Dementia is the defining health and social care challenge of our time. Nearly one million people in the UK are living with the condition and it is the leading cause of death. One in two of us will be affected by dementia in our lifetime, either through a diagnosis or by caring for a loved one.
Despite the known and growing impact of dementia, acknowledged by the political class over the last decade or more, the disease has been removed from NHS England’s Planning Guidance this year – with the full knowledge and support of the health secretary, Wes Streeting. The word ‘dementia’ does not feature once. The best thing we can do to support people living with dementia is to enable them to get a diagnosis, but the long-standing diagnosis target has also been scrapped. This is not the ‘change’ people voted for. Labour promised to prioritise the NHS – yet dementia has been dropped from the agenda entirely. We must put dementia firmly back on the health and social care agenda to ensure families get the high-quality care and support they need. Improving dementia care must be a priority.
First and foremost, dementia has a huge social impact and places extraordinary pressure on individuals and family members with no formal caring qualifications and who may be living with poor health themselves. But it also has a significant impact on the economy and puts pressure on the public purse – something the Treasury is more likely to respond to. The total cost of dementia in the UK stands at a staggering £42 billion per year. One in four hospital beds is occupied by someone with dementia. These patients stay in hospital twice as long, on average, as those without the condition. There isn’t the support outside hospitals to allow for timely discharge to an environment which is both better for the patient and more cost effective. Against this backdrop – which is no secret – the decision to remove the disease from the Planning Guidance seems particularly unfathomable. It makes it more likely, not less, that the experience of those affected by dementia will get worse while the costs to the public purse will grow.
Beyond the statistics, the human impact of dementia is devastating. Families are left to cope alone with the daily challenges of the disease. Carers and family members have become physically and emotionally drained, facing an uphill battle to access the right support. Many are at breaking point, but they are the people the “system” relies on. A new report by Maria Petrillo from the Centre for Care has demonstrated the financial penalty of undertaking a caring role is greater for women.
The lack of a clear, integrated support pathway means that people with dementia and their families face unnecessary obstacles to accessing the care they need. The structural problem with separation of health care – universal and free at the point of use, and social care – means tested and the responsibility of local councils – is perhaps best (or worst) demonstrated by the experiences of people with dementia. The broken divide between NHS healthcare and council-run social care is failing people with dementia. The forthcoming NHS 10-Year Plan must commit to fixing it.
I have seen the lack of integration in services first-hand during my time working for Dementia UK before I entered parliament. Admiral Nurses operate in and around the health and social care ‘gap’ to help the transition between different health and care settings. They provide wrap-around support for the whole family. By helping to solve the needs of family carers they solve the biggest need for the person with the dementia diagnosis – a carer better equipped to undertake their caring role. We need more specialist dementia nurses, including in hospitals, to help reduce avoidable hospital admissions and, where admissions happen, to support early discharge. This would not only improve health outcomes but also reduce pressure for hospital beds.
The government cannot afford to be complacent, but nor can the Opposition. Dementia must be recognised as a national priority, with dedicated resources and a clear plan for delivery. Without this commitment, the crisis will only deepen, and more families will be left to struggle alone. We owe it to those living with dementia, and to their loved ones, to act now.
Let’s put dementia back on the agenda – and build a future where no family has to face it alone.
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Source: Politics
