There are currently 800,000 people with dementia in the UK. There are over 17,000 younger people with dementia in the UK. There are over 25,000 people with dementia from black and minority ethnic groupsin the UK. There will be over a million people with dementia by 2021. Two thirds of people with dementia are women. The proportion of people with dementia doubles for every 5 year age group. One third of people over 95 have dementia. 60,000 deaths a year are directly attributable to dementia. Delaying the onset of dementia by 5 years would reduce deaths directly attributable to dementia by 30,000 a year.
The financial cost of dementia to the UK will be over ? 23 billion in 2012. There are 670,000 carers of people with dementia in the UK Family carers of people with dementia save the UK over ? 8 billion a year. 80% of people living in care homes have a form of dementia or severe memory problems. Two thirds of people with dementia live in the community while one third live in a care home.
Only 44% of people with dementia in England, Wales and Northern Ireland receive a diagnosis UK dementia statistics Affects 820,000 people in the UK Financial cost is over ?
23bn pa, that is twice that of cancer, three times the impact of heart disease and four times that of stroke Two thirds (425,000) of people live in the community, one third (244,000) in a care home Two thirds of people with dementia are women (446k) and one third men (223,000) Affects 1 in 100 people aged 65-69, 1 in 25 aged 70-79 and 1 in 6 people aged over 80 Key risks from assessment are falls and walking about (60% experience walking about) 25 million people, or 42% of the UK population, are affected by dementia through knowing a close friend or family member with the condition.
(Source: Alzheimer’s Research Trust / YouGov poll, 2008) 163,000 new cases of dementia occur in England and Wales each year – one every 3. 2 minutes The number of people in UK with dementia is expected to double in the next 40 years to 1. 7million people Statistics courtesy Alzheimer’s Research Trust and www. alzheimers. org. uk Government Policy The National Dementia Strategy – The objectives of the project are to develop a national dementia strategy and implementation plan for publication in October 2008.
The strategy will address three key themes ?? ” raising awareness, early diagnosis and intervention and improving the quality of care. For more information: visit National Dementia Strategy Dementia affects 820,000 people in the UK. 25 million of the UK population have a close friend orfamily member with dementia. As well as the huge personal cost, dementia costs the UK economy ? 23 billion a year, more than cancer and heart disease combined. Despite these figures, dementia researchis desperately underfunded. Impact of dementia in the UK
There are over 820,000 people living with dementia in the UK today, a number forecast to rise rapidly as the population ages. Just 2. 5% of the government’s medical research budget is spent on dementia research, while a quarter is spent on cancer research. One in three people aged over 65 will die with a form of dementia. Dementia costs the UK economy ? 23 billion per year. That is twice that of cancer, three times the impact of heart disease and four times that of stroke. Combined government and charitable investment in dementia research is 12 times lower than spending on cancer research.
?590 million is spent on cancer research each year, while just ? 50 million is invested in dementia research. Heart disease receives ? 169 million per year and stroke research ? 23 million. 1. What is dementia? The term ‘dementia’ is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities. These symptoms are caused by structural and chemical changes in the brain as a result of physical diseases such as Alzheimer’s disease.
Dementia can affect people of any age, but is most common in older people. One in ? ve people over 80 has a form of dementia and one in 20 people over 65 has a form of dementia. Researchers are still working to ? nd out more about the different types of dementia, and whether any have a genetic link. It is thought that many factors, including age, genetic background, medical history and lifestyle, can combine to lead to the onset of dementia. Dementia is a progressive condition. This means that the symptoms become more severe over time.
Understanding how this progression happens can be useful in helping someone with dementia anticipate and plan for change. The way each person experiences dementia, and the rate of their decline, will depend on many factors – not just on which type of dementia they have, but also on their physical make-up, their emotional resilience and the support that is available to them. Typically symptoms will include: • Loss of memory – for example, forgetting the way home from the shops, or being unable to remember names and places.
• Mood changes – these happen particularly when the parts of the brain which control emotion are affected by disease. People with dementia may feel sad, angry or frightened as a result. • Communication problems – a decline in the ability to talk, read and write. There are different types of dementia caused by different diseases of the brain. Because these diseases affect the brain in different ways, they produce different symptoms. Some of the most common forms of dementia are listed below: 1. 2 Who is affected and how?
Dementia can affect anyone regardless of gender, ethnicity, socio-economic situation and residential status. Nearly two-thirds of people with the disorder live in the community, while the other third reside in a residential home. A small number of people with dementia are from black and minority ethnic (BME) groups. This is due to the current younger age profile in London’s BME communities. As this population ages, with a higher prevalence of physical conditions which may contribute to dementia, the rate of dementia is expected to increase.
A detailed analysis of the London population segments affected by dementia is available in appendix 1. This highlights that most cases of dementia are late-onset and therefore affect people aged 65 and over. Approximately one in 40 cases is early-onset dementia and occurs before the age of 65. Many factors, including age, genetic background, medical history and lifestyle can combine to lead to the onset of the disorder. Key points to emerge from recent studies and consultations with people with dementia and their carers showed:
• Dementia is poorly understood, it remains a stigmatised condition and those affected often experience social exclusion and discrimination. • Seeking help is frustrating; access to services typically includes contact with the NHS, local councils and the third sector; sometimes being referred elsewhere and often duplicating activities. • Current services do not meet the needs of people with dementia. • Services are fragmented and lack robust integration and strong partnership working. • There are gaps in provision and the quality of specialist services remains inconsistent.
• Reliability and continuity of services are compromised because many staff lack the requisite knowledge and skills to respond appropriately to those affected. • Most health and social care services are not delivering the outcomes that are important to people with dementia: early diagnosis and treatment, easily accessible services, information and advice and high quality support. 8 Healthcare for London IntroductionDementia services guide 9 3 Source: Based on Dementia UK prevalence rates applied to GLA populations Introduction THE DIFFICULTY OF DIAGNOSING ALZHEIMER’S
Most diagnoses of Alzheimer’s are delayed until more than two years after symptoms first appear because patients and families ignore, deny, or don’t recognize common signs of early Alzheimer’s, according to a 2006 Alzheimer’s Foundation of America survey. Fifty-seven percent of caregivers who answered the poll said they put off seeking diagnosis for symptoms of memory loss, confusion, and language difficulties because they — or the person they cared for — were in denial about having the disease, or because they feared the social stigma associated with AD.
Another 40 percent didn’t seek a diagnosis because they knew little about Alzheimer’s or its symptoms, they said. 38 percent of those surveyed said it was the patient who resisted going to see a doctor; 19 percent of caregivers admitted they themselves didn’t want to face the possibility that something was wrong. Spouses were three times less likely than children of people with Alzheimer’s to delay seeking diagnosis, the survey found. What Is Dementia? by Maureen Dezell with Carrie Hill, Ph. D. Dementia itself is not a disease but a term that describes different brain disorders that cause memory loss and other symptoms of cognitive decline.
While various kinds of dementia are more common the longer we live, none is a part of normal aging. Dementia specialists recommend you see a doctor to evaluate any of these problems or symptoms, which may point to dementia: Problems retaining recent memories and learning new information, losing and misplacing objects, regularly forgetting appointments or recent conversations, or asking the same question over and over. Problems handling complex tasks; trouble balancing a checkbook, following a recipe, or performing routine tasks that involve a complextrain of thought. Trouble reasoning.
Difficulty dealing with everyday problems, such as a flat tire. Uncharacteristic rash behavior, including poor financial or social judgment. Difficulty with spatial ability and orientation. Driving and navigating familiar surroundings becomes difficult; trouble recognizing local landmarks. Difficulty with language. Problems speaking, listening, and following or participating in conversations. Behavioral or personality changes. An active, engaged person seems listless and unresponsive. Trusting people become suspicious. What Is Dementia? by Maureen Dezell with Carrie Hill, Ph. D.
. While various kinds of dementia are more common the longer we live, none is a part of normal aging. Dementia specialists recommend you see a doctor to evaluate any of these problems or symptoms, which may point to dementia: Problems retaining recent memories and learning new information, losing and misplacing objects, regularly forgetting appointments or recent conversations, or asking the same question over and over. Problems handling complex tasks; trouble balancing a checkbook, following a recipe, or performing routine tasks that involve a complextrain of thought. Trouble reasoning.
Difficulty dealing with everyday problems, such as a flat tire. Uncharacteristic rash behavior, including poor financial or social judgment. Difficulty with spatial ability and orientation. Driving and navigating familiar surroundings becomes difficult; trouble recognizing local landmarks. Difficulty with language. Problems speaking, listening, and following or participating in conversations. Behavioral or personality changes. An active, engaged person seems listless and unresponsive. Trusting people become suspicious. Who gets dementia? . Rarely, dementia affects younger people.
Dementia is said to be early-onset (or young-onset) if it comes on before the age of 65. There are some groups of people who are known to have a higher risk of developing dementia. These include people with: Down’s syndrome or other learning disabilities. People with Down’s syndrome are more likely to develop Alzheimer’s disease. Parkinson’s disease. Risk factors for cardiovascular disease (angina, heart attack, stroke and peripheral vascular disease). The risk factors for cardiovascular disease (high blood pressure, smoking, high cholesterol level, lack of exercise, etc) are risk factors for all types of dementia, not just vascular dementia.
Severe psychiatric problems such as schizophrenia or severe depression. It is not clear why this is the case. Lower intelligence. Some studies have shown that people with a lower IQ and also people who do not have very high educational achievement are more likely to develop dementia. A limited social support network. Low physical activity levels. A lack of physical activity can increase your risk of dementia. (See separate leaflet called ‘Physical Activity for Health’ for more details. ) Dementia also seems to run in some families so there may be some genetic factors that can make someone more likely to
develop dementia. We do know that a few of the more rare causes of dementia can be inherited (can be passed on through genes in your family). Can medication help people with dementia? There is no cure for dementia and no medicine that will reverse dementia. However, there are some medicines that may be used to help in some causes of dementia. Medication is generally used for two different reasons. Firstly, as treatment to help with symptoms that affect thinking and memory (cognitive symptoms). Secondly, as treatment to help with symptoms that affect mood and how someone behaves (non-cognitive symptoms). With improved
nursing care and more widespread use of antibiotics to treat intercurrent infections, individuals now commonly survive 10 years or longer with dementia. This was not always the case – in the 1950s, the pioneering geriatric psychiatrist Sir Martin Roth and colleagues used distinctions in duration of illness to show that dementia differed from other severe psychiatric syndromes, notably depression, in the elderly. At that time, most elderly people hospitalized with dementia in the UK survived for approximately 2 years; Sex. All prevalence studies show that women are more often affected by dementia than are men.
Typically, health services treat twice as many women as men with dementia. This contrast is explained only partly by the longer life expectancy of women because, even when this is taken into account, a slight excess of incidence is still evident in women. 2009 Health Press Ltd. Fast Facts:Dementia Lawrence J Whalley and John CS Breitner SOCIAL MODEL OF DEMENTIA While the clinical model of dementia presented above describes the changes occurring within the brain, the way that dementia affects a person in day-to-day life will vary from one individual to the next.
For many years, people with dementia were written off as incapable, regarded as little more than ‘vegetables’ and often hidden from society at large. During the 1980s and 1990s, there was a move away from regarding people with dementia as incapable and excluding them from society, and towards a ‘new culture of dementia care’, which encouraged looking for the person behind the dementia (Gilleard, 1984; Kitwood ; Benson, 1995; Kitwood,1997). People with dementia could now be treated as individuals with a unique identity and biography and cared for with greater understanding.
Building on this work, others (notably Marshall, 2004) have advocated that dementia should be regarded as a disability and framed within a social model. The social model, as developed in relation to disability, understands disability not as an intrinsic characteristic of the individual, but as an outcome produced by social processes of exclusion. Thus, disability is not something that exists purely at the level of individual psychology, but is a condition created by a combination of social and material factors including income and financial support, employment, housing, transport and the built environment (Barnes et al.
, 1999). From the perspective of the social model, people with dementia may have an impairment (perhaps of cognitive function) but their disability results from the way they are treated by, or excluded from, society. For people with dementia, this model carries important implications, for example: ? the condition is not the ‘fault’ of the individual ? the focus is on the skills and capacities the person retains rather than loses ? the individual can be fully understood (his or her history, likes/dislikes, and so on) ?
the influence is recognised of an enabling or supportive environment ? the key value is endorsed of appropriate communication ? opportunities should be taken for rehabilitation or re-enablement ? the responsibility to reach out to people with dementia lies with people who do not (yet) have dementia (Gilliard et al. , 2005). The social model of care seeks to understand the emotions and behaviours of the person with dementia by placing him or her within the context of his or her social circumstances and biography.
By learning about each person with dementia as an individual, with his or her own history and background, care and support can be designed to be more appropriate to individual needs. If, for example, it is known that a man with dementia was once a prisoner of war, it can be understood why he becomes very distressed when admitted to a locked ward. If care providers have learned that a person with dementia has a strong dislike for a certain food, it can be understood why the person might spit it out.
Without this background knowledge and understanding, the man who rattles the door may be labelled a ‘wanderer’ because he tries to escape and cowers when approached, or the person who spits out food is labelled as ‘antisocial’. Moreover, a variety of aspects of care may affect a person as the dementia progresses. Some extrinsic factors in the care environment can be modified, for instance noise levels can be highly irritating but are controllable. Other intrinsic factors, such as the cultural or ethnic identity of the person with dementia, may also have a bearing on how needs are assessed and care is delivered.
Some aspects will be more important or relevant to one person than to another. The social model of care asserts that dementia is more than, but inclusive of, the clinical damage to the brain. ), and while we do not know what precise forms of training are effective, it is reported to lead to better identification of abuse (a random controlled trial by Richardson and colleagues (2002) provides good evidence of this). Agreed multi-agency policy and practice guidance is available at local level and identifies the approaches to be taken when abuse or neglect are suspected.
A national recording system for referrals of adult abuse has been piloted (Department of Health, 2005b), which found that older people with mental health problems were among those referred to local authorities’ adult protection systems; a variety of interventions were adopted, although information on the outcomes is not available. Recommendations from a series of high-profile inquiries into care settings in hospitals (for example, Rowan Ward, Department of Health/Care Services Improvement Partnership, 2005) are relevant to commissioners, regulatory bodies and practitioners in seeking to lower the risk of abuse.
The law in this area is developing and the Mental Capacity Act 2005 introduces a new criminal offence of ill treatment or neglect of a person who lacks capacity. DISCLOSURE/STIGMA Assessment and reaching a conclusion about the diagnosis leads to a point where this information should be shared with the person with dementia. This is especially challenging in dementia for a number of reasons: ? the difficulty of accurate diagnosis ? the challenge of imparting ‘bad news’ ? uncertainty about whether or not the person will understand what is being said ?
uncertainty about whether or not the person will retain what is said ? lack of follow-up support. Studies, in which people with dementia have been invited to tell the story of how they reached a memory assessment service and what the assessment process felt like, indicate that this is not an easy journey for them (Keady ; Gilliard, 2002). Often, they have been aware of their memory difficulties for some time before sharing this information with others (usually, but not always, their close family). This awareness may occur in quite private activities, like doing crossword puzzles.
In the meantime, those who are closest to the person may also have been aware of the difficulties but have fought shy of sharing their concerns. Disclosing their concerns to each other is often what triggers a visit to the GP and referral to a memory assessment service (Keady ; Gilliard, 2002). People have reported that their visits to the memory assessment service can also be quite an ordeal (Keady ; Gilliard, 2002). This is often like no other outpatient clinic. The doctor may speak to the carer separately from the person being assessed, leading to suspicion about what is being said.
The assessment process itself may prove embarrassing, even humiliating. People report that they are aware that some of the questions are simple and feel foolish that they are unable to answer. They may establish strategies for managing this (Keady ; Gilliard, 2002). Whilst recognising that most people are seeking to make sense of what is happening to them, it is important to acknowledge that some will find it hard to listen to their diagnosis and there will be some who will not want to be told at all.
They know they have a problem with their memory and that they are not able to function as they once did or as their peers do. They want to know what is wrong with them, and they need the clinician to be honest with them. Telling someone that he or she has a memory problem is only telling him or her what he or she already knows. People should be told their diagnosis as clearly and honestly as possible. The moment of sharing the diagnosis may not be comfortable for any of those concerned – neither the clinician, nor the person with dementia, nor his or her carer (Friel McGowan, 1993).
Without this knowledge, people cannot begin to make sense of what is happening, nor can they plan effectively for their future. They should be given a choice of treatments and need information about practical support and entitlements, like Lasting Powers of Attorney and advance decisions to refuse treatment (more information can be found in Section 4. 9. 4 and in the Mental Capacity Act 2005 [The Stationery Office, 2005]). They will want to make decisions about how they spend their time before life becomes more difficult for them (for example, visiting family abroad).
Following the disclosure of the diagnosis, people with dementia and their families may want further support and opportunities for talking. Pre- and post-assessment counselling services should be part of the specialist memory assessment service. Recent work (Cheston et al. , 2003a) has shown the value of psychotherapeutic support groups for people with dementia, allowing them space to share their feelings with others. Joint interventions with the person with dementia and family carers, such as family therapy, recognise the fact that the diagnosis does not impact on just one person but on a whole family system (Gilleard, 1996).
Other services have used volunteer ‘befrienders’ to maintain contact with people who are newly diagnosed and who can offer both practical support and information together with a ‘listening ear’. People with early dementia are also taking responsibility for their own support by forming groups, which may meet regularly or may be virtual networks using the internet (see, for example, www. dasninternational. org). Sensitivity is required in ensuring that information about the diagnosis is given in a way that is easily understood by the person concerned and acceptable to the family. Gentle questioning at an early stage will help to
ascertain what people can, and want, to be told. There is much we can learn from earlier work on sharing the diagnosis with people with cancer (for example, Buckman, 1996). It is especially important to be aware of different cultural sensitivities and the stigma that dementia holds for many people. This can range from subjective feelings of shame to a real exclusion from community and family life. Age and ethnicity are both factors in the sense of stigma associated with a diagnosis of dementia (Patel et al. , 1998). 4. 9 BASIC LEGAL AND ETHICAL CONCEPTS IN CONNECTION WITH DEMENTIA CARE 4. 9. 1 Introduction
The ethical problems that arise in the context of dementia mainly relate to autonomy, which is compromised in dementia to varying degrees. Respect for autonomy is recognised as a key principle in health and social care (Beauchamp ; Childress, 2001). Many of the ethical tensions that arise in looking after people with dementia do so because of, on the one hand, the requirement that autonomy ought to be respected and, on the other, the reality of increasing dependency, where this entails a loss of personal freedom. Person-centred care is a means of respecting personal autonomy wherever it is threatened (Kitwood, 1997).
As Agich has stated, ‘Autonomy fundamentally importantly involves the way individuals live their daily lives; it is found in the nooks and crannies of everyday experience’ (Agich, 2003). Hence, respecting the person’s autonomy will involve day-to-day interactions and will be achieved if the person with dementia is not positioned in such a way as to impede his or her remaining abilities. Such ‘malignant positioning’ can be the result of inappropriate psychosocial structures. The fundamental way to combat this tendency, which undermines the person’s selfhood, is to encourage good-quality communication (Kitwood, 1997; Sabat, 2001).
Another way in which selfhood might be undermined is through structural or procedural barriers to good-quality care, and service providers should take an active role in promoting the individual’s autonomy and his or her legal and human rights. Furthermore, services may discriminate against people with dementia if eligibility criteria are drawn up in such a way as to exclude them or because of an assumption that people with dementia cannot benefit from a service because staff lack confidence and skills in working with this group.
Discrimination may also occur if a service does not offer people with dementia the support they may need in order for them to be able to make use of the service. The Disability Discrimination Acts (1995 and 2005), which include dementia within the definition of disability, aim to end the discrimination that many disabled people face in their everyday lives by making direct or indirect discrimination against disabled people unlawful in a range of areas including access to facilities and services and buying or renting property.
The discussion that follows will briefly focus on human rights, consent, capacity and confidentiality. 4. 9. 2 Human rights Human rights are enshrined, as far as the United Kingdom is concerned, in the Convention for the Protection of Human Rights and Fundamental Freedoms (Council of Europe, 2003). The relevant UK legislation is the Human Rights Act 1998, which came into force in 2000. The principle of respect for autonomy is implicit throughout the Convention. A number of the articles of the Convention are potentially relevant to people with dementia.
For example, Article 2 asserts that everyone has a right to life, Article 3 prohibits torture, but also “inhuman or degrading treatment”, and Article 8 concerns the right to respect for the person’s private and family life. Article 5 asserts the right of people to liberty and security. It states that “No one should be deprived of his liberty”, except in very specific circumstances. It also asserts that if someone is deprived of his or her liberty, there should be recourse to a court. Article 5 was central to the ‘Bournewood’ case.
The European Court declared, amongst other things, that the man concerned (who had a learning disability) had been deprived of his liberty, in contravention of Article 5 (see Department of Health, 2004, for further information). The crucial distinction to emerge from the case was that between deprivation of liberty and restriction of liberty. Whilst the former is illegal, except insofar as there are legal safeguards of the sort provided by the Mental Health Act 1983 (HMSO, 1983), the latter may be permissible under the sort of circumstances envisaged by Section 6 of the Mental Capacity Act 2005 (TSO, 2005).
This discusses using restraint as a proportionate response to the possibility of the person suffering harm. Guidance on the distinction between ‘restriction’ and ‘deprivation’ of liberty has been provided by the Department of Health and the National Assembly for Wales (Department of Health, 2004). 4. 9. 3 Consent In brief, for consent to be valid it must be: ? informed ? competent ? uncoerced ? continuing. Each of these concepts requires interpretation and judgement, as none of them is entirely unproblematic (Department of Health, 2001a). For instance, people can be more or less informed.
The ‘Sidaway’ case (1984) established that the legal standard as regards informing a patient was the same as for negligence (see the ‘Bolam case’, 1957). In other words, the person should be given as much information as a ‘responsible body’ of medical opinion would deem appropriate. However, since then, there has been a shift away from a professional-centred standard towards a patient-centred standard. In the ‘Pearce’ case (1998), one of the Law Lords declared that information should be given where there exists ‘a significant risk which would affect the judgement of a reasonable patient’.
Department of Health guidelines (Department of Health, 2001c) have pointed out that, although informing patients about the nature and purpose of procedures may be enough to avoid a claim of battery, it may not be sufficient to fulfill the legal duty of care. There may be other pieces of information relevant to the individual patient that it would be negligent not to mention. Hence the General Medical Council (GMC)’s insistence that doctors should do their best ‘to find out about patients’ individual needs and priorities’ (GMC, 1998). The GMC guidance goes on to say: ‘You should not make assumptions about patients’ views’.
These points are very relevant when it comes to consent in the context of dementia. It should be kept in mind that consent is not solely an issue as regards medical procedures. The ‘nooks and crannies of everyday experience’ (Agich, 2003) – what to wear or to eat, whether to go out or participate in an activity and whether to accept extra home or respite care – are all aspects of life to which the person with dementia may or may not wish to consent. If the person has capacity with respect to the particular decision, but does not wish to consent, he or she should be supported in making an autonomous decision. 4. 9.
4 Decision-making capacity In England and Wales, a lack of capacity has been defined thus: ‘. . . a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain’ (Mental Capacity Act 2005 [TSO, 2005, Section 2]). A person is further defined as unable to make a decision if he or she is unable: ‘(a) to understand the information relevant to the decision, (b) to retain this information, (c) to use or weigh that information as part of the process of making the decision, or
(d) to communicate his decision (whether by talking, using sign language or any other means)’ (Mental Capacity Act 2005 [TSO, 2005, Section 3(1)]). The Mental Capacity Act 2005 (TSO, 2005), which will apply in England and Wales31, sets out a framework for making decisions for people who are unable to make decisions for themselves. Its detailed provisions, along with its Code of Practice (currently in draft form [DCA, 2005]), should be referred to by all those involved in such decision making. In outline, the main provisions of the Act: ? offer a definition of lack of capacity (Sections
2–3) ? outline a process for the determination of a person’s best interests (Section 4) ? create Lasting Powers of Attorney, which allow a person to appoint a donee to make decisions about his or her health and welfare (Sections 9–14) ? establish the Court of Protection in a new form, with powers to make declarations and appoint deputies in difficult cases or where there are disputes concerning decisions about a person’s health and welfare (Sections 15–23) ? bring under statute and clarify the law regarding advance decisions to refuse treatment (Sections 24–26) ? set out safeguards co