Katherine O'DonnellNov 19, 2022
I'm the primary #caregiver for a person with #dementia.
It's not something I've ever discussed on social media, certainly not in the other place, yet Mastodon they say is gentler.
The welfare of the person with dementia is always and rightly uppermost.
But I want to talk about carers.
Dementia is the leading cause of death and last week Jeremy Corbyn amplified calls for a National Care Service.
I think he's right, but without my own experience I'd not have understood the urgency.
Show threadKatherine O'DonnellNov 19, 2022
I did know that NHS and social services were overwhelmed with the rise in dementia cases, but I didn't understand how much it impacts other services until I began talking to and hearing the experiences of other carers.
The work that is done caring for people with dementia in the UK is overwhelmingly carried out voluntarily, is unpaid and is often poorly supported.
Show threadKatherine O'DonnellNov 19, 2022
To be clear, my loved one with dementia is not in the UK but resident in France and I am caring for them in France.
It's makes for some very interesting comparisons in social, political and practical attitudes to help.
Show threadKatherine O'DonnellNov 19, 2022
But for now, back to the UK.
The cycle of care seems to me to follow several patterns, the most familiar of which is the one that also describes our situation.
It goes like this: prior to diagnosis, the person with dementia (PWD) begins to experience problems with coping with everyday stuff. This escalates until, partners, friends and family step in to help.
They notice changes in ability and mood. The workload increases as the illness progresses ....
Show threadKatherine O'Donnell
... and at this point circumstances psh forward the primary carer.
Now, this is by no means always the most able or financially flexible person in the picture. There are many reasons and we can talk about that later. But when that person becomes the primary carer, their lives and situation change drastically - and that is where a National Care Service could work to alleviate the cascade of health and financial consequences that come down upon carers and society.
Nov 19, 2022 at 12:14pmWeb
Show threadKatherine O'DonnellNov 19, 2022
Now, I'll have to pause here as my PWD needs me. But we'll pick this up later. I'm most interested to know your thoughts and experiences.
Show threadKatherine O'DonnellNov 19, 2022
So, how does caring for a person with dementia impact the lives of the caregivers?
As the PWD loses capacity to do mundane things such as keep up with their personal admin, paying bills, doing banking and managing their own healthcare, someone else has to step in. It's not trivial, done-in-flash stuff. It's the visits to the doctor and dentist, the unpicking of an often chaotic situation that has built up as the illness begins to disrupt thinking.
Show threadKatherine O'DonnellNov 19, 2022
Changes in behaviour and capability can be slow or abrupt and severe ... or both. The caregiver is obliged to adapt to those needs whatever the demands of their own work, family and health circumstances.
That so many do take on this task and cope selflessly and heroically is testament to our human capacity for love and endurance. But it is also terribly wrong that we allow them little or no help and the consequences of this failure are felt across society.
Show threadKatherine O'DonnellNov 20, 2022
Caregiving to people with #dementia ends in one of two ways - the death of the PWD or their needs and safeguarding becoming so overwhelmingly demanding that they can only be met by a team in a care home.
Along the way, the caregiver usually has to give up work, vital social and family commitments, their own wellbeing and health.
Carer Burnout is reached at the point where nobody could go on alone.
But almost always, they go on alone.
Show threadKatherine O'DonnellNov 20, 2022
The financial consequences are disastrous. In the UK, people may be forced to sell their homes to pay for residential care. https://www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/do-i-have-to-sell-my-home-to-pay-for-care/
It is often the only asset the PWD might have. Hopes that they might help their children and grandchildren turn to ashes.
Caregivers suffer ruinous financial consequences, too. Unable to work, in the UK they can claim £69.70 a week in #CarersAllowance - far, far below the poverty threshold.
Show threadKatherine O'DonnellNov 20, 2022
So, often by the time carer comes to the end of their caregiving, they are carrying forward a heap of problems they didn't have before:
Poor health (depression, PTSD, anxiety, bad back etc)
Broken and disrupted social networks
Financial hardship
Pension issues
Career loss
Loss of inheritance
These in turn settle on the next generation down and so on.
Show threadKatherine O'DonnellNov 20, 2022
We have to ask ourselves whether losses thus inflicted on society in ever greater numbers are worth it to save the investment and ongoing costs of a National Care Service?
I'd say that the answer in a progressive civilised society is OF COURSE NOT. We need a National Care Service. We need it to be well funded and generous because almost all of us will require its services eventually.