Principal Investigators


Institution


Huntington's WA (Inc)

Contact information of lead PI


Country


Australia

Title of project or programme


Development of a comprehensive specialist support service to enhance the experiences of younger people with Huntington’s disease in residential care

Source of funding information


Perpetual

Total sum awarded (Euro)


€ 40,697

Start date of award


01/01/2015

Total duration of award in years


1

Keywords


Research Abstract


HWA’s objective is for individuals with HD to have access to personalised high quality residential care services.
HD is characterised by uncontrollable movements, cognitive and emotional impairment, behavioural issues and speech and swallowing difficulties. As the disease progresses, the person requires a higher level of care. Eventually, for most people, residential care becomes the only option. Typically, the age at which someone with HD enters care will be between 35 and 60.
?People with HD in residential care are distributed over many individual facilities and across regions. Without a clear pathway of specialised care training, the quality of care delivered is quite variable.
HWA is seeking to:
1.Liaise with Individuals/ family members and Care Corordinators to enhance collaborative approaches to Care Management
2.Develop and facilitate specialised training for care facility staff
3.Develop training resource packs
4.Provide intensive support to individuals with HD in residential care.

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