Music Therapy Fellow at Anglia Ruskin University is heading up the important research programme – and is looking for recruits. “If you’d like the chance to make time for yourself, potentially feel calmer with therapeutic activities by way of guided relaxation within a positive and nurturing online group – we would love to hear from you,” says Evelyn.

Participants will be asked to participate in a free 8-week online music therapy group which aims to increase wellbeing; and will be involved in questionnaires and short interviews to find out about their life experiences and their response to the sessions.

By taking part in this study, family caregivers will be helping to provide further understanding into the benefits of music therapy for carers. To be eligible, you must:

  • Be 18 years or older
  • Live in Wales, Scotland or England
  • Be an unpaid caregiver for a family member living with Huntington’s disease

Join Evelyn and the researchers from Anglia Ruskin University in this meaningful research and help to make a difference in your life, as well as the lives of other family caregivers for loved ones living with Huntington’s disease.

If you’re unsure whether you meet the requirements, or would like further information into the study, please contact the principal researcher, Evelyn Mason. No question is too large or small!