Best practice in Huntington’s disease

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.

Huntington's Disease Association fact sheets

A carer’s guide
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
Checklist for choosing a care home
Communication skills
Eating and swallowing difficulties
General information about Huntington’s disease and the Huntington’s Disease Association
Huntington’s disease and diet
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
The importance of dental care

General information for all professionals

That makes sense now: Decoding the symptoms of Huntington’s disease

Huntington's disease quick reference guide

GPs

A Guide to Huntington's Disease for GPs and Primary Health Care Teams

Physiotherapists

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.

Move to exercise DVD clip 1

Move to exercise DVD clip 2

Move to exercise booklet

 

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.

Physical Activity workbook

 

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 therapists

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

Speech and language therapists

Management of speech, language and communication difficulties in HD

Oral feeding in HD: a guide for speech and language therapists

Dietitians

Nutritional management of individuals with HD

Professionals working in palliative care

Care in Advanced HD