Dementia Diaries: diverse experiences of living with dementia

This guest blog post is contributed by Philly Hare, director of Innovations in Dementia.

Having long been an admirer of Care Opinion, I recently contacted James to tell him about another, complementary, channel for the voices of people who use services – specifically, people with dementia. And James has kindly invited me to describe it here.

Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive, that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes. It’s particularly great for those who prefer to (or can only) tell their stories verbally, rather than in writing.

We currently have around 50 reporters for Dementia Diaries, all of whom are living with dementia. They report on whatever they wish – including quite often their experiences of care and health services. Here are just three out of many examples. Two are positive, but the middle one is very harrowing:

First, there is Nigel, who extols the role of the Occupational Therapist:

“I bring praises for a much underappreciated service. Peopled by a unique and inspiring group of practitioners, armed with an array of skills and problem solving techniques, and a usually annoyingly cheerful and challenging disposition. The mantra of these people would appear to be ‘Skills not Pills’, with an emphasis on what remains, not what’s gone…Their effect [on me] has been beyond positive. Without being too dramatic, this intervention saved my life.”

To hear Nigel’s full audio diary go to http://bit.ly/2CnrkF0

In a very different vein, we have Agnes’ Diary about her recent stay in Coatbridge Hospital when she had pneumonia:

“I was transferred to another ward [where] I was stripped of Agnes, I lost myself, my self-respect, my dignity. I remember thinking ‘ Who am I?’, lost in the sea of faded blues coming towards me. Who are you, coming to me, administrating. Please can you not introduce yourself? Tell me what you do, are you a nurse or a dinner lady? …Needing the toilet, I push the button, awaiting, wondering which part of these faded blue uniforms will come. Will you come with kindness? I yearn for this, but it’s so lacking. It’s awful to be administered to without kindness. It’s not human, it doesn’t heal you spiritually, it doesn’t help me to get well from my pneumonia. Lower and lower I sink into this abyss, in this sea of loneliness, adrift with only my hallucinations for comfort. They’ve become more fierce, more… I don’t know the word to call it… frightening. I now begin to pray for death, this is all too much for me.”

You can hear Agnes’ full audio diary at http://bit.ly/2Px9OQ6

And finally I bring you Tracey, who tells how her recent appointment with a Speech Therapist, ‘K’, helped her solve a few issues:

“She comes to me, so it saves me having to travel… We spoke about putting in place strategies that might help me…I have the problem with co-ordination of my tongue with my brain. I spoke to her about my dribbling - it’s not constant, but, when it happens, I’ve got to get tissues. She thinks it may be I forget to swallow my saliva sometimes and, instead of it going down, it comes out… She advised me to take small sips of fluid throughout the day to encourage and form the reflux /reflex to kick in. She has also advised grating some ginger down and steeping in some hot water.

I told K about when I went to the conference last year, and was talking to one of the consultants there, and he couldn’t grasp what I was trying to say. So, to stop this from happening, K advised me to take myself away for fifteen to thirty minutes from everyone, find a quiet area and be still for that time to rest my brain, my tongue and my mouth. It can be ‘rebooted’ for want of a better word.”

To hear Tracey’s full audio diary go to: http://bit.ly/2PuScUH

There are over 1,300 recordings on the Dementia Diaries website and many organisations are now using them for research or education.

If you’d like to hear more, go to www.dementiadiaries.org - and if you have any questions or ideas you’d like to talk through, email me at philly@myid.org.uk