Behind the statistics: why we need a cultural change in our approach to dementia care

As our local population gets older, more people are going to be affected by dementia. Dr Colin Mitchell, consultant physician and geriatrician at Imperial College Healthcare NHS Trust, explains the reasons why more people in our community may be living with dementia than the statistics suggest and how acute trusts like ours need to take a new approach to care in the coming years to ensure people with dementia are cared for in the right place at the right time.

At an acute trust like ours, research indicates that about a quarter of inpatients at any one time will have dementia. Our own audit of inpatient medical beds backs this up. However, in reality, it’s likely to be a much larger proportion than that – probably closer to 50 per cent, and on elderly care wards may be up to 80 or 90 per cent. 

One reason for the disparity between reported figures and the actual number is that dementia is difficult to diagnose, even in hospital. When people come into hospital with an acute medical problem, such as pneumonia, they may be very confused, but it may not be that they have dementia – it could be delirium caused by the pneumonia itself, or a side effect of a medication they’re taking, or made worse by being in an unfamiliar environment. As such, it would be unfair to give a long-term diagnosis like dementia without first treating the pneumonia and waiting to see if their cognitive abilities improve. 

The high prevalence of inpatients with dementia at our hospitals is partly due to the fact that people with dementia are generally older and more likely to get unwell in the first place. But it is also because people with dementia often take longer to recover from a medical problem: dementia is not just a condition of the brain; it makes the whole body function less well. People with dementia are often less physically active, meaning they are less fit at the start of an illness. This is made worse when they are faced with multiple stressors such as being unwell and in an unfamiliar environment. On the ward they may be less able or motivated to get up and move around, but getting up and being active is a crucial part of recovery and rehabilitation. Without it they can lose fitness and muscle strength and are more likely to be severely unwell and become weaker – or frail – in the long term, even if the acute problem they came in with was resolved quickly. 

Although the number of people diagnosed with dementia will increase as the population gets older, overall older people are generally fitter and healthier than previous generations. If you‘ve got relatives in their 70s or 80s who are still going out for long walks and doing activities, that’s different to the average older person 30 years ago. Staying active when you have dementia improves your quality of life and helps to prevent you developing more medical problems and becoming frail. In fact, staying mentally, physically and socially active has all sorts of long-term health benefits whatever age you are. So our ageing population may not be quite the nightmare scenario that some fear, but it still presents an increasing challenge to health and social services. 

In the local population, figures from 2015 show that there are approximately 4,500 people over 65 with dementia living in the three boroughs of Hammersmith and Fulham, Kensington and Chelsea, and Westminster. And again, this is likely to be a significant underestimate because there will be thousands of people living with dementia who have not been diagnosed. Many will be people with the condition who are isolated or, conversely, they may be well looked after by their families and nobody realises they have got dementia. We often meet families who thought that memory loss and not being able to do all the things they used to around the house was just part of old age. We do see couples where both have dementia but, because they only interact with each other, nobody has recognised or responded to it. This can sometimes have tragic consequences if one partner cannot return home and the other struggles to understand or cope. Sometimes, it’s only when a crisis occurs – someone becomes acutely unwell or their behaviour has worsened so much that their families realise they can no longer care for them by themselves – that they seek help. 

Dementia care in hospitals

Although the awareness of dementia and availability of memory clinics to make diagnoses is better than it was, care of people with dementia has not changed much in recent years – certainly there have been no magic bullets or wonder-drugs, despite what you sometimes read in the press. Something that the third episode of Hospital shows is that people have always seen hospitals as the last resort when things go wrong: when no other option is available you know you can go to A&E and be seen. As it becomes more difficult to access social care due to increasing demand and budget cuts, A&E departments may be used even more in times of crisis. But dementia shouldn’t be a reason to stay in hospital, even though it may be what caused the admission in the first place and can slow recovery from other illnesses. 

Our elderly medicine service supports older patients with multiple medical conditions or who are frail. We have elderly care wards at the Trust where patients can receive more specialised care if they have come in with an acute medical problem. Many of the patients we see on these wards have dementia, so we are experienced at managing the condition. And thanks to funding from Imperial Health Charity, we have redesigned Witherow ward at St Mary’s Hospital to be dementia-friendly, with features such as specialist lighting. We also have a dementia care team who visit patients on wards all over our hospitals to provide extra tailored support. They have recently drawn on all of their experience to write a book on best practice for caring for people with dementia. But we need to do more to ensure that knowledge is built into the culture of wards across our hospitals. Staff need to know how to support an unwell person with dementia when they are agitated or upset. But they also need to ensure that those who are more sedate are supported to get out of bed and move around. If they don’t, their recovery will be slower, they’ll become weaker and be at risk of having more health problems and losing their independence.

This cultural change also needs to happen outside of hospital: we need to ensure that the whole system works so that people with dementia are being looked after in the right place at the right time. An acute hospital ward is not the right place to manage someone’s dementia long-term, but often people with dementia who need continuing care end up staying on the ward longer because it can take time for a suitable placement in a care home to become available, or to arrange a care package so they can be supported to return home. Demand for social care is always increasing but we need to work with local authorities and other partners to reduce delays in discharge. 

Dementia care in the community

One way in which we are trying to help deliver good quality care and avoid unnecessary or prolonged hospitalisation is through community geriatrics. There’s a big shift in elderly medicine towards the community to try and catch people before they reach crisis point. I work with the Central and West London Community Independence Service, which is made up of therapists and rapid response nurses who will see people in times of crisis and then look at how they will need more holistic support in the future. This often includes cognitive assessment and recognition of delirium and dementia that may not have been previously diagnosed.

As numbers of people with dementia increase, it becomes ever more important that we work closely with patients’ families and carers from the start so that we can reach a diagnosis faster and help them plan for what’s going to happen in the future. If someone is admitted to hospital who we strongly suspect may have dementia, we’ll ask questions about their behaviour at home. It’s vital that we have these conversations to discuss what is likely to happen if they do have dementia, and to be able to begin to manage someone’s condition to prevent them ending up in A&E.

We also need to support families to plan for someone’s care needs and to know what to expect as their condition deteriorates. We need to help them understand that, although hospitals can offer older people excellent medical care, after an acute illness is treated or investigations are completed, hospital is not the best place for them to stay. There’s a strong argument that being at home is actually safer and better than being on an acute medical ward for someone with dementia. It’s understandable that relatives and carers would be concerned about their loved ones coming home after an acute illness when they are still confused and frail. But often it is the only way they can get back to normal. Even though they may still be confused, if they’re in an environment with which they’re familiar, actually, their recovery may be better at home. They will move around more independently, may be less likely to fall, and will walk to the toilet or make themselves cups of tea (rather than using the commode by their bed or having tea brought to them), so these everyday activities are actually part of their rehabilitation and treatment.

If we don’t make changes to how we deliver care, the gap between provision and demand for dementia care will get bigger every year. We need to adapt our approach on organisational system level so that people with dementia get the right care at the right time, instead of ending up in hospital for long periods of time to their detriment. We also need to work with relatives and carers from the start, both in hospital and in the community, to give people with dementia more holistic support that will help them manage their condition and stay well for longer.