Understanding the experiences of people with Parkinson’s related dementia

We want to understand the experiences of people with Parkinson’s related dementia and the health and social care system today

Do you have Parkinson’s related dementia? Do you care for someone with Parkinson’s related dementia?
We would like to invite you to share your experiences of the health and social care system with Parkinson’s UK, to discuss what is important to you and be part of making change happen.

This can be a face to face meeting in your home or care home, by telephone or through a video call online. Whichever is the easiest way for you.

What is involved in taking part

This meeting with a Parkinson’s UK member of staff will involve:

  • a meeting with the member of staff who will ask you questions about the care you receive
  • the questions and answer session will last approximately one hour.
  • the conversation will be recorded on a dictaphone to be written up at a later date. the audio recording of the conversation will not be used for any other purpose and will be deleted when the write up of the conversation has been completed.

We will then analyse a transcript of the discussion and provide you with a copy of the transcript. This analysis is part of a policy report that will be published in 2021.

We will ask your permission to publish any quotes we want to use in the report or other campaigns

Further information

Taking part in the discussion will involve drawing on your own personal experiences of care and treatment. We understand this may be an emotional experience that you may find upsetting. You can withdraw from the discussion at any time.

We can take breaks if you wish during our conversation and won’t ask you to share anything if you’re not comfortable doing so. You can also request for the information you give to remain anonymous.

Information you share in the interview will be recorded and dealt with in accordance with the General Data Protection Regulation, Parkinson’s UK policies and procedures. We will ask you to sign a consent form at the start, but you can withdraw at any time, if you want.

For more information or if you have any questions please contact Sam Freeman Carney, Parkinson’s UK on 020 7963 9394 or email [email protected]

If you would like support of information relating to Parkinson’s related dementia please contact our Helpline on 0808 800 0303.

My husband was diagnosed about 18yrs ago, he has now lived in a nursing home for two years
We live in Scotland
Over last 4 -5 years experiencing hallucinations and now dementia , he is largely unaware of his mental health issues but obviously I am very aware of changes in him
I think the relative/carer sees the problems /changes which the suffer may not
My husband was living at home and I was aware of husbands hallucinations long before I alerted anyone until I was unable to cope any longer
Again it was me who noticed my husbands memory problems which was much easier to report than hallucinations were
I am happy to take part

Hi @Melrose,

I’m so sorry that you’re husband is going through and I’m sure this can’t be easy for you too. Unfortunately, as you’re based in Scotland you don’t meet the criteria for this particular research as we need people based in England. However, I have sent your information to my colleague based in Scotland who I’m sure will be in touch with you when another opportunity like this arises.

Best wishes,

I am also happy to be involved but as a carer’s response.