FEATURE
The symptoms of Huntington’s Disease vary widely between different people and, although the movement disorder is usually the most obvious symptom of Huntington’s Disease, the psychiatric symptoms are oſten the most complex. According to the Huntington’s Disease Association, the cognitive disorder is generally the symptom people find affects them most in daily life, while the behavioural disorder is usually the one that gives patients and carers the most concern.
As the Behavioural Support Mental Health Team within Exemplar, we know that psychiatric symptoms are inherently part of Huntington’s Disease, but they are under diagnosed and under treated because knowledge across the care industry can be limited. Oſten patients with Huntington’s Disease present symptoms that aren’t typical of the psychiatric illness, which means that it can be difficult for general health professionals who don’t have a psychiatric background to identify mental health symptoms in people with Huntington’s Disease.
Psychiatric treatment can be extremely effective in people living with Huntington’s Disease, reducing distress and improving daily living skills and quality of life.
Depression is particularly common in Huntington’s Disease and can lead to suicidal thoughts. As reported in the Journal of Neurology 2001, it is understood that up to 60% of people living with Huntington’s Disease report depressed mood. However, only around 25% of Exemplar residents are open to psychiatric follow up, which is a significant issue. One of the key challenges with people diagnosed with Huntington’s Disease is ensuring appropriate and prompt assessment and treatment by psychiatric services.
Huntington’s Disease is a rare condition, which can mean that psychiatric professionals have limited experience of assessing and treating symptoms and signs of mental illness.
APPROPRIATE TRAINING
At Exemplar, we are continually looking at how we can support the knowledge and experience of our teams. As such, we have made the investment to train a member of our Behavioural Support Mental Health Team to be a specialist in the assessment and treatment of behavioural problems in people with Huntington’s Disease. Our niche specialist care in the disorder and experience over the last 20 years has influenced this decision to support our goal of making every day better for our residents.
EXPERT CARE
We are also in the process of organising joint neurology and psychiatry clinics within Exemplar homes, where I will work collaboratively with an NHS Consultant Neurologist to assess and treat physical and psychiatric illness. Our aim is to make appropriate specialist assessment and treatment more accessible for Exemplar residents whilst continuing to receive multi-disciplinary care in a friendly and familiar setting. Exemplar is continually working to develop a pathway of care with outstanding standards for people living with Huntington’s Disease within Exemplar’s Homes.
twitter.com/TomorrowsCare MANAGING SYMPTOMS
Symptoms of anxiety, depression and psychosis can all occur within Huntington’s Disease. Another significant problem a patient may face is Organic Personality Disorder, also known as frontal lobe syndrome. Symptoms of frontal lobe syndrome can include impulsiveness, aggression and disinhibition. People oſten lack insight into these symptoms, which can make management more difficult.
Identifying and managing symptoms of mental illness in people with Huntington’s Disease is key to limiting distress, improving quality of life and instilling hope. It enables people to maintain daily living skills, allowing them to be more independent for longer.
“Identifying and managing symptoms of mental illness in people with
Huntington’s Disease is key to limiting distress, improving quality of life and instilling hope.”
TECHNOLOGY
Exemplar’s goal is to use technology and digital tools as much as possible to enhance the care that can be provided to people living with Huntington’s Disease. People with the disease will experience progressive mobility issues, making access to regional outpatient clinics difficult. To improve accessibility to timely, specialist psychiatric assessment, all people with HD within Exemplar’s 27 homes have the option of having a Skype review. Prior to having a Skype review, the person needs to consent and be assessed as having capacity to consent. The NHS has deemed Skype a safe way to assess people online and is encouraging its wider use within care settings.
Skype sessions are available to all residents within our homes that have been referred via the Behavioural Support Mental Health Team (BSMHT) or Huntington’s Disease Helpline. Referrals to the BSMHT are for problems that are viewed as urgent by the home, where a sudden, significant deterioration has occurred or there has been a significant increase in risk. The Huntington’s Disease Helpline is for less urgent problems, where staff are becoming concerned that a person is deteriorating but interventions so far have not had the desired effect.
THE FUTURE OF HD CARE
Improving the awareness and knowledge of Huntington’s Disease and its combination of physical, cognitive and psychiatric symptoms is essential to ensure early and accurate diagnosis of symptoms. Collaborative learning and cross- disciplinary working are integral to improving the treatment of the disease across the healthcare industry. Technology has a fundamental role to play in improving outcomes for people with Huntington’s Disease and care organisations should embrace its use, enabling prompt access to expert assessment and treatment.
www.exemplarhc.com
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