Ricky’s talks about how his Gran’s dementia diagnosis impacts his whole family and why he is supporting the ‘We live with dementia’ campaign.
What is Parkinson’s?
Parkinson’s is a condition in which a part of the brain called the substantia nigra loses nerve cells. This loss of nerve cells results in a reduction of a substance called dopamine which is important for the regulation of movement of the body. As the dopamine levels decrease the person’s movements become slower. Most people with a diagnosis of Parkinson’s do not go on to develop dementia – although about a third will, usually in the later stages. This is known as ‘Parkinson’s with dementia’ and may also be referred to as Lewy body dementia.
It is estimated that Parkinson’s affects about 1 in 500 people and it is currently thought that it may be due to a combination of genetic and environmental causes. About one-fifth of people diagnosed with Parkinson’s are under 40 years old but it is more common in the over 50s.
How does Parkinson’s develop?
As the disease progresses people who have Parkinson’s are increasingly likely to have a tremor, shaking, slowness of movement and rigidity. It can also cause problems with balance, sleep, swallowing, speech and increase the risk of falls. This can cause embarrassment, distress, discomfort and social isolation.
Research has indicated that in Parkinson’s the person’s cognitive processes can also be affected and these may get progressively worse over the years, with some people going onto develop dementia in the later stages of Parkinson’s. The cognitive changes could include:
- slowed thought processes
- reduced concentration
- a reduction in reasoning, judgement, planning and decision-making abilities
- difficulty learning new things
- reduced motivation
- hallucinations and delusions
The person may also show signs of depression or anxiety.
Managing the effects of Parkinson’s
Currently there is no cure for Parkinson’s, but UK and international research is ongoing.
With Parkinson’s the interventions are focused on support, management of the changes, working with the person and their family to ensure they can live as well as possible with the condition. The physical effects of Parkinson’s can be managed by:
- medications that increase the amount of dopamine in the brain
- adapting the home environment so any trip hazards are removed and risks minimised
- a referral to Speech and Language Therapy if there are speech or swallowing problems
- a referral to a physiotherapist if there are movement issues
- a referral to an occupational therapist for aids and devices that may help around the house
If the person with Parkinson’s has significant communication or cognitive issues they can be reduced by:
- reviewing the medication given for Parkinson’s as this may be worsening the cognitive symptoms
- speaking slowly and clearly if understanding and thought processes are slowed
- reducing distractions
- giving time for communication – it may take longer to respond
- asking questions to narrow down the answer, give choices or use yes/no cards or picture cards – the person may have word finding difficulties as well as needing longer to respond
- using a mobile phone, tablet or electronic communication aid
- avoid unfamiliar or noisy places as they can cause distress
- providing a routine and activities that the person enjoys and feels comfortable with
Remember that comprehension can often be well preserved even if the person cannot communicate verbally.
The person with Parkinson’s and their family may need to be assessed for their eligibility for financial support, have a needs assessment and Carers Assessment. This will enable the family to receive the necessary advice and support to live as well as possible.
For more information visit parkinsons.org.uk or call 0808 800 0303. You can also phone our free Dementia Helpline to speak to a dementia specialist Admiral Nurse about Parkinson’s disease on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email firstname.lastname@example.org or you can pre-book an appointment by phone or video call.
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.