Dementia

Madeleine Moon Excerpts

Thursday 10th January 2013 Commons Chamber

[Sir Tony Baldry]

That was absolutely the case. There are occasions when one is just going to be out of touch on this, but hospitals are changing. When I was young, my father was a consultant and he had three wards. He was responsible for them and each had a sister, who was identifiable and accountable, as were the staff nurses. Everyone was accountable and everyone knew what was happening. Hospitals are changing, and in some ways medical technology means that things move a lot faster: for example, hysterectomies can now be day cases. However, people are staying longer in other parts of hospitals. As my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) said, a large number of people in hospital are also suffering from dementia, and hospitals, as well as treating the acute problems of such people, need to respond to that. They need to work out where those people go once they leave the hospital. Very often someone’s dementia is not spotted until they are in hospital.

[Mrs Madeleine Moon (Bridgend) (Lab)]

My mother, too, was a nurse. Sadly, at the end of her life, she ended up in hospital far too frequently, and at the very end she also had dementia. She would say that the nurses would never have been allowed to work on the wards that she worked on, because they treat conditions, not people—that is the problem. They no longer see the person in the bed; they see only the condition. Until that focus moves back to the person and their needs, and away from the condition and the diagnosis, we will not get the change we desperately need.

[Sir Tony Baldry]

I entirely agree with the hon. Lady. Many of us took part in a Westminster Hall debate earlier this week on palliative and end-of-life care, when similar points were made. Sadly, all too often, what we read in our national newspapers demonstrates the desperateness that is occurring, as does the fact that the right hon. Member for Cynon Valley received 1,000 letters and e-mails in response to her tragic circumstances. This culture change in nursing needs to be reversed, because we must get compassion back into the NHS.

The second point I wished to discuss was carers, as I co-chair the all-party group on carers. It is estimated that 670,000 people in this country have dementia and the number is due to double in the next few years. As has rightly been said, most of us will either suffer from dementia or will know someone who will be a sufferer and so will be a carer at that time. One frustration for carers is that they do not get recognised as being carers, which is extremely frustrating, particularly when they are dealing with the GP of the person they are looking after—their loved one. I intervened on the right hon. Member for Salford and Eccles (Hazel Blears) to say that part of that frustration has arisen because GPs have been slightly in denial about people with dementia, because they are not sure what to do with them when they make the diagnosis.

However, I am pleased that the National Institute for Health and Clinical Excellence has proposed that GPs should follow three new indicators on caring for people with dementia. First, GP practices should be examined on the

“percentage of patients with dementia with the contact details of a named carer on their record.”

GPs must, therefore, diagnose someone with dementia because otherwise they will not know that they have a carer on their record. The second indicator is:

“The practice has a register of patients who are carers of a person with dementia.”

The third indicator is:

“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”

There was criticism in some of the national press of the Prime Minister’s determination to ensure that people get a proper diagnosis of dementia if they are suffering from it, but unless people get such a diagnosis—unless GPs face up to the fact that their patients have dementia and start to care also about the carers of these people, by making sure that they get carers, assessments and so on—we will never get the qualitative and quantitative changes in how society is run to allow us to face up to a revolution, which has happened in the lifetime of many of us, in the number of people living in our society with dementia. This issue is going to grow.

I was very impressed by what the right hon. Member for Salford and Eccles said about Salford being a dementia-friendly community; many of us must go back to our constituencies and look at the challenge dementia poses, because, in comparison, my patch is simply in the foothills of that. Over the next few years, we will all have to try to make sure that we have dementia-friendly communities.

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[Mrs Madeleine Moon (Bridgend) (Lab)]

It is an honour to follow the contributions we have heard in this high-level debate from every right hon. and hon. Member in the Chamber. I must declare an interest from the start, as my husband suffers from dementia.

I worked some time ago for what was known as The Project. I, as the lead social worker, and a community mental health worker did joint assessments of people who had been diagnosed with dementia. That joint assessment was critical in ensuring that people got the right quality of care. I cannot emphasise enough how valuable and important those joint assessments were, because we saw the world from two totally different perspectives. We saw the person in the round. We saw totally different things and, when we came out, we never ceased to be amazed by the different clues and issues that we had picked up. It meant that the person received a different—and higher—quality of care.

The hon. Member for Banbury (Sir Tony Baldry) talked about social care workers. We were very fortunate. The Project was funded by the local authority, which was the old Mid-Glamorgan county council, and the health trust, so a lot of money was put into it. We were given our own group of social care workers—we recruited and trained our own social care workers to give them an intensive knowledge and understanding of what dementia was, of the many forms of dementia and of how it would manifest itself. We also taught them about fear: the fear of carers and families of not knowing the world they were entering into. We taught them to give people information so that they knew what the future would hold, how their condition might progress and how to look for the changes and steps they were approaching, as well as where the change was coming.

In the age of the internet, everyone can become almost an expert, but if you use the internet you can become very frightened because there is too much information and it just scares you. You need a connection to professionals who give you a feeling of being held and being walked through it at your own pace as you, as an individual carer of an individual person, go through the trauma of dementia. You also need advice about money—golly gosh, do you need that advice—about the benefits you can access and about how you are going to afford this. I have had to convert my home into a mini-hospital. A lot of my furniture has gone, and I now have a downstairs bathroom and an extension built on to the property. You need to alter your life around the person you are caring for.

Treatment is not available for everyone, but you need to know what the experts are saying about the best way forward for you as a carer and for the person suffering from the condition. Education is essential not just for the caring community but for the professionals you interact with all the time. The worst thing carers suffer from is isolation. A number of times, when I spoke to people who were faced with dementia in a professional capacity, they told me the worst thing was the isolation. They said, “If someone has cancer, people are around all the time, but you get a diagnosis of dementia in your family and people disappear.” I found that true, too—not totally, but it is certainly there.

There are provisions that society has put in place, and I shall talk about the advance power of attorney later, but communication skills seem to have disappeared. People simply do not know how to talk to people with dementia. Even when someone has quite profound dementia, there is often a way in. There is still a person in there and it is our job, as professionals, to find that person—to get in there and find some way of doing that.

I have wonderful carers who look after my husband—they are absolutely amazing. I have two people who work only for me and they look after my husband full time. They have allowed me to carry on with my job and they have allowed my husband to carry on having a life. They take him to the theatre, they take him out for lunch and they take him out for walks. They make him laugh. We communicate with him in all sorts of ways: we draw things and we write things down. His capacity for movement is now extremely limited, but he finds a way at least to say yes or no. We still insist that he makes decisions. We do not make the decisions for him; he has to make them and he must be party to them. I have stood in front of him and said, “I am not making this decision: you will tell me. Do you want this?” And he has laughed—it has to be said that he has had that in his life for a long time, but it is still there and he still finds somewhere that way of nodding, of squeezing my hand, of holding the pen and writing on the paper. We can still get that. It drives me crazy when I see nurses and professionals who will not take the time to do that.

I have been very fortunate. I have a fantastic GPs surgery, which won an award for the quality of the care that it has given to carers and to its patients. It makes a huge difference if you know that you can reach out to your local medical community and it will reach back to you.

I am very fortunate that I live in Wales because the cost of care in Wales is capped. I urge the Minister to look at what Wales has done in relation to the capping of care. It makes a difference because in addition to paying for your social care needs, you also have to pay for all the other things that you might need, such as my downstairs bathroom and the changes that I have had to make to my home to make it feasible and possible for a man who can no longer walk to access the dignity that he deserves—having the chance to be clean every day, accessing the privacy of the toilet, accessing a shower so that he feels clean and fresh and feels like a human being.

As a carer you become very reliant on the kindness of strangers. That has been true in my case. I will remain profoundly thankful for the wonderful people who have entered my life. Also, there are people out there dedicated to research, and we need their dedication and their commitment. I am very fortunate. My husband has a condition that many people do not know about; there are many dementia conditions that people do not know anything about. He has a condition called Pick’s disease. It is associated with motor neurone disease. His mother had motor neurone disease.

The research into Pick’s disease is coming out of Manchester, University College London and Cardiff university. I am fortunate in that I have close links with Professor Huw Morris, who is the lead in Cardiff university, and I know that huge strides are being made to identify the cause of Pick’s disease. A huge family of 38 members in Gwent, who have Pick’s disease throughout their family history, have made a huge difference. Families want to be engaged in research. They want to make a difference. They want to know that their experience will change the future. I urge the Minister to take time to talk to families about what they think they can contribute not just to the change in care, in treatment and in people’s attitudes, but to the change in medical research. Often families want to be part of that.

I have advance power of attorney for my husband. We were together with Dr Morris, who turned to me and asked whether I would be willing, when my husband died, for his brain to become part of the research. I said, “I’m sorry, I’m not making that decision. Steve will make that decision.” And he did. He wanted to be part of that. He wanted to contribute something. He did not want it to have been in vain. It is important that we respect the dignity and the right of the individual early on in their diagnosis to be party to simple questions like, “Are you willing, if there is an opportunity for you to give cell samples, blood tests, organs? Will you do that?” People have to be asked those questions.

People have to be asked early on, “Do you want to know what is happening?” You have to have some quite brutal and painful conversations and it is only fair. Some hon. Members have talked about GPs not wishing to make a diagnosis. It makes me laugh when I see the figure of 43% non-diagnosed dementia cases. How can we even know it is 43%? We do not even know that. Part of the reality is that GPs need to talk to carers and ask early on, “How do you two want to play this? Do you want me always to be brutally honest with you or do you want some protection from what is happening?”

We have to find a way of being more honest and more mature and not patronise people with dementia. We have to keep that person in their life, central to their life and central to their family for as long as it is possible. It is only then that we can hold our heads high as a decent society, as a caring and compassionate society, and make dementia something that we are no longer afraid of, but something that we fight.

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[Glyn Davies (Montgomeryshire) (Con)]

Like others, I pay tribute to those who secured today’s debate: the Backbench Business Committee, the right hon. Members for Sutton and Cheam (Paul Burstow) and for Salford and Eccles (Hazel Blears), and my hon. Friend Member for Chatham and Aylesford (Tracey Crouch). The debate is about a hugely important subject of which many Members will have personal experience.

Many of us are aware of the scale of the issue: dementia will affect 1.7 million people by the middle of the century, probably double the figure now. It is probably one of the biggest challenges that this Government—and future Governments—will have to face, and will be particularly important in Wales where the percentage of people aged over 65 is higher than anywhere else in the United Kingdom.

The right hon. Member for Salford and Eccles paid tribute to the commitment of the Prime Minister, who launched the dementia strategy last year, and there is a commitment to increased spending on research. That is not anywhere near enough, however, and I am certain that in future our commitment to tackling dementia will have to be greatly increased.

I want to make five or six brief points, some of which are from a Welsh perspective. As we know, the matter is devolved, but as the right hon. Member for Sutton and Cheam said, where there are differences between the parts of the United Kingdom, lessons can be learned from one Administration by another, and devolution can be a sort of test bed. Different attitudes are developing in Wales and we may be able to learn things from that.

The issue I will mention first because it is so important is early diagnosis. Levels of diagnosis in Wales are particularly low—only 37.5% of people with dementia are diagnosed, which is far lower than in other parts of the United Kingdom—and of course access to new drugs and treatments is simply not available to people who have not been diagnosed with dementia.

Many of us—probably most who will speak in this debate—have personal experience of the issue, and one thing that is common to most is that we do not realise when someone is suffering from dementia. We may think there is a degree of slowness but we do not realise what they are suffering from. The second time it happens in a family people respond much better because they know pretty much what to expect. Those suffering from dementia can be crafty because they are desperate to hide their condition; in some ways there is embarrassment about it and they do not want people to know. Without experience, dementia is difficult to identify, so early diagnosis must be an aim for anyone concerned with dealing with it.

The second issue, which was touched on earlier, is training for nurses. There is a general issue at the moment about basic care in the health service—that was touched on last Tuesday during the debate on the Liverpool care pathway, and the right hon. Member for Cynon Valley (Ann Clwyd) also mentioned it. To my mind, such training is particularly important for people in the acute health services, many of whom are elderly. Many people go into hospital because they have had a fall although they are also suffering from dementia. The level of disruption and disturbance caused when they go into hospital can completely disorientate sufferers, and the rapid onset of serious dementia is much quicker and more radical in such a situation. It is important that those working in acute health services are trained in identifying and dealing with the dementia aspect of illness, as well as with the actual condition such as a broken hip or bone.

My third point is about Parkinson’s disease. I am involved in my local Parkinson’s disease charity. I do not know whether the trauma of Parkinson’s disease brings on dementia or whether it is the other way round, but we know that people suffer from Parkinson’s disease for quite a long time before it becomes publicly apparent. Many people will go into hospital and seem to suffer from dementia without anyone realising that they are suffering from Parkinson’s. That disease may come on more quickly—the trauma may cause it—so it is vital that in hospitals and care situations patients’ conditions are regularly assessed to see whether they are suffering from Parkinson’s disease, and that they are not just dismissed as a dementia patient while another illness is completely ignored.

I touched earlier on the liaison between Governments in Wales and England but that may apply to other Administrations as well. Without making any negative political point, there is a difference in approach. The Welsh Government are much more suspicious of the private sector than the UK Government—that applies particularly to the provision of social care. The Welsh Government’s view is that social care is delivered far better by the public sector, but, generally speaking, social care is delivered by the private sector.

The relevant Committee has considered that, and there is a very good chance that there will be new, different approaches in Wales—they could be based on co-operatives or they could be community based. They might work in an urban situation, but it is important that the Government in Westminster and the Government in Wales are aware of what is happening, and that they learn about good practice and what might work.

My final point—perhaps I will be the only hon. Member to make it in the debate—is on the Welsh language. Many who are elderly and frail in Wales spoke only Welsh until they were seven, eight or nine years old—in those days, people became involved in education at that age. Today, people often go to monolingual, Welsh language schools. Up until the ages of seven or eight, that is the only language they speak, and we know that people suffering advanced dementia revert to their childhood language.

I visited an esteemed former Member of the House and House of Lords who suffers from dementia. Towards the end of his life, he was able to speak only Welsh. Previously, he had been able to speak English, but at that stage, he could speak only Welsh. I acted as an interpreter. That is important in care homes in Wales. Such people are suddenly completely isolated. Very often, they cannot speak even to their spouse.

[Mrs Moon]

I rise only to confirm exactly what the hon. Gentleman says. I worked in specialist rehabilitation in Gorseinon, which is part of Swansea where the Welsh language is much more prevalent. Families would come in, and often, I would say to them, “Speak to your family member,” which was usually a mum or a dad, “in Welsh, and tell me what you want.” It is true that going back to the language of childhood often makes communication continue for much longer than speaking the adoptive language. However, that has implications in our multicultural society across our ethnic communities, and we must bear it in mind. No matter where a person comes from or whatever their culture, we must be able to provide communication in their language of childhood.

[Glyn Davies]

I thank the hon. Lady. I was going to expand my point on the Welsh language into the impact on people who speak other languages, as so many do. People’s reversion to the language they spoke as children came as a huge shock to me. I found that the great parliamentarian I went to see was unable to communicate with his wife because she did not speak that language—it was the only one he could speak. It was a strange experience. In that home, nobody could speak Welsh, which was a tragedy. Hon. Members often discuss and debate where the Welsh language should be available, but it should be available in care homes in Wales, and particularly in ones that have a dementia wing. Having somebody who can speak Welsh is important.

A spin-off point from that is on people who have moved away from Wales—the diaspora. They could fall ill in another part of the country. Traditionally, they would come home to where they are originally from and continue to see family and friends, but they could finish up not being able to communicate with people where they live. There is a case for work between the Governments in England and Wales—the availability of the language of youth applies to other parts of the UK—on helping to repatriate people to deal with the problem. Not being able to communicate with anybody, including family, must be incredibly difficult.

Dementia is a huge issue and there are many aspects to it. I hope I have touched on one—language—and one or two others that have not been covered by other hon. Members.

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[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.