Paul Edwards – Director of Clinical services at Dementia UK – shares new statistics showing the lack of support for people affected by dementia and the solutions needed to improve the health care crisis.
People who contact our Helpline or attend our clinics, often tell us that they are not given enough or sometimes any guidance following diagnosis and have no idea where to turn for help.
We recently conducted research, which shows that only 53% of people who know or knew someone with a diagnosis of dementia are aware of ‘all or most of the types of support available for people living with dementia’ in the UK.*.
This lack of knowledge can be attributed to disjointed post-diagnostic care from health services; dementia has long been overlooked when it comes to health and social care provision despite being recognised as the leading cause of death in the UK.**
With well-documented shortages in the health and social care workforce, caring responsibilities often fall to loved ones. Our research showed that family and friends are the most common source of support for people with dementia, with 45% of people who know someone with a diagnosis saying the person is, or was, supported by family and friends compared to just 33% receiving support from a GP and 24% from social services.*.
This is putting pressure on family members who need support, too. A diagnosis of dementia impacts the whole family — not just the person with the diagnosis. It’s important for carers to seek out support for themselves as the caring role can be huge and requires time and adaptability.
It’s clear that more specialist support is urgently needed to help support this huge and growing health crisis. In addition to addressing the gulf between health and social care services, we also need to see more specialist dementia nurses, improved local support services and greater access to at-home care options. These three things were identified as the most beneficial forms of support for people impacted by dementia.
*Data taken from a survey of 3,008 adults conducted by Censuswide in July 2023
Two years ago, Dementia UK partnered with the Chinese Welfare Trust to launch a new dementia specialist Admiral Nurse clinic to support Chinese and South-East Asian families. Admiral Nurse Emily Ka-Hei Lui reflects on the pilot service and its early achievements.
Thea Sobers is a Research Assistant at Dementia UK. Her past work has focused on overcoming barriers to dementia support for Black, African and Caribbean communities.
Hannah Gardner, Consultant Admiral Nurse for Children and Young People, shares tips on how young dementia carers can look after themselves during the holidays.
