Lived experience of dementia is at the heart of our ‘Living Well with Dementia in Greater Manchester’ event

John is a lived experience advisor, a Dementia United governance board member and an advisor for the Commons Select Committee for Health and Social Care’s. Read his story about his experience of dementia

In 2016 I was diagnosed with Vascular and mixed dementia. Prior to my diagnosis I knew something was wrong and my diagnosis was not a shock but vindication. My mood was changing, I was no longer a fun loving person but became more and more morose. In my place of work I changed from being the person to approach for advice, to the person to avoid.

My memory affected my ability to perform tasks I usually could do with ease my concentration was getting worse and I was quick to anger.

I was demoted twice from my role and changed from dealing with millions of pounds a year to photocopying documents and answering the phone. My confidence was totally and utterly destroyed.

I could write all day about my experiences but that would too exhaustive. My grandfather and my mother both died of dementia, I was aware of its characteristics and they were what I was experiencing. In short, I knew deep down I had dementia.

I spoke to my doctor on several occasions to no avail. It was only when I self-harmed that I was referred to a psychiatrist and I eventually was given my diagnosis.

Impact of Pandemic

The pandemic has brought significant difficulties to my life. I feel that my dementia has worsened through it and it has affected me mentally. I also feel that it had made my dementia worse. Both myself and my wife were subject to having to shield.

Because of this we had to rely on family members to do our shopping and perform other tasks on our behalf. I found this experience totally depressing and demeaning. One of the things that I found particularly depressing was when I had to ask family members to do our shopping. This meant giving them my credit card. Whilst I trust them implicitly it was a reminder to me that one day, in line with my power of attorney, they will have control of my finances.


 Carers are generally as invisible as the disease itself. Because of this whilst they provide the care and support a person living with dementia requires, their own needs and support are generally ignored by society as a whole. For example, carers will often ignore their own poor health and continue to provide often exhausting care and support whilst there is none there for them.

If ever the term unsung heroes and heroines be applied, it should be to our wonderful carers, and I hope that the event can highlight their importance and recognition.

 The Event

 I look forward to the event with great optimism. I feel it will be opportunity for different organisations and individuals to network, learn and also to share knowledge and experience.

Through my experience of Delirium hope that I may educate and enlighten people as to how it can manifest itself.

Policy Issues

I have a keen interest in the field of housing for people living with dementia. It is an important issue which needs to be addressed more fully. I have recently contributed to a policy document highlighting those needs and hope that at the event the issue can be discussed.

For example, I live in a small terraced house, I find the stairs too steep and difficult to negotiate. My bathroom is too small, and I need a walk-in bath. The local authority due to financial constraints are unable to assist me and when I made enquiries as to the cost of installing one myself, I was told it would cost me in the region of six thousand pounds. A sum well beyond my reach.


Find out more about this event here