Be prepared for a dementia diagnosis to be delivered in an insensitive way, clinical practitioners could have a more constructive mindset…
A trailblazer’s point of view
Wendy Mitchell from Beverley, near Hull, was first up at a Bucks dementia conference I went to, in September 2018. 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 dementia 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, think they’re helpless and that nothing can 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 are told you are ‘suffering’, then you are likely to 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 mindset on how to live a different life?
It is possible to live with dementia
Wendy reminded us 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 has 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.
Local carer perspectives
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 she’d gained from carer support groups. And T illustrated how especially challenging it is for young people who support dependent parents. P and S, both diagnosed with memory impairment, explained that people being unable to either see or understand their illness was doubly frustrating. They gave the following advice based on their experiences:
- Find supportive family and friends.
- Take your caregiver 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 carer feedback on Bucks dementia support services
We were asked to share our feedback on local dementia support services.
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 well: you’re given a diagnosis then you’re 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 a 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 resulting in better trained and higher valued carers.
Oxon and Bucks service providers at the dementia conference
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.
*13 Jan 2019 update: here is a link to the feedback collated and issued by the conference organisers, Dementia Conference Report 2018