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Dementia-Friendly
Dentistry
Good Practice GuidelinesDementia-Friendly
Dentistry
Good Practice Guidelines
Editor: Paul Batchelor
BDS, DDPH(RCS) MCDH, MPH,
PhD, FFDGP(UK), FDS, FFPH.
Fellow and Vice Dean, FGDP(UK)
and Honorary Senior Lecturer,
University College London (UCL).
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) iPublished by
Faculty of General Dental Practice (UK)
London
Email: fgdp@fgdp.org.uk
Website: www.fgdp.org.uk
Dementia-Friendly
Dentistry
ISBN: 978-1-5272-1390-6
First edition published 2017
© Faculty of General Dental Practice (UK) 2017
All rights reserved. No part of this publication may be reproduced,
stored in a retrieval system or transmitted in any form or by any means,
electronic, mechanical, photocopied, recorded or otherwise, without the
prior written permission of the Faculty of General Dental Practice (UK).
While every effort has been made to ensure the accuracy of the
information contained in this publication, no guarantee can be given
that all errors and omissions have been excluded. The Faculty of General
Dental Practice (UK) can accept no responsibility for loss occasioned
to any person acting or refraining from action as a result of material
in this publication.
All commerical product names carry the trademark
of their manufacturer.
Editorial production: Amy Brewerton, Jamie Woodward
Design: TU ink
Print management: TU ink
ii Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)contents
forEwOrd vii
ACKNOWLEDGEMENTS ix
Preface xi
1. PRINCIPLES BEHIND CARE MANAGEMENT 1
1.1 Introduction 1
1.2 Diagnosis of dementia 2
1.2.1 The importance of a diagnosis 2
1.2.2 The progressive development of dementia 3
1.2.2.1 Before dementia becomes apparent 3
1.2.2.2 Dementia as a progressive condition 4
1.2.2.3 Rate of progression 5
1.2.2.4 The staged development of dementia 6
1.2.2.4.1 Early (‘mild’) stage 6
1.2.2.4.2 Middle (‘moderate’) stage 7
1.2.2.4.3 Late (‘severe’) stage 8
1.3 Key points in the diagnosis 9
1.3.1 Signs and symptoms of dementia 9
1.3.2 Associative medical conditions 10
1.3.2.1 Cardiovascular factors 10
1.3.2.2 Depression 11
1.3.2.3 Other conditions 11
1.3.2.4 Lifestyle factors 11
1.4 Summary 12
1.5 References and resources 13
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) iiic o n t e n t s ( c o n t i n ued )
2 PRINCIPLES OF CARE PROVISION 15
2.1 General considerations 15
2.1.1 Pre-examination 16
2.1.1.1 Personal information 17
2.1.1.2 Medical history 17
2.1.1.3 Socio-behavioural history 18
2.1.1.4 Dental history 19
2.1.1.5 Communication 19
2.1.2 Early stages of dementia 24
2.1.3 Later stages of dementia 25
2.2 Management of dementia patients 25
2.3 Practice surgery design 26
2.4 Provision of care outside dental practices 27
2.4.1 Care homes 27
2.4.2 Domiciliary care 27
2.5 Treatment planning 29
2.5.1 Drugs and dental problems 29
2.5.2 Consent and capacity 30
2.6 Dementia and dental conditions 31
2.6.1 Bruxism 31
2.6.2 Chewing and swallowing 32
2.6.3 Denture wearing 32
2.6.4 Denture marking 33
2.7 Summary 34
2.8 References and resources 35
iv Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)c o n t e n t s ( c o n t i n ued )
3 IMPLICATIONS FOR DENTAL PROFESSIONALS 39
3.1 General implications 39
3.2 How to raise concerns and approach the subject of dementia 40
3.3 Potential indicators of dental problems in people 41
living with dementia
3.4 Medication 42
3.4.1 What are the main drugs used in the management of dementia? 42
3.5 Types of dental treatment 44
3.5.1 Early stages of dementia 44
3.5.2 Middle stages of dementia 45
3.5.3 Later stages of dementia 46
3.6 Additional issues 47
3.7 Key standards 47
3.7.1 Medical history 48
3.7.2 Side effects 49
3.7.3 Planning treatment 49
3.7.4 Consent and capacity 51
3.7.5 Safeguarding 54
3.8 Summary 57
3.9 References and resources 57
4 SUPPORT MATERIALS AND FURTHER READING 59
4.1 Introduction 59
4.2 Staff training and awareness 59
4.3 Local support networks 60
4.4 Patient information leaflets 61
4.5 Self help 61
4.6 References and resources 61
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) vc o n t e n t s ( c o n t i n ued ) Appendices 62 A1 Selected Definitions 62 A2 Abbey Pain Scale 63 A3 Communication Visual Aid 65 A4 Adapted handle tooth-brushing aids 66 A5 Technique for assisted brushing 67 A6 Clinical Dementia Rating (CDR) 68 vi Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
ForEwOrd The core function of the Faculty of General Dental Practice (UK) is to raise the standards of care delivered to patients. To help achieve this, the FGDP(UK) engages with a number of bodies where a multidisciplinary approach may help in designing care provision and where the profession and the public may benefit from guidance on how best care can be assured. One of the tasks facing all care professionals surrounds how best to address conditions that arise due to the evolving epidemiology of diseases. Indeed, the successes of previous care modalities can themselves create new challenges that, when combined with other factors, mean the management of patients may be more complex when compared to previous cohorts of patients. With the welcome increase in life expectancy, some conditions take on a growing importance. Dementia is now one of the most common neurological disorders in people aged 65 or older, although a growing number of cases are identified at earlier ages. Estimates suggest that the prevalence in the UK population is about 5%, with an annual incidence of 2%. Over 850,000 people live with dementia in the UK presently, a figure predicted to rise to over a million by 2021. Dementia leads to a continual decline in all aspects of an individual’s ability to function, along with increased levels of anxiety and depression. There is a need to improve overall care for people with dementia, emphasised by governments in the UK and many other countries. The aim of the present document is to provide the dental profession and their teams with guidance on how they can help ensure the best contribution to individuals living with dementia. Oral health care for individuals with dementia is one aspect where improvements can make a substantial difference to an individual’s quality of life. To reach high standards of oral health, a relationship between the individual and those Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) vii
tasked with care provision is required. Furthermore, the progressive nature of dementia means that these responsibilities may change as the disease impacts on the ability of individuals to contribute to the maintenance of their health through self-care. The state of oral tissues impacts not only on an individual’s oral health but also on their quality of life in general. Negative developments in eating habits, socialising and general wellbeing all arise through poor oral health. The dental profession can not only play a major role in reducing morbidities associated with poor oral health, but help ensure the achievement of such goals. However, this requires the development of guidance to help achieve this work. This publication, developed to help mark our 25th anniversary as the academic home for primary dental care, is an adjunct to the current documents; it aims specifically to help support the provision of care to patients living with dementia. Mick Horton Dean, Faculty of General Dental Practice (UK) – 2017 viii Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
Ac K NOWL E D G E M E NT S
Working group
Paul Batchelor (Editor)
Emma Bould
Blánaid Daly
Richard Emms
Linda Hillman
Bryan Harvey
John Milne
With special thanks to the Alzheimer’s Society
Acknowledgements
The Faculty of General Dental Practice (UK) would also like to express its
thanks to the following organisations and individuals for their review,
comments and other support during the development of this document:
British Dental Association
British Geriatrics Society
British Society of Gerodontology
Care England
Care Quality Commission
The Dental Defence Union
Eastman Dental Hospital Special Care Dental Department
The Flintshire Dementia Dental Care Pathway Development Team
Health Education England
Health Education England Thames Valley and Wessex
Healthwatch England
London Dementia Clinical Network
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) ixThe Medical and Dental Defence Union of Scotland
NHS Cheshire and Merseyside Local Dental Network
NHS Cheshire and Merseyside Special Care Dentistry Managed Clinical Network
NHS Education Scotland
NHS South Central Special Care and Paediatric Dentistry Managed Clinical Network
Oral Health Foundation
Public Health England
Society of British Dental Nurses
Welsh Government
David Arnold Jonathan Gardam Stephen Lambert-Humble
Shirley Bain Lesley Gough John L Makin
Andrew Boaden Daniel Harwood Jose Marshall
Sarah Buckingham Rowan Harwood Susan Nelson
Dominic Carter Roger Hollins Rebecca Owen-Evans
Hana Cho Mick Horton Abhi Pal
Janet Clarke Lisa Howells Helen Quinn
Laura Cook Rachel Hutchings Michele Seager
Aubrey Craig Charlotte Jeavons Rowenna Spencer
Ian Davies-Abbott Quentin Jones Pearse Stinson
Onkar Dhanoya Vicki Jones Joe Sullivan
Fiona Ellwood Katy Kerr Patricia Thomson
Jonathan Farmer Navdeep Kumar Devika Vadher
x Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)PREFACe To help the dental practitioner ensure standards, the present document is divided into a number of sections. For those that are dental-specific, standards of care are described to help ensure the qualities of care can be achieved. These standards have used published material and existing guidance that cover dementia care provision and the guidance material has adopted the ‘ABC’ approach of existing FGDP(UK) published guidelines. We have categorised recommendations as A (aspirational), B (basic) and C (conditional upon circumstances). No practitioner should be censured for failing to meet A grade recommendations. Nor does a failure to meet B or C grade recommendations necessarily imply negligence on the part of the clinician. A clinician must assess each patient on their merits, in the circumstances in which they find themselves, and with the evidence available to them they must use their clinical judgement to settle on a course of action. It is possible to fail to adhere to our recommendations and still be acting in a patient’s best interests. However, we would recommend that when taking a course of action other than that recommended in these guidelines, a clinician should be able to justify their reasoning and record it in the patient’s records. The present document is divided into four main sections. In the first, background material dealing with the principles of care management, the epidemiology of dementia and its diagnosis are provided. The second section covers important implications of dental care provision for people who are living with dementia. It is important to remember that care plans may need to be adapted to be appropriate to meet the needs of a patient living with dementia, Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) xi
and so may look very different when compared to the general population. This
section, therefore, provides background knowledge on dementia and management,
and the implications for dental practice.
The third section details standards in five areas, which have been identified as
specific to dementia care, to help dental care providers ensure the qualities of
care. It also provides supporting material for dental professionals and references.
Three main themes are presented.
• Management: the identification of patients; issues surrounding competence
and referrals; communication with patients and/or their carers; communication
between other health personnel; and the issues of consent and capacity.
• Clinical care: history taking; treatment planning; care delivery;
and prescribing.
• Site considerations: the practice and/or surgery; care homes;
and domiciliary care.
Finally, the fourth section contains material on where to find educational
programmes, local support networks including information sharing with health
professionals and samples of patient information sheets.
xii Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)1 P R I NC I P L E S B E H I ND C A R E M A N A G E M E NT 1.1 Introduction Understanding the reality of the condition and the complex ways dementia affects each individual is a key element to improving standards of care for people living with dementia. As a profession that advises regular attendance for care, dental professionals are well-placed to play a major role in monitoring and helping ensure that high standards of care management exist. One in three people over 65 will die with dementia, but despite its prevalence, the condition remains under-diagnosed; fewer than half of people with dementia in England receive a formal diagnosis.1 Improvements in rates of diagnosis have been observed, although considerable variation exists across the UK.2 Such disparities mean that many people are unaware of steps they can take to manage their condition, including planning for the future and how to access support and care. Several factors have led to this low diagnosis rate, including historical lack of diagnosis of dementia, lack of understanding by the public and healthcare professionals, and an attitude among some healthcare professionals that there is little benefit to diagnosing dementia. Alongside low diagnosis rates, there exists little public understanding of the nature, prevalence and symptoms of dementia, which in turn leads to misconceptions that perpetuate the stigma associated with the condition.3 People with dementia are often isolated, or withdraw, because of stigma and fear of negative reactions from neighbours, their families and the wider community to their behavioural and psychological symptoms. Stigma may prevent people acknowledging the symptoms of dementia and obtaining the help they need to live the life they want to lead. People with dementia and their carers should be treated with dignity and receive Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 1
care and support that is based on individual need, rather than assumptions about the condition.4 Dementia is perceived differently in different cultures, faiths and communities. This includes dementia being considered as a normal part of ageing, as a mental illness, or being linked to supernatural or spiritual beliefs. People from black, Asian and minority ethnic (BAME) backgrounds face significant barriers when accessing support.5 A lack of culturally-sensitive dementia services may impact families when available support does not meet cultural or religious needs. Such shortcomings need to be considered when supporting patients and their families. Good oral health is important for health and wellbeing. As dementia is a progressive condition, it is important to establish (if one is not in place already) a dental care programme at – or soon after – diagnosis, to help establish the principle of continuity of care. Maintaining oral health brings benefits in terms of self-esteem, dignity, social integration and nutrition. Poor oral health can lead to pain, which the individual may have difficulty articulating, and tooth loss. It can negatively affect self-esteem and the ability to eat, laugh and smile. Both pain and infection can worsen the confusion associated with dementia. 1.2 Diagnosis of dementia 1.2.1 The importance of a diagnosis A diagnosis enables access to treatments and support, acting as a catalyst for discussions about how to live with dementia, including power of attorney (for finance and health and wellbeing), maintaining health, mobility and advanced care planning while the person can still actively participate. There are numerous barriers to a diagnosis of dementia, which are steadily being broken down, but two that remain persistent include the stigma attached to dementia, and the misplaced perception that it is a natural and inevitable part of ageing. In addition, as no cure for dementia currently exists and only a few treatments with limited effectiveness for Alzheimer’s 2 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
disease (the most common form of dementia) are available, some clinicians are led to question the value of a diagnosis. Such opinions ignore the importance of support and information in helping people to feel more in control. 1.2.2 The progressive development of dementia The term dementia covers a range of neurological conditions, all of which are progressive. The most common types of dementia are: Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and fronto-temporal dementia.6 All types impact on a person’s ability to remember, understand, communicate and reason, and the abilities of an individual with dementia will gradually decline. How quickly the condition progresses will depend on the individual; each person is unique and experiences dementia in their own way, and indeed may demonstrate more than one type of dementia. Common forms of dementia and their incidence Alzheimer’s disease 62% Vascular dementia 17% Mixed dementia 10% Dementia with Lewy bodies 4% Fronto-temporal dementia 2% Parkinson’s dementia 2% Other 3% Viewing dementia as a series of stages can be a useful way to understand the illness, although such an approach only provides a rough guide to the progress of the condition. 1.2.2.1 Before dementia becomes apparent There is strong evidence that, by the time most people develop any symptoms of dementia, the underlying disease has been causing damage to the brain for a considerable time.7 During this ‘pre-symptomatic’ period, tests that explore the brain chemistry, function and structure have been developed and may suggest future Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 3
treatment modalities, including medication, which could slow down or prevent progression before the disease is fully established. Over time, changes in the brain will begin to cause mild symptoms, but do not enable a diagnosis of dementia to be made with a high level of accuracy. Subtle problems in areas such as memory, reasoning, planning or judgement may cause difficulties with more demanding tasks (such as preparing a meal) but do not significantly affect daily life. A person at this stage may be given a diagnosis of mild cognitive impairment (MCI). About 10-15% of people with this diagnosis will go on to develop dementia each year. MCI may be used as a ‘flag’ to dental teams to think about starting the planning process for treatment and prevention going forward. Medical history-taking could include asking patients directly about any memory issues they may have, and specifically about the MCI diagnosis. While dementia is not the only cause of memory issues, management pathways may be similar. 1.2.2.2 Dementia as a progressive condition A common feature of all dementia lies in the structure and chemistry of the brain becoming increasingly damaged over time. The person’s ability to remember, understand, reason and communicate will gradually decline. As dementia worsens, the person will need increased support with daily living. Their behaviour and mood will also change. Health professionals often use indices to measure these changes. At different times they may assess a person’s mental ability (for example with a ‘Mini Mental State Examination’),8 daily living skills (such as dressing or managing medication), behaviours, overall functioning, or quality of life. Some of these scales were developed specifically for Alzheimer’s disease and work better for that than for other types of dementia. Assessment of the extent of an individual’s dementia should take account of the data from such scales, but equally take a broader view of the person, including their capabilities and needs. 4 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
1.2.2.3 Rate of progression There is evidence that some types of dementia can progress at different rates or more aggressively, but experts are unsure whether this is conclusive. Every person’s experience is different and there can be a huge amount of variability in people’s response to the disease. Difficulties with diagnosis may mean that people are diagnosed later, making their progression seem faster.8 A wide range of factors influence the progression of dementia in an individual. People who develop symptoms before the age of 65 often have a faster rate of progression, and evidence suggests that there may be a genetic link. Overall physical health also seems to be a factor. People with a dementia diagnosis who also have poorly-controlled heart disease or diabetes, those who have had several strokes, or those who have repeated infections are all likely to show a faster rate of progression. On the positive side, evidence shows that keeping active and involved in social activities can help a person with dementia retain their existing abilities for longer. Regular physical exercise in particular seems to slow the rate of decline. Some of these factors affect the underlying pathological processes of the brain, while others simply help address symptoms. Those supporting someone with dementia should encourage the individual to stay active – physically, mentally and socially. A person with dementia should also try to eat healthily, get enough sleep, take medications as advised and not smoke or drink too much alcohol. It is also important for the person to follow appropriate health interventions such as assessments for teeth/dentures, eyes, ears and feet as advised, and recommended seasonal vaccination programmes, e.g. influenza and pneumonia. The advice is equally valid for a carer. Sudden changes in a person’s abilities or behaviour could indicate a physical or psychological health problem or an infection. Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 5
1.2.2.4 The staged development of dementia
Although by necessity somewhat artificial, it can be useful to view the course that
dementia follows as having three stages in development; early, middle and late.
Each type of dementia tends to have a particular early set of symptoms, arising from
the differing parts of the brain initially affected. Over time, as damage spreads to
more areas of the brain, the symptoms of the different types tend to become similar.
Indeed, by the later stages, the individual will need a high level of care, irrespective
of the type of dementia.
Such a framework helps provide an understanding of the changes that are occurring,
albeit in very general terms. It is important to consider:
• Some symptoms may appear earlier or later than indicated here, in a different
order, or not at all.
• The stages may overlap – the person may need help with one task, but may be
able to manage another activity on their own.
• Some symptoms, such as irritability, may appear at one stage and then vanish,
while others, such as memory loss, will worsen over time.
The way a person experiences dementia will depend on many factors. These include
their physical make-up, other illnesses they may have, their emotional resilience,
the medication they take and the support they can rely on.
1.2.2.4.1 Early (‘mild’) stage
Dementia usually begins with very minor changes in the person’s abilities or
behaviour. At the time, such signs can often be mistakenly attributed to stress or
bereavement or, in older people, to the normal process of ageing. It is often only later
on that it becomes apparent these signs were probably the beginnings of dementia.
Loss of memory of recent events is a common early symptom. The person will have
difficulty recalling things that happened recently, in addition to problems with
6 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)learning new information. Someone with dementia may:
• Mislay items around the house.
• Forget recent conversations or events.
• Struggle to find the right word or lose the thread of what is being
said during conversation.
• Become slower at grasping new processes or concepts and unwilling
to try out new things.
• Become confused, disorientated or lose track of the day or date.
• Show poor judgement, or find it harder to plan or make decisions.
• Have problems judging distance or seeing objects in three dimensions
(for example when navigating stairs or parking the car).
• Lose interest in other people or activities.
In the early stages of dementia, retaining usual activities where possible can help
maintain independence. It helps the individual retain their sense of identity and
self-worth if they are given the chance to do things for themselves (with support
if necessary). Focus should be on what the person can do as opposed to what
they cannot, and on exploring how things can be achieved in a different way.
The person may also become anxious, irritable or depressed. They may experience
distress over their failure to manage tasks and may need reassurance. In such cases,
talking and giving them emotional support is important. Disclosure by a patient
or relative regarding their dementia status needs to be handled sensitively.
1.2.2.4.2 Middle (‘moderate’) stage
As dementia progresses, the changes become more marked. The person will need
more support to help them manage their day-to-day life. They may need frequent
reminders or help to eat, wash, dress and use the toilet. They are likely to become
increasingly forgetful – particularly with names of objects and people – and may
sometimes repeat the same question or sentence. They may also fail to recognise
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 7people or confuse them with others. At this stage, the individual could put himself/
herself or others at risk through their forgetfulness, for example by not lighting the
gas on the cooker or forgetting to take medication.
Some people at this stage may become very easily upset, angry or aggressive –
perhaps because they are feeling frustrated at not being understood or because
they misinterpret what is happening. They may lose their confidence and need
a lot more support or reassurance. Other symptoms may include:
• Becoming confused about where they are, or wandering and becoming lost.
• Muddling up time and getting up at night because they are confusing
night and day.
• Behaving in ways that may seem unusual, such as going outside in their
nightclothes, becoming very agitated or unknowingly behaving in socially
inappropriate ways.
• Experiencing difficulty with perception and, in some cases, having delusions
(strongly believing things that are not true) or, less often, hallucinations
(usually, seeing things that are not really there).
Changes in behaviour tend to be most common from the middle stage of dementia
onwards, and are one of the most challenging aspects of dementia for carers.
1.2.2.4.3 Late (‘severe’) stage
At this stage, the person with dementia will need even more help and will gradually
become totally dependent on others for care. Loss of memory may become very
pronounced, with the person unable to recognise familiar objects, surroundings or
even people closest to them, although there may be sudden flashes of recognition.
The person may also become increasingly weak. They may start to shuffle or
walk unsteadily, eventually spending more time in bed or a wheelchair. Other
symptoms may include:
8 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)• Difficulty eating and sometimes swallowing (dysphagia).
• Difficulty communicating.
• Considerable weight loss, loss of muscle bulk (sarcopenia) and muscle
weakness (although some people may overeat and put on weight).
• Incontinence – losing control of their bladder and sometimes bowels.
• Gradual loss of speech, though the person may repeat a few words or
cry out from time to time.
• Fatigue at relatively low levels of activity, associated with sarcopenia, means
that the person is less likely to be able to adhere to oral hygiene frequency.
The individual may become restless, sometimes seeming to be searching for someone
or something. They may become distressed or aggressive, especially if they feel
threatened in some way. Angry outbursts may occur during close personal care,
usually because the person does not understand what is happening. Those caring for
the person should try not to take this personally – the person is not being deliberately
aggressive. It is also important to consider that the person may be experiencing pain
that they cannot express verbally. Painkillers can often help in such circumstances, but
clinicians should also investigate the cause and address this appropriately if possible.
During the later stages of dementia, most people will become increasingly frail due to
the progression of the illness. They will also gradually become dependent on others for
all of their care. Knowing what to expect can help everyone to prepare. It can enable the
person with dementia to think about the kind of treatment and care they might want,
and allows them to write an informed advance decision (which could be known either as
a Living Will or an Advance Directive) before they reach this stage so they can have input
into their future care. It also allows carers and family to think about these aspects too.
1.3 KEY POINTS IN THE DIAGNOSIS
1.3.1 Signs and symptoms of dementia
The impact of dementia on an individual is unique, with different types of dementia
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 9affecting people differently, especially in the early stages. How others respond to the
person, and how supportive or enabling the person’s surroundings are, also greatly
affect how well someone can live with dementia.
Dementia is progressive, which means the symptoms gradually get worse over time.
How quickly dementia progresses will vary greatly from person to person.
1.3.2 Associative medical conditions
There are a number of associative conditions that lead to an increased risk of
dementia that the dental care provider should consider if dementia is undiagnosed.
These are covered below.
1.3.2.1 Cardiovascular factors
There is very strong evidence cardiovascular risk factors that damage the heart,
arteries or blood circulation all significantly affect a person’s chances of developing
dementia.9 The main conditions linked to dementia are:
• Type 2 diabetes – in mid – or later life.
• High blood pressure – in mid-life.
• High total blood cholesterol levels – in mid-life.
• Obesity – in mid-life.
These conditions are avoidable risk factors for dementia but also for cardiovascular
diseases (stroke and heart disease, such as abnormal heart rhythm). Having cardiovascular
disease or Type 2 diabetes can double an individual’s risk of developing dementia.
These cardiovascular conditions are most strongly linked to vascular dementia. This
is because vascular dementia is caused by problems with blood supply to the brain.
Research10 suggests that many people with dementia have mixed dementia, or
Alzheimer’s disease with some vascular damage in the brain. The cardiovascular risk
factors and diseases should be considered as risk factors for mixed dementia and not
10 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)just vascular dementia. In some cases (such as in diabetes or high mid-life cholesterol) they are known risk factors for Alzheimer’s disease as well. 1.3.2.2 Depression People who have had periods of depression – whether in mid-life or later life – also seem to have increased rates of dementia.9 Whether depression is a risk factor that in part causes dementia is not clear, and the answer probably differs with age. There is some evidence that depression in middle age does lead to a higher dementia risk in older age. In contrast, depression in later life (when a person is in their 60s or older) may be an early symptom of dementia rather than a risk factor for it. 1.3.2.3 Other conditions Other medical conditions that can increase a person’s chances of developing dementia include Parkinson’s disease and HIV. Down’s syndrome and other learning disabilities also increase a person’s risk of dementia. Patients who suffer from multiple sclerosis can experience cognitive impairment or cognitive dysfunction similar to dementias. A number of further conditions have been linked to dementia in some studies, but evidence is currently weak. These conditions include chronic kidney disease, hearing loss, anxiety and sleep apnoea. There is also growing evidence that loneliness and social isolation may increase someone’s risk of dementia. In many of these cases, more research is needed to show the strength and ‘direction’ of this link (i.e. what causes what).9 1.3.2.4 Lifestyle factors There is overwhelming evidence that lifestyle factors influence the risk of developing dementia, but public awareness of this is low.11 Studies of large groups show that dementia risk is lowest in people who have several healthy behaviours in mid-life. These behaviours include regular physical exercise, not smoking, drinking alcohol only in moderation (if at all), and maintaining a healthy diet and weight. The dementia risk is lowest in people who adopt three or more of these behaviours, not just one or two. Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 11
1.4 SUMMARY The term dementia refers to a number of conditions with similar clinical manifestations. The epidemiology of dementia suggests that about 5% of the population live with dementia, and that this figure will grow as the age profile of the population changes with increases in life expectancy. Dementia impacts on a person’s ability to remember, understand, communicate and reason, and an individual’s ability will gradually decline. How quickly the condition progresses will depend on the individual. A wide range of factors influence the progression rate of dementia – including age – with those developing symptoms before the age of 65 experiencing a more rapid decline. Evidence also exists of a genetic link. Overall physical health is another factor; people with poorly-controlled heart conditions or diabetes, those who have had several strokes or those who have repeated infections are all likely to show faster deterioration. The dental team may be the first healthcare professionals (HCPs) to notice a change in a person’s abilities and behaviours. Good oral health is important for health and wellbeing. As dementia is a progressive condition, it is important to establish or reinforce a dental care programme as soon as possible upon diagnosis to assist with continuity of care. Maintaining oral health brings benefits in terms of self-esteem, dignity, social integration and nutrition. A useful guide for the dental team to help understand the issues surrounding the dementias and their impact is available on the Guy’s and St Thomas’ NHS Foundation Trust website entitled ‘Barbara’s story.’12 12 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
1.5 REFERENCES AND RESOURCES
1. McNamara G, Millwood J, Rooney YM & Bennett K. Forget me not – the role of the general dental
practitioner in dementia awareness. BDJ 2014;217:245–248.
2. NHS Digital Recorded dementia diagnoses. April 2017. Available at: www.content.digital.nhs.uk/
catalogue/PUB24036.
3. Cahill S, Pierce M, Werner P, Darley A, Bobersky A. A systematic review of the public’s
knowledge and understanding of Alzheimer’s disease and dementia. Alzheimer Dis Assoc Disord
2015;29(3):255-75.
4. Alzheimer’s Society. Right to Know campaign – diagnosis and support. Available at: www.
alzheimers.org.uk/info/20016/campaigns/204/right_to_know_campaign_-_diagnosis_and_support.
5. Moriarty J, Sharif N, Robinson J. SCIE Research briefing 35: Black and Minority Ethnic People with
Dementia and their Access to Support and Services. SCIE; 2011. Available at: www.scie.org.uk/
publications/briefings/briefing35.
6. Alzheimer’s Society. Exercise and Physical Activity. Available at: www.alzheimers.org.uk/info/20029/
daily_living/15/exercise_and_physical_activity/2.
7. Reiman EM, et al. Brain imaging and fluid biomarker analysis in young adults at genetic risk for
autosomal dominant Alzheimer’s disease in the presenilin 1 E280A kindred: a case-control study.
The Lancet Neurology 2012;11(12):1048-1056.
8. Alzheimer’s Society. The MMSE test: Mini Mental State Examination. Available at: www.alzheimers.
org.uk/info/20071/diagnosis/97/the_mmse_test.
9. Alzheimer’s Society. Risk Factors for dementia: Factsheet 450. 2016. Available at: www.alzheimers.
org.uk/download/downloads/id/1770/factsheet_risk_factors_for_dementia.pdf.
10. Bennett D. Public health importance of vascular dementia and Alzheimer’s disease with
cerebrovascular disease. International Journal of Clinical Practice Supp 2001(120):41–48.
11. Public Health England. Public unaware of the factors that increase the risk of dementia. 2016.
Available at: www.gov.uk/government/news/public-unaware-of-the-factors-that-increase-the-risk-
of-dementia.
12. Guy’s and St Thomas’ NHS Foundation Trust. Barbara’s Story. Available at: www.guysandstthomas.
nhs.uk/education-and-training/staff-training/Barbaras-story.aspx.
Resources and further reading
Alzheimer’s Society. Dementia 2013: The hidden voice of loneliness. Available at: www.alzheimers.
org.uk/download/downloads/id/1677/dementia_2013_the_hidden_voice_of_loneliness.pdf.
Alzheimer’s Society. Building dementia-friendly communities – a priority for everyone. 2014.
Available at: www.alzheimers.org.uk/download/downloads/id/1918/building_dementia_friendly_
communities_a_priority_for_eveyone_-_executive_summary.pdf.
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 13Chen J-H, Kun-Pei L, Chen Y-C. Risk Factors for Dementia. J Formosan Medical Association 2009;108:10:754-764. Clarke N, Clarke F, Edwards D. (eds). Diagnosing Dementia in General Practice, in How to Manage Dementia in General Practice. Oxford: John Wiley & Sons; 2013. Dementia. A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care. National Clinical Practice Guideline Number 42 National Collaborating Centre for Mental Health. Available at: www.scie.org.uk/publications/misc/dementia/dementia- fullguideline.pdf. Social Care Institute for Excellence. Dementia. Available at: www.scie.org.uk/dementia. Sosa-Ortiz LS, Acosta-Castillo I, Prince MJ. Epidemiology of Dementias and Alzheimer’s Disease. Archives of Medical Research 2012;43(8):600–608. Walls A. Developing pathways for oral care in elders: challenges in care for the dentate the subject? Gerodontology 2014;31(Suppl 1):25–30. 14 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
2 PRINCIPLES OF CARE PROVISION 2.1 General considerations Management of an individual’s oral health is dependent not only on what happens in a dental surgery but how that individual self-manages their mouth. There are a number of general considerations to take into account when treating people with dementia. First, the recognition that the impact of dementia on an individual will vary; some people have ‘good’ and ‘bad’ days. Where possible, dental appointments may be better postponed to a ‘good’ day, and scheduled to fit in with the individual’s ‘best’ time of day. Some people with dementia may have reduced attention spans, meaning that their ability to co-operate may be decreased. Dental appointments should be kept within the individual’s capacity to cope and their preferred timings. As with all patients, the use of appointment reminders can help ensure that people remember to attend for their appointment. While common practice, flexibility in the arrangements for sending the reminder – for example the use of text messages, emails or printed diary stickers – should be considered. Patients may appreciate a telephone call the day before their appointment. This will reduce anxiety for the person living with dementia and help ensure that appointments are not missed. If attending with a family member who is also due for a check-up, it may help to conduct their check-up first so the patient can acclimatise and watch so they are more prepared for what will happen in their own examination. Carers (either formal, or informal such as family members) play a vital role in supporting people living with dementia to access health and social care.1 Their close relationship and proximity to the patient means carers are well-placed to help a person to give a pain history, describe symptoms, and attend the dentist.2 In later stages of the disease, carers Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 15
will usually play a key role in initiating help and seeking treatment2 and in supporting individuals to have choice and control over decisions affecting them.1 It is hugely important that the dental team develop close working relationships with carers in order to facilitate access to dental care, such as identifying the most suitable times to attend. In later stages of the disease this will include supporting decisions and choices about the dental treatment. Access to a surgery where the examination will take place should, if possible, be step- free. The requirement to climb stairs in general has been identified as a barrier to various activities in the elderly and can be exacerbated for those living with dementia.3 The overall approach to managing the care of individuals who have been diagnosed with dementia should be consistent, where possible, with those outlined in Clinical Examination & Record Keeping – Good Practice Guidelines.4 The dentist should be aware, however, that some variation may be necessary in the format and depth of enquiry to ensure that treatment can be provided in a safe and appropriate manner. The clinician must consider not only the patient’s current dementia status when formulating treatment plans, but its likely rate of development. This covered in more detail in section 2.5. As with all history-taking, it is essential to update and record at each patient visit, as the nature of the condition means that progression is continuous, protracted and often erratic.5 B 2.1.1 Pre-examination The incorporation of this element in the care process ensures that adequate information is collected and can assist in establishing whether the patient is attending with a particular problem. If there is a carer involved in supporting the patient, their help with gathering this vital pre-examination information can be invaluable. 16 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
The information in this ‘pre-exam’ comprises:
• Personal information.
• Medical history.
• Socio-behavioural history.
This can be collected prior to attendance at the practice using a pro-forma.
2.1.1.1 Personal information
• For existing patients, a change in details or manner of the patient’s responses and
behaviour may alert the dental team to a change in a person’s cognitive abilities. The
dental team might be the first healthcare professionals to notice symptoms indicating
early onset of disease. This may lead to a sensitive discussion as to whether the
patient should contact their own GP in relation to (either the patient’s or dentist’s)
concern over a noticeable change in memory. It is important that advice to seek
further medical assessment is given in a neutral way, avoiding alarming or worrying
the patient unnecessarily. The process should be the same as if there were concerns
about a patient’s physical health, such as a persistent cough (see also section 3.2).
• Should the dentist and patient agree to contact the GP, the dentist should be aware
of General Dental Council (GDC) standards of disclosing information and seek the
patient’s consent (see 3.2 for further information). C
• As dementia advances, updating history may become more difficult and time-
consuming, even if the carer is present. A preliminary phonecall requesting this
information before the dental visit may be helpful. Many people living with
dementia may have a ‘patient passport’ which can provide helpful details about
medical history, medications and how the person likes to be treated, including
conditions which enable treatment (e.g. familiar music and interests).
2.1.1.2 Medical history
Understanding a patient’s medical history and being aware of the patient’s medical
condition while providing care is essential, as it may influence the type and extent
of treatment provided.6 B
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 17• Patients may not always disclose that they have dementia, but dentists should
be aware of the common drugs used to help patients with the condition.
This will aid the dental team in patient management (see section 3.4.1). B
• The frequency of administration (e.g. daily, twice daily, morning, evening)
and whether tablet – or syrup-based should be particularly noted. B
• Nutritional supplements may be also prescribed and these too should be
noted. A
• For all patients, drug regimes should be recorded. For computerised systems,
an updated entry may suffice. B
• The medical history should be signed and dated for the current course of
treatment by the patient, carer or relative as appropriate, and the clinician. A
• There may be issues with swallowing and dysphagia, particularly if there has
been a history of stroke or Parkinson’s disease. It is important to identify if there
is speech and language support for the patient, and whether patients have been
prescribed thickened fluids, and/or given advice regarding their posture during
eating and drinking. A
2.1.1.3 Socio-behavioural history
In addition to information gathered as part of the medical history, there is additional
material that may be of value that should be discussed for patients living with dementia.
• There may be a preferred time of day for the patient to attend and this should
be borne in mind when arranging appointments. A
• Their preferred type of communication for both appointment reminders and
overviewing agreed treatments. A
• There may be carer involvement and the extent of this should be noted. Their
role is of vital importance to supporting people living with dementia to attend
the dentist. A
• Who that carer is and what their relationship is to the patient should be noted
in the records. A
18 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)• How the patient should be contacted; either directly or via a carer. This is of
importance to avoid ethical or confidentiality issues. A
• In some circumstances, where mental capacity has been lost, a lasting power
of attorney may be in place for health and care issues, as well as financial matters.
If one is not in place, there may be a carer or family member who supports the
person living with dementia to make decisions and choices about care and support,
including dental care and their details recorded. C
2.1.1.4 Dental history
Condition-specific information should be discussed and recorded, including:
• The ability to chew foods comfortably. A
• Swallowing difficulties. A
• Previous difficulties with treatment. A
• Oral hygiene regimen – particularly whether assistance is required. B
• Dry mouth. B
• Dentures previously provided but not worn. A
In certain circumstances, particularly where communication is poor, there may be
difficulty in discerning the cause of a problem. General malaise may prove to be of
dental origin, particularly dental pain. Asking patients and carers to complete a pain
diary for a planned appointment can be very useful. One example of recording pain
for individuals living with dementia is the Abbey Pain Scale, which is an instrument
designed to assist in the assessment of pain in patients who are unable to clearly
articulate their needs (see Appendix A2).7
2.1.1.5 Communication
It is important that all healthcare professionals (HCPs) develop specific communication
skills for working with people living with dementia. All members of the dental team
should maintain key standards of good communication, but where necessary adjust
communication strategies to meet the needs of those living with dementia. A
Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 19First, at every clinical encounter the clinician/nurse/receptions should introduce themselves by name and state their role, for example, “Good morning Mrs Black, my name is Mary Brown, I am a dentist.” Always address the patient by their preferred name (check beforehand what that might be) and if unsure, it is wise to start more formally. Approach the patient from the front (avoid coming in from behind as it can be frightening and startling) and get to a comfortable level where it is possible to maintain eye contact. Standing over people can feel intimidating; likewise, crouching in front of people can seem patronising. It is important to retain a high level of understanding and keep the conversation simple. Give time for your patient to process information using familiar words and terms. Refer to people and things by their name (for example, “…your daughter Jan,” or “your doctor, Dr Shah”). Ask one question at a time, giving the patient time to process and respond, and repeat the answer back to the patient to check that they have been understood. Give the person your full attention while they are speaking. Keep information requests simple; where possible ask for one decision at a time, for example “Do your prefer to attend in the morning or afternoon?” It is important to give people choice but not to overwhelm. The same approach applies to taking the medical history; ask about one aspect at a time. Try not to interrupt, and when there is a gap in conversation or digression, steer the patient back to the point of interest. Sometimes the clinician may ask a question that generates a response unrelated to the question. Try and rephrase the question. Rather than correcting the patient overtly, gently distract them and draw them back to the area of interest. Avoid using too many direct questions; rather than “Do you know who I am?” or “Do you know where you are?” try “Good morning Mrs Smith, I am Joan Evans the dental hygienist and we are in my dental surgery.” Physical touch, such as a pat on the shoulder or hand, can be reassuring; but it is important to be aware of any socio-cultural issues around touching a non-family member. Ensure that conditions are optimal for effective communication. Make sure the patient (if 20 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
required) has his/her reading glasses, hearing aid (switched on with batteries working) and if possible have effective pain control. Avoid background noises such as a beeping from equipment, staff entering and leaving the surgery, moving instruments, or playing a radio/ music system too loudly. For some people, music can be relaxing and comforting, so it may be a good idea to check with the patient for a favourite performer or piece of music. In the later stages, when dementia is more advanced, the person’s verbal skills can deteriorate and therefore they can become more sensitive to body language. Assume a calm reassuring presence, do not make sudden movements, and ensure body language reflects what is being said. Ensure that facial expressions and tone of voice correspond; nod and show active listening. Even if the clinical encounter is frustrating for the dental team, a calm and reassuring voice can reduce anxiety, even if the conversation is not understood by the patient. In middle and later stages, family members and carers can often advise on what might work best; how people react to different stimuli and how communication should be approached. It is useful to ask family and carers about collateral information – what is ‘typical’ for this patient, any particular habits or fidgets, conversational habits or reactions to pain and discomfort. Family members/carers can be very useful in helping the dental team manage an individual’s behaviour, identify what coping mechanisms and reassurances work, and advise on what triggers to avoid. Challenging behaviour is often as a consequence of a need not being met; the person is thirsty, hungry, or needs to use the toilet. Such needs being unmet can manifest in behaviour such as agitation, wandering and preservation (repeating the same word). Try not to keep the patient waiting, and ensure he/she has eaten and drunk recently, and used the toilet. Avoid triggers by using distraction; for example, instead of saying to the patient “Don’t leave the waiting room” or “Don’t fiddle with the chair,” perhaps try “Let’s look at these pictures”, or “Let’s go in to meet the dentist.” A visual prompt for facilitating successful communication in the practice environment is provided in Appendix A3. A useful mnemonic to assist in managing communication with patients living with Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 21
dementia is VERA.8 This is particularly helpful when it is unclear what the person is trying to express, or when the patient says something that is known to be untrue. V: Validation. This acknowledges that the person is trying to express and communicate, even if it is unclear (including relevance) about what is being communicated. A 90-year- old man might say he wants to see his mother. Accept the communication. (“You want to see your Mum, Jim?”) Do not dismiss the behaviour as simply a symptom of dementia. E: Emotional context. Understand that there is an emotional context to the behaviour. Pay attention to the emotion, even if the verbal communication is not clear (e.g. “You sound worried, Jim.”) Do not dismiss the emotion as a symptom of dementia. R: Reassurance. This can involve any verbal or non-verbal communication. A calm voice and demeanour can reassure and alleviate anxiety. This might be supplemented with a reassuring pat on the hand or arm, but be aware of socio-cultural issues around physical touch. (“Its OK Jim, you are safe here,” perhaps followed by a reassuring pat on the hand). A: Activity. Institute an activity by assessing what the unmet need might be and find a way of addressing it (e.g. offer a drink or a trip to the toilet). SUMMARY OF RECOMMENDATIONS KEY: A – Aspirational B – Basic C – Conditional Medical history Understand patient’s medical history B Update and record history at each patient visit B Seek patient consent to inform GP of potential symptoms C Be aware of common drugs used to help dementia patients B Note frequency of medicine administration B 22 Dementia-Friendly Dentistry Faculty of General Dental Practice (UK)
Record use of nutritional supplements, if appropriate A Record changes to drug regimens B History of medication changes noted for new patients B Medical history signed and dated by patient/carer/relative and clinician for each course of treatment A Identify support and interventions received in relation to dysphagia A Socio-behavioural history Establish and accommodate preferred time of day for appointments A Establish and accommodate preferred method of communication for appointment and treatment information A Note presence and/or extent of carer involvement A Note details of carer and their relationship to the patient A Establish whether the patient should be contacted directly or via a carer, keeping patient confidentiality in mind A Where mental capacity has been lost, establish whether there is power of attorney in place, or a person whose role it is to make decisions for the patient C Dental history Record the ability to chew foods comfortably A Record swallowing difficulties A Record previous difficulties with treatment A Note the patient’s oral hygiene regimen and whether assistance is required B Record whether the patient has dry mouth B Record where dentures were previously provided but not worn A Communication Adjust communication methods to meet the needs of patients with dementia A Dementia-Friendly Dentistry Faculty of General Dental Practice (UK) 23
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