Greater understanding, openness and awareness would make living with dementia easier, says Wendy Mitchell, who was diagnosed with early onset Alzheimer's disease at 58 years old and now writes a blog to help back-up her memory
What were the initial symptoms?
Two years ago, I hadn't been diagnosed with Alzheimer's disease yet. The word hadn't even entered my vocabulary. I was struggling with my memory, with words and concentration, but dementia hadn't entered my head. Could I have a brain tumour? Could it just be the result of the stroke I'd had 12 months prior? What a difference 18 months makes. What prompted you to seek medical help? I was renowned for a brilliant memory – I didn't forget. But my memory started to let me down badly. I'd recognise faces in front of me but couldn't always put names to the people I'd known for years. I'd forget the simplest of words in meetings. The worst episode was at work; I came out my office one day and just didn't know where I was or who all the voices around me belonged to. That's when I realised things just weren't right.
How were you diagnosed with Alzheimer's disease, and how long did the process take?
The process took about 18 months. A year after taking the initial in-depth memory tests, I returned to repeat the same tests and it was obvious my memory wasn't as it should be. A SPECT scan (a type of nuclear imaging test that creates 3-D pictures of organs) showed the area in my brain that wasn't functioning correctly, and a combination of the two led to the diagnosis.
How did you cope?
It was a bummer of a diagnosis but at least it gave an explanation for the symptoms I was having and allowed me to move on. A diagnosis finally puts an end to all the uncertainties. When you're experiencing strange symptoms your mind works overtime drumming up possible causes. I'm thankfully a positive person but, like everyone else, I have good and bad days. For me, a diagnosis has meant adapting to the challenges thrown at me. You can still live positively if you accept that changes need to be made to compensate for the bits of your brain that are no longer working as they did, and continue to adapt as the disease throws up more challenges to solve.
How have your relatives and friends coped with the diagnosis?
My daughters have been wonderful and supported me in every way, but some family and friends initially stopped communicating. When people hear the word 'dementia' they think of the end stages; they forget that if the diagnosis is early onset, you're at the beginning of the journey. It's also really important that you realise this fact yourself. That's why I decided to write my blog 'whichmeamitoday'. It was my way of showing people that I was still articulate; that part of my brain wasn't damaged. Thanks to my blog, they soon came back into the fold.
What treatment do you currently receive? Were you given a choice?
I was prescribed donepezil. Since I didn't know much about dementia at the time, it didn't feel like a choice. It's purely a medicinal treatment but practical support is also needed. 'Social prescribing' could benefit the majority of people with dementia.
Are you happy with your NHS treatment and information?
No. I have received little or no information. Post-diagnostic care is a postcode lottery and I live in a very poor postcode.
What is the most difficult aspect of having Alzheimer's disease?
The lack of awareness in both the medical world and the community at large makes day-to-day living a challenge. If there was more understanding, openness and awareness, living with dementia would be easier.
What changes have you made to help cope with the condition?
For me, a diagnosis is all about adapting. If you accept this from the start, it makes the journey a challenge rather than an insurmountable mountain. I frequently talk about 'outmanoeuvring the disease' as that implies that I can 'do' something to make life easier. I have a monthly calendar that keeps me in order for the future. I have a weekly calendar on my fridge that tells me what I'm doing each day. I also I have alarms going off all day telling me it's time to do things like take medication. My daily blog acts as my memory for all the things I've done. It has been read in over 100 countries – it's very humbling to think that others choose to read it. Since moving house, I've had to adapt to a new environment, which has been challenging to say the least but one useful aid has been having photos on my cupboards to highlight the contents, which I forget exist.
Have you had sufficient support and information on all aspects affected by your condition?
The support and information received has been gained through my own resourcefulness.
What is your greatest hope/fear for the future?
I have three fears; losing my independence, going over the edge into a world I don't recognise, and not recognising the two most important people in my life – my daughters. However, having said that, I have no control over what happens in the future, so I don't dwell on what might be. I live for today and make the most of every opportunity that comes my way.