Over the 20+ years since my dad was diagnosed with dementia, I’ve often thought about what his diagnosis experience was like from his perspective. We never talked about it, and of course now we’ll never be able to. Our understanding of dad’s diagnosis only came after he’d been experiencing 10 years of symptoms, and I will never be able to put a date on when dad himself was told.
I suspect he was told during either a visit to his GP (his choice was to always go alone), when the old-age psychiatrist visited him at home (later claiming he couldn’t communicate anything to us as he didn’t have dad’s permission), or when he was rehabilitating from his biggest stroke in hospital (dad had a series of TIA’s – Transient Ischaemic Attack or ‘mini strokes’ – before this which had caused his vascular dementia).
Dad’s diagnosis came in the days before Memory Clinics, and in the work I’ve done for the 11 years since dad died I’ve heard many accounts of people’s diagnosis experiences. For this, my D4Dementia 11thbirthday blog, and with this being Dementia Action Week (which is themed this year around diagnosis), I wanted to highlight some thoughts from people living with dementia who have talked about their diagnosis experiences publicly so that we can all learn from these powerful personal stories. After all, it’s the personal story of my dad’s life with dementia that inspired D4Dementia to begin with.
To do this, there was only one place to start: Dementia Diaries. This fabulous resource has more than three thousand audio and video diaries from people living with dementia. If you ever want to know the thoughts of a person, or people, living with dementia on a particular topic related to their life, Dementia Diaries is a great place to start. It makes the voices of lived experience truly accessible to all (so no excuses not to include them!).
Gail Gregory on her diagnosis
“I sit there in the clinic, my name is called aloud,
The Doctor stands in front of you, looking kind of proud.
We follow on behind him, the clunking of our feet,
To the private room, there we have to meet.
Now I am filled with sadness, I am mortified,
How I wish I wasn’t here – I’d like to go outside.
He clasps his hands together, he leans back in his chair,
He taps his notes together and flicks aside his hair.
‘I’m sorry, Mrs Gregory, we have to tell you this,
We’ve looked at all the tests and eventually come up with this.
Your memory has deteriorated in these categories,
You have Cognitive Impairment, Alzheimer’s Disease’….”
As I read Gail’s poem, and especially that opening line, “I sit there in the clinic, my name is called aloud,” I can picture my dad in the GP’s waiting room. When Gail says, “How I wish I wasn’t here – I’d like to go outside,” I think that could have very easily been my dad, he was always an outside person. And perhaps most heartbreaking of all; “Now I am filled with sadness, I am mortified.” Is that how my dad felt? I know I had an unmistakable feeling of sadness, numbness (Gail describes numbness in this diary entry) when we were told that my dad had dementia. I can only imagine how he might have felt whenever he first heard that information.
Chris Maddocks on her diagnosis
Many other diarists share their experiences and thoughts relating to diagnosis, but I wanted to share Chris’ because it’s a story I’ve been privileged to hear first-hand. Chris and I work together on a dementia training programme for NHS professionals, and Chris is also one of my guests for my September Takeover of The Caring View show.
Chris shared these thoughts in her Dementia Diary (the part about going to the appointment alone again made me think of my dad’s experiences):
“I’d had some cognitive problems following a stroke, but when I was 60 I knew that there was just something wrong with my head. Went to my GP and told her this and she replied that she was there for my physical health and not my mental health. I left the surgery in tears and I didn’t know what to do. A few months later I had – I couldn’t use my hands properly, and I ended up in the hospital and I was referred there to the elderly care assessment unit – not a very nice thought when you’re 60 years of age.
Anyway, when I went there I went on my own, thinking it was just an assessment, and once there I had my diagnosis of early-onset vascular dementia. I can remember that as soon as the doctor said the word ‘dementia’, I didn’t remember anything else that he said….”
More diagnosis resources
For Dementia Action Week, Alzheimer’s Society have released this film sharing three different people’s experiences of diagnosis
You may also want to access:
- Dementia UK, including their Admiral Nurse service
- Diagnosis information from Alzheimer’s Society
- Information from the NHS on the dementia diagnostic pathway
I’ve also written numerous blog posts topics relating to diagnosis, including:
- What is dementia?
- Know a little more about dementia
- Delivering a dementia diagnosis
- Diagnosis – The day and the aftermath
- Ten lost years
- Don’t wait for a crisis point
Until next time…