Dementia

Debate between Alison Seabeck and Madeleine Moon

Thursday 10th January 2013 Commons Chamber

[Alison Seabeck (Plymouth, Moor View) (Lab)]

Most Members in the Chamber will have received e-mails and letters and read in the media that MPs and people at Westminster have no idea what is going on in the real world. I hope people have been listening to and watching this debate and have heard the highly emotional, very personal, incredibly thoughtful speeches that we have had in the debate today, which give the lie to those cynical comments from those outside this place. I thank the Backbench Business Committee for allowing time for the debate and the right hon. Member for Sutton and Cheam (Paul Burstow) for opening it. His expertise and interest in care in relation to dementia are well known and noted, and I thank him for taking the opportunity, along with many others, to highlight one of the more important health issues facing the country.

Unlike almost every other Member who has contributed to the debate, I have not had anyone in my close family suffer from dementia—I know people who have, but they were not immediate family members—so my speech might sound a little more clinical than others we have heard. We probably all know someone who has been touched by dementia. As we live longer, virtually every family will be affected and, as with cancer, we will have to learn to cope with an illness that a century ago people would not have lived long enough to experience. Indeed, only 30 or 40 years ago—20 years into my life—we would not have experienced family members having that awful degenerative disease.

[Mrs Moon]

Does my hon. Friend agree that we must be careful not to make it sound as if dementia happens only to the elderly? Vascular dementia and prefrontal dementia affect young people. Certainly, prefrontal dementias tend to onset when people are in their 40s and 50s. We must not let the population of this country run away with the idea that dementia happens only to old people and that it is a consequence of old age, because that is not necessarily so.

[Alison Seabeck]

My hon. Friend speaks with enormous knowledge and is absolutely right. My godmother died at the age of 56 from Alzheimer’s, as it was described then, although I suspect that it was something much more complex.

Our ageing population poses challenges, including how we discuss in a much more open and constructive way what has, in effect, been a no-go area. Cancer is a case in point. It is mentioned in hushed tones, in corners of rooms. The hon. Member for Truro and Falmouth (Sarah Newton) touched on that in her speech. Victims were often not told they had the disease. Dementia and Alzheimer’s have been treated in much the same way. As with cancer, I think that we are all learning not to be afraid of speaking about the disease. By doing so, we can better support those affected, their families and carers.

We know that the number of sufferers is going to rise. The hon. Member for Plymouth, Sutton and Devonport (Oliver Colvile)—we duplicated on this a bit—pointed out that the number is rising significantly across the UK. Indeed, it will probably rise to 1.7 million people by 2050. In Plymouth, probably around 3,000 people have dementia—I say probably because many people with dementia will not have gone to their GP and their families might not be aware of their condition. That brings us back to a point made by my hon. Friend the Member for Bridgend (Mrs Moon), because there are potentially so many people out there who are yet to be diagnosed. That is why such debates are so important in raising awareness. We cannot simply carry on sweeping the issue under the carpet. It is a little like hiding bills behind a clock on the mantelpiece: they do not actually go away; they just mount up. The same applies to dementia; caring issues mount up, and costs certainly will.

Dementia will cost the UK about £23 billion in 2013, yet dementia research is desperately underfunded, as we have heard. The Government invest about eight times less in dementia research than they do in cancer research. These are financially difficult times, but we need to ask whether we have that balance right. I welcome moves from the top of the Government to look at the priority dementia receives.

Dementia is a particular concern in the south-west. Figures show that 40,000 people across the region have been diagnosed, and Devon has one of the highest levels in the country, in part because of our demography—people want to retire there, so there is a significant number of older people. However, as my hon. Friend the Member for Bridgend has put me right, it is not just an older person’s disease.

I know from my constituency surgeries, as I am sure that others do, just how scary a diagnosis can be for patients and their families. We need to handle the diagnosis point with enormous sensitivity. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) made that point extremely powerfully and clearly. Every family copes in different ways, but they all ultimately need support. Some may pretend that they do not—that they can get on, manage and cope—but that is not the case.

Carers tell me that they get stressed and worried when they are out with their loved ones. They are acutely aware that others do not understand the behaviour of the person they are with who is suffering from dementia. Shopping can be a simply dreadful experience. One carer said to me, “It would be so good to be able to go out shopping and not worry.” The hon. Member for Chatham and Aylesford (Tracey Crouch) made a good point about that. I am delighted to hear that companies such as Asda are training their staff better to recognise and support customers who are having difficulties. I hope that other companies out there have heard that and will look at the excellent work that those companies appear to be doing.

Nor can we underestimate the pressure on carers’ mental health. They often struggle on in silence. We all know the type of person: they appear on the outside to be incredibly resilient, but in fact they are not. They need their needs to be fully understood, not only by the health service but by the people around them—those who work with them and live with them.

In Plymouth we are working towards becoming not only a dementia-friendly community but a dementia-friendly city. We have some superb people leading the campaign and taking the steps to move it forward, including Ian Sherriff and Dr Helen McFarlane from Plymouth university. We have councillors and officers on Plymouth city council, as well as a welter of voluntary organisations. We also have an accredited memory service. The diagnostic rate for the identification of dementia has seen a significant improvement following the work by Dr Cartmell to map a dementia pathway, which has provided GPs with a useful educational tool to support referral, diagnosis and treatment.

As we have heard from virtually every speaker, the early diagnosis of dementia is very important, as is the way in which society reacts to and supports those with the disease. People are helped to be empowered at a much earlier stage when they are better able to take important decisions about their care pathways. They are also enabled to share those decisions with the people closest to them, who may well be caring for them. Those affected should be able to take their own decisions for as long as that is feasible and possible. It is hugely important that they are able to take an informed view about their future life and lifestyle while living with dementia, guiding clinicians in the pattern of care wanted. Early diagnosis takes a certain tension out of the system, and we cannot overstate how important that is.

As I mentioned, in Plymouth we have lots of organisations working towards our becoming a dementia-friendly city. The hon. Member for Plymouth, Sutton and Devonport talked about the naval base, HMS Drake, where people have signed up to play their part in the Plymouth Dementia Action Alliance. Human resources policies have been amended to support service families, who may also be caring for somebody with dementia. Someone on the front line on a tour of duty in Afghanistan already has an awful lot to worry about apart from worrying about a relative, or somebody they are very close to, who has dementia. It is enormously important for them to be confident that that person is in good and caring hands while they are a long way away and out of contact.

The Dartmoor rescue team has also lent its skills. One might ask why, but I am afraid we have all heard these stories and all know people who have said, “A member of my family has left home and wandered off.” We have a young councillor on Plymouth city council whose grandfather has a habit of doing that and she often tweets asking whether anybody has seen him. The Dartmoor rescue team is bringing its expertise to bear not only by helping to track and find people, but by taking people for walks in areas they may be familiar with on Dartmoor and elsewhere.

As we have heard, the private sector is also buying in and schools such as Stoke Damerel have taken an interest, because children have grandparents who may be suffering. Helping them understand what is happening to their gran or grandpa offers reassurance.

I want to see the work that is being done in Plymouth to prepare us to be a dementia-friendly city come to fruition. I put on record my thanks to all those involved in the alliance who are pressing forward with that work. Importantly, I want every city in the UK to follow the lead of, and move in the same direction as, some of the country’s early pioneers.

I recently attended the opening of Waylands in Ernesettle in my constituency. It is a residential centre for people with varying stages of dementia. It is a well-thought-through development and I would hope to see more such developments being built to such a high standard. Everything has been thought through, including memory boxes and the colour of the walls. It is a superb facility. However, there is an issue—this has been touched on by other Members—namely the recruitment of staff with the right qualifications and attitude towards nursing and supporting patients with dementia. The centre tells me that it has been quite easy to recruit care assistants with good qualifications and the right attitude, but much more difficult to get properly trained dementia nurses. What is the Minister’s Department doing, alongside the Departments for Education and for Business, Innovation and Skills, to ensure that we have enough people with the right skills to meet that undoubted need? We also need reassurance that those people are properly trained. We do not want a recurrence of what happened in Stafford.

Patients with dementia cannot whistleblow, which is a real issue. If someone does not have a family around them to identify the problems they face, how will their voice be heard? As my right hon. Friend the Member for Cynon Valley (Ann Clwyd) has said, too many people are alone in hospital who do not have people to take action to feed them. I cannot say how strongly I feel about the importance of good, compassionate nursing care to look after people with every need—and I mean every need—and ensure that they eat and live as long a life as possible, given their conditions.

We also need to take into account the fact that dementia sufferers have a range of other physical ailments. We need to learn and do better on the ways in which they are nursed and how clinical teams handle them. These people are very afraid, in strange circumstances, often alone and faced with strange equipment and various other things. I genuinely think that an awful lot more could be done to make their progress through the health-care system altogether more sensitive to their individual needs.

I look forward to hearing the responses of both Front-Bench representatives to this debate. I want a firm commitment to a long-term dementia strategy but, more importantly, we have to have a national solution for care and it has to be affordable. As other Members have said, the figures in the press this week seem to be excessively high, but I will wait to hear what the Minister has to say about that.