The challenge we must meet for dementia sufferers

Written By: Edward Argar
Published: October 26, 2015 Last modified: October 25, 2016

Dementia is incredibly cruel; it can take a person away from you even while they are still with you. It is estimated that there are around 850,000 people with dementia in the United Kingdom; that 21 million people have a family member or close friend with dementia; and that a third of people aged over 65 will develop it. The majority of those 850,000 people are over 65, but an estimated 17,000 people below that age have dementia. All of this – put aside the human consequences for a moment – is estimated to cost around £23 billion a year, with a huge proportion of that being met by families, through care that they engage or through the free hours of care that the 670,000 voluntary carers provide. The challenge before us is huge.

Significant progress on dementia has been made in this country in recent years. However, while we as a society have made significant strides in improving our longevity and our ability to fix and patch up our physical selves through the medical profession, our understanding of and care for the mind have fallen behind somewhat. Dementia poses a massive financial challenge to our country, as people live longer – a good thing, but a partial consequence is an increase in the number of dementia cases.

The last Labour Government should be rightly proud of its work in bringing forward the first national dementia strategy, a far-sighted step. It is a baton that the current Government has seized with vigour. All this is hugely positive, and dementia is an issue on which there is considerable consensus among all parties, but we must not think for one moment that we have done enough, nor lose the momentum built up thus far.

All Government departments must become dementia-friendly workplaces, and to keep talking about dementia and raising awareness of it. A recent survey showed that 25 per cent of 18 to 25-year-olds are keen to learn and understand more about dementia, as opposed to only 15 per cent of those aged 55-plus.

While it is encouraging that young people are keen to understand and learn more about dementia, those figures are still far too low.

The second part of the picture is about diagnosis and care. Diagnosis rates have improved. In 2011-12, only 45 per cent of people with dementia received a formal diagnosis, but Department of Health figures suggest that the figure is now up to 59 per cent, which is real progress.

That 66 per cent was the target set for the end of this year, but can we not go that little bit further and press for a 75 per cent target for diagnoses by 2017? That is ambitious but achievable, and if we do not set ambitious targets we will not achieve them.

However, diagnosis is only the start. Too many people tell of being diagnosed and then receiving no information or support, or only very limited information or support. In a recent Age UK survey, 89 per cent of those questioned said that they did not feel they had enough information about dementia. We need to improve GPs’ understanding of dementia care; many GPs are fantastic, but that is not universal. We need to ensure that after a diagnosis, people and their families receive information on “What now?” as well as support. What steps does the Government propose to take to create minimum mandatory standards to ensure that everyone with a diagnosis receives swift signposting and advice from dementia advisers and a proper support package for them and their carers, possibly through the NHS outcomes framework?

We know – all the research shows this – that once someone is diagnosed with dementia, if they are to continue to lead a full life, it is best for them to be able to live independently at home with their family, but if they are to do that, we must ensure that carers are cared for and supported, and that support plans are in place – as much for the carers as for any individuals with dementia. A recent pilot in Norfolk on the use of Admiral nurses – they are the dementia equivalent of Macmillan nurses, and although they are sadly rather less well known, they do a fantastic job – saved more than £400,000 and provided a strong local support service for carers and people with dementia. What consideration have the ministers given to how that might be made more widely available? What support can be given to local authorities in that respect?

We are all aware of the funding pressures faced by local authorities – not least my own, Leicestershire. It gets one of the lowest per-head funding settlements in the country, and I hope that can be reviewed and revisited in this Parliament, with rural councils being given a fairer share. While care and support to stay independent at home are key, there are times when people with dementia have cause to be admitted to hospital, and here the picture is by no means universally good. According to a recent survey, 41 per cent of hospitals do not include dementia awareness training in staff inductions, and only 36 per cent have a care pathway in place. Many people with dementia still have real problems when they are admitted to acute care. More research into the quality of personalised care for those with dementia, particularly in hospitals, would be immensely valuable. It is estimated that a quarter of hospital beds are occupied by people with dementia, although they might not necessarily have been admitted for dementia. On average, such people have a 20 per cent longer hospital stay than others.

While some hospitals have made progress in having dementia-friendly wards, it simply is not enough. We should have hospitals that are dementia-friendly in their entirety. We often hear of instances of people with dementia not having that noted on their hospital records, meaning that no allowance has been made for it. We also hear of carers and partners not being allowed to stay with relatives with dementia in hospital, which often leads to acute anxiety and distress among those patients at being in an unfamiliar environment without any familiar faces around them.

The national dementia strategy and the Prime Minister’s challenges on dementia for 2015 and 2020 set out an array of targets and objectives. The key to success, however, will be proper implementation to deliver clear and focused outcomes that are measured, monitored and reported.

The third and final part of tackling dementia is research. We have seen some encouraging early signs over the summer that finding a way of slowing down the progress of dementia might be that little bit closer. There is still a long road ahead for that research, but it is a reminder of the importance of a continued focus.

The Government’s dementia research funding now stands at £66 million. That is double what it was in 2010, but we need to be clear that we must not stop there. Finally and most importantly – I declare an interest as a member of the Alzheimer’s Society – I pay tribute to such organisations as the Alzheimer’s Society, Alzheimer’s Research UK, Age UK and myriad others for the work they and their members do to ensure that our society never forgets this cause, and that we continue to support the tens of thousands of people with dementia, and the voluntary carers, who are the real heroes and heroines. We have a duty to recognise what they do, and to do everything we can as a country to support them.

In a moving and powerful article in The Times, Alice Thomson talked about her father’s dementia: “Old age shouldn’t be seen as a humiliation but more as the other bookend to your childhood; a time when you can rely on the help and patience of others to reach the end but can also still be a central part of family and community life.”

Society as a whole must rise to the challenge and to make that a reality for all those who have dementia in this country.

Edward Argar is Conservative MP for Chamwood