Let's Talk About Huntington's Disease with Dr Inga Stewart

This month, to support the Huntington’s Disease Association’s campaign to highlight the impact that Huntington’s disease has on people’s mental health, #HuntingtonsInMind, our specialist HD clinicians are sharing their knowledge and insight into the disease and how we support our patients living with HD with their mental health. 

In her video ‘Let’s Talk About Huntington’s Disease’ Dr Inga Stewart talks about how we can be more aware of the physical and mental symptoms of the disease and the simple ways in which we can be respectful and accepting towards people living with HD.

To find out more and watch the video click HERE or the image to the right

"It's really important that we remember that you can live well with Huntington's disease and although there isn't a cure at the moment, we can treat the symptoms"

Often people will assume that the physical symptoms of Huntington’s disease are the first to become apparent, but mood and changes to a person’s behaviour can be the first areas to be affected:

“People might present with symptoms of depression and anxiety, and this may be linked to all the things that are happening in their life because of the HD, but it could also be due to the changes in their brain.” Dr Inga Stewart

Insight into our specialist care

Working across separate male and female HD units, at St Andrew’s our specialist teams have a deep understanding of the physical, emotional and psychological impact of life with HD.

The MDT use a range of treatment programmes adapted to the needs of each individual patient, providing structure and routine but also recognising that approaches need to be adaptive to meet the changing needs of patients as the disease progresses.

As the first RAID® Centre of Excellence we incorporate the RAID® model principles in every interaction – positive, meaningful, engagement and reinforcement – to tailor care and understand each patient’s need.

Ward based social work and occupational therapy teams support patients on a day to day basis and provide a valuable link to family and community teams to facilitate discharge back to home or a suitable community placement closer to home.

On-site designated dysphagia kitchen

Alongside a dedicated team of chefs working in our designated dysphagia kitchen our Speech and Language Therapists and Dieticians plan and provide graded meals for our HD patients.

Understanding the effects of HD

The effects of HD are wide-ranging and change how people think, feel, speak, move, swallow and eat. These effects can be broadly grouped into three key elements of change:

• Cognitive
• Emotional
• Physical

all of which affect how people with HD behave and determine their needs.

To help you to recognise and respond to these needs we have, in association with the Huntington's Disease Association, created a mini guide which you can download here.