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Huntington’s Disease An Overview

Huntington’s Disease An Overview. Huntington’s Disease Association Dee Boyd – Regional Care Advisor. Contents. What is HD? Statistics Genetics Symptoms. What is Huntington’s disease?. A hereditary degenerative neuro-psychiatric disorder

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Huntington’s Disease An Overview

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  1. Huntington’sDisease An Overview Huntington’s Disease Association Dee Boyd – Regional Care Advisor

  2. Contents • What is HD? • Statistics • Genetics • Symptoms

  3. What is Huntington’s disease? • A hereditary degenerative neuro-psychiatric disorder • Symptoms of HD usually start between the ages of 30-50 years, although late onset and juvenile manifestation does occur • The prognosis is usually between 15-20 years from onset of symptoms • Currently no cure

  4. Statistics • 6,000 -10,000 – in the population of the UK • 1in 10,000

  5. Genetics • An inherited dominant genetic condition caused by a mutation on chromosome 4 • Each child of an affected parent has a 50:50 chance of inheriting the gene and therefore developing the disease at some stage • Identified the gene in 1989 and a predictive test has been available from 1993

  6. Huntington’s disease affects the whole family It can have an effect on generations Sometimes a person who has the HD gene dies before any symptoms appear. The gene may have been passed on without anyone realising it is in the family Anyone who inherits the gene will develop the disease unless they die before this happens Implications

  7. A Triad of problems with Huntington’s disease These problems interact with each other Physical problems Emotional problems Cognitiveproblems

  8. Healthy vs. HD Brain

  9. Typical Physical Changes Chorea - Often starts with fidgety movements Might seem clumsy or stumble more than usual Over time movements tend to become more noticeable Voluntary movements also affected Rigidity

  10. Typical Physical Changes Speech might sound a bit slurred Lack of control of volume As the disease progresses, swallowing problems are common Weight Loss Incontinence

  11. Typical Cognitive Changes Harder to plan and think ahead Harder to switch from one task to another Prefer a set routine, and want things done in a certain way and immediately. Change to routine can cause anxiety or frustration Changes in behaviour may be due to medication, pain, temperature, visitors, staff, fatigue, processing skills, frustration and overload

  12. Typical Cognitive Changes • Lack of motivation – appear lazy • Memory and concentration problems • Inability to recognise they have a problem • Denial – or is it? • Reduced ability to read facial expression • Inability to adapt behaviour • Extra processing time is required. Longer to receive an answer

  13. Typical Emotional Changes Cognitive changes lead to frustration which in turn lead to temper outbursts Emotional changes often start with subtle changes to mood / behaviour Some people become aggressive, demanding, stubborn and self-centred. Depression is common, but very treatable

  14. Typical Emotional Changes • Again because of cognitive changes people can be impulsive or irrational, behaving in a disinhibited way or obsessive with things • These may lead to social isolation

  15. Points to remember • Some people with Huntington’s disease can experience mental health issues • People with HD are individuals and will differ in the extent and sequence with which they experience symptoms • However, although people may move in and out of the stages, there are broad developments during the progress of the disease

  16. Other considerations • HD can make a person more difficult to live with • Relationship changes • Not the person I married • Loss and bereavement

  17. Salient Points • Huntington’s Disease can be considered as a veil. Sometimes you can see through the veil • The movement disorder is the most apparent • The mental health/behavioural aspects are the most worrisome • The cognitive impairment is the most disabling • Huntington’s Disease affects every individual in a unique way

  18. Further Reading • Huntington’s Disease Association Fact Sheets • A range of other books, leaflets and resources available via the HDA Website and Head Office

  19. Huntington’s Disease Association • For more information contact Head Office Suite 24 Liverpool Science Centre I31 Mount Pleasant Liverpool L3 5TF Tel: 0151 331 5444 E mail: info@hda.org.uk Web: www.hda.org.uk

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