How did you receive your diagnosis?

I started to experience falls and difficulty concentrating. I was also getting ill more often and finding it difficult to multitask. I just had a sense that my cognitive and physical functioning was changing. I kept getting various infections and the symptoms persisted even after antibiotics. My GP carried out further investigations: he tested my eyes and sent me off for an MRI brain scan. He did not explain why and I did not ask why. As it transpired, he was trying to rule out a brain tumour, but he didn’t tell me this because he did not want to frighten me. After the brain scan, I had an appointment with a neurologist who explained that the results of the tests suggested we were dealing with the early signs of Alzheimer’s. This was a real shock as I had never known anyone in their 50s or 60s with dementia, and my mother had been diagnosed in her late 70s. The neurologist drew pictures to explain what he expected a healthy 54 year old brain to look like compared with mine. He started with a consistent curved line to represent a healthy brain and then proceeded to draw a wavy and interrupted line—my atrophied and shrinking brain. This helped me to understand what my brain looked like from a physiological point of view and subsequently served me well in how I explained my condition to others. Some people were shocked and quite disturbed by this image: it was confronting. But for me, it was instrumental in helping me understand what was happening. This was the kind of approach that I wanted, although I am not sure that it would suit everyone. I was then able to go back to my GP and begin the dialogue that has continued to this day.

How are your family involved in your condition?

My adult children’s (the youngest is aged 34) involvement in my care is small. Although they know I have got dementia, their role is to keep a sense of normality going. With my wife the situation is different because we live together and I strive not to see her as my carer. I remember going to a conference about dementia and a woman saying that she had gone into the initial consultation as a wife and had come out a carer. This both shocked and upset me. While our relationship is very much affected by the dementia, it isn’t confined by it. I think the initial diagnosis [of dementia] should be given in the presence of both partners, as they will share the consequences. However, going to follow-up appointments individually provides each partner with the opportunity to speak honestly with a supportive professional without fear of upsetting the other.

What input have you had into the management of your condition?

I have a care plan, which has me at its centre alongside the support of my wife and relevant professionals. I co-wrote the plan with my consultant psychiatrist, and my involvement in creating it has made it more meaningful for me. I wrote it based on the questions my consultant asked me: What interventions or treatments are going to be delivered? Who will be responsible for these? How often will they be delivered? Where can I find support for the intervention or treatment? How are we going to evaluate how successful the intervention or treatment has been? What is the positive impact of that intervention going to look like? I think a care plan should be a one page document to ensure that it is easy to understand and implement, and that it is something that the patient and healthcare professional can take ownership of. I think that this standard of care should be offered to everyone.

What advice would you like to give to future doctors?

Many people with dementia get upset when they’re referred to as a “sufferer.” The medical profession should refrain from using such words because this defines the person and all future interactions with them. I do suffer from dementia, with suffer being the verb, but being seen as a “sufferer” makes me feel like a diminished individual. The patient must be treated as a person first and foremost.

One of the most important things to gain from a consultation is a sense that the healthcare professional cares. Because of dementia, once conversations are over I often retain very little of the content and use notes to help me remember what was said. However, I do remember how I felt, so it is important that the patient feels supported and valued. This is especially important with dementia because it is a condition that cannot be resolved through pharmaceutical or surgical means.

What things do you regularly have to think about during the day related to your condition?

I don’t retain a lot of what people tell me, which is frustrating. I am quite a positive and driven person, so some of the consequences of dementia are masked by how I present myself. Some people say that I don’t seem like I have dementia, but they don’t realise that I use coping mechanisms, such as writing things down to help me remember things—I often make lists and tick off tasks as they are completed. Dementia isn’t always about forgetting things, but the fact that learning becomes harder. Once something goes into my brain, I can retain it through self learnt strategies, but it is harder to get it into the brain in the first place.

As someone living with dementia, what are the most important outcomes for you?

I live each day as it comes. I don’t plan too far ahead, and I have something pleasant to look forward to each day. Often treatments are oriented around trying to make patients comfortable with their current health status by prompting them to recall life before their diagnosis. Such treatments—like doll therapy, or when patients are seen in wards with faux washing machines or painted bus stops— involve an element of deception that I am uncomfortable with. Professionals don’t always understand that they are doing it, but in essence they are building a world that isn’t firmly placed in the present, and that can ultimately make life more confusing. I haven’t personally experienced these methods, but I saw such an approach used in my mother’s care (she also had Alzheimer’s) and have seen them used in the care settings of other patients. For me, the care has to be truthful, sincere, and person centred.

What positive things have come out of your interactions with healthcare professionals?

I have met outstanding people. I think that previously I connected with many people on a professional level, but my condition has allowed me to engage with a range of people on an emotional level. Now I’ve retired [from school], I have also started a new teaching role as a conference speaker, talking about living with Alzheimer’s, as well as writing articles about the condition. This has given me a new purpose in life that I am proud of.

Competing interests: None declared.

Provenance and peer review: Commissioned; not externally peer reviewed.