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When Parkinson’s leads to social isolation

New report provides important insights

Parkinson’s can impact on lifestyle in more ways than the physical and cognitive symptoms of the condition.

Parkinson’s Victoria has released their recently commissioned Awareness and Attitudes report which sheds new light on the issues impacting Victorians living with Parkinson’s.

The main objectives of the research were to identify any gaps that exist within the community in regards to the knowledge and understanding of Parkinson’s, and to measure the extent of social isolation felt by those living with Parkinson’s.

The research found that the majority of those with Parkinson’s report feeling socially isolated and alone:

  • 1 in 2 (55%) of people living with Parkinson’s say they often feel socially isolated as a result of having Parkinson’s
  • 8 in 10 people who have Parkinson’s say they have lost confidence as a result of having Parkinson’s
  • Among those who had a job before being diagnosed with Parkinson’s, the vast majority (84%) claim that since being diagnosed they have had to either to reduce their work hours to manage their symptoms or give up their work  
  • Most notably, six in ten (58%) had to give up their work entirely

It is not uncommon for people with Parkinson’s to see their friends less often than in the past, spend less time on their hobbies, adjust their diet, and choose to do things like travel more in the early stages of Parkinson’s. However only around 1 in 10 Victorians from the general population indicate with a high degree of confidence that they are aware of these life impacts.

The research also found that whilst most Victorians (95%) had heard of Parkinson’s, and one in four people (25%) claimed to know someone with Parkinson’s, their depth of knowledge and understanding of Parkinson’s is less convincing:

  • 54% of the general population believe that Parkinson's is a terminal condition
  • 72% of general population didn’t know that 1 in 5 people are diagnosed in their working age

Knowledge of the symptoms of Parkinson’s is considerably lower, with one in two Victorians mistakenly believing all people living with Parkinson’s experience body tremors/shaking. 

Fatigue is the main symptom of Parkinson’s, however only four in ten Victorians know this (when prompted), and when asked spontaneously what the symptoms of Parkinson’s are only 1% cite fatigue.

These results will guide the future direction of awareness and education campaigns for Parkinson’s Victoria.

 

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