There’s a lot of excellent guidance available for professionals working with people with Huntington’s disease and their families. You’ll find some useful best practice guides in the downloads on this page.
If you don’t find what you’re looking for on this page, get in touch – we’re here to help.
A carer’s guide
A quick guide for South Asian families
A teacher’s guide
A young adult’s guide
Advance Decision to Refuse Treatment (ADRT) (Form to go with ADRT fact sheet)
Advice on life assurance, pensions, mortgages etc.
Behavioural problems
Communication skills
Eating well guide
General information about Huntington’s disease and the Huntington’s Disease Association
Huntington’s disease and driving
Huntington’s disease and the law
Information for teenagers
Predictive testing for Huntington’s disease
Seating equipment and adaptations
Sexual problems
Talking to children about Huntington’s disease
General information for all professionals
That makes sense now: Decoding the symptoms of Huntington’s disease
Huntington's disease quick reference guide
Mental illness and mental capacity in Huntington’s disease: A guide for mental health workers
A Guide to Huntington's Disease for GPs and Primary Health Care Teams
The European Huntington Association holds a wide range of up to date information for Physiotherapists who are working with people with Huntington’s. Their key document for physiotherapists is their Physiotherapy Clinical Guidelines.
Exercise and Physical Activity Resources:
Move to Exercise DVD clips and associated booklet
This exercise programme has been developed by physiotherapists specifically for people with movement disorders. Exercise is not without its risks and this or any other exercise programme has potential to cause injury. To reduce the risk of injury, consult your doctor or physiotherapist before beginning this exercise programme. Your physiotherapist should be able to help you identify which exercises will be most beneficial for you or if you should modify or omit any of the exercises in the DVD. The exercises presented here are in no way intended as a substitute for medical consultation; the authors and producers disclaim any liability from and in connection with this program. As with any exercise programme, if at any point during your work out you begin to feel faint, dizzy or have physical discomfort, you should stop immediately and seek medical advice.
ENGAGE-HD physical activity workbook
This workbook is intended to be used to support people with Huntington's to plan their regular physical activity. It also included sections on goal setting and resources. It is suitable to be used alongside the Move to Exercise DVD programme.
We would love to hear your feedback on these resources which Cardiff University have kindly agreed to us sharing. If you have any comments please contact ruth.abuzaid@hda.org.uk
Occupational Therapy for people with HD: Best Practice Guidelines
OT Clinical Tips for HD - Seating and Posture
OT Clinical Tips for HD - Self-care
OT Clinical Tips for HD - Community
OT Clinical Tips for HD - Domestic Skills
OT Clinical Tips for HD - Eating and Drinking
OT Clinical Tips for HD - End stage and Palliative care
OT Clinical tips for HD - Sleep routine and Management
OT clinical tips for HD - Social and Leisure
OT Clinical Tips for HD - Work
Management of speech, language and communication difficulties in HD
Oral feeding in HD: a guide for speech and language therapists
Nutritional management of individuals with HD