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 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.

Behaviour and communication guide

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

GPs

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

Social workers 

A guide for social workers

Physiotherapists

The European Huntington Association holds a wide range of up to date information for Physiotherapists who are working with people with Huntington’s. A key document for physiotherapists is the European Huntington’s Disease Network Physiotherapy Clinical Guidelines. New physiotherapy clinical recommendations (2020 publication) are also freely available online. The 2020 article provides recommendations that are graded, based on a systematic review of available evidence and in some places by expert opinion. The 2013 document however does provide additional information on specific interventions and outcome measures that, although it is not possible to support them all by an evidence base, can support physiotherapists in managing people with Huntington’s. Importantly, there are no contradictions between the two documents.

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. You can use these tools to help any Huntington’s disease patients become fitter, more flexible and confident. Please remember exercise is not without its risks and this or any other exercise programme has potential to cause injury. 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 your patient begins to feel faint, dizzy or has 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 disease to plan regular physical activity with support from a physiotherapist. It includes information on goal setting and resources to help people with Huntington's disease stay active, and it is suitable to be used alongside the Move to Exercise DVD programme. We advise that you work with your patient to develop their own physical activity goals and plans using the physical activity workbook.


Physical activity tool for people with Huntington’s disease PAT-HD

This tool is to help people with Huntington’s think about what physical activity they could do and then make a plan to increase or maintain their physical activity over time. It was designed with the help of people with Huntington’s disease, their families, specialist Huntington’s advisers and healthcare professionals with funding from the Huntington’s Disease Association. You can use this tool with your patient to make a physiotherapy plan.

We have also created a webinar to help people keep active while at home. Although this video is specific to the time of the COVID-19 pandemic, it has useful information for anyone wishing to be active. Click here to see the webinar and a list of resources.

 

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