Mental health

Looking after your mental health helps you to continue with your life in a positive way. With Huntington’s disease, there can be changes which suggest you may be struggling to cope as well as before.


Such changes can be misdiagnosed or go untreated and may present in a variety of forms – from a mild depression and anxiety to more severe symptoms. There may also be others that are non-specific, including irritability and apathy.


Assessing mental health in some people with Huntington’s disease can be challenging due to cognitive deficits, communication difficulties and/or a lack of self-awareness.



  1. What does mental health mean?

Mental health refers to your behavioural and emotional wellbeing. It is generally categorised as how you think, feel and behave, and affects everything about you. Conditions such as anxiety, stress and depression can affect mental health and, consequently, disrupt your daily life or routine.


One in four people can expect to have mental health problems at some point in their life. Although it is common in Huntington’s disease, not everyone with the disease, or their carer(s), will recognise the symptoms, which can be very subtle.


Depression is the most common change you may experience, not only because of your diagnosis but also due to neurological changes in the brain. Signs and symptoms could be your loss of interest or pleasure in activities, weight loss, lack of sleep or early wakening, feelings of guilt or hopelessness, loss of energy and lack of drive and motivation. You might have unpleasant thoughts which could lead you to think negatively about your life and feeling that it is not worth living. It is important for your HD Specialist to monitor this, encouraging you to open up about how you are feeling or involve other professionals who may be able to recommend a treatment plan for you. Making lifestyle changes can help, including becoming more involved in your community, allowing family and friends to offer you appropriate support or picking back up on hobbies or activities that you used to enjoy.


Other more serious mental health changes such as psychosis, which is less common in Huntington’s disease, may require more careful consideration as this could lead to hospital admission.

You may experience emotional changes such as irritability, apathy and anxiety. Some of these could be linked to Huntington’s disease, however others could be related to changing circumstances and, perhaps, losses that that are happening in your life. Personalities can also change and some people become more disinhibited, angry or obsessional.


Sleep disturbance is common with Huntington’s disease, and could be linked to depression or mania (abnormal elevated mood). Some people may require medication, however very often good sleep hygiene is all that is needed to get you back into a good routine. Try to avoid turning night into day and avoid sleeping during the day. Don’t go to bed using technology or watching TV and try to stick to a rigid time schedule.


There is no physical test or scan that indicates reliably that a person has developed a mental illness. However, other than depression, there are signs you can look out for. They include consistently low energy levels, withdrawal from friends and family, erratic sleep/eating patterns, being confused, inability to complete daily tasks and frequent use of mood altering substances, including alcohol and nicotine.


  1. What could help me?

There are various ways of managing your mental health. What works for one person may not work for another and sometimes a combination of strategies might benefit you the most.


They include:

  • Psychology – psychologists will help you to talk through your difficulties and recommend relaxation or coping strategies. This will help get to the root of your mental illness and support you to develop more meaningful thoughts
  • Medication – your GP or HD Consultant may prescribe medication. Some of these work by the body absorbing ‘feel good’ chemicals from the brain (serotonin), others may boost the overall level of these chemicals or prevent them from being destroyed. Depression is very treatable and can be the most effective intervention your doctor can make to help you
  • Self-help – you may want to think about making other lifestyle changes, including reducing your alcohol intake, sleeping more or mindfulness. Try becoming involved in a peer group which can offer an invaluable support network


  1. Mental Health (Compulsory Assessment and Treatment) Act 1992

In exceptional circumstances, should your mental health become very complicated and require hospital admission or treatment, you will be protected under the Mental Health (Compulsory Assessment and Treatment) Act 1992. This legislation states what your rights are and how you will be protected.


Useful links

Mental Health Foundation NZ