Read Jeff's story about why improvement in the support and services which people living with dementia and their carers receive, leading up to and after diagnosis, is so important
Jeff, alongside Kielan Arblaster, Jawad Khan, and Helen Pratt will be running a session on Supporting Well; What support would enable us to live well with dementia? at the Living Well with Dementia in Greater Manchester: Join us, we need each other event on Monday 6 June 2022. You can find out more and register your interest here:
You will have suspected this for a while, as she has. But you hope it will not be that. You have talked a bit about it, but in an abstract way, not thinking too much about the consequences. So when the confirmation of what you already know comes, in a fairly cold matter of fact way, you would expect to be ready to deal with it. It was what I was expecting but I didn’t know what to do next, and we were not given any information or support contacts.
We also ended up in a bit of limbo because although given a diagnosis of dementia more investigations were needed (at another hospital) before Alzheimer’s could be confirmed or excluded. How long did this take? Six months to get an appointment (despite repeated chasing by me). During this time there was no follow-up by any health or social care professional! We then had a further 3 months of investigations and tests to diagnosis followed by a further 3 months to get stabilised on ACE inhibitors.
We managed to negotiate our way through this period, accessing knowledge ourselves. For example contacting the Alzheimer’s Society was helpful. My wife was a nurse and I had worked in the health service. It helped having some understanding about the system. We were also well supported by family who were, of course, dealing with their own emotional reaction to the news.
We learned to live with the diagnosis and to continue living our life a day, a week, a month, a year at a time. We continued to travel and lead adventurous lives for a while. And my wife was prepared to be open with friends about the diagnosis. Over time you notice how life has changed and what adjustments you have made.
My immediate feelings were that we can and will deal with this. My wife was naturally upset and at times tearful. She said to me more than once, “it’s not me I am upset for, but you”. But I had little idea of what I would need to deal with or when.
My life did change and eventually I had to acknowledge that I was now a carer. In the end her illness progressed quite rapidly and I reflect that there are so many other carers of people living with dementia who have had and are having a more difficult time than I did.
What would I have wanted to happen?
Receiving a diagnosis of dementia is almost certainly devastating news, even if it is half anticipated. There is a lot to assimilate for the patient and for their family members. During the diagnostic process and crucially at the time of giving the diagnosis it is not unreasonable to expect sensitivity and understanding. One of the most important needs is for emotional support and help in understanding the implications, both short term and long term. When I reflect on our journey I realise there was no care plan for her, or for me. It was clear that was no system of monitoring and support for us in dealing with this progressive and incurable disease. It can and should be better.
Find out more about the Dementia Care Pathway that’s been developed by Dementia United as part of an Integrated Care System. Dementia United worked with people living with dementia, their care partners, and professionals in Greater Manchester to find out what matters to them and to use this information to co-produce a set of 75 dementia quality standards.
These quality standards provide information and resources for all stages of the dementia journey, from looking after the health of your brain, receiving, and managing a diagnosis, staying connected within your local community, to what to expect from end-of-life care and much more.