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Key facts & Figures
Click here for Key Facts Information Sheet
PARKINSON’S: EASE THE BURDEN
Parkinson’s is second only to dementia as the most common chronic neurological condition. There is no cure for Parkinson’s. It is a progressive disorder whose impact reaches far beyond the clinical signs and symptoms exhibited by those afflicted. It not only places severe burden on the individual, but also on their family, friends, work place and society.
Symptoms and Stages
Symptoms and levels of severity can vary greatly from person to person.
The four major symptoms are:
- Tremor: trembling in hands, arms, legs, jaw or face
- Rigidity: stiffness of the limbs or trunk.
- Facial expression may also become rigid and inflexible.
- Slowness or loss of spontaneous movement that is unpredictable when it occurs and can be the most disabling symptom. It can severely impact on simple everyday activities, reducing independence.
- Postural instability: impaired balance and coordination. Postural instability can cause patients to have a stooped posture, can develop a forward or backward lean and can fall easily, resulting in injury. In later stages, walking is affected.
Other Parkinson’s symptoms include:
- Depression and anxiety (prevalent in about 40% of patients)
- Dementia (approx 30% develop dementia)
- Memory loss and slow thinking
- Difficulty swallowing and chewing
- Speech changes
- Urinary problems and constipation
- Sexual difficulties
- Skin problems
- Sleep problems
People suffer disrupted family and personal relationships, many withdraw from social and leisure activities and frequently suffer from depression, even in the earliest stages of Parkinson’s.
As the disease progresses, and deterioration increases, the family unit’s quality of life and financial status follow suit. This becomes apparent by increased financial burden to family and society and changes in care giving roles of family members.
- 20,000 Victorians have Parkinson’s, and over 1,000 are diagnosed each year, or nineteen each week.
- 30% of those diagnosed are of working age
- There is a misconception that this is an “old
person’s” disease. Twenty per cent are under
50 when diagnosed.
- There is a lack of awareness and service coordination, whereby people do not access services that would reduce the impact of Parkinson’s.
- The total number of people with Parkinson’s is four times the number with MS. Numbers will double in thirty years.
Incidence in Victoria 2001 Neurological Conditions
Source: DHS Victorian Burden of Disease Study 2001.
25,576 healthy life years were lost due to Parkinson’s
in 1996. This compared to 4,443 due to Multiple Sclerosis,
4,000 due to Motor Neurone Disease, 1,300 due to Muscular
Dystrophy. The impact of Parkinson’s was greater
than Leukemia, (19,000) and Epilepsy (11,500).
Source: AIHW Victorian
Burden of Disease Study 1996
The Department of Human Services published a report ranking
the 50 main causes of healthy life years lost (DALY) for
each region of Victoria. Parkinson’s is ranked on
average at 19 out of the top 50 conditions in Victoria
in terms of healthy life years lost.
Source:
DHS 2001. ** $ Cost figures based on Access Economics
estimates
Source: DHS 2001
In terms of funding, Parkinson’s lags significantly behind. As a statewide disability agency, Parkinson’s Victoria receives only $180,000 recurrent funding. This equates to $9 per person.
The direct and indirect costs of Parkinson’s to the state of Victoria are over one billion dollars per year. This will double in the next thirty years with the ageing of the population.
The outcomes are:
- People retire earlier than is necessary, become dependant, increasing pension costs and reducing government tax income
- Carers retire early or reduce work hours to care for partners
- People with Parkinson’s leave their own homes and enter nursing homes earlier than is necessary.
- People with Parkinson’s are hospitalized too frequently.
- When in hospital, many times their medication needs are mismanaged and hospital bed days increase
- People with Parkinson’s fall frequently, increasing acute hospital bed stays, lose confidence, decrease community participation and become housebound
- People with Parkinson’s are not aware of existing community services they can link into to remain in employment, to live independently for longer at home, to actively participate in community.
Increased funding needed
Parkinson’s Victoria requests that the inequity in services for people with Parkinson’s is addressed. Specifically, we request that recurrent funding increase to 1.5 million dollars.
This will enable the following:
- Provision of regional support staff in each DHS region of the state.
- Employment of clinical nurse educators, ensuring staff at hospitals, the 810 nursing homes, respite and accommodation centres across Victoria are aware of the needs of people with Parkinson’s.
- Case coordination, ensuring people are networked with government and community services from time of diagnosis
- To partner with community service providers to enable a comprehensive integrated service for people with Parkinson’s, and to ensure that service pathways and options are well communicated.
- To increase awareness of the benefits of early referral and intervention by a multidisciplinary team
- To prevent injury and health complications to people with Parkinsons by early intervention and preventative management
- To reduce hospital admission through reducing falls and fracture rates
- To educate health service providers including GP’s, nurses, nursing home, hospital and community health service providers.
- To improve community awareness
- To improve quality of life outcomes for people with Parkinson’s
- To provide direct cost benefits to the Victorian health sector by optimizing clients health, reducing risk, reducing hospital presentations.
- Enable people to remain in the work force longer
- Educate work place employers and fellow workers about Parkinson’s
- Delay nursing home admission
Parkinson’s Victoria celebrates
25 years of service to the community of Victoria. It is
time to invest in services and strategies to reduce the
impact of Parkinson’s on the individual, families,
carers and the community.
Glenn Mahoney
Chief Executive Officer
"Parkinson’s disease poses a significant public health burden which is likely to increase in the coming years. Along with Alzheimer’s Disease, Parkinson’s is expected to surpass cancer as the second most common cause of death by the year 2040”. CSIRO 2002
The Department of Sustainability and Environment predict a 19% growth in the total Victorian population by 2021. The rate of growth for the 70-84 year age group during this time will be 59%. The 85 and older age group will experience an even larger percentage increase, growing by 74% to 2021. Unless there is a cure, the number of people with Parkinson’s will double over the coming thirty years.
“We need to look holistically at the person, not just the disease. Practitioners need to be aware of the high level of pain fatigue and depression associated with PD, even in the early stages. Family relationships are affected early, indicating the importance of early referrals to community based services and support groups”. Whetton et al 1998
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