World Alzheimer’s Day is September 21
Let’s shine a light on dementia and the impact it has on carers and families across the UK.
Did you know that dementia is now the UK’s biggest killer?
Every three minutes, someone in the UK develops dementia. One in three people born today will go on to develop the condition in their lifetime. These are stark and sobering statistics shared by the Alzheimer’s Society and they reflect a reality that many carers in West Sussex know all too well.
Yet, despite its scale, one in five people affected by dementia receive no support at all – no health care, social care, or financial assistance.
A System Under Pressure
In the largest-ever survey of people affected by dementia, Alzheimer’s Society has laid bare the urgent need for change. The Lived Experience Survey captures the voices of almost 3,500 people affected by dementia, including those living in the South East. The responses are made up of those living with the condition, unpaid carers, and loved ones.
The report reveals:
- Only 1 in 5 people received any support after diagnosis
- Less than half of those who did were satisfied with the support received
- Just 29% found dementia care easy to access
- 52% faced long waits for diagnosis
- 38% of unpaid carers don’t feel respected by social care professionals
- Over 1 in 3 carers report a decline in their mental health
- Nearly 25% of carers feel socially isolated
Real Voices, Real Struggles
A local carer who supports her mother with dementia shared:
“I care for my mother with dementia. My father, who also had dementia, passed away two years ago. I feel mum is safer with me now as the care system has deteriorated. It’s such a relief to have Carers Support to call on, especially the Carer Health and Wellbeing Grant – it gives me precious ‘me-time’ each year. Thank you.”
Barriers to Support
The survey highlights key challenges for carers and those living with dementia, including stigma and inequality. Two in five people with dementia feel ashamed or stigmatised, with many avoiding diagnosis out of fear of what others may think.
Among unpaid carers from ethnically diverse backgrounds, 60% do not feel respected by social care professionals. These figures show the system is not just under pressure – it’s failing some of the most vulnerable.
Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:
“Almost a million people are living with dementia in the UK, yet its scale and day-to-day realities often remain hidden. Far too many people are going without the help they need – whether it’s support after a diagnosis, trained care professionals, or someone to turn to when things get hard.”
Over 147,000 People in the South East Are Living with Dementia
And around a third still don’t have a formal diagnosis. We need rapid improvements in diagnosis, care, and access to local support – because no one should face dementia alone.
A Helping Hand: Impact Initiatives: Workability 🤝
Impact Initiatives is a Brighton-based charity that works across Sussex to help people live healthy and fulfilling lives. Their service, Workability, is designed to help carers and people with disabilities find suitable employment.
- How they can help: Workability provides one-to-one support to help you explore your options, develop a plan of action, and build key skills like CV writing and interview techniques. They can also link you with local employers and offer ongoing support once you’re in employment.
- They understand your situation: Crucially, Workability looks for employment opportunities that fit around your caring responsibilities. They recognise the unique challenges you face and provide confidential, free support to help you find a job or apprenticeship that works for you.
Workability understands your challenges and can provide the guidance you need to find an apprenticeship that works for you. Reach out to them to start a conversation about your future.
How You Can Find Support
If you are caring for someone with dementia, you’re not alone. Support is available:
- Visit our Dementia and Memory Loss page for practical advice, services, and carer group listings.
- Join a local carer group – like one carer said:
“I go to the Sage House Carer Support group for dementia carers. Hearing others’ experiences helps me feel less isolated.”
- Explore the Alzheimer’s Society West Sussex group sessions.
- Learn more about becoming a Dementia Friend and help reduce stigma in your community.
For national support, contact the Alzheimer’s Society Dementia Support Line:
0333 150 3456
alzheimersociety.org.uk
This World Alzheimer’s Day, we stand with those living with dementia, their carers, and the families walking this difficult journey. Together, we can raise awareness, challenge stigma, and push for real change in how our society supports people affected by dementia.
