Hello, does anybody have experience of Parkinsons Dementia? I want to understand more about it as I am a carer and want to be prepared. How long after PD diagnosis can dementia start and is there treatment to help with it.
Many thanks for any info you can post.
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Hi Winnie,
Welcome to our community forum. Dementia is an oft-discussed issue here so a search through the forum will provide some data as our group members weigh in with their advice. We’d also point you toward our website, which is an excellent way to educate on all things Parkinson’s. It is kept up to date diligently and offers multiple resources which can be of use. You may wish to start here: Thinking and memory changes | Parkinson's UK.
We also have a free and confidential helpline on 0808 800 0303 and they are always happy to answer questions.
We hope this helps, and with our warmest welcome,
Jason
Forum Moderator
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Hello,
How long dementia can start probably depends on a number of individual factors eg someone who is older at diagnosis age might go into it earlier than someone of a younger age. There are medications to help which i think slow down the progression, sometimes in the form of a patch which is changed daily, there are different dosages and youd start on a lower one and work up. Might be something best discussed with GP or Neurologist if you start to notice symptoms. I think the prognosis is different with Lewy Body Dementia.
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Hi Winnie, my husband was diagnosed with Parkinson’s Disease in 2011 and with PD Dementia in April 2022 and he is now 65 years old. He was prescribed 24 hour Rivastigmine patches and is now on 9.5 mg. They can increase the dose as the dementia worsens, but I’m advised that unfortunately that worsens the Parkinson’s Disease. The Rare Dementia Society in London have a Lewy Body Dementia support group if you’re interested as Parkinson’s Disease and Dementia with Lewy Bodies both come under the Lewy Body Dementia umbrella. There’s also a support group for those with the dementia. My father in law had Lewy Body Dementia, the basic difference as I understand it is if the movement problems start first it is Parkinson’s Disease Dementia but if the dementia starts first it is Dementia with Lewy Bodies.