Living with Dementia Group  

Patrick talks about living with frontal lobe atrophy and his experiences of working with the team. Patrick’s passionate about more people with lived experience of dementia getting involved in the Dementia United programme of work.

We consider you an expert by experience. We know that you are in the best position to advise NHS Greater Manchester Integrated Care on the needs of people living with dementia.

Living with Dementia Group members get involved with and influence our entire programme. Living with Dementia Group members are equal partners in Dementia United’s leadership structure. They are also represented at our Steering and Task & Finish Groups, and on multiple additional projects.

Living with Dementia Group members meet online regularly. Members are reimbursed for their time. Download our flyer to find out more: Living with Dementia Group Recruitment Flyer March 2023

How you can get involved: If you are, or can facilitate an introduction to, an individual living with dementia or a carer or former carer of an individual living with dementia, that would like to be involved in the programme’s governance or a workstream please get in touch with Amal Morsi:

John O’Doherty: Member of our Living with Dementia Group talks about why he would encourage people to get involved

In 2016 I was diagnosed with Vascular Dementia. My journey to diagnosis was lengthy, torrid and impacted greatly upon my family. Had my diagnosis been done in a timely manner, I would not have reached the pit of despair which led me to self-harm. It would have also prevented my family, friends and colleagues being exposed to watching me deteriorating.

My memory was becoming problematic, for example I was forgetting people’s names, including my sons and Grandchildren. I could no longer count change, when driving I was getting lost even on familiar journeys to the extent that I started using the bus service. This too became difficult, and I was continuously getting on the wrong bus.

In the workplace I was making mistake after mistake to the extent I was demoted twice. In fact, in my now junior role, I couldn’t remember how to use the photocopier. I felt like I was having a nervous breakdown. I was continuously visiting my GP to no avail. It was only when I began to self-harm as I could no longer cope that I was referred to see a psychiatrist.

At my appointment with the psychiatrist, I explained what was happening to me. I was given a memory test which I totally failed. I was then sent for a brain scan which showed abnormalities. I then attended a memory clinic where I was given my diagnosis. It was at this stage my dementia care plan was established.

Prior to the innovations of the dementia care plan, services provided to people living with dementia were often disjointed. The care plan was developed in order that services were streamlined and ensured a level of uniformity across all sectors involved in providing dementia care.

The main aim of the dementia care plan is to create a strategy offering planning and support throughout the dementia journey. That support is given from diagnosis to end of life care.

After my diagnosis I had to take early retirement from work. I found myself alone at home, depressed and in a void doing nothing. I then contacted the Alzheimer’s society who in turn linked me with Dementia United.

I have now worked with Dementia United for a number of years and is the greatest level of support I have. I have made friends, colleagues and always feel welcomed. Indeed, due to my work with Dementia United I consider myself as a both a representative and advocate for other people living with dementia.

During my time with Dementia United I have participated in many areas such as:

  • Recruitment and appointment of colleagues.
  • Served on the board of the Manchester Airport Accessibility Forum.
  • Written articles
  • Assisted the recruitment of Social Sense who developed the Greater Moments app.
  • Addressed conferences.
  • Assisted in research such as Housing, Finance, Benefits and Transport.

This is merely a list and is not exhaustive of my work.

In conclusion I would gladly encourage others to become involved in Dementia United’s work.