Northern Ireland Assembly Flax Flower Logo




  Dementia and Alzheimer’s Disease

27 September 2007

Members present for all or part of the proceedings:
Mrs Iris Robinson (Chairperson)
Mr Thomas Buchanan
Dr Kieran Deeny
Mr Alex Easton
Mr John McCallister
Ms Carál Ní Chuilín
Ms Sue Ramsey

Professor June Andrews ) Dementia Services Development Centre
Ms Maria McManus )
Ms Siobhan Donaghy ) Alzheimer’s Society
Mr William Hogg )
Ms Claire Keatinge )
Dr Brid Kerrigan )

The Chairperson (Mrs I Robinson):
I welcome Professor June Andrews from the Dementia Services Development Centre at the University of Stirling, and Maria McManus who is associate director for the Dementia Services Development Centre in Northern Ireland. You will have about 10 minutes to make your presentation, and then Members will ask questions.

Professor June Andrews (Dementia Services Development Centre):
Thank you for the opportunity to address the Committee today. I am the professor at the Dementia Services Development Centre at the University of Stirling. The centre was the first of its kind in the United Kingdom and is a world-leading dementia centre.

I know that some Committee members have a lot of experience in this area, but, for those who do not I will provide a brief overview. People have often heard about Alzheimer’s disease, and I know that representatives from the Alzheimer’s Society will address the Committee today, but several conditions come under the umbrella of dementia, including dementia that is caused by problems with blood supply to the brain and lewy body dementia. There are several names for those diseases.

I am in my 50s, but when I was a student nurse I was told not to worry about the different kinds of dementia because it did not make any difference as far as treatment was concerned. Nowadays, everyone realises that it is important to know about the different kinds of dementia, because some treatments can cause harm. Most people with dementia are cared for by their families; it is important that they know what to expect, because, as the disease unfolds, the pattern can be different depending on the type of dementia involved. People can really benefit through early diagnosis of dementia type.

Most people know that dementia causes memory impairment, but it also causes impairment of “executive function”, which is the capacity to do things for oneself or care for oneself. It is astonishing that 80% of profoundly impaired dementia sufferers still live in their home in the community. The statistics for Northern Ireland are available in our submission, so I will not repeat them at length. We have also provided packs that will be delivered to your offices.

Around 16,000 people suffer from dementia in Northern Ireland. That is a significant number, and it will increase. The current challenges for Northern Ireland include the fact that many people are in residential and nursing home care. Again, the Dementia UK report has been helpful in providing those statistics.

When I speak to politicians in other parts of the United Kingdom, they are always astounded by the fact that dementia costs Governments more money than cancer, heart disease and strokes put together, and sometimes we are asked to provide evidence of such statistics. The National Audit Office in England has confirmed those statistics, and all the research confirms them. It is sometimes difficult to track where the money goes, but the fact remains that dementia is sometimes a 10-year diagnosis, and no one gets better.

Dementia is a condition that worsens, and if sufferers do not die from some other disease in the meantime, they will die from dementia. Our great successes with health policies in cancer and diabetes mean that people are living longer. However, the number of people suffering from dementia will increase, because the likelihood of having dementia increases with age. People may be lucky enough to live into their 90s, but their chances of getting dementia will rise by about 30%, so it is one of the downsides of having improved health.

Some people in Northern Ireland were concerned that it was the only part of the United Kingdom that did not have a dementia centre. As Scotland has the best dementia centre in the United Kingdom, we were approached to give advice on how a similar centre could be set up in Northern Ireland. After discussion with interested parties, including Atlantic Philanthropies who provided funding to support the initiative, it was decided that we should put something in place as soon as possible rather than have further consultation.

Therefore, it was decided that the Stirling University Dementia Services Development Centre would set up a branch in Northern Ireland for a fixed term of two years. During that time, the Northern Ireland branch would provide a model of what a dementia centre could look like, so people could then decide whether they wanted a dementia centre or one that specialised in the mental health and wellbeing of older people rather than focusing on one disease.

It is recognised that young people also suffer from dementia, particularly as a result of alcohol-related brain damage. Sadly, young people with learning disabilities develop dementia at a much earlier age than the rest of the population. Therefore, there are a range of issues. There is also weak evidence that people can suffer from some form of post-trauma-related dementia.

We are not sure of the reasons, but if the dementia centre focuses only on older people, it may not necessarily capture the whole population.

The centre in Stirling is funded largely by its own commercial efforts, but it also receives funding from the Scottish Government. The Scottish Government do not give core funding; they guarantee to buy services from the centre, such as bulk purchases of education and material that can be used in health and social services. The centre also has a charitable trust, which supplements the centre’s income through fundraising efforts and is a channel through which people can bequeath legacies and donations.

Having established a branch in Northern Ireland, and having had a launch conference, we are now delivering the training courses and seminars that are being provided in Stirling. Hopefully, a business plan will be developed to establish a model that will replace the centre when we leave in two years’ time. What that model will be will depend on whether a mixture of Government, charitable and commercial funding develops during that time.

At the moment, Atlantic Philanthropies is the major, sole, external funder. However, a tiny income is being generated as a result of my colleague starting up what might be called a not-so-commercial operation selling education.

The current service-delivery model is that I am the director, and my colleague Colm Cunningham, who is based in Stirling and is not here today, is director of operations. Maria McManus is our associate director, and we have one administrative assistant, Una Thompson. Basically, there are two people in an office in the science park in the University of Ulster at Jordanstown, and when they receive enquiries, our library and systems in Stirling will provide the necessary backup.

Maria has already recruited some associate staff. One of our education models is that we do not have a large teaching staff waiting around for someone to ask for education. Instead, when they are available, core staff who are already in the workplace and have experience provide education in a form in which they have been trained.

In the pack that members have been given, there is a list of some of our clients, the things we have done, and what has been achieved in the very short time the centre has been operating, such as our website and the six-month programme of education due to be launched in October.

That is probably enough about what the dementia centre in Stirling is about. We are trying to support the creation of a dementia centre in Northern Ireland, and that will depend on what people want when the experimental period is over.

The Chairperson:
Do you want to speak, Maria, or do you just wish to answer questions?

Ms Maria McManus (Dementia Services Development Centre):
I am happy to respond to questions.

The Chairperson:
Thank you for that thought-provoking presentation. Does anyone want to ask a question?

Dr Deeny;
I am actually a GP. When I did my trainee year in Stenhousemuir, I used to socialise in Stirling. That was up until 1983, but I will not go into that as it was before I got married. It is nice to have people from Stirling here today.

Your work sounds great. Perhaps we have been too clinical about the subject in Northern Ireland. The Assembly had a debate on Alzheimer’s disease this week; it is a devastating disease to afflict a family. As a professional, I have seen evidence of that devastation through working with people I knew. I am grateful that the disease has not appeared in my family. However, I have known people before they were affected by the disease, and even from just working with them, and seeing how they have changed, I can see just how awful it is.

There is a lot of debate going on in Northern Ireland about the treatment of Alzheimer’s disease. The National Institute for Health and Clinical Excellence (NICE) guidelines recommend that one particular drug should not be used at all. What about prevention?

Must we accept that, because our population is getting older, there will be an explosion of people with Alzheimer’s disease and other forms of dementia? Does your centre advise people about diet and exercise and about how to keep the mind stimulated?

Professor Andrews:
The intention behind the business plan for the Dementia Services Development Centre-Northern Ireland was to start with actions that we felt were easy to achieve, such as training and the dissemination of existing information; in other words, to distil what we already know, in order to educate paid staff, in particular, on how to do their job.

In the second-year plan, it was intended that, if possible, the Northern Ireland centre would start to conduct some research. The centre at the University of Stirling does not compete with the many centres around the UK that are doing basic bench science on dementia — the molecular science on the changes that take place in the brain and the pharmaceutical products that might be created to help.

However, we have managed to distil several good ideas that could help people to keep themselves well; that could reduce the possibility of their getting dementia; that could keep them well if they have dementia; and that could help relatives stay well if a family member has dementia. Those ideas came out at roughly the same time as Alzheimer Scotland’s guidance on living well with dementia. We have some guidance that we can share with staff, and that information can be disseminated to the people with whom they work, in order to give them uncomplicated ideas about what they can do to keep themselves well.

As to whether an explosion of dementia is inevitable, there are no early signs of a miracle cure. We are working on the assumption that dementia will be with us for a long time. However, because we recognise vast deficits exist in public-service capacity to deal with dementia, we have a long way to go before we are dealing solely with those dementia sufferers who are already in our system. That is a problem that affects the whole of the UK; it is not only a local problem for Scotland or Northern Ireland.

Dr Deeny:
Given that dementia is very much a family disease, what support is available for families? For example, the father in a family who attend my practice passed away recently as a result of a second cancer — he survived prostate cancer but was taken by another cancer. The mother in that family has now reached, I would say, stage three of Alzheimer’s disease, and she has two disabled children. The whole family are devastated and have very little support. Does the centre give advice and support to families in such situations?

Professor Andrews:
Yes. However, the dementia centre in Stirling does not provide direct services to family carers. We support people such as social workers and nurses who are paid to work with dementia. We also work with people who come across dementia in their daily lives. For example, nobody calls a nurse if an old lady is found wandering in a shopping centre in her nightdress — they call a police officer. Therefore, we run training programmes for police officers. However, the police have advised us that they are quite far down the line as far as giving assistance is concerned. They have asked us to work with their call-handlers so that a microanalysis of the problem can be made over the telephone and people can be pointed in the right direction.

We focus on the workforce, and we greatly respect the work done by other organisations in Scotland, including Alzheimer Scotland’s action on dementia. My colleagues behind me with their eyes boring into my back are from the Alzheimer’s Society in Northern Ireland, and they will tell the Committee about their work to support family carers.

Occasionally, a family carer strays into our building with a person with dementia in tow. They get a Rolls-Royce experience when they come to see us. However, we must focus on the people who have to deal with the problem in daily life so that they can do their job better.

Ms Ní Chuilín:
You are both welcome. What steps can be taken to increase awareness of the services available to people with dementia and their families? I will probably ask the Alzheimer’s Society the same question.

Professor Andrews:
That is a local issue, so I will ask Maria to suggest what could be done here. I may be able to supplement her response by telling the Committee what we have done in Scotland.

Ms McManus:
Dementia is emerging as a distinct issue in Northern Ireland, and that is important. Over the years, our services could not so clearly identify people with dementia, or else service delivery to was enmeshed in, say, general adult mental-health services and other services. The fact that services are increasingly being developed into specialisms really helps. It helps staff to organise themselves around the services that they are delivering, to specialise and to improve their standards.

Our input is in supporting staff with training and education and in undertaking consultancy around environmental designs. Practical steps can be taken to make the experience for someone who has dementia less traumatic and much more life-affirming. We can support staff to respond more effectively.

Therefore, the recognition of dementia as a distinct public-health issue is critical, as are a corresponding organisation of services around that recognition and an increase in awareness. We also work with all other parts of the service that work with people with dementia: generic teams; GPs; nursing homes; and day-care services.

For example, we hope to advance a project on acute hospital care and accident and emergency (A&E) units. WE aspire to work with one particular trust and the Department of Health, Social Services and Public Safety to develop a pilot project for educating staff. That education would be delivered mainly through production of a DVD and, perhaps, online learning. If that were done, staff need not be away from the ward, and that education could be delivered quickly and effectively. That pilot project could then be rolled out with the aspiration of improving the quality of services regionally. Those are some of the initiatives that we can offer.

Ms Ní Chuilín:
You are right to say that families of people with Alzheimer’s disease are the primary carers, and that remains the case even when sufferers go into hospital. There have been too many instances in which patients with Alzheimer’s disease have become malnourished. A tray of food is set down in front of them, and no questions are asked when it remains untouched. Unless relatives or carers are present to ensure that patients eat, they become invisible or go unnoticed. The same argument applies to physiotherapy sessions, and so on. How do the education, training and awareness about which you talk percolate to the person who provides primary care?

Professor Andrews:
We recognise that those problems exist. We are carrying out a change programme in Scotland’s Forth Valley, which is where Dr Deeny once worked. We are working across the whole system to improve services.

For example, when we consider something simple, such as ensuring that an old lady who is in hospital with dementia eats all her dinner, a ward sister may say that there will be a protected mealtime, during which no one can enter or leave the ward for an hour, therefore guaranteeing that no trays are taken away until she is satisfied that all patients have had their dinners. However, in many systems, the transport manager may say that he needs to remove the food trolleys by a certain time or else his whole schedule will go out the window.

We are combining getting people to track the problems in the system with getting them to design improvements and teaching them the necessary empowerment skills so that the ward sister will not be stopped in her tracks by the transport manager. It is not that the transport manager is a bad person but that priorities become skewed if someone is a cog in one part of the system, whose job may depend on staying within budget by keeping vans running on time. No one purposely goes out of their way to cause problems.

Some methods have been used, such as process mapping and small-change improvement cycles. Those are technical terms, and staff hate the use of managementspeak. However, we can teach staff change skills so that, once they have been taught what is important for people with dementia, such as the need to eat and drink, they can then be taught how to ensure that those changes take place when they find themselves working in what appears to be a clunky and inflexible system.

We have some recorded success in helping people to make those changes. However, both personal effectiveness and knowledge of dementia must be improved.

The Chairperson:
I am appalled that any carer could lift an untouched tray without alarm bells ringing in his or her head. A duty of care exists to ensure that people who suffer from dementia receive appropriate food. If they do not eat, they will become weaker and their condition may worsen. Surely it is inhuman to take a food tray knowingly from an elderly person who has not eaten.

Professor Andrews:
I am the fiercest critic of such actions, and I fight the hardest to ensure that that does not happen.

In defence of staff, people with dementia, when offered food or drink, frequently say that they are not hungry. It may be a domestic who is removing the tray, so unless that member of staff is taught that it does not count when people with dementia say that they are not hungry, the system will fall down.

If domestic staff are unaware of a patient’s diagnosis, a system must be introduced to make them aware. Some hospitals have introduced coloured trays or napkins for people who are likely to refuse food or who have problems with eating and drinking. Domestic staff can be taught that if someone with a red tray, or a green or blue napkin, says that he or she does not want to eat, the tray may be taken away, but the matter must be raised with the person in charge, in order to ascertain whether something needs to be done. Simple mechanisms can be created, but, until they exist, staff will mistakenly do what they are paid to do, which is to get the trolleys back on to the vans.

The Chairperson:
Surely the fact that a ward or unit deals with people with dementia means that the entire staff should adopt a unified approach. We may not live in an ideal world, but I find it unbelievable that even the people who collect trays would not be au fait with the fact that people with dementia may say that they are not hungry, when they are.

Professor Andrews:
Perhaps I did not express myself well enough. A person with dementia in a dementia-specific ward would not encounter that problem. However, the majority of people with dementia live at home.

If a person with dementia were found improperly dressed in a shopping centre, he or she would be picked up by a security guard or a police officer and taken to a hospital. Research shows that generalist doctors and nurses in A&E departments are not capable of establishing whether a person has dementia. That is why a programme to deal with that issue is being initiated in one of the hospitals in Northern Ireland. Therefore, because a hospital is rather full, a lady who does not eat her food may be one of 25 women in a gynaecology ward. She may not be particularly old and may be in hospital because, as we say in Scotland, she is “off her legs” or “confused”. She will not, however, have been identified as having dementia. If she were older, ageist attitudes may lead to the assumption being made that she is a bit dottled.

Alternatively, that lady may appear lucid and emphatic. If I were to get dementia, I would tell the nurses what to do because I am a nurse myself — I would instruct them to take away my tray. Staff will instinctively take away a tray of food, because they have been told to do so.

Unless patients have been identified as having dementia and staff have been sensitised to their special needs, simply because they are in hospital, they may become more ill because they have not been treated properly. That is why staff who work in the general health system must be better educated about dementia.

I am sometimes asked whether more specialist staff are required. I reply that numbers of specialist staff are fine, and that it is more important that people throughout the system, whether they be police call-handlers, district nurses, or nurses and consultants in an A&E department, can identify dementia, in order that a special care plan can be implemented. They should be cognisant of the bad things that can happen, such as falls, dehydration and poor nutrition, all of which are common for people with dementia.

It seems inconceivable that such things can be overlooked, but the fact is that they are. The dementia services development centres in Scotland and Northern Ireland are concerned with finding out why each oversight has happened and with ensuring that it does not happen again.

The Chairperson:
However, there is a perception that elderly people who are placed somewhere that deals with different forms of dementia do not always receive the best care. The media have highlighted the treatment of elderly, confused people. Unfortunately, the reputation of good staff is blighted by those bad staff who beat and abuse elderly people.

The annexe to the Assembly Research Service’s briefing paper includes a breakdown of current figures for people with dementia across Northern Ireland’s parliamentary constituencies. Are those figures a fair representation, or do they merely scratch the surface? Some families are willing to keep relations who suffer from dementia at home and look after them without receiving any help.

Professor Andrews:
Interestingly, dementia experts argue about how long a person has the disease, but for the purposes of this discussion, I will say that it is for about 10 years. In the first few years, a person who is young enough to be in employment can still drive a car and hold down a job. Towards the end of that time, that person will require terminal care and be unable to eat or drink. During those10 years, an older person may die from something else, such as cancer or a stroke. I am much more confident about giving a 10-year diagnosis, because Dr Deeny has left the Committee Room. He would probably contradict me on some of the technical terms that I have used.

Ms S Ramsey:
I am a consultant.

Ms Ní Chuilín:
No, she is not. [Laughter.]

Professor Andrews:
During those 10 years, some people will apparently develop dementia overnight. An individual may have an accident, such as a fall, and end up in hospital. Perhaps that individual’s partner has died. Suddenly, the person cannot cope. Descent depends on how much support is available: a person may be in the high sunshine at the top of the hill before something happens that takes him or her right down into the shadows. Without much support, people with dementia can start going downhill straight away and bump along the bottom.

There is a hard economic perspective that even those who do not care as we do about people with dementia will understand: it costs much more to let people sink and bump along the bottom, because people on the high ground are still at home and doing things for themselves. If a hospital admission means that a person never gets well enough to return home, that admission has incurred an impossible and unnecessary cost.

The Chairperson asked whether we know how many people have dementia. Those who are on the high territory, still surviving well and whose families are coping with them, may not have come to our attention. The Committee can extrapolate from the figures how many people fall into that category. However, we can work on the assumption that those whom we know to have been diagnosed with dementia probably form only a proportion of the total.

A person with dementia may be admitted to hospital, treated and, if lucky, return home. It may not be recorded that that person has dementia, which has happened. We do not know the exact figure, but we can guess.

The Chairperson:
Is the figure much higher than the 16,000 quoted in your briefing paper?

Professor Andrews:
Yes, but it is difficult to say by how much.

Mr Buchanan:
Is training provided in early diagnosis? That is vital. You mentioned training for those who work in day care and for nurses, but is training available for families? When a relative is diagnosed with dementia, families cannot fully grasp the situation. A person whose whole attitude has changed can no longer take instructions or directions, and that places extra strain on families.

I have watched my father-in-law waste away over several years because of dementia. Recently, I gave my mother-in-law details on Alzheimer’s disease; she said that she wished that she had received that information three years earlier. There is ignorance in family circles — they know nothing about the disease, because it is new to them. Albeit that excellent day care is provided, is any training, help or support given to families?

Iris mentioned how some dementia sufferers who are in homes for the elderly are undernourished. I have often been in such homes, and I have seen barely touched food being taken away because the person with dementia did not know that they should have eaten.

Therefore, there must be a change of attitude among carers and nurses. If a person does not eat, carers must take the time to ensure that patients eat the food that they have been given. I experienced all that with my father-in-law, so I know exactly what is involved. The care provided is excellent, but the carers do not seem to be trained to grasp the importance of nourishment.

Professor Andrews:
There are two parts to your comments. For the most part, I will leave Maria to discuss the help that is on offer at the point of diagnosis. However, I will make an initial point about it.

We can contrast that situation with that of someone who is expecting a baby. When a pregnant woman goes to her GP, she gets all sorts of instruction. It does not matter how many babies family members have already had. From personal experience, I can say that it does not matter whether a woman has two degrees and two nursing qualifications, she will still be given masses of information. A baby may be something that she has longed for, and she may know a great deal about it already. However, in Scotland when people go to a doctor and are diagnosed with dementia, they are lucky if their partner gets a leaflet to explain what dementia is.

As I have already said, because dementia often is not diagnosed, a reliable way of knowing that someone has dementia is when he or she self-reports — or the family report — a deterioration. A daughter may report, for example, that her mother can no longer work the television or make her tea. I am sorry to say that some GPs would still reply that it is just old age and ask what one expects from a person of that age. However, if, at that point, someone were to say to the daughter that her mother may be suffering from dementia, her family would begin to explore websites, look at local directories or get in touch with a local Alzheimer’s disease organisation. The family would find a plethora of information that would not yet have been given to them as a package. That is the situation in Scotland.

Mr Buchanan mentioned eating and drinking, which are really important. At the Dementia Services Development Centre at the University of Stirling, a room is set out with many different ideas that show how people with dementia can be helped to eat and drink. Nursing staff may say that they do not have time to ensure that every patient takes enough food; however, research shows that if patients are gathered around a table at which one person who has most of his or her faculties sits eating and drinking, the others will copy. In that way, four or five people who have dementia will eat most of their dinner, simply because someone present has given them a non-verbal cue. It is reverse psychology, in much the same way that if biscuits are on a table and no one is eating them, as soon as someone dives in, so does everyone else.

Such simple psychology helps people with dementia to eat and drink. It is not a matter of getting more nurses to spoon-feed more people; rather, it is a matter of having the right crockery and the right contrast in colour between food and plate. I could give a two-hour lecture on how to help people with dementia to eat and drink, but I know that that is not what the Committee wants to hear from us right now; however.

I am not sure whether people in Northern Ireland get the sort of help at the point of diagnosis, to which Mr Buchanan referred, so I will hand over to Maria.

Ms McManus:
Mr Buchanan’s point is good and well made. We can make the greatest impact by helping front-line staff to know how best to act at critical times, how to share knowledge with families, and to how support them. We have partners in the voluntary sector: the Alzheimer’s Society, which will make representations to the Committee, is a key organisation, and another is Age Concern. Both support carers, as well as patients.

We can make an impact by supporting staff to do the right thing at the right time and by helping them to know how to respond to difficult situations. Our core training — be it in occupational therapy, nursing or medicine — does not always prepare us sufficiently for the specialism that is dementia. All the time, we are learning collectively what person-centred care can do to improve the quality of services and to galvanise teams of people.

That is the way in which to ensure that information and knowledge are shared with carers. We must empower carers to do their best. We must help them to understand what is happening to someone about whom they care very much, and we must respond to them. We approach the partnership by delivering better assessment services, recognition diagnosis, and, ultimately, a response. Those partnerships must be in place, as we are in for the long haul in cases in which someone has dementia. No quick and easy solution is available.

One of our key messages is that we provide two services. We are also there for the long haul, as partnerships change, develop and improve the quality of their services, in order that the person with dementia and his or her carer receive a better, more responsive service.

Ms S Ramsey:
Thank you for your presentation. We are all under the impression that the Health Service is supposed to be free at the point of delivery, but that is not the case for those who suffer from dementia or related conditions. Other Committee Members have mentioned how dementia affects family members and carers. However, I want to talk about the availability of drugs.

I want to thank the Assembly’s Research Service, which has provided us with a very good briefing paper. It states that drugs treatments are available on the NHS and have been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA). However, the briefing paper states that NICE emphasises:

“While … its own guidance does not override the individual responsibility of doctors to make decisions in the best interests of their patients it does exclude some Alzheimer’s patients from receiving certain drugs treatments.”

In your briefing paper, you estimate the total annual cost of Alzheimer’s drugs in the North at £405 million — £25,472 annually for each patient. The cost of issuing drugs to a patient is £2·50 a day. I am not asking you to justify NICE’s guidance, or, indeed, its taking away of those drugs. If we are going to save some of the £405 million that is spent annually, at a cost of £2·50 per drug, where does NICE’s guidance sit? In fairness, NICE is not saying that exclusion is nothing to do with medical considerations, but do you believe that it is more to do with financial issues than availability for patients?

Furthermore, is Alzheimer’s disease, or dementia, accepted as an illness in the case of people who apply for disability living allowance (DLA)?

Professor Andrews:

Unfortunately, I cannot answer your second question. However, we can provide you with that information if you cannot find a more immediate source to answer it.

Ms S Ramsey:
I am merely trying to tease out the other issues.

Professor Andrews:
A more important, general point needs to be made. If we take the ballpark figure of 10 years as the duration of the illness, a great deal of support is offered at various times to people going through the disease processes of Alzheimer’s. Much of that support is provided by health services and social services, including everything from information, which is not always available from the places it is supposed to be, to home helps and exercise clubs. Patients can attend day centres and avail themselves of activities such as reality orientation and cognitive behavioural psychotherapy.

As part of the Scottish intercollegiate guidelines network, a group of clinicians got together to review research on services across the world. The resulting information demonstrated that a huge number of provisions for people with dementia have no strong research base. A cost and benefit analysis has been carried out on medication, but many other services are provided for people with dementia on which there have been no cost and benefit analyses. The one exception is that people know that the daily cost of drug treatment is £2·50 and they know exactly what they get for that.

No one can say exactly what benefits are derived from something such as admission to an acute hospital. Although there is a general sense that such admissions do no good at all, people are not sure how much they cost. Therefore, there is an anomaly in the extent to which different elements of treatment are measured.

Ms S Ramsey:
NICE has stated that it does not override the individual responsibility of doctors. Therefore, if I were to present tomorrow with some stage of dementia and my doctor told me that I would be entitled to those drugs, would they be available on the NHS?

Professor Andrews:
If what you said is true, they would be available.

The Chairperson:
Then there is a misconception, because I thought that the NICE guidelines ruled out the use of those drugs in Northern Ireland.

Ms S Ramsey:
The professor is saying that the guidelines do not override an individual doctor. It is up to doctors to challenge NICE, but I doubt that they would do so.

The Chairperson:
That is an interesting point. Everyone has now had an opportunity to question June and Maria, so thank you for coming today and for giving the Committee a good insight into the problems that you face. We wish you well with all that you do. We will discuss your evidence, make recommendations and write to the Minister to brief him on your evidence.

I welcome the next set of witnesses. Claire Keatinge is the director of the Alzheimer’s Society in Northern Ireland, and William Hogg is a carer and, in my view, a special person. Siobhan Donaghy is a representative from the Northern Ireland Dementia Forum, and Brid Kerrigan is a consultant psychiatrist in old age.

The format will be the same as for the previous witnesses. You will have 10 minutes or so to present your evidence. However, I will not tie you to that completely and push a button to make you disappear after 10 minutes.

Ms Claire Keatinge: (Alzheimer’s Society):
I thank the Committee for inviting us to address members on the current and future availability of the only clinically effective drug treatments for Alzheimer’s disease on the NHS in Northern Ireland.

I am the director of the Alzheimer’s Society in Northern Ireland. I have some idea of MLAs’ knowledge and level of interest in Azheimer’s disease and other forms of dementia. That was outlined clearly, and with considerable feeling, in the Assembly debate on world Alzheimer’s day that took place on Monday 24 September 2007. There was full cross-party support for Carmel Hanna’s motion that included a proposal for:

“access to clinically effective drugs, when appropriate.”

I will focus on the current and future availability of the only licensed drug treatments for Alzheimer’s disease. Drug treatments are only part of the health and social care interventions that may be required by people with the disease. Professor Andrews has outlined eloquently some of the important issues surrounding the development of better and additional services in health and social care for people with dementia. That is being done through The Dementia Services Development Centre in Northern Ireland. As a member of its advisory group, I am committed to providing the range of improvements that are required to deliver the health and social care services that people with dementia need and deserve.

The work to cost and prioritise the recommendations of the report ‘Living Fuller Lives’, which was published following the Bamford Review, and the development of a comprehensive strategy for dementia care in Northern Ireland have yet to be completed.

That challenge is for another day.

The drug treatments in question are best known by their brand names: Exelon, Reminyl and Aricept. They do not work for all patients. They cost £2·50 a day and they are the only licensed drugs for the treatment of early and moderate stages of Alzheimer’s disease. For those patients for whom the drugs are effective, the impact is dramatic. They enable those patients to retain their independence; choice; capacity to sustain relationships; and ability to make plans and to maximise their quality of life.

The National Institute for Health and Clinical Excellence accepts that those drugs are clinically effective at all stages of Alzheimer’s disease. It advises, however, that they are not sufficiently cost-effective for people in the early stages of Alzheimer’s disease. That is about money — and the value that we place on the lives of people who have Alzheimer’s disease and those who care for them. The drugs are currently available on the NHS in Northern Ireland on the recommendation of, and the initial prescribing by, consultants.

Until July 2006, NICE did not have a formal status in Northern Ireland. There is now a Northern Ireland link with NICE. The Minister must decide whether or not to implement new and highly contentious NICE guidance that recommends the withdrawal of Aricept, Reminyl and Exelon from the NHS for the 1,400 people that will develop Alzheimer’s disease in Northern Ireland each year. That is a political matter. The Health Committee has an immense responsibility, and immense expertise, in providing its advice to the Minister of Health, Social Services and Public Safety, Mr McGimpsey, before he makes a decision on whether to continue NHS funding of those drugs.

Alzheimer’s disease affects people from every walk of life, every city, every town and every rural hamlet. It pays no attention whatsoever to any of our more traditional community divides. The issues affecting people with Alzheimer’s disease will be familiar to members through constituency work, our briefings, and their role in the Health Committee. I have the pleasure of being joined by people who can provide substantial expertise to inform members’ discussion and decision-making. Colleagues from the Royal College of Psychiatrists and the Northern Ireland Dementia Forum will speak from their wealth of experience and knowledge gained from their professions and organisations.

I am also joined by William Hogg, who cares for his wife Mary; she is living with Alzheimer’s disease and takes the drugs that are currently under threat of withdrawal. William will outline some of the impact that that threat has had on Mary, and on him. I ask the Committee to consider that people’s rights do not diminish, and should not be seen to diminish, with age or illness. Surely the lives of people with Alzheimer’s disease, and the lives of the families and friends who provide the bulk of their care, really are worth the £2·50 a day that it costs to provide the drugs. Those drugs are available on the NHS now. Exelon, Reminyl and Aricept are the only licensed drug treatments for early-stage Alzheimer’s disease. No alternative treatment is available. That drug treatment is clinically effective and, although it does not work for everybody, it has a dramatic impact on those for whom it does work.

Members of the Committee, we ask you all to ensure that you have the information that you need to enable you to advise the Minister. We ask you to support our position, which is that Alzheimer’s patients deserve and should receive equity with everyone else; when they need treatment, they should receive it. One does not wait for someone with a broken leg to develop gangrene before providing treatment.

Mr William Hogg (Alzheimer’s Society):
My wife, Mary, is 65 years old. We first noticed symptoms of Alzheimer’s disease when she was about 58 or 59, when she was working in our family business. We noticed little inefficiencies beginning to creep into her work, such as the inability to embrace new systems. At home, she became a bit forgetful and had difficulty with time-related tasks. She had difficulty in conversing and in following reasoned arguments. A year passed before she was diagnosed as having Alzheimer’s disease. At that point, she was offered the drugs.

Mary’s condition has progressed in the intervening time. Apparently, there are four stages in the illness. Currently, Mary is approaching the end of the second stage.

Through my connection with the Alzheimer’s Society, I have talked to other carers of people who live with the disease. In comparing Mary with those other sufferers, I believe that the disease has progressed more slowly in Mary’s case because she was given the drugs at an earlier stage. As a layman, I believe that the drugs have been effective.

There have been various dramatic events in the progression of the disease, such as Mary’s giving up golf because she could not keep score, and the rescinding of her driving licence.

As the disease progressed, there were traumatic events — for example, she had to give up golf because she could not keep the score; she had her driving licence rescinded. However, the most traumatic event occurred when Mary was first diagnosed with Alzheimer’s disease. At that point, she was still able to think of others whom she knew had the disease and ask herself if she faced similar problems, and if there was no hope. For approximately six months, she woke up each morning in tears, thinking about what the rest of her life held.

As she was on the tablets, I pointed out that she was lucky to have access to the medication and that there was hope that scientists would come up with something that would help her before she reached the stage that she was worried about. That hope helped her to get through the early stages. Now she has gone beyond that.

If she had not been allowed the drugs, despite their being on the market and their efficacy being known; if someone had told me that they had the drugs but that she could not have them; or if someone were to say that the drugs were going to be withdrawn; I would find that unthinkable and indefensible. I cannot see how such a drug, one that is probably cheaper than most, could be withheld under circumstances such as those experienced by Mary.

Ms Keatinge:
I would like to introduce Dr Brid Kerrigan, who represents the Royal College of Psychiatrists (RCP).

Dr Brid Kerrigan (Alzheimer’s Society):
First and foremost, I am a doctor, then a psychiatrist, and now a specialist in dementia care. The Royal College of Psychiatrists strongly supports the Alzheimer’s Society’s position on the provision of drugs. The National Institute for Health and Clinical Excellence is an independent health authority, which was set up in England and Wales. We are not England and Wales; we are Northern Ireland. We have an integrated Health Service. In England and Wales, there is a health service and a social care service, and never the twain shall meet.

Our system is streets ahead of theirs in terms of managing Alzheimer’s disease. I have used the drugs in question for 12 years. I use them in my clinic, and I see them work. My colleagues and I talk to those who bring in their loved ones who are affected by the disease; we know that the drugs work, and we see the evidence that they work.

The drugs were embargoed to my colleagues in England and Wales when they first came out. They do not have the same wealth of experience that we have in using the drugs. We know that the drugs are effective.

It is unthinkable that I, as a doctor, would have to tell a patient in my clinic that the drugs are to be withdrawn, when I know that doctors have only those drugs to aid patients to continue to function to a better extent, and to have a quality of life. The drugs do not prolong life, but they certainly raise the quality of a patient’s remaining years to a much higher level.

I know patients who can continue to work their farms and grandmothers who are able to babysit their grandchildren while taking the drugs. A 49-year-old lady came to my clinic two weeks ago — I am not far off 49. How can I tell her to leave, and that I will only be able to supply the drug if she comes back in two years’ time, when she is more severely impaired? It is an absolute nonsense. My plea to you, Committee members, is that you make representations to the Minister; we cannot let such people down.

The Chairperson:
It is an emotive issue. My sister-in-law was diagnosed with the condition at 58, and later died. After diagnosis, she showed the usual symptoms. She would put the kettle in the fridge, for instance, or get confused and burn things. She was found on the road in her nightdress. When she was admitted to a comfortable residential home she weighed approximately 18 stone, and when she died she weighed four stone. We know what caused that weight loss: she simply walked off the flesh. It was an horrendous, traumatic experience. At that time, such drugs were not talked about.

I applaud the work of the Alzheimer’s Society. Section 75 of the Northern Ireland Act 1998 requires respect for older people. I speak for everyone here when I say that it is a travesty that for want of £2·50 we cannot encourage people to avail themselves of that drug to improve the quality of their lives.

I get angry thinking about that. What is the point of research to find medicines to help people, if they are then to be denied access to those medicines? That is crazy. I take Dr Kerrigan’s point that the National Institute for Health and Clinical Excellence had not organised in Northern Ireland, and therefore I feel no obligation to accept its directive that we should not offer that drug.

Ms Keatinge:
I am sorry: before we move to questions, may I introduce my colleague from the Northern Ireland Dementia Forum, Siobhan Donaghy?

The Chairperson:
I apologise. I thought that you had finished.

Ms Keatinge:
Siobhan is here to assist the Committee on the cost issue and the effect that withdrawing the medication would have on health and social care services.

The Chairperson:
It will increase the stress on them.

Ms Siobhan Donaghy (Alzheimer’s Society):
The Northern Ireland Dementia Forum is a multi-disciplinary group of professionals who work in dementia services across Northern Ireland. We are committed to the promotion of high-quality care for people with dementia. We hold an annual conference and invite a wide range of professionals, care workers and carers to consider particular issues. Usually, the Minister will attend. Last year, we launched a website containing information for other professionals, carers, people experiencing dementia and their families.

I am a specialist dementia nurse and I work in the Armagh and Dungannon areas. I meet people like William and his wife every day. We have come a long way in dementia services since the publication in 1995 of the Dementia Policy Scrutiny Report. Availability of the drugs provided the main impetus for that. The report said that there should be specialist services for people with dementia to provide early diagnosis and intervention. If those drugs were withdrawn, we would lose 12 years of excellent work.

We are fortunate that we are beginning to encounter people in the early stages of dementia who allow us to work with them. We provide counselling on their diagnoses, give them the information and advice that they need, help them to plan for the future and put in place financial arrangements, talk to their families and help them to deal with the diagnoses. If we do not identify people with dementia early, they may fall into crisis. Those drugs apparently cost £400,000 a year, but, without them, those people will present to social services in crisis, and it will cost much more to deal with the situation at that stage. William is aware of his wife’s condition and is planning for the future; he knows what help is available. There is not the same degree of panic when one has a contact that can help with the delivery of services.

I agree with Brid. A colleague of mine attended a memory clinic in Manchester and was shown the fantastic work on diagnosis, assessment and drugs. A carer happened to say that she thought that her husband would benefit from day care. A nurse in the clinic acknowledged the comment but carried on talking about drugs and other matters. In Northern Ireland, we have integrated health and social care. Had I been a nurse in that clinic, I could have made a referral there and then; I can do that with the system here in Northern Ireland.

We do not want to lose that in Northern Ireland. We have a long way to go, but we are getting there, and those drugs must be available. We meet people in the early stages of dementia who will benefit from drugs and others who will not; however, there are potential benefits to all if identified early.

The Chairperson:
The old adage “penny wise, pound foolish” seems to apply in that case.

Ms Donaghy:
As does the saying “forewarned is forearmed”.

The Chairperson:
I agree. Having watched someone decline due to Alzheimer’s disease, I sympathise with carers and those who are suffering from dementia.

Ms Ní Chuilín:
Thank you all for attending. Iris is correct, and everyone here fully supports your work. The good thing about having integrated services is that there are local politicians holding a local Minister of Health, Social Services and Public Safety to account. Sinn Féin and, I am sure, all the party spokespersons on the Committee fully support retention of the drugs.

Claire mentioned that people’s rights do not diminish with major illnesses; the fact is that they do. Older people cannot stand up for their rights in the same way as younger people, who are able to help themselves. Older people are dependent.

Earlier, we discussed nutrition for people with dementia. I told Iris that I have been in hospitals with my youngster. When he did not eat, he was offered ice cream and jelly and anything that he wanted, as long as he ate and drank. However, I sat with my grandfather who died at 93 with dementia, and when his tray was taken away, no one asked him whether he wanted ice cream or anything else. That is my experience of the care that people with dementia receive. It is just not fair.

To take away those drugs without offering a well-researched and acceptable alternative is a breach of human rights. I say that unequivocally. One cannot offer hope and the chance of living a normal life with one hand, and remove it with the other.

The evidence from the research is strong. The subject has been debated, and we need to move on. Others will speak for their respective parties, but the Alzheimer’s Society has Sinn Féin’s support.

Ms Keatinge:
To pick up the question of equality, it is unclear whether NICE is a designated body for the purposes of the requirement in section 75 of the 1998 Act to undertake equality impact assessments — however, the Department certainly is.

Alzheimer’s disease predominately affects older people and twice as many women as men, so that differential impact must be taken into account.

The Chairperson:
I take that point. The Committee will raise it when the Minister attends the Committee on 4 October, DV. That will be a good opportunity to raise such issues.

Dr Deeny:
You are welcome, ladies and William. A female partner called Siobhan Donaghy left my practice recently, and when I saw that name on the agenda, I thought that she must have a new job.

Speaking as a GP, I am horrified. I ought to have known more about the subject. The short-sightedness in the Health Service shocks me as well; it is unbelievable. Several years ago, my practice had a problem because the GPs were prescribing a certain drug for controlling blood pressure. We were told to prescribe a much cheaper alternative, which we knew was less effective. We won our case, because we argued that if we did not treat people with high blood pressure thoroughly, we would end up having to treat them for strokes and provide occupational therapy and physiotherapy. No one seems to take account of the cost to the Health Service of not treating diseases in the early stages. Brid’s point was well made.

I want to make it clear for the benefit of other Committee members — Sue is not here, so I will tell her later — that GPs cannot prescribe those drugs.

Ms Ní Chuilín:
Only the consultants can do that.

Dr Deeny:
They are prescribed only by consultants. I am wondering why that is so, when one considers that they cost £2·50 a day. If a consultant, such as Brid, diagnosed one of my patients — a lady who was in the early stages of Alzheimer’s disease or dementia — I would prescribe the drug. Most GPs would do the same.

Many of us are close to our patients, and we know their families. There is no way that we would withhold treatment that costs £2·50 a day, particularly when we know that the effects are dramatic, as Ms Keatinge said. GPs cannot prescribe those drugs; they must be approved by a consultant. I wonder why that is the case, given that most GPs would prescribe the drug without a problem to a patient who was diagnosed as being in the early stages of dementia.

Consultants are employed by trusts, whereas GPs are independent contractors who can make independent judgements about patient needs. Trusts can issue directives to GPs stating that, for example, it is its policy not to prescribe those drugs. I certainly support you; the situation is a scandal. I have worked in my practice for 21 years, and I know most of the families well, yet I cannot prescribe the drug when I suspect that a patient is in the early stages of dementia. Prescribing the drug depends on a consultant, who may be under the control of a trust. The trust in my area in particular has spent a great deal of money on other things. The amount of money that is wasted in administration in the Health Service is scandalous.

As an MLA and a GP, I give you my full support. Proper diagnosis should be made by a consultant, and the decision on whether to prescribe should be made by the GP, who knows the family best. Is the fourth drug, Ebixa, clinically effective?

Dr Kerrigan:
Yes. In our day-to-day practice, we use the other three drugs first line. The side-effect profile of certain individuals, such as those who have heart difficulties, means that they cannot receive any of the first three drugs. Memantine, which is the clinical name for Ebixa, would then be prescribed as second line; therefore, at least some type of drug could be prescribed. Our experience of the first three drugs is more extensive, as they were available much earlier than memantine. However, memantine has proved to be clinically effective over a number of years and is therefore used.

Consultant colleagues of mine in England and Wales, who are employed by trusts, have not been allowed to prescribe the medication. They have been embargoed from doing so, and that is a dreadful position for them to be in. They have had to explain that to their patients.

Dr Deeny:
Most drugs that GPs do not prescribe are specialised, expensive drugs for the type of conditions that require treatment at the major hospitals. However, £2·50 a day for a drug is a lot cheaper than many of the drugs that GPs already prescribe. Being cynical, I wonder whether the trusts are making sure that GPs cannot prescribe the drugs in the knowledge that they would prescribe, if permitted.

Dr Kerrigan:
I believe that that is the case. Moreover, part of the problem is that when the Alzheimer’s Society has courted GPs to diagnose and refer earlier, so that, under best practice, we can address the health-and social-care aspect of the illness, a great many more people are coming through than had been anticipated. In the past, people in their 40s who have the symptoms of dementia would have been referred to a neurologist or gone around the world for support. No one would have contemplated that those individuals were suffering from dementia. Their illness would have been diagnosed as a neurological condition; anything but dementia. It is rare to find dementia in a 49-year-old, but it is more prevalent among people who, like William’s wife, are 55 to 60 years old. You will read time and time again that dementia among the under 65s is rare — that is nonsense. That is a repetition of what the old textbooks say, but dementia is not rare.

The Chairperson:
There is a great deal of misinformation.

Dr Kerrigan:
I already have 30 people under the age of 65 on my caseload. I am one old-age psychiatrist, and there are almost 20,000 people in Northern Ireland who have dementia. Dementia is not rare.

The Chairperson:
It seems so contradictory that, on the one hand, such advances have been made in prolonging people’s lives, yet, on the other hand, those people entering older age are being denied the right to have a quality of life.

Dr Kerrigan:

The Chairperson:
One wonders who makes those decisions and why. Are there alternative reasons for making such decisions?

Ms Donaghy:
It is about more than GPs merely prescribing the drugs — the follow-up is important. Advice and support for managing the condition are important. There is a need for specialist teams that include consultant psychiatrists who recommend the prescription of those drugs.

Mr McCallister:
How practical are the drugs? Where is the cut-off point at which stage the drugs cease to be effective? Are sufferers on the drugs for life, or are they prescribed when they reach stage two or three of the disease?

Dr Kerrigan:
Our current practice is that there, when people present, some leeway is allowed. People’s deterioration is still deemed to be down to the normal ageing process — wear and tear and simply getting older.

We have a clear method of diagnosing the condition. When someone is diagnosed with a definite dementia, he or she is prescribed those drugs, regardless of whether the mild, moderate or severe stage presents. However, we may use different drugs for different phases of the condition. When those people come into our system, they will see, on the health side, me, as a specialist in dementia care, and have an outpatient appointment at least every six months. On the social-care side, they will have nurse or social worker link-up. Obviously, that service will be more frequent. We also have an integrated team; other members of the team and I regularly discuss anything that raises its head in between those appointments.

Again, the GP is part of that network, but the team members have direct contact with the family. Carers’ assessments are offered, and those assessments continue while the person is symptomatic. We will monitor people’s presentation and their symptomatology, and the drugs will be stopped if we feel that they are no longer of benefit. Medication will not continue if it is deemed by the team no longer to have any beneficial effect.

Mr McCallister:
My second question relates to the equality agenda. The drugs cost £2·50 day, which is not much, given that it amounts to just over £900 a year. Do many people, particularly across the water, opt out and pay privately for the medication?

Ms Donaghy:
People do that.

Mr McCallister:
The drugs cost £900 a year, but only people in a certain income bracket can afford that.

Ms Donaghy:
Southampton is an example of a place where that happens. It has the Southampton Memory Clinic and other private clinics.

Ms Keatinge:
That is the default position for many people. Families will often say that they can rustle up £2·50 a day among them. The real questions are whether drugs should be means-tested and whether we should create a two-tier health system. All licensed medications are available on private prescription. There is no issue about licensing the drugs. They are available, as are all other licensed drugs, but to go down that route is to take a two-tier Health Service approach. The Committee must decide whether to support continued funding, through the NHS, of the only clinically effective drug treatment for everyone with Alzheimer’s disease.

Again, we immediately stray into the equality issue. Why on earth would any politician want to tell someone with Alzheimer’s disease that he or she must pay for drugs, yet someone with blood-pressure problems does not?

Mr McCallister:
I was not suggesting that. I simply wanted to know your thoughts on the matter from an equality point of view. It is unfair if someone with Alzheimer’s disease can be treated only if he or she is in a certain income bracket.

Ms Keatinge:
That applies to a wide range of conditions. However, we are talking modestly priced interventions, the cost of which, if withdrawn, according to the Minister’s response to a written question on 14 September 2007, would mean a saving of £400,000 a year. That saving would not be offset against the cost of carers who must give up jobs, crisis interventions by health and social care trusts or additional treatments that are required. However, given that £405 million is the overall cost of care for Alzheimer’s sufferers, £400,000 is a drop in the ocean.

The Chairperson:
To pick up on a point that John McCallister made, what is the alternative for a dementia sufferer who reaches the stage at which those three or four drugs are no longer of benefit? Does he or she experience a gradual decline?

Dr Kerrigan:
The drugs work in a certain way. They will not prolong a patient’s life. Therefore, if it is felt that the drugs are no longer beneficial — that is, they are no longer improving quality of life — they will cease to be prescribed. You are correct to say we do not have an alternative. However, by that stage, a robust social-care package, with team support, is usually in place, and that continues.

The Chairperson:
William, before I ask Tom Buchanan to ask his question and finish the session, will you give us an insight into what your life has been like, and what effect Alzheimer’s disease has had on your family?

Mr Hogg:
Certainly. I was running a small family business and was drifting into retirement when, suddenly, I had to retire fully, because my wife, Mary, required constant attention. She did not always need it, but she had lost all confidence, sense of time, and so on. She could not go out on her own without the risk of losing her way. She could not drive or visit people.

The Chairperson:
What about your family? Do you have children and grandchildren?

Mr Hogg:
I have a son who lives locally and a daughter who lives in England. Mary’s condition does not affect them to the same extent.

The Chairperson:
Is that because they live away from home?

Mr Hogg:
Yes. They are in their mid-30s. Of course, they are affected by the knowledge of how their mother will finish her days, and although the Mary’s regression has been slower than most, the outcome is still fairly inevitable.

The Chairperson:
Did you notice improvement after the drug had been administered?

Mr Hogg:
There may have been a minor improvement for six months or so, but then something new would occur, and there would be a gradual deterioration. I have spoken to other people in the carers’ group, and some of their family members did not get the drug — perhaps they were not as persistent as me, or perhaps their relatives were not deemed suitable. Those patients seem to have deteriorated much more quickly.

However, the drug bought us time and gave us hope. Mary used to lie in bed in the morning and think about how she would finish her life. However, when she was on the medication, we knew that that would not happen for a long time, and doctors might come up with something in the meantime. I do not know whether they will, but that medication provided hope at least, which was very important at that time.

Mr Buchanan:
My question may have been answered, but I will ask it anyway. The Exchequer is losing £2·8 million in taxes every year because of Alzheimer’s disease and its different effects. To administer those drugs in the early stages of the disease, whatever the age of the person, will mean that some people will be able to stay in employment for longer or stay out of nursing homes, and that family members will not have to take time off work to look after them. What savings will be made if expenditure on those drugs is balanced against the £2·8 million loss?

Ms Keatinge:
That is a fascinating question for a health Committee. How are apples, pears, oranges and grapes, added up? We are talking about the cost of drugs for somebody such as William. For example, someone who takes the medication could continue to work in the family business and remain in employment. If people who have Alzheimer’s disease were to be administered that medication, they might not need the same level of early health-and-social-care intervention, and they might not have a fall or a crisis admission to hospital. It is an utterly inexact science that is argued about by every health economist the length and breadth of the developed world.

However, the simplest answer is that, at present, carers in Northern Ireland lose nearly £16 million a year as a result of giving up paid work or reducing their hours. The Alzheimer’s Society’s Dementia UK report’s Northern Ireland supplement contains evidence of that, and that figure can only increase. Set against the £400,000 drugs bill for people who are in the early stages of Alzheimer’s disease, there is a straightforward economic trade-off; however, the evidence for that is hotly disputed.

Mr Buchanan:
I would have thought that it would be much more beneficial to make the drugs available, particularly when we see the costs of not offering them.

Ms Keatinge:
Further to that, many carers are older people — perhaps in their late 60s or 70s — who, when they have finished their caring role on the death of the person with dementia, find that they have become hugely isolated. They may be depressed or out of their social network. They are less likely to re-engage and, therefore, are more in need of intense service provision and a variety of treatments. It is as though we are putting people in a washing machine that goes round and round. We need to step back, open the door, let people out and provide all the available treatment. All the costs, primarily, are human.

Dr Kerrigan:
Those drugs have been used for 12 years, and we know that they do much more than simply help on the cognitive or memory side. They are also useful in acting against agitation and some other symptoms of dementia; for example, in cases in which people become a bit paranoid and suspicious, or perhaps aggressive. Those are distressing symptoms. Some can be ameliorated, and our evidence shows that those drugs have that effect. If some of the symptoms could be reduced, carers could do their shopping, for example, because they would know that the person who has dementia is a bit more settled. The effects of the drugs are much more global.

NICE does not know that because it has not been using those drugs. NICE does not have that wealth of experience, so it cannot see the results. We know that the drugs do more than just help with memory.

Ms S Ramsey:
I am sorry that I had to leave the Committee earlier. The Research Service’s paper quotes the MHRA as saying:

“a product can be sold while NICE says it can be bought (by the NHS).”

In the correspondence that you received, the ME Association mentions NICE and guidelines. What type of drugs are available and have been cleared by MHRA but are not prescribed to patients here? What are the Department’s views on NICE? I understand that we have a duty to society to ensure that we abide by the proper regulations. However, I am concerned that we are talking about the cost of medicines and not considering the human costs.

If the Committee were to obtain those figures, we could get medicine that could have a positive impact on people’s lives. However, because of specific costing, that medicine is not being prescribed.

The Chairperson:
Yes, we are not looking at those long-term issues that will cost more as a result of people not being treated early.

Mr Hogg:
To return to the question that I was asked previously, and to back up what Dr Kerrigan has said, Mary’s paranoia and aggression, and so on, have been very low compared to others whom I know of. She is able to go out for a meal or on holiday, for example. In other cases that I am aware of, some people are already in care homes, because they no longer had people living with them, and the illness had progressed so much faster. Therefore, broadly speaking, the drugs work and have proved effective.

Ms Donaghy:
To answer the question from earlier about disability living allowance and attendance allowance, yes, people who have an impairment as a result of dementia can be considered for them.

The Chairperson:
It has been helpful for us, as elected representatives, to hear what you had to say. I wish you well in all that you do. The Committee will not let the issue drop; we will be taking it up with the Minister. Thank you all for giving up your time.

Ms Keatinge:
Likewise, I thank the Committee for its time. If we can be further assist the Committee on any of the wider aspects of dementia care, we will be pleased to do so.