The Occupational Therapist and Huntington’s Disease

Clare Cook MSc, Dip COT

Session Outline• Introduction to occupational therapy in HD• Development of practice guidelines• Research

“The basic goals of occupational therapy intervention for persons with dementing illnesses are (a) to maintain, restore or improve functional capacity; (b) to promote participation in activities that optimise physical and mental health; and (c) to ease caregiving activities.”

(American OT association,1994)

Where to find an OT• Health and social care departments• Wheelchair services• Neurology clinics• Inpatient units (mental health/physical health)• Specialist teams• Community mental health teams• Palliative care teams

Why Have an OT in the Team?

• Trained in both mental health and physical health

• OTs specialise in occupational performance• Maintaining skills and independence

Interventions

Vary according to:1.Particular difficulties experienced by the

service user2.Which activities are meaningful and

purposeful to the individual3.Social support4.Resources available

Strategies

• Compensatory• Environmental• Cognitive/behavioural (care givers)• Case management/care coordination

Where’s the evidence?

Systematic Literature Review• Medline • Embase• Cinahl • Amed • PsychInfo • Cochrane library • Internet search (Google scholar)

Search Terms• Huntington’s disease, AND • Occupational therapy / occupation /

independence / rehabilitation / activities of daily living / adaptations / home adaptation / equipment / leisure / work / employment / feeding / posture / seating / wheelchairs / splinting / sensory / multi-sensory / manual handling.

Findings • 10 Articles• No RCTs• Pilot studies• Case studies

Effectiveness of physiotherapy, occupational therapy and speech pathology for people with Huntington’s disease: A systematic review(Bilney et al 2003)

• 3 articles on OT ’71,’81, ’91, no RCTs• Small numbers of participants• All in latter stages of disease in nursing

homes• Showed no improvement in function but

unable to show if deterioration had been prevented

• Need for further research

Community based OT for patients with dementia and their caregivers: randomised controlled trial. (Graff et al 2006)

• 135 participants• 10 sessions of OT over 5 weeks compared

to a control group of no OT• Outcome measures – AMPS, IDDD,SCQ• Significant improvement in scores which

remained significant after 3 months

“occupational therapy will result in less dependence on social and healthcare resources and less need for institutionalisation” (Graff et al 2006)

Guidelines

Part 1

• Process of developing the guide

• Background Information

End of life care24 hour postural managementManual handling and minimizing riskAlternative living arrangements

Optimising activitiesMobility and falls preventionTransfers and hoistingBed mobility and sleep safetyPostural managementEating & drinkingSelf careDomestic skillsFatigue

Supporting ParticipationSelf EfficacyRoles & relationshipsWorkSocial Recreational and Leisure activitiesDrivingCommunity living skills and Outdoor mobility

Strategies… Physical FactorsCognitive FactorsBehavioural Factors

Part 2

Current Challenges• Evidencing statements• Ratification• Publication

Need for more research into Huntington's disease and

occupational therapy

A Study to validate the Assessment of Motor and

Process Skills (AMPS) for use with people who have Huntington’s disease

The Assessment of Motor and Process Skills (AMPS)

• An observational assessment• Used to measure the quality of ADL

performance• Standardized on over 100,000 clients

worldwide

An AMPS Assessment

• Begins with an interview to determine the tasks that are familiar and relevant to the client

• There are 85 standardized AMPS tasks, ranging from easy to hard

• Includes the observation of at least two chosen ADL tasks

Research Study• Test/retest• Participant vs. control• Relationship with similar scales

Hypotheses• AMPS is a valid assessment to use with people

who have HD• AMPS is a sensitive measure which can detect

change in performance skills• AMPS could potentially be used to assess the

impact of disease modifying drugs on a person’s ADL performance skills

Thank you for listening

clare.cook@bsmhft.nhs.uk