Huntington
Disease
In focus
Hope for caregivers of loved ones living with Huntington’s Disease
An innovative PhD research study to determine if music therapy (MT) can help caregivers of Huntington’s Disease is underway in collaboration with Chroma – the UKs leading arts therapies provider, the Cambridge Institute for Music Therapy Research (CIMTR) at Anglia Ruskin University (ARU) and the Independent Neurorehabilitation Providers Alliance (INPA).
To date, most research surrounding Huntington’s and music therapy has focused on the effects upon those living with the disease and not on the family caregivers themselves. This first of its kind study could help support the wellbeing of caregivers of those living with Huntington’s.
Psychology forms the foundation of music therapy and aims to support a person’s mental wellbeing. Releasing neurochemicals dopamine, endorphins and oxytocin, music therapy helps to improve mental state and this improvement can help enhance a person’s outlook on life and support positivity. This study anticipates music therapy sessions will provide a therapeutic space in which to process feelings related to caregiving and build resilience for the challenges they face in their day-to-day life.
Caregivers of Huntington’s face challenges that differ from any other condition or disease. Domaradzki (2015) noted some of the challenges – one of these, most poignantly being social ignorance.
Caregivers taking their loved ones outside often face incidences of judgement from people who could view their family member as drunk; the chorea or dystonia symptoms of the disease can cause staring and inappropriate comments.
Dr Jonathan Pool, senior music therapist at Chroma, senior research fellow at the Cambridge Institute for Music Therapy Research and Research Chair at INPA commented, “If we are able to address the needs of those who provide care for their loved ones, they’re better able to provide the level of care their loved one needs.
“From other studies, we know that mental health, mood and quality of life can be affected for people who provide care for family members, so if we can find a way to look after the health of the person caring, they’ll be better able to provide the care that’s needed.”
Primarily, the study will start with an in-depth literature review, which will provide essential information and will be followed by focus
group discussions with caregivers as well as help co-design the music therapy treatment model. Following that, a music therapy intervention will be created and delivered to determine if music therapy can help address the needs of caregivers.
Evelyn Mason, senior music therapist at Chroma is a vice chancellor’s PhD scholar who has been awarded a scholarship to
carry out this 3-year PhD.
Evelyn commented, “Huntington’s Disease is often overlooked and unfortunately, not all of society is aware of the challenges these caregivers face. Not only is there an ignorance surrounding the disease but also a difficulty in the hereditary nature of the disease.
“This study will serve as an ‘awareness raising’ tool. And through this study, it is my hope that caregivers feel heard, supported and have access to a therapy which could help them cope with everyday life. This study could offer hope to other caregivers and provide
up-to-date research that is essential to develop future studies.”
Huntington’s family caregivers are invited to participate in this study by contacting Evelyn Mason at em300@pgr.aru.ac.uk.
References Domaradzki, J. (2015) The impact of Huntington’s Disease on Family Carers: a Literature Overview, Psychiatr Pol, Volume 49, Issue 5, 931-44
Stanley House Celebrates HDA Quality Assured Accreditation
Stanley House Care Home, part of Elysium Healthcare Neurological, is celebrating after receiving their Huntington Disease Association (HDA) Quality Assured accreditation.
The accreditation is a quality assurance programme that identifies the behaviours, cultures and specialist services required for a care home to meet the needs of caring for people affected by Huntington’s disease.
Stanley House is now one of only five care homes in the country who have achieved the HDA Quality Assured status. The specialist care home in Herefordshire has now been added to the HDA’s directory of accredited care homes, which provides more guidance for people with Huntington's disease and their families in finding care homes.
During the comprehensive accreditation process which involved the whole team, the HDA said that Stanley House’s ‘support for the individual and positive risk-taking was of particular note’.
Positive risk-taking is a vital component of specialised Huntington’s care because it enables individuals to make their own decisions and exercise choice. Although it may seem counter-intuitive, empowering individuals to take small risks or participate in activities that are not typically regarded as positive for health, such as drinking alcohol or not having to shower 7 days a week, can produce a positive outcome rather than negative.
Of course, the negative consequences of risk must be assessed and managed appropriately, and a person’s capacity to make decisions revisited and documented as their condition fluctuates but as part of a person-centred approach to care, within a specialist setting, positive risk-taking can be very beneficial for people with Huntington’s. Often leading to a decrease in agitation or frustration and associated behaviours.
Care Centre Director, Heidi McCarthy, said that positive risk-taking had been part of the person-centred approach at Stanley House
for many years.
Heidi said: “It’s something that we do quite naturally. We always say, who is it a problem for? If it’s not a problem for the individual we are supporting, it shouldn’t be a problem for us. And I think that's a really good saying. So, if somebody's got 50 cups of squash in front of them and they’re happy, why am I going to remove them if it’s not causing a problem?
“It’s all about trying to give every resident the best life that we can: by understanding their needs, wants, likes and dislikes. This is their home for life and our aim is to build a secure and happy environment that reflects individuality – and sometimes that involves risk taking.”
One of the primary goals of HDA Quality Assured is to improve the experience of choosing a care home for families of loved
ones affected by Huntington's disease.
A high proportion of families report having a negative experience and so the scheme aims to reassure families that core standards are
in place and their loved one will receive quality specialist care.
Changing care homes or experiencing placement breakdowns is very unsettling for individuals and distressing for the family members that are supporting them.
Common reasons for placement breakdowns are restrictive practices enforced by the care home, i.e. not letting individuals take positive risks, which contribute to challenging behaviours, and lack of training and understanding of the specific needs of individuals living with Huntington’s.
For Heidi and the team at Stanley House, communicating with the resident and educating their family about what to expect is a key part of the settling in process, and ensuring a positive experience of care.
Heidi said: “I think it’s about giving them the knowledge. Families want to feel settled and want to know that their loved ones are being cared for. So if they've got a worry or a concern they can come and see us, they can ask what they want to ask. What we want to show or explain to both our residents and their families is that there can be a good care setting, and that there can be a life living in care with Huntington’s.
“Each resident here has different needs and I explain how we accommodate those, we work around individual needs rather than enforcing set routines. For example, a lot of placement breakdowns result from an enforcement of personal care. A resident might not want to shower or wash and forcing them to do so will create agitation and behaviours.
“We focus on building a relationship with our residents first and starting very slowly.
We will always ensure appropriate hygiene levels, but in a modified way that is acceptable to the resident. We have to be flexible in our approach but that’s all part of person-centred care, it starts with the individual and not with us.
“Person centred care is at the heart of everything we do here at Stanley House.
We can’t offer positive risk-taking without it all focusing on the individual and their needs rather than a set way of doing things. People with Huntington’s are all so different. They all have the same condition which has traits along the way, but they’re all individual.
Because the team at Stanley House have a wealth of experience and knowledge, this feeds into the specialist staff training to support new learners in delivering this type of care to those with HD. All staff learn to support people with HD and their families to face the challenges, often with feelings of fear, self-doubt and loss and how this can affect both physical and mental wellbeing and evolving relationships.
“We’re thrilled to achieve the accreditation status which recognises our continued hard work and commitment to our residents and their families.”
Helen Santini, Team Leader, Huntington's Disease Association said:
"The Huntington's Disease Association congratulates Stanley House on achieving accreditation and of particular note was their support for the individual and positive risk-taking. Achieving accreditation is a long and time-consuming process, which involves the whole team.
“However, this is particularly true for providing a good quality of care for people with Huntington's disease which needs to be demonstrated throughout the process.
“It is great to see more care homes added to our directory of accredited care homes to provide more guidance for people with Huntington's disease and their families in finding care homes. We look forward to working closely with Stanley House over the next two years and further ahead."
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