Huntington’s Disease & Mental Illness: Expert insights into a rare and complex illness

29 October 2018

Huntington’s Disease & Mental Illness care at Exemplar

Exemplar Health Care’s Consultant Psychiatrist, Dr Peter Marshall discusses the alarming rates of mental illness in people living with Huntington’s Disease and the challenges faced by health professionals.

The symptoms of Huntington’s Disease vary widely between different people and, although the movement disorder is often the most obvious symptom of Huntington’s Disease, the psychiatric symptoms are often the most complex. 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 (source: Huntington’s Disease Association).

As the Behavioural Support Mental Health Team within Exemplar Health Care, 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. Often patients with Huntington’s Disease present symptoms that aren’t typical of the psychiatric illness, this 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. It is understood that up to 60% of people living with Huntington’s Disease report depressed mood (Source: Journal of Neurology 2001) yet only around 25% of Exemplar Health Care 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 Health Care, 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 Health Care 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 Health Care residents whilst continuing to receive multi-disciplinary care in a friendly and familiar setting. Exemplar Health Care is continually working to develop a pathway of care with outstanding standards for people living with Huntington’s Disease within Exemplar Health Care’s Homes. 

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 often lack insight into these symptoms which often makes 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 and allow them to be more independent for longer. 

Technology

Exemplar Health Care’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 Health Care’s 28 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 care for people with HD

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 health care 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.