Dementia: we must try harder

The growing public awareness of dementia requires a strong health and social care response, says Scie’s Annie Stevenson ahead of a major conference on dementia

In 2007, best-selling author Sir Terry Pratchett announced that he was suffering from dementia – or “an embuggerance” as he more eloquently put it. Sir Terry followed with a clarification: “PS. I would just like to draw attention to everyone reading the above that this should be interpreted as ‘I am not dead’.”

Nor are the 700,000 people living with dementia in the UK today. And that’s the point – people live with dementia, they don’t just die from it. Health, social care and community services, as well as government, family and friends all have a role to play in enabling people with dementia to live fulfilling, healthy and dignified lives.

Dementia costs £17bn a year to deal with at the moment. It is estimated that more than one million people in the UK will have the condition by 2025. Most of us will be affected – either as someone with dementia, a relative, carer, worker or just a taxpayer.

Professional, public and political awareness, early diagnosis, support for carers, and research and development of effective care are essential. It is hoped that the government’s delayed dementia strategy will provide an impetus to improving dementia care.

Awareness of impact

Everyone working with or for older people – from home and residential care workers, to local authority planners and commissioners – needs to be aware of the physical, psychological and emotional impact of dementia on individuals and their families. It is a pernicious disease that slowly erodes personality, memory and relationships. It is isolating, depressing and incurable. But the person is still there. Good care, support and understanding can slow its development and make it less frightening and stressful.

Dementia is a medical condition that requires a strong health response in terms of diagnosis and treatment, together with effective social care support for individuals and carers. GPs are the gateway to care for most older people but, in a 2007 survey, only 30% felt that they were suitably trained to diagnose and manage dementia.

Care services minister Phil Hope recently announced that every GP in England will be trained to diagnose dementia and that memory clinics should be set up in every town to provide treatment and support. This is excellent news and should help to increase knowledge, awareness and confidence and develop more personalised support and care.

Care guidelines

Healthcare professionals in the NHS and social care staff in residential and nursing homes are now working to the same dementia care guidelines, providing a basis for more integrated, co-ordinated services. The guidelines, published jointly by National Institute for Health and Clinical Excellence (Nice) and the Social Care Institute for Excellence (Scie), cover the identification, treatment and care of people with dementia and the support that should be provided for carers. The creation of the Care Quality Commission as the single regulator for health, social care and mental health offers an opportunity to co-ordinate standards of care across all settings. It is hoped that dementia will be a high priority for CQC.

Care management teams must prioritise dementia care, including the provision of good quality information, access to assessment and services at the right time, and support for carers, many of whom will be older people themselves. Recognition of the impact on carers as the condition develops is essential. Flexible respite breaks, reliable information and empathy can enable carers to fulfil the role that they voluntarily take on.

Research still limited

Professional understanding of dementia and its management is improving – but research is still limited and underfunded compared with other major diseases.

But public awareness is increasing thanks largely to the work of campaigning voluntary sector organisations, high-profile individuals willing to speak about their condition and – more recently – the three main political parties. Dementia has even become a storyline in The Archers. As with cancer in previous generations, increasing awareness and understanding can result in early and accurate diagnosis, reduction in stress and massively improved quality of life. Let’s hope dementia follows this path.

Government dementia strategy

Expert guidance on elderly people

More on dementia from Community Care

Annie Stevenson is head of older people’s services at the Social Care Institute for Excellence

Published in the 22 January edition of Community Care 2009 under the heading Challenge of an Ageing Society