Remarkable Lives blog - July 2018
Remarkable Lives blog
Blog 1: Introducing Remarkable Lives, by Founder, Owen McNeir
The idea for Remarkable Lives was born out of professional and personal reasons. Professionally, I came up with the idea while advising a care home on their fundraising and marketing strategy. I was helping them to articulate their story and one day found myself in a room with three residents. I asked them about their lives and they took me on a fascinating and unexpected journey back in time. The more residents I spoke to, the more I realised everyone’s life is remarkable in some way and to someone. But what I also discovered was that many of their life stories were unknown to both their family and carers.
On a personal level, around this time, my own grandfather died. At his funeral, I listened in shock and surprise as the vicar read out things about his life that I’d never known. All I wanted to do was go and find him and ask more questions, but of course, I couldn’t.
So, for both reasons I was inspired to find a way for all of us to capture and save memories of our older relatives before it’s too late, and also to use these life stories as a way to help care providers deliver better care by getting to know the whole person – connecting their past, present and future.
For two years I immersed myself in the world of later life – visiting care homes, hospices, and spending time with older people I met through community groups, running reminiscence sessions and recording their stories. I learned about the problems in social care, the realities of loneliness and isolation, the effect on people’s psychological as well as physical wellbeing and, of course, the challenges faced by people living with dementia.
In one particular care home, I met Derek. He was 90 years old.
His carers told me how they’d been struggling with his outbursts and moods. Apparently he shouted a lot and barked orders at everyone. I asked them about Derek’s background but their knowledge was pretty vague; he’d been at the home for a few years and there had been several changes of staff in that time. Being so busy, their priority, they told me, were his immediate care needs. There wasn’t much time for reading his file. So I spent some time with Derek and, with the help of his daughters, pieced together his life story.
Derek said goodbye to his family aged 15 and went to join the Merchant Navy. He travelled the world for 20 years, eventually becoming Master Mariner - the highest rating in the Merchant Navy. They weren’t nurses he was barking at, they were sailors.
The response I got when I shared his life story with the care and activities staff was incredible. But his wider family also learned things about Derek they’d never known. It was like watching a jigsaw being put back together. But why does this happen, when we’ve never been more connected?
A systemic and social problem
We live in a disconnected and ageist society that sees later life as a burden. We’re so busy in our own lives with college, careers and kids, that we switch off thoughts of later life.
And care staff are rushed off their feet with paperwork and duplication of tasks that take up hours - time that could be spent really getting to know the human stories of the people in their care.
So this systemic and social problem is what I wanted to change, because we can’t afford to be this disconnected.
In developing a solution, I identified two specific things. Again, one systemic and one social:
- We all have medical records, but there’s no equivalent record of our life - what makes us who we are.
- And millions of us use social media, but there’s none that chronicles our life story from the beginning and none that’s dedicated to later life.
As a result, we see:
- Reduced engagement with older people and a lack of empathy
- Loss of memories
- Increased loneliness and isolation
- Low caregiver motivation and staff retention
- Duplication of tasks and arduous form-filling for care teams
So, we’ve developed a solution using technology that does two things.
First, we’re going to provide the public with a free to use App – a sort of digital scrapbook to help older people tell their life story, saving their memories on an interactive, chronological timeline and enriched with photos and audio. It will bring families, friends and carers together through private sharing, allowing everyone to contribute their own memories from wherever they are in the world.
Second, working with care staff and community groups we’ve co-designed a platform that puts these human stories at the heart of care. Our Care App has a range of features to help save organisations time and money by digitizing information and tasks. But most importantly, it provides a way to deliver better care and support by getting to know the whole person.
It works like a care passport, so the next person you meet on your journey through later life - a doctor, nurse, carer, therapist, social worker - will know much more about who you are. Much more than just a collection of symptoms and tasks. For this reason and following feedback we’ve received, we’ve been asked to add a digital ’This is Me’ style feature to provide a simple & practical method of recording up to date information about an individual’s needs and preferences. Especially useful for helping health and social care professionals provide person-centred care for people living with dementia, but also to understand anyone who might be distressed or confused and struggling to communicate.
The app for ageing well, for everyone
Our vision is to encourage everyone – all age groups – to take ownership of their later life earlier on, and this starts with a prevention-oriented approach: engaging with our older relatives now to make human interaction across the generations easier for both relatives and care professionals.
By putting the lived experience of people living with dementia at the heart of their care, Remarkable Lives will provide a way to deliver preventative care and support by increasing empathy, understanding behaviours, and knowing the whole person, making it simple to provide appropriate cost-effective treatment and support at the right time by identifying people as much from their life experience as from their medical history.
How you can get involved
We want to demonstrate to everyone involved in supporting and caring for a person living with dementia in Essex, that Remarkable Lives is a practical, intuitive and effective solution. But also, that it brings something refreshing and positive to those living with dementia, by actively celebrating a person’s life story, by reconnecting family and friends and saving precious memories, together.
Above all, we want to make sure Remarkable Lives works for families and care providers, so here’s how to get involved:
- Families: on 1st August we are releasing the first version of our mobile app on the Apple store and we’d love as many people as possible to download it (it’s free!), create a profile for a relative and start saving memories on the timeline, together. (We will be releasing an Android version soon, as well as making it available on tablet.)
- Care providers and Activity therapists: we’d really like you to download the app as well from 1st August, but we also want your help in trying out our care platform and taking part in a co-design workshop, to include people living with dementia and family members.
To participate please contact firstname.lastname@example.org.