Growing dementia care concerns voiced by experts and those in the front line 

The Alzheimer’s Dementia & Care Show today announced initial findings from its “Dementia: Who Cares?” Roundtable. The virtual event was held earlier this month to mark the 10th anniversary of the show which this year is taking place at the Business Design Centre in London, 3 – 4 March.

Leading care professionals were questioned about the level of support and quality of care available to people living with dementia, with the aim identifying key changes and trends in dementia care over the past decade. Interviews with people diagnosed and living with dementia over the past ten years were also undertaken.

While all respondents agreed general awareness of dementia had increased, resulting in a better understanding of the challenges facing those diagnosed and their carers, most were unanimous about the continued lack of care support available to individuals and their family carers. This concern was highlighted further in view of the government’s ongoing objective of achieving a nationwide 66% diagnosis rate for dementia.  According to Alzheimer’s Research, with the cost of caring for people with dementia already at more than £25bn a year, it is estimated around 1.6 million people in the UK will be affected by dementia by 2050 – up from 900,000 today.

Responding in the “Dementia: Who Cares?” roundtable Dr Hilda Hayo, Chief Admiral Nurse and CEO of Dementia UK said: “Due to many years of cuts to services and support, lack of investment and low numbers of staff due to poor pay and conditions, social care is not able to meet the needs of people living with dementia and their families. More needs to be spent on social care and the health service but unfortunately due to the current economic conditions I can only see the problems worsening over time due to chronic lack of investment and an ever-reducing workforce.”

She added: “It’s really bad for families impacted by dementia at present. If dementia training and professional development was incorporated into health and social care training programmes in a meaningful way the care and support of people living with dementia would be considerably better.”

Jackie Pool, an Occupational Therapist and dementia champion specialising in leadership and workforce development in dementia, concurred, saying: “In 2010 when the NVQ was replaced with the QCF in Health and Social Care I developed for Skills for Care the award and certificate modules for dementia at levels 2 and 3. I was hopeful that this would lead to a mandatory national dementia qualification but this has not been the case with dementia modules being optional. Knowledge and skills in this highly specialised area of care work is essential and sadly, I am not witnessing an improvement in this area. Training on its own is never enough, there must be the resources and the will to ensure that knowledge is translated into evidence-based best practice so that people living with dementia are provided with health and social care equality.”

Professor Martin Green OBE, Chief Executive: Care England added: “The social care system is broken, and it only delivers support when people are in crisis. Given the numbers of people who are living with dementia, there needs to be far more training, particularly GPs and more training within the NHS and social care services. We need a radical root and branch reform of both health and social care, and there needs to be a focus on helping people with long-term conditions live well. There also needs to be appropriate interventions at early stages that will help people mitigate the effects of a long-term conditions such as Dementias.

“The one thing I would like to see delivered in the next three years is a much better approach to how we access social care, and a proper long-term funding strategy that will enable social care services to develop in ways that support people right the way through their journey of dementia.”

Peter Berry, an author who was diagnosed with dementia at the age of 52, said when asked if there is enough dementia training available for professional carers: “Professionals understand the mechanics of the subject but not how it is to live life with dementia. It’s like driving a car – people can drive a car without realising what’s happening in the engine room. Professionals need to be able to drive the car and understand how it drives.”

Mr Berry who lives at home, added: “There should be more community support.  Everyone’s dementia is different and so the social care system is not necessarily set up to work with or support individuals.”

Keith Oliver, a former headmaster who has been living with dementia for ten years thinks there’s a need for tighter integration between the NHS and social care: “We worship the NHS but social care is the poor relation. If we fix social care for people with dementia it will fix wider problems in other areas of healthcare. More money is obvious but not the total answer. There’s a need to engender confidence, trust, respect, understanding, and better training which is mediocre at best to inadequate at worst. Greater status is needed for social care.”

Other participants taking part in the roundtable included Dr Emer MacSweeney, CEO of Re:Cognition Health – the organisation responsible for the ground-breaking clinical trials for lecanemab – and Dr Jane Pritchard, Consultant Admiral Nurse for The Good Care Group.

Nigel Ward, who facilitated “Dementia: Who Cares?” and is the Founder of The Alzheimer’s Dementia & Care Show commented: “During the 10 years we have been running our show I am constantly amazed by the stoicism and commitment shown by members of public from all walks of life. They attend in increasing numbers from all over the UK and even further afield. Many are unpaid carers of immediate family members, relatives or friends living with dementia and in urgent need of expert advice, guidance and practical aids to help them cope with the day to day challenges they face.  At the same time, our event continues to be in demand from the UK’s hardworking cohort of dementia care professionals.”