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The challenge of degenerative disability: Huntington’s Disease

12 Apr 2013, by Informa Insights

Younger people with very high and complex care needs are people under the age of 60/65 who require a high level of care and support due to disability. Examples of disabilities affecting this group include: Acquired Brain Injuries (ABI), Multiple Sclerosis and Huntington’s Disease and other neurodegenerative diseases. People  with these disabilities are at risk of being admitted to residential aged care (RAC) because of the sudden nature of their disabilities – acquired injuries can occur to an otherwise healthy person through, for example, a car crash or accident, and MS and Huntington’s Disease often have rapid onset.

As at June 2012, 3300 people under the age of 60 lived in nursing homes. These facilities are not designed or resourced to provide young people with support to continue to participate in their community and everyday activities.

The excerpt below is taken from Janet Wagland‘s paper that accompanied her presentation at the Younger People with very High & Complex Care Needs Conference in 2012. Janet is the Manager Services for Younger People at Brightwater Care Group.

Background to Huntington’s Disease
Huntington’s Disease (HD) is an hereditary disorder of the central nervous system. While best recognised for its physical presentation such as uncontrolled muscle movements, impaired swallow and limitations to mobility, it also causes a range of neurological symptoms including cognitive and perceptual deficits. The complex presentation of the disease, combined with an average age of onset between 30-50 years old, means that Huntington’s Disease has a major emotional, social and economic impact on the lives of both the person with HD and their families.

Early presenting symptoms may include some uncontrolled movements and clumsiness but often the symptoms that impact most in the home environment are changes in mood, temper outbursts and changes to regulation of self care and lifestyle management. These issues can cause breakdowns in relationships with immediate family, friends, neighbours, employers, workmates and the larger community.

Whilst people at mid stage of the disease progression do present with mobility and movement control issues, it is often deterioration in their ability to plan and manage their life that causes them to lose independence. Presenting issues may include poor hygiene, lack of financial management skills, the inability to manage personal health including medication management and dental health, a loss of personal relationships and poor dietary control. These can result in the individual being inappropriately accommodated in the public health or mental health system, a nursing home for the aged or a high care environment in the disability sector. Some individuals may be homeless.

People with Huntington’s Disease often present with some or all of the following during the progression of the disease:

  •  Physical Symptoms
    – Jerking movements (choreiform) of all limbs, the trunk and face
    – Lurching and stumbling gait
    – Slurred speech
    – Weight loss
    – Swallowing difficulties resulting in aspiration or choking
  • Cognitive Symptoms
    – Impaired planning, organising and sequencing
    – Slowed thought processing and reasoning
    – Lack of initiation
    – Rigidity of thought
    – Difficulties with impulse control
    – Poor awareness of time
    – Reduced awareness and concentration
  • Perceptual Symptoms
    – Impaired spatial perception
    – Difficulties managing and manipulating personal space
  • Emotional Symptoms
    – Physical and verbal anger outbursts
    – Antisocial behaviour
    – Depression
    – Apathy
    – Reduced awareness of behavioural impact on others

Due to the diversity of symptoms and the whole-of-life impact that these symptoms have, people with HD require services and support from a wide array of health professionals including neurologists, psychiatrists, psychologists, social workers, physiotherapists, occupational therapists, speech pathologists, dieticians and nurses. In addition, they also need support from a diverse group of service providers ranging from genetic services to family planning, advocacy, support groups, accommodation and mental health agencies.
You can download the rest of the paper here. You can also download her accompanying presentation slides here.

Janet will speak at the 2nd Annual Younger People with very High and Complex Care Needs Conference in Melbourne on 17th and 18th June 2013.

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