Dementia

In connection with a new report from the Alzheimer's Society and a response from the government (coming next week), Professor Alistair Burns joined us for a webchat on 2 April 2012. Alistair is the Department of Health's clinical director for dementia and a professor at Manchester University.

Q: I am wondering how far you think Alzheimer's research is subject to trends, fashions and cliques? And whether it holds back the overall progress of science? There seems to be a rather limited menu out there at the moment - either drug based interventions that will make a lot of money for drug companies or expensive biometric screening programmes that make a lot of money for specialists and private hospitals.

I don't see very many low cost interventions, eg: simple screening that can happen in primary care settings (apart from the rather out-of-date Mini Mental State Examination, that fails to control for education, social class, whether English is a native language and so on). I wonder why this is? BoffinGran

A: I think that like all other disease research, some will be driven by the individual interests and skills of researchers. The Prime Minister's Challenge on Dementia has emphasised that more money will be invested in research and this will among other things, broaden the range of research which is undertaken. Indeed, there are specific research themes such as the brain imaging theme in biobank which will help this.

The results of the recent call for dementia specific proposals from the National Institute for Health Research will, I hope, demonstrate the range of research being undertaken. Your comment about the Mini Mental State is well taken. The Prime Minister's Challenge on Dementia has emphasised identification of people as part of the health check in primary care.

Q: Given that 400,000 people are not diagnosed and that early diagnosis and treatment can slow down the progression of the diseasse, shouldn't GPs be playing a crucial role in early diagnosis? Also - if we suspect that a partner, relative or friend is beginning to show symptoms of dementia do you have any advice of how we can broach this very sensitive subject with them? HankiPanki

A: A thrust of our strategy on dementia is to put GPs at the centre of early diagnosis, and we are working with colleagues in primary care and the Royal College of General Practitioners to achieve this aim.

In terms of the person you mention with the early symptoms, it would do no harm to encourage them to go and see their GP and say that signs of memory loss are not necessarily the onset of dementia, and that there are many treatable conditions which can present with these symptoms. Also, memory loss is not an inevitable part of ageing and there are things we can do to help.

Q: The government is apparently going to double spending on research into dementia. Does this mean that it is anticipated there will eventually be a cure? stinginthetail

A: The increased spending on dementia research announced by the PM last week is great news. It means that there will be much more opportunity to work towards finding a cure. In the meantime, maximising the quality of care for people with dementia and their carers is a priority, which is the aim of everyone working in the field.

Q: At what point should you become worried about memory loss? My 85 year-old mother constantly repeats herself and seems not to realise that she is telling you things she's told you ten times already. Sometimes I think this is just because she is on her own a lot of the time and  sits worrying about things and they prey on her mind. But should I suggest a test? And how on earth do I broach such a thing, given that sometimes she seems fine?
wotafright

A: It's quite a difficult question to answer in terms of a specific time point where someone should become worried about memory loss. Generally speaking, having minor lapses of memory once a week or so could probably be part of normal ageing.

If it happens most days and begins to affect a person's life, that is different. If people forget something and it comes back then that is generally quite benign. But if the memory goes for good, that is a bit more of a worry. There are a number of conditions which can give rise to memory loss, not all of which are dementia. And so having an assessment by the GP is a very good thing and can do no harm.

Perhaps one way to broach the subject is to refer to the times when your mother does not seem fine, and say that it would be a good thing to get her memory checked out. So if it is something that is simple to treat then that could improve the situation.

Q: Why exactly is early diagnosis of Alzheimer's important, given that it is a progressive disease for which there is no cure? How much can it be arrested? I'm not sure I wouldn't prefer to live in ignorance a few more months. tiggywinkle

A: There are a number of reasons why an early diagnosis of Alzheimer's diesease is a good thing - it can allay fears that mild memory problems are due to Alzheimer's disease because not all are. Although there is not yet a cure there are many things that can be done to improve the quality of life for people with dementia. It allows people to avert a crisis in their care, and it allows individuals to plan for the future.

I have never met anyone who I have given a diagnosis of dementia to, who has said they would rather not have known the cause of their symptoms.

Q: Do you have any advice about the key things to look for in a care home? There are such awful stories about abuse of people with dementia (and with physical impairments). It feels such a big responsibility and I worry that I am going to be more influenced by carpets and curtains and smells than I should be. What should be my main concern or the key questions to ask? dullard

A: As part of the PM's Challenge we will be developing a Dementia Care Compact where organisations, including care homes, will set out their commitment to deliver best quality care.

You are quite right, it's difficult to know exactly what to look for, but I think it would be a good idea to concentrate on the attitude and deportment of the care staff, how engaged they are with the residents, and how the residents in the home seem (i.e. are they content, do they look well occupied), then you can look at the carpets and curtains!

Q: What does David Cameron mean when he says communities need to be more dementia friendly? Is this just a woolly, fuzzy, nice form of words or are there concrete proposals? spottygran

A: People living with dementia want to stay independent for as long as possible, and we want people with dementia to be able to say that they know what they can do to help themselves and who else can help them, and that their community is working to help them to live well and as independently as possibly.

We are working closely with the Alzheimer's Society to create a formal recognition process that will make cities, towns and villages accountable to people with dementia and their carers through local Dementia Action Alliances. We want, by 2015, up to 20 cities, towns and villages to have signed up to become more dementia-friendly. This includes getting businesses, large and small, to sign up to training and education of their staff and an awareness-raising campaign aimed at improving everyone's understanding and recognition of the symptoms of dementia.

Too often people are concerned they may be doing the wrong thing by offering help to someone who may be looking distressed or confused, however, we want there to be public understanding of the condition. Helping people in these situations can help them keep their independence and help them feel confident and not shy to ask for help in difficult situations also.

Q: Is the prevalence of dementia now just a sign of the ageing population? Or is it in some sense a new disease - maybe with environmental factors or simply just more diagnosed than it was? cloakanddagger

A: Dementia is one of the biggest challenges our society is facing and you are right, the numbers being affected will increase with an ageing population.

This isn't a new condition, but as the Prime Minister's Challenge points out, the amounts spent on research lags behind other major diseases such as cancer and heart disease. The increase in funding research goes some way to ensuring it is not considered any less important than other diseases.

Q: My father had dementia and for 2 years before his death, I found that my role as a carer was one of “piggy in the middle” which included not only caring for him, but also playing a key role in making sure that all the professional bodies (GP, Mental Health Services and Social Services) communicated together. I worked with all of them for 2 years to try and work out a way to relocate my father, so he could be closer to his family and we could look after him. I failed because no-one in social services wanted to help us find a way. Lorraine

A: You highlight a real challenge in the care of people with dementia and the support of carers like yourself. It must have been a real challenge for you to have juggled the role of being the main carer for your father and being a coordinator of all the professional bodies you described. It’s a common issue raised by carers.

The Department of Health has done a pilot study of a group of dementia advisors whose principal task it would be to coordinate the services provided by the agencies you describe, and the results of that should be available later this year. I know already of some areas where funding for advisors has been continued and we see the provision of coordinated care as a priority to support carers like you. There are examples of good practice such as in Gnosall in the West Midlands where care is coordinated round the local GP’s surgery which acts as a one-stop shop.

Q: My husband is 65 and has mild Alzheimer's. He is on Aricept but has been told by the DVLA he cannot drive. He loves driving and this has upset him. What are the rules? Oldtimer

A: I see a lot of people in my memory clinic where it is very distressing for their licence to have been withdrawn and in many cases, this can lead to a restriction of a person’s activities and independence. There clearly has to be a balance between this and the need for drivers to be safe for the benefit of everybody.

As a doctor I am often asked to complete a form from the DVLA, with the person’s permission, to describe their treatment and symptoms, and it is the DVLA who come to the conclusion as to whether the person should be granted a licence or not. The only person who is able to judge whether an individual is safe to drive is a registered driving test examiner and I know of people who appeal a negative decision and then “simply” have another driving test. I am then asked to make a judgement as to whether someone should be granted a driving licence for a day to allow the driving test to take place.

While you will appreciate that it would be inappropriate for me to comment on an individual circumstance, I have to say that many people in my memory clinic who have mild dementia and who are on Aricept continue to drive, although this is renewed every year, or sooner if there is a deterioration in their condition and they need to inform their insurance company of the circumstances. If you and your husband really think he is safe to drive, then I think an appeal sounds very appropriate.

Q: Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people? How do we treat the disease while avoiding this negativity? bridgeofsighs

A: You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.

You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.

In terms of treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.

Q: In a recent novel by Henning Mankell, the hero Wallander has blank moments where he is aware of not knowing where he is or anything about his situation; then his memory comes back fairly quickly. At the end of the novel, it is reported that he has succumbed to Alzheimer's. Is that an accurate rendering of how one feels? Brusselsgran

A: There is a condition called Transient Global Amnesia which gives rise to discrete blank episodes of memory which then return - compared to the gradual increasing memory problems from which people who have Alzheimer’s disease suffer. The amount of insight that a person has does vary and although people generally say that individuals with Alzheimer’s disease do not have insight, whereas people with other types of dementia, such as vascular dementia, or Lewy Body Dementia, may have insight, I find in my clinical practice that particularly in the early stages people with Alzheimer’s Disease do have insight. It sounds like an excellent book, which I shall read!

Q: My Mum has just been diagnosed with vascular dementia. It has taken almost nine months from first taking her to the doctors to the diagnosis. We were kept waiting for almost an hour when we went to see the consultant, and then it took another month before she received her medication. The whole thing was a nightmare. On the plus side the care and attention she is receiving now from the Memory Nurse is second to none. Sophiesmum

A: I’m sorry to hear of the time it has taken to receive a diagnosis. One of the priorities we have in the Department of Health is to ensure that an early and timely diagnosis is available to everybody, so stories like this will gradually and hopefully become a thing of the past.

I’m also sorry to hear that you had to wait an hour to see the consultant and I think it would be worthwhile making that frustration known to the hospital. It may be something simple, like they can re-order the appointment times to improve the service they give. I’m pleased to hear that the treatment you’re getting from the memory clinic nurse is of a high standard. All the memory clinic nurses I know have a great deal of experience, have had appropriate education and training in dementia and select specifically to do the job – and I think this comes out in the service you are describing.

Q: Can dementia be prevented or delayed by keeping both the body and brain active? I do lots of sudoku, crosswords, quizzes and enjoy getting involved in debates on all kinds of subjects. I am very fit and active and have a very healthy diet. I have mild high blood pressure which is kept under control by 2.5 mg of Ramipril which I will take for the rest of my life. Greatnan

A: There is some evidence that keeping mentally and physically active, keeping vascular risk-factors (such as raised blood pressure, raised blood cholesterol and diabetes) under control, drinking alcohol in moderation and keeping your weight down can prevent the onset of dementia. The adage, ‘what’s good for your heart is good for your head’ is true here.

For a person with established dementia, the mere fact of doing brain puzzles will not reverse the condition but it can make people feel better to remain mentally active and mentally-stimulated. It sounds as if the activities that you are engaging in are exactly the right ones.

Q: My mother stopped taking her blood pressure medication when she was 86 because she had some minor side effects - she did not consult her doctor. We think she might have had a series of small strokes as she became progressively more forgetful and whilst she was never diagnosed with Alzheimer's, after three years she was unable to follow a conversation or remember her family. She was never in pain, just constantly anxious and tearful.

When she was 90 she developed pneumonia but was given intensive treatment in the NHS hospital and survived for another year of misery. Our complaint was that she received too much when continuing to live was not in her best interests. Eventually, she refused food and then drinks. My brother would not give consent for her to be fed against her will. I would like to leave a living will with my family, instructing them to withhold consent for resuscitation or treatment if they believe it is not what I would wish - would this be honoured? Greatnan

A: I think what you are describing is what we call vascular dementia, which is where progressive forgetfulness gives rise to a person not being able to follow a conversation or remember people.

The issue you raise about end-of-life care is an important one. There is an excellent book called “Difficult Conversations” published by the National Council for Palliative Care, which describes expertly a number of issues about end-of-life care and anybody who is concerned about this area would benefit from reading it.

If you leave a living will, then with the support of your family and the clinical staff looking after a person towards the end of their life, then you can be reassured that your wishes should be honoured. In practice, doctors and nurses would generally speaking not go against the explicit wishes of a person and their family.

Q: Why dont these 'bodies' ask the people who look after those with mental health problems of all types how to care and look after their loved ones? My husband, the most gentle of men, became violent as his dementia progessed. I was told to call the police. How would someone mentally ill cope with being confronted by the police, and how would a policeman know how to deal with someone they had no knowledge of? luckyrose

A: I’m sorry to hear that your husband became violent as his dementia progressed. One of the issues that the Prime Minister’s Challenge on dementia will address is that of dementia-friendly communities and we know that making everybody aware of the importance of dementia and the symptoms of dementia will improve the response to someone who is distressed as a result of their condition.

You are quite right that you know your husband best and good practice should always be to involve the carer in planning the best quality support and treatment for a person with dementia.

You can find out more about the causes, symptoms, diagnosis and treatment of dementia here.