This week (17-23 May) marks Dementia Action Week. Our guest Alzheimer’s Society invites you to take action to improve the lives of people affected by dementia.
This is a guest post by Kate Lee of Alzheimer’s Society. All views expressed are her own and not necessarily shared by Which?.
This week, I stood outside the Houses of Parliament to launch our #CureTheCareSystem campaign for Dementia Action Week with Elisabeth, an artist who has dementia, and Trevor, whose wife Yvonne is in a care home, and who has tirelessly campaigned alongside us to make sure the voices of people like theirs are heard.
People affected by dementia have been hit hardest by the pandemic, which has exposed the dire state of our social care system like never before – and I am sure you will have noticed that their experiences have never been far from the headlines over the last year.
850,000 people in the UK are living with the condition, set to increase to 1 million by 2025, and this week Alzheimer’s Society launched a vital campaign that shows the stark reality of caring for a family member with dementia, that I hope will resonate with all who see it whether or not they have a personal connection.
Our social care system is broken
When you are diagnosed with any other illness, our wonderful NHS kicks in and the state support is never far away; with dementia, people have told us they feel abandoned as there is simply no support or funding in place.
Our Dementia Connect support line hears from countless anxious families, absolutely desperate for help, not knowing where to turn, and panicking about how they will fund the astronomical cost of the care their loved one so desperately needs.
Will someone reliably be there to make sure their loved one eats, gets washed, or to make sure they take their essential medication if they aren’t with them? And it just doesn’t make sense for our economy: family members have to give up employment to become unpaid carers, when they should be spending that precious time as a spouse or daughter.
The lack of resource in the care system also contributes to unnecessary hospital admissions that cost the NHS hundreds of millions; we launched data this week revealing tens of thousands of people with dementia were being rushed to hospital each year (gone up an astonishing 27%) because inadequate social care left them unprotected from infections, falls and dehydration.
Going into hospital is already an alarming experience, but imagine how overwhelming it must be for someone with dementia who cannot keep track of their diagnosis, treatment, or potentially remember why they are there. These terrifying visits could have been avoided with an adequate care system that allowed professional carers (doing their absolute best under incredible pressure) enough resource, training and time to be able to care for the complex needs of someone with dementia who may need to be persuaded to eat, or need more reassurance from a carer in their home.
People shouldn’t have to choose between a bath or a meal because their professional carer only has an allotted time with them, or be put to bed at 6pm because that is the only time their carer can visit.
I have spoken to countless people affected by dementia since joining Alzheimer’s Society, and it has been an absolute joy to meet people (mainly virtually!) and hear their wonderful stories of love; life- affirming stories about mothers, fathers, wives, husbands and friends, and how good care can make such a difference.
However, I have also heard from people who are heartbroken, permanently worried about the future, anxious they will be burdening their loved ones as their condition progresses. They don’t want to endlessly repeat their story to countless numbers of health and care workers because there is no centralised records system, or endlessly re-negotiate for even basic care or respite.
We need a personalised care system, free like the NHS, high quality, easy to access and navigate no matter where you live, to allow people with dementia and their families the dignity they deserve. Our governments need to cure the care system to make sure that these people aren’t forgotten.
I hope that this Dementia Action Week, the government will finally commit to the promise made by Boris Johnson on the steps of Downing Street when he came to power that he would fix it once and for all.
I urge you to visit alzheimers.org.uk/DAW to sign our petition and urge the Government to reform the social care system into something that can help families across the UK, giving precious family time back and allowing people with dementia to live independently, like they want to, for longer.
The legacy from this pandemic must be a social care system that we want to grow old in, that will serve and protect generations to come, and I urge you to join us in making that happen.
To support Dementia Action Week (17-23 May 2021) and sign our petition to #CureTheCareSystem, visit alzheimers.org.uk/DAW.
For information, advice and support call Alzheimer’s Society Dementia Connect support line (0333 150 345) or visit alzheimers.org.uk.
This was a guest post by Kate Lee of Alzheimer’s Society. All views expressed were her own and not necessarily shared by Which?.