Been to a Dementia Conference recently? Ever? Me neither. So of course I accepted the invitation from Carers Bucks and so, last Friday, joined the gentle throng at The Gateway, Aylesbury.
The conference aimed to bring those living with dementia and their carers closer to Bucks policy makers, support charities and organisations. Thoughtfully, so more carers could attend, people were on hand should anyone need a break from the main auditorium.
There was a great turn out and it was good to see a few friends from my Carers Bucks group: Jenny, Brian and Lynn.
The agenda (abridged)
- Wendy Mitchell on adapting to life with dementia
- Buckinghamshire experiences from people with memory impairment and carers
- A poem and a performance by the local Carers Choir
- Opportunity to share our views on Bucks dementia services
- Q&A to a panel of service providers, review and next steps
Listening to fellow attendees, many were seeking support from Bucks organisations in order to better ‘self manage’ memory impairment and dementia. And as one gentleman eloquently and emotionally put it, hope for the future.
A trailblazer’s point of view
Wendy Mitchell from Beverley, near Hull, was first up. A good scheduling decision as it turned out, because she was hope-full.
I read Wendy’s book ‘Someone I used to know’ earlier this year. I think it’s awesome. Like no other book I’d read, it enlightened me on supporting someone through their dementia diagnosis and beyond.
Wendy’s book is insightful because she wrote it after being diagnosed with early-onset dementia herself, four years ago. Wendy also blogs to record her memories and advocate for dementia understanding and research. She’s also a magnificent twitterer @WendyPMitchell.
At the conference, Wendy made the following observations.
Too often nowadays, a life with dementia starts with a diagnosis delivered with a cocked head, a pitying smile, negative language (‘sorry, there’s nothing we can do’), perhaps a prescription and a handshake that feels like a brush off. No encouragement offered, no explanation of how life might change, how you can prepare, just a feeling of sadness.
[Sorry to say, that was Marj’s experience of diagnosis too, except that her assessment and diagnosis was delivered to her son. Makes me wonder if older people routinely bear the added indignity of being sidelined during their assessment and diagnosis.]
What effect might this be having? What if the newly diagnosed believe the white coated professional delivering the news, believe they’re helpless, believe nothing’s to be done?
Wendy’s point was that we know dementia is a degenerative disease and there’s no cure. The diagnosis is bad enough, especially if you’re ‘early-onset’ (under 65), so let’s stop using words like ‘suffering with’, ‘senile’ and ‘old age’. These easy-to-change words don’t set a person up for their best life with dementia. These words can even make or break a life, prolong societal stigma and stop people from seeking the help they need. If you’re told you are ‘suffering’, why not believe it?
It’s no wonder many despair. How different would it be if this unwelcome, life limiting diagnosis came with positive support and a different mind-set on how to live a different life?
We were reminded that there is a beginning and a middle to dementia. Not just an end, that so many of us jump straight to when we imagine dementia. It’s possible to live, and live well with dementia, but it takes ingenuity, cunning and new strategies to see the opportunities in this new life.
Wendy shared how she has prepared for and continually modified her home and life to outwit the challenges her brain throws at her. She outlined how much you can still do though differently, with support, a screwdriver, a camera and a sense of humour.
Living as fully and independently as you can every day, really stretching yourself helps. Having a rest or having other people help too much leads to forgetting. The story of how Wendy’s two week break from typing meant having to re-learn all over again was sobering. She’s not stopped typing since.
Wendy acknowledges that not everyone will be able to, or want to do what she has done, but she’s determined to improve lives for others who’ll receive a dementia diagnosis.
I’ve first-hand experience of how unfair, frustrating and gruelling dementia can be in its later stages for older adults. Wendy’s book helped me reframe. For example, I now focus on the emotions I bring to Marj’s care, making sure happiness is in plain sight. It makes a big difference for both of us.
We then heard from some equally inspirational local people. Carer H read a moving poem written to her husband. Another, S who cares for her husband, shared her thoughts on the help gained from carer support groups. And T illustrated how especially challenging it is for young people who support dependant parents. P and S, both diagnosed with memory impairment, explained that people being unable to either see or understand their illness is doubly frustrating. They gave the following advice based on their experiences:
- Find supportive family and friends.
- Take your care giver or supportive friend or family member with you to diagnosis.
- Seek early signposting to support so you can learn how to manage new challenges e.g. developing strategies to remember important people.
- Seek help from specialist support groups. In one early on-set group, experts often visit to help its members plan for the future.
- Competing in regular, hard exercise has a positive impact on confidence.
- In any case, go outside, get out of the house even more than before.
- Research clinical terminology to prepare for meetings with medical professionals.
- Keep unhelpful stress down by seeking support to help challenge decisions you may not agree with (e.g. the DVLA revoking your driving license).
Local feedback on Bucks dementia support services
As a group, by table, we we asked to share our individual feedback on local dementia support services. The gentle but sure facilitator Mike steered us through this session.
From my table, I heard…
- Things working well: centres of excellence (e.g. Lindengate), support groups, advocates like Carers Bucks and local services screened by Age UK.
- Things not working so well: you’re given a diagnosis then expected to ‘get on with it’, the lack of follow up post diagnosis, no annual medicine review and a frustrating lack of joined up thinking amongst support services.
- The gaps in support: low/no information shared by GPs on the support that may be available to help with new life strategies and options, little respite care available of different time lengths and at reasonable cost.
- Suggestions for an efficient dementia service: design a new service ground up from a ‘customer journey’ perspective, a single point of contact for accessing coordinated support and more trained and valued carers.
Oxon and Bucks service providers at the conference
During lunch and the afternoon break, the following service providers exhibited at stalls in the lobby. I’ve expanded on what these organisations do in a sister post (#20), so they’re easy to locate later. If I’ve missed any, do get in touch and I’ll add them.
Age UK Bucks, Alzheimer’s Society, Bucks Mind, Dementia UK , Bucks and Oxon Prevention Matters, Healthwatch Bucks, Healthwatch Oxon, Carers Bucks, Live Well Stay Well, Active Bucks, Lindengate, NHS Bucks, NRS Healthcare, Bucks and Surrey trading standards.
The wrap up
The conference feedback shared and subsequent panel Q&A will be sent to attendees at a later date. I’ll ask if I can share it all here too*.
To Alzheimer’s Society, Carers Bucks and NHS Bucks and all the attending service providers, thank you very much for arranging the conference, listening and offering your practical support to everyone.
And finally, thank you to the generous and industrious local knitters (names not known at time of post) who kindly donated hillocks of free ‘fiddle muffs’. As an ex-knitter herself, Marj enjoys hers and it’ll be useful as it gets colder too. There’s one for Christmas too.
*13 Jan 2019 update: here is a link to the feedback collated and issued by the conference organisers, Dementia Conference Report 2018