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This practical guide clearly shows each stage in the management of a patient with dementia. It covers the complex issues surrounding dementia such as spouses and families, access to appropriate care, legal and ethical concerns, planning for the future and "living well" and includes the decision making process on initiating treatment and guidance on how best to access the available services.
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Veröffentlichungsjahr: 2013
Table of Contents
Title page
Copyright page
About the authors
GP's Foreword by Dr Neil Arnott
Neuroscience Foreword by Professor Paul Francis
Acknowledgement
Introduction
Chapter 1: Diagnosing dementia in general practice
How to undertake the assessment for dementia in general practice
Typical presentations of dementia in general practice
The four main types of dementia
Chapter 2: Complex pictures of dementia
Dementia and physical disease
Dementia and psychological disease
Chapter 3: Initiating, monitoring and adjusting dementia treatments
What treatments are we talking about?
Which forms of dementia are suitable for treatment?
When should treatment be initiated?
How do we monitor if treatment is working?
The role of the Mini Mental State Examination (MMSE)
How to decide when to stop treatment
What guidance can GPs give about side effects?
Non-drug therapies in dementia
Chapter 4: Emergency management of dementia
What constitutes an emergency presentation of dementia?
Acute confusional state
A practical approach to the acute presentation
GP frustrations: best practice vs. worst practice
Chapter 5: Managing families
Renegotiating the marital contract
Complex generational dynamics
Different roles in patients with sequential marriages
What constitutes a partner?
The premature loss of inherited expertise
Chapter 6: Using the multidisciplinary team
What in old age psychiatric terms constitutes the multidisciplinary team?
Which staff are the key points of access for GPs in order of priority?
Which contact name can the GP give the family?
The charitable and voluntary sector
Indirect and direct payments for care at home
What do home care businesses offer?
The role of mobility assistance
The role of palliative care facilities
Chapter 7: Capacity, consent and deprivation of liberty
Capacity
Consent
Deprivation of liberty
Chapter 8: Choosing a residential home
Is there a difference between homes?
What support or activities should be intrinsic to a residential home?
Do patients have to switch homes when they develop dementia?
On Golden Pond: living communities
The role of warden-controlled accommodation
What to advise families about choosing a home
Chapter 9: Research, developments and media coverage
Genetics
Neuroimaging
Palliative treatments
Fundamental disease process modifying treatments
Science, serendipitous drug effects and dietary supplements
Physical treatments
Adjuvant palliative treatments
Assistive technology
Ethical and social problems associated with research into Alzheimer's disease
Chapter 10: GP questions answered
What is the quickest and most effective way for me to diagnose dementia in my surgery in 10 minutes?
What is the first drug of choice I should use when treating a patient with dementia?
What exactly is a memory clinic?
How do I access the Admiral Nurses?
Whom should I involve to help manage a patient with dementia who lives at home with an elderly spouse?
My patient's children, who are in their 30s, have asked me if dementia is inherited; what should I tell them?
My previously calm patient with dementia who lives in a care home is becoming disturbed and not settling. Can I start an antipsychotic drug and if so which one and when?
What is the significance of alcohol in patients with dementia?
My 76-year-old patient complains that he has memory problems but I find him to be very bright and able, and can't find anything significant. What should I do?
An insurance company has asked me if my 65-year-old patient with mild memory loss has dementia, what should I say?
How do I know if my 80-year-old patient has dementia or depression?
Can I stop a relative selling my patient's house if it is not in their interest?
Recommended further reading
Index
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Library of Congress Cataloging-in-Publication Data
Clarke, Nicholas, 1961–
How to manage dementia in general practice / Nicholas Clarke, Farine Clarke, Denzil Edwards.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-118-35225-0 (pbk.)
I. Clarke, Farine. II. Edwards, Denzil, 1954– III. Title.
[DNLM: 1. Dementia–diagnosis. 2. Dementia–therapy. 3. Early Diagnosis. 4. General Practice. WM 220]
RC521
616.8'3–dc23
2013014061
A catalogue record for this book is available from the British Library.
Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.
Cover design by Andy Meaden.
About the authors
Dr Nicholas Clarke MBBS MD MRCPsych has been a Consultant in Old Age Psychiatry since 1996, firstly in the NHS and now in independent practice across London and the southeast of England. He primarily treats patients with dementia, which is also his area of research, and in addition manages elderly patients with depression, grief and stroke disease. A large part of his work involves counselling and guiding the families of these patients and working closely with their GPs to ensure the best possible outcomes. Dr Clarke has been involved in collaborative neurochemistry research at the Wolfson Centre for Age-Related Diseases, Guy's Campus, for the last 20 years. His MD in neuroscience, which was obtained in 1999, is in amyloid protein in human brain disease. He is widely published in leading medical journals including The Lancet, The BMJ and the British Journal of Psychiatry. Dr Clarke qualified from St. George's Hospital Medical School, London University, in 1984 and gained his MRCPsych in 1990 and his dual certification in general adult and old age psychiatry in 1996. He lives in East Sussex with his wife, son and numerous animals.
Dr Farine Clarke qualified in medicine from St George's Hospital Medical School, London University, in 1986 and completed the St Helier Hospital GP Vocational Training Scheme. In 1990 she moved into medical publishing firstly as a journalist on Pulse newspaper, where she gained sufficient experience writing and editing for GPs to become Deputy Editor. In 1997 she became Editorial Director and then Managing Director at Haymarket Medical Publishing responsible for four magazines: GP, Medeconomics, MIMS and Fundholding. During this period Farine also presented the medical news on Sky News every week as well as co-presenting a daily medical TV show ‘Second Opinion’. She appeared on a number of other radio and TV programmes including Radio 4's ‘Today’ to report on clinical news and advances. She went on to be Managing Director of a range of specialist news stand magazines. Her first medical book, How to Manage your GP Practice, was published by Wiley-Blackwell in 2011.
Dr Denzil Edwards is an NHS Consultant in Old Age Psychiatry in Kent. He was an undergraduate at Charing Cross Hospital Medical School, London, and trained in psychiatry in the Bromley rotational training scheme and the Bethlem and Maudsley Hospitals in London. Dr Edwards has carried out research into treatments for resistant depressive illness, including lithium augmentation and transcranial magnetic stimulation. He is currently the consultant in a well established and experienced community mental health team for the elderly, which he helped to set up in 1996. This has a catchment elderly population of 17,000 and sees some 200 referrals a year for dementia.
GP's Foreword by Dr Neil Arnott
Dr Neil Arnott has been a GP Principal in Sevenoaks, Kent, since 1980 and an examiner of the Royal College of GPs since 1985. He is Chairman of both the Local Training Committee and the local Clinical Governance Committee.
I am very pleased to provide a foreword for this excellent and highly readable book on dementia in general practice. It is self-evident with an ageing population that the incidence of what can be a highly distressing illness, both for the individual, and, equally importantly, the families of those affected, continues to rise. It is somewhat of a Cinderella area of medicine, only relatively recently starting to receive the recognition and support it deserves. It also presents a challenge to those of us in general practice. This excellent book by authors who combine a first-class clinical specialism with ongoing research into the field can be highly recommended. It will appeal both to the younger GP starting their career, the GP in training, and the more mature practitioner who perhaps feels the newer challenges of managing these complex patients.
The book is extremely well written relying on the excellent ‘learning material’ of case examples that are familiar to trainers in their day-to-day supervision of registrars. Where appropriate, such as the chapter on consent and capacity, a more didactic approach helps to steer the practitioner through this potential minefield. In a similar way the chapter on drug and other therapies also gives good basic advice, whilst touching on some of the more complex areas of ongoing research. It also helps with some of the less clinically proven assumptions.
The layout and clearly defined chapters with brief summation at the end also help the reader with limited time, and perhaps a specific need or question. The chapter at the end, of commonly asked questions from GPs, gives us some excellent and practical tips.
I think it is probably true to say that this is a sadly under-represented area of medical education – although steps are being taken to change this – I know how very little, if any, formal training I received in this area of medicine.
As an examiner of the College of General Practitioners and a long-standing trainer I can also vouch for the validity of this book and its importance in helping to demystify this area of medicine.
I am sure that whoever reads this book will have a far better insight into this important and increasingly common condition, and I congratulate the authors on a significant and very useful contribution.
Dr Neil D Arnott
MBBS FRCGP
November 2012
Neuroscience Foreword by Professor Paul Francis
Professor Paul Francis PhD is Professor of Neurochemistry and Director of Brains for Dementia Research at the Wolfson Centre for Age-Related Diseases, King's College London. He has been at the forefront of dementia research since the 1970s and has published extensively in leading scientific journals, and is considered one of the world-wide experts today.
In my role as Professor of Neurochemistry at King's College London and Director of Brains for Dementia Research I have been involved in the research into dementia for over 30 years. During that period our understanding of the underlying neuroscience of diseases of the brain, both worldwide and in the UK, has increased at a phenomenal rate. In parallel to this our understanding of the possible causes, treatments and management of patients with dementia has also developed. Many doctors are aware of some of these developments, but often receive disjointed and piecemeal information, which can be difficult to assimilate into a busy practice. As such, I am increasingly asked by doctors if there is a book which translates the established and emerging research into practical applications, which they can use to improve the management of their patients with dementia. I am pleased to say that this is such a book.
From my extensive contacts with Old Age Psychiatrists I still have the sense that theirs remains a Cinderella discipline. This means that while there are many general psychiatrists who will see patients of all ages, there are still only a handful of specialists in the field who only see those over 65 on a daily basis. The expertise in dementia is, therefore, concentrated within a small group of doctors, many of whom are also involved in research. One of the authors, Dr Nicholas Clarke, did his MD in neuroscience in my laboratory at Guys and continues to collaborate with me. Dr Denzil Edwards also has considerable experience in the field of research in biological psychiatry. It is therefore vital that their knowledge is shared with others and disseminated more widely throughout the medical profession. In my discussions, particularly with medical and research colleagues, I came away with the strong sense that it is also important that everyone involved with the older adult adopts best practice. This will mean that no patient is simply labelled as ‘untreatable’ because they have dementia, or ‘forgetful because of their age’. In the UK today, any knowledge shortfalls in dementia management and their negative impact on care, need to be addressed as a matter of priority.
As a research scientist I am committed to finding better and safer treatments for people with dementia. While some of these may be years away it is in my opinion vital that we do what we can to provide the best available care pathways for those who currently have a diagnosis of dementia. This will have significant impact and will improve the quality of life for both people with dementia and their carers. How to Manage Dementia is by no means a sterile medical tome and throughout each chapter the authors share the tools which they use to manage their patients. Sentences beginning ‘in the authors’ experience’ are a frequent feature of this book, as the authors share their experience and observations with GPs in order to facilitate best practice.
GPs will recognise similarities with their own patients in many of the case histories which are used throughout the book as these are anonymised but real examples. And, if doctors read nothing else, I would advise them to read these histories. Each case brings to life many of the key features of dementia management which can be applied to a host of different patients and situations.
How to Manage Dementia covers all the key aspects of the disease, but most importantly it also offers GPs the tools to manage their patients to best effect. The text gives an organic explanation of the different types of dementia, while at the same time avoiding overwhelming detail about the molecular brain changes. At a practical level it gives GPs useful guidance on how to establish the correct diagnosis and its significance and importance to patients and families. The role of cognitive assessments in monitoring the course of the disease to ensure the correct interventions are instigated in a timely manner is also well explained. This book also helps doctors to differentiate dementia from other older adult brain diseases, including depression, which can be particularly challenging in this age group.
The chapter on dementia and memory drug treatments will be particularly useful for all doctors, as it not only explains how to select the most appropriate first-line therapy but also gives very useful advice on both the early recognition and correct intervention for specific side effects. Again it gives practical tips about how to engage carers and family members in the drug treatment process.
In my own experience working with the Alzheimer's Society and, in particular, their Research Network Volunteers, I recognise the need to dovetail medical management with a significant focus on furthering our understanding of dementia. This book explains not only the considerable support for patients and their families which the Alzheimer's Society provides but also details the role of the other charities and social services.
We all recognise the patchy nature of dementia services across the UK, which is, in part is explained by the Cinderella nature of this speciality as well as national funding issues. However this book arms GPs with the information necessary to insist that their patient priorities are met by third parties, be that a rapid assessment by the mental health services for older people team or suitable reminiscence therapy in a care home.
Finally the authors also acknowledge that GPs have limited time and a host of other pressures on that time, which is why the emphasis is on practical guidance. I envisage that everyone who reads this book will not only gain a greater understanding of the changes which take place in the older adult brain but also the wider implications for medical management of the ageing population.
Acknowledgement
The authors wish to acknowledge Martin Terrell, Partner at Thomson, Snell and Passmore Solicitors for his specialist knowledge in capacity and the Court of Protection, in Chapter 7.
Introduction
GPs are at the forefront of dementia management. They will be the first point of contact, not only for the patient, but also for concerned relatives, friends and neighbours. In addition, because GPs have the closest contacts within the community they are often the clinicians who are best placed to recognise early stages of disease.
Despite being the gatekeepers for dementia management, GPs sometimes find that ensuring that their patients receive the most appropriate treatment and support is not always straightforward. The reasons for this are multifactorial but include the fact that Old Age Psychiatry is a relatively young discipline, meaning that medical school training and postgraduate advice is less well established than it is in many other conditions. This also means that the depth of expertise in dementia is not readily available in the community. In addition, the rate, pace and stage of presentation and diagnosis are changing, as is the emphasis on available treatments. Furthermore, dementia support services are patchy and vary across the country, not least because government initiatives on dementia care seem to alter on an annual basis, but also because of the limits on resources.
This makes it difficult for GPs to always be aware of what services are available as well as how to access them. This book will explain the existing and emerging expertise on dementia diagnosis and management including the role of Admiral Nurses, community psychiatric nurses, specialist old age care managers and a new breed of managers in specialised dementia care homes, the latter of which tend to be private. It will also detail how GPs can work with the services available to decrease the pressure on their own workload while ensuring patients and their families obtain the best possible support. The authors work closely with GPs and recognise the need to provide them with a practical and clear guide to each stage in the management of a patient with dementia. As specialists in Old Age Psychiatry treating patients with dementia every day, Drs Nick Clarke and Denzil Edwards work at the front-line with patients, their families, carers and their legal deputies. They understand the issues involved and the limits on the services available but also appreciate that GPs wish to engage these to best effect. Most importantly, they know that GPs who refer patients to them and contact them for advice want concise, practical tools to deal with day-to-day patient management and also to pre-empt problems and resolve difficult issues as they arise.
Because of this, the overriding remit of this book is to provide practical and useful advice for GPs managing patients with dementia. It aims to arm GPs with the tools to manage every stage of the disease process from making a reliable diagnosis, through treatment options, to support for patients, families and carers.
Because services are inconsistent across the country many patients and families end up accessing a combination of support from the public and private sector and the book will offer a realistic account of the mixture of private and social support that may benefit patients and their carers.
Furthermore, because of the nature of the disease, the book will provide guidance on the legal aspects of dementia care including the role of the Mental Capacity Act, issues surrounding the deprivation of liberty, testamentary capacity and lasting power of attorney. Throughout the book, real GP and specialist case histories are used to illustrate important points. Personal details have been changed to protect anonymity, but the key features of these cases remain intact. In some instances the case histories may seem lengthy, and this is because dementia management often evolves as the picture changes over months and years. These authors work closely with their many GP colleagues and are aware of the limitation on their time; these cases demonstrate not only how GPs and specialists work together, but also that the degree of involvement by either doctor can vary. As with any condition which requires shared care, it is up to individual GPs to determine their own level of involvement.
The age groups affected by dementia means patients will often have coexisting and complex conditions in addition to their organic brain disease. For understandable reasons, this is an area where GPs frequently request assistance from specialists in Old Age Psychiatry and this book will help them to differentiate between conditions and also provide active management and treatment protocols.
GPs are fully aware that families and carers will often have their own strong views on Alzheimer's and other dementias and will glean information from a host of sources including the popular press, wider media and the Internet. Some of this information may indeed be useful, but much is incorrect, unproven and potentially misleading and dangerous. This book will help GPs to deal with common queries from families and will also offer broad details on the latest relevant research so that they have an up-to-date understanding of current thinking on disease management today and in the foreseeable future.
In conclusion the authors hope that this book will give GPs a complete, practical and up-to-date overview on Alzheimer's disease and dementia, so they can manage their patients, families and carers to best effect throughout every stage of the illness.
Chapter 1
Diagnosing dementia in general practice
This case of a married couple of similar age illustrates the difference between a brain injury with a static unchanging clinical picture afterwards, and the insidious creeping nature of dementia, in this case of Alzheimer's disease, which is typically dominated by memory loss and disorientation in the early stages and often later failure to identify familiar faces and places.
The authors recognise that GPs have limited time to assess patients for dementia, particularly as symptoms and signs are not always obvious and may fluctuate between visits to the surgery. The following details outline best practice, and also give GPs the room to bring patients and relatives back to their surgery for further assessment and interviews, in order to build a full picture of the problem.
As a first principle it is vital to create the right environment for the initial assessment. However well a GP knows the patient and family it's worth taking the history from the patient and the relatives separately. This is because if Alzheimer's is present, the patient will inevitably, albeit to a variable extent, give incomplete and error-strewn answers. Furthermore, in a joint interview the person giving the collateral history will often leave out important details and events in order to spare their loved one's feelings or out of ‘loyalty’. All too often when they are interviewed alone, they will admit a fear of verbal recriminations typified by ‘the argument in the car park’ should they report things the patient is unaware of. Relatives cite outright anger and hostility, the accusation of exaggerating the problem or ‘trying to put me in a home’ as reasons for withholding a full history when the patient is present.
The rules governing confidentiality between doctors, patients and relatives are well known and, in principle, permission to release information is required. This permission can be implicit by the patient bringing a spouse with them, or obtained through verbal or more formal written consent. A GP can receive and hold information about a patient in any form without their consent. This is useful when asking for emails and letters relating to the patient, even if the GP is not yet ‘allowed’ to talk to a spouse or relative. However, if a GP acknowledges that the patient is in their care to a third party, this does breach confidentiality if there is no evidence that this party knew about the GP's involvement.
The aim for the GP in the first instance is to listen to what the patient describes as ‘complaints’ and establish their order and duration, even if there doesn't appear to be any illness. Commonly the patient will be brought in and declare: ‘There's nothing wrong with me’, which makes the collateral history from the spouse very important.
It is important to establish what is meant by ‘memory loss’ and the exact nature, density and consistency of the memory complaint. Loss of distant memories is more likely in Alzheimer's disease or another profound physical impairment of brain function. Memory loss in the recent past by which we mean 5 months to 15 years or more is also more indicative of Alzheimer's disease. Newly formed memory loss within 5 minutes to 15 hours is suspicious of Alzheimer's disease but could also be due to depression or poor concentration. Immediate memory loss within 15 seconds is suspicious of depression or poor concentration if in isolation, but may be present in rarer cases of Alzheimer's disease showing a striking impairment of immediate memory. For example a patient's daughter leaves her mother's room in a residential home and the patient turns to the nurse and says, ‘Is my daughter ever going to visit?’
Because of the nature of the disease there are several clues in the history about which the patient may be unaware but which the relative can clearly describe.
The most typical clue is a change in intellectual function which is commonly described as, ‘I have to keep repeating myself’, ‘He/She doesn't seem to pay attention’, or ‘We can't talk anymore’.
Other symptoms include ‘following’ behaviour, anxiety about being left alone and the inability to perform tasks which once were easy.
Unusual symptoms may include a flip or inversion of personality, for example when the vicar pinches the bottom of every female nurse, hallucinations or daytime impaired level of consciousness. The latter is different from a nap after lunch from which the patient is difficult to rouse, and indicates rarer dementias.
Generally this is irrelevant or contains no illness of significance. However, a history of recurrent depression or bipolar disease should raise the suspicion of depressive pseudodementia. Schizophrenia has its own pattern of cognitive deficits that are not progressive or generalised and dementia is not more common in these patients. Past admissions for unsuccessful suicide attempts and alcoholism, with the accompanying risk of brain damage and later dementia, should be taken into account.
A simple neurological general enquiry into diplopia, paraesthesia, focal weakness, fits, fainting episodes or incontinence may indicate occult intracranial pathology. Past brain injury from trauma, anoxia, prolonged hypoglycaemia or status epilepticus also increases the risk of dementia.
Physical diseases which may mimic or exacerbate dementia include hypothyroidism, pernicious anaemia with missed treatment, poorly managed diabetes mellitus, high blood pressure, ischaemic heart disease, tobacco-related diseases and excess alcohol consumption, either in the past or present.
Dementia does not typically run in families. However any multigenerational history of the disease occurring in up to 50% of family members, which presents under the age of 60, should raise the possibility of familial aetiology.
Sporadic history, as in ‘my mother had dementia in her eighties’ is irrelevant to the diagnosis.
However, a family history of dementia-related conditions, such as cardiovascular disease, may be relevant.
The length of time a patient has lived in their house, the amount of help around and how close their immediate family are, are all of major importance not just in making the diagnosis but also in the prognosis and management. This is particularly true for the first two thirds, or 6–8 years, of the course of the illness. It is worth establishing who does the practical activities including shopping, cooking, laundry, and the bills and, if this used to be the patient, when and why that stopped.
Understanding the patient's premorbid intellect helps to put symptoms into the context of their ability. Their age at leaving school, academic performance between the ages of 11 and 15 or 18 to include exams such as the school certificate, matriculation, O and A levels and their ‘favourite’ subjects together with details of their further education are all relevant. A full career history, including national service, part-time work, promotions and awards, also informs the assessment. For women who may not have had the same educational opportunities, a useful assessment includes evidence of management skills in organisations such as the Women's Institute or quasi-professional roles in, for example, the Citizen's Advice Bureau or evidence of mathematical ability with prizes for puzzles.
A professor of engineering who can't do The Times crossword as fast as he used to is reporting an objective and subjective but significant finding. In contrast, a patient who struggles to spell a five-letter word in reverse may admit they were ‘never any good at spelling’ or ‘missed a lot of school’, which can be shorthand for illiteracy and any test should take this into account.
The temporal gradient is a useful tool to investigate likely types of dementia and brain damage from the personal history. This involves looking far back into the patient's personal memory until they remember normally. For example, a patient aged 75 may not remember his final job or the celebration of a 40th wedding anniversary one decade before the interview, but will remember the places where he played golf on holiday in his fifties or earlier. As the disease progresses the memory deficit reaches further and further back into his longest surviving memories, ultimately destroying recollection of the name of his secondary school or the place where he grew up. The temporal gradient is long and shallow in Alzheimer's disease but it is steep in alcohol-related disease or brain injury.
While conducting the psychiatric examination it is worth noting that insight is present in early dementia. This becomes eroded to varying degrees in terms of both speech and depth depending on the individual and the disease. Eventually insight is lost, although in some subtypes of frontal lobe disease it may be preserved for a relatively long period.
The psychiatric examination involves assessing the following parameters.
Appearance and behaviour: is the patient dishevelled, unkempt or odorous?Speech: for loss of fluency or disruptions in grammar which might suggest semantic dementia.Observed mood: depression can complicate the differential diagnosis. Unusual anger or irritability might raise the possibility of a frontal lobe dementia.Subjective mood: the patient may not always appear depressed but will describe mood change.Ideation: secondary delusions often occur with hallucinations and also delusions of misidentification in some demented patients. ‘It looks like my house but I know it isn't.’Perception: it is worth enquiring about visual hallucinations and to note if the patient looks hallucinated.Cognitive testing can be carried out using a number of methods. The Mini Mental State Examination (MMSE) has moved from solely a research tool via specialist psychiatrist teams to increasing use by GPs. This and other tests are detailed in Box 1.1.
Cognitive testing can be carried out using a number of methods.
The Abbreviated Mental Test (Hodkinson 1972) is commonly used in general practice and in the wards of general hospitals. It serves well enough as a brief screening test.The Mini Mental State Examination (Folstein et al.