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The phases of Parkinson’s (online)

Table 1 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacter
Diagnosis11%1.6Post diagnosis before symptoms have become significant
Maintenance40.4%5.9Symptoms significant but largely controlled by treatment
Complex (advanced)33.6%4.9Aim is optimal symptom control
Palliative15.1%2.2Dignity and alleviation of distress

Table 2 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacterService considerations could include:
Diagnosis11%1.6Post diagnosis before symptoms have become significant
  • Introduction to Parkinson’s nurse and relevant allied health professionals
  • Liaison with social care team regarding such things as employment, benefits and carer’s assessment
  • Self care programme – to encourage patient to take control
  • Cognitive behaviour therapy or counselling – to build resilience
  • Falls, bladder and bowel, mental health services as appropriate

Diagnosis

This phase refers to the point when the person receives their diagnosis. We expect people to receive an appropriate diagnosis. This means that a person diagnosed with Parkinson’s should be provided with all the information they need to help them to adjust to life with the condition.

Being diagnosed with Parkinson’s can be an emotional experience and everyone will react to the news in their own way. Not everyone will want a lot of information or detail about Parkinson’s straight away. But it is very important that they know where to access more information and support when they are ready for it.

Think about your own experiences either personal or professional. How might you feel at this point?

The appropriate process for diagnosis as discussed in Section 1.8. SIGN and NICE guidelines recommend that if a GP suspects that a person has Parkinson’s, they should be referred untreated to a specialist in movement disorders before any treatment is considered. This can be a neurologist or elderly care physician.

Not everyone will immediately go on to a medication regimen at the point of diagnosis. If symptoms are mild, some people, together with their specialist, may decide to postpone drug treatment until their symptoms increase.

Table 3 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacterService considerations could include:
Maintenance40.4%5.9Symptoms significant but largely controlled by treatment
  • Multidisciplinary health and social care input
  • Medicines management
  • Falls service
  • Bladder and bowel service
  • Mental health services
  • Outpatient and inpatient service
  • Ongoing cognitive behaviour therapy, self care and carer support
  • Increasing primary and secondary care needs as becomes complex
  • Deep brain stimulation for appropriate patients

Maintenance

By this phase a person’s symptoms will have increased significantly. Most people will be on a medication regime to control their symptoms. A person’s condition and medication regime should be reviewed every six months to make sure that they have the best quality of life possible.

Table 4 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacterService considerations could include:
Complex (advanced)33.6%4.9Aim is optimal symptom controlAs above

Complex (advanced)

This is the point when you are most likely to come into contact with a person with Parkinson’s in your workplace, so this is the phase we are focusing on in this course. In the complex phase of Parkinson’s, the main issue is symptom control. People’s medication regimen will be altered frequently to meet the changing nature of the condition. People with Parkinson’s in this stage of the condition are likely to be taking a large number of medications and experiencing significant side effects.

People will be finding activities of daily living difficult to manage at this stage. It is very likely that many will have to give up a number of hobbies or leisure activities that they have previously enjoyed.

Although the condition progresses differently and at a different speed for each person, the advanced stage can potentially cover a long period of time.

Table 5 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacterService considerations could include:
Palliative15.1%2.2Dignity and alleviation of distress
  • Pain control
  • High demand on GP/local services and/or residential care needs
  • Mental health and social work services
  • Independent living support and advanced care planning
  • Carer support

End of life (palliative phase of the condition)

The major challenge in this phase is to achieve the best quality of life and maintain a person’s dignity. Appropriate pain control and support services should be in place.

A person in this phase of their condition may need regular reviews of their medication. Many people may need to stop taking some medications because of an increased sensitivity to side effects or because they are not working as well as they used to. Some people may also be unable to take medication orally.

A local Parkinson’s nurse or the person’s specialist can provide advice about how this period should be appropriately managed.

Although the condition progresses differently and at a different speed for each person, the palliative phase can potentially cover a long period of time. Some of the more advanced symptoms can lead to increased disability and poor health. This can make someone more vulnerable to infection. People with Parkinson’s most often die because of an infection or another condition.

The care plan of someone with Parkinson’s should include details of their wishes for end of life. This will include who they want to be with them, any spiritual or religious needs, and where they want to be when they are dying. This may or may not be where they currently live.

Table 6 of 6

PhasePercentage of people with Parkinson’s in this phaseAverage length in yearsCharacterService considerations could include:
Diagnosis11%1.6Post diagnosis before symptoms have become significant
  • Introduction to Parkinson’s nurse and relevant allied health professionals
  • Liaison with social care team regarding such things as employment, benefits and carer’s assessment
  • Self care programme – to encourage patient to take control
  • Cognitive behaviour therapy or counselling – to build resilience
  • Falls, bladder and bowel, mental health services as appropriate
Maintenance40.4%5.9Symptoms significant but largely controlled by treatment
  • Multidisciplinary health and social care input
  • Medicines management
  • Falls service
  • Bladder and bowel service
  • Mental health services
  • Outpatient and inpatient service
  • Ongoing cognitive behaviour therapy, self care and carer support
  • Increasing primary and secondary care needs as becomes complex
  • Deep brain stimulation for appropriate patients
Complex (advanced)33.6%4.9Aim is optimal symptom controlAs above
Palliative15.1%2.2Dignity and alleviation of distress
  • Pain control
  • High demand on GP/local services and/or residential care needs
  • Mental health and social work services
  • Independent living support and advanced care planning
  • Carer support

Now return to the course.