Memorandum by the Alzheimer's Society (OPH 31)
· Two thirds of people in care homes have a form of dementia
· Up to one quarter of hospital beds are taken up by people with dementia
· People with dementia stay in hospital up to twice as long as other people who go in for the same procedures
· People with dementia experience care which falls far short of standards that should be expected under human rights principles, particularly in relation to inhumane and degrading treatment
· Health and social care staff have limited understanding of the needs of people with dementia
· We need to see concentrated effort to develop the skills of health and social care staff to deliver person centred care
· Government, providers and the voluntary sector have a key role to play in promoting human rights principles
1. This investigation is most welcome. Despite the positive intentions behind incorporation of the European Convention on Human Rights into UK law and areas of positive practice, the human rights of older people and people with dementia in particular receive very limited attention. Indeed, in many cases the human rights of people with dementia are being systematically undermined.
2. The Alzheimer's Society is the leading UK research charity for people with dementia and their carers. We provide information, support and advice to people affected by dementia through our network of over 250 branches and support groups throughout England, Wales and Northern Ireland.
The dementia context
3. There are currently 700,000 people with dementia in the UK. This number is set to increase to over 1 million by 2025 and 1.7 million by 2050. People with dementia are significant users of health and social care services. In total the cost of dementia is estimated to be £17 billion per annum. This includes a large financial cost to families who provide significant amounts of care for people with dementia. If the state had to provide the care currently provided by families it would cost over £6 billion a year.[i]
4. Of the 700,000 people with dementia in the UK, one third live in care homes.[ii] Increasingly residential care in the UK has become synonymous with dementia care. As policy has shifted to supporting people with physical disabilities to live in their own homes, the proportion of people in residential care with dementia has been increasing. Partly as a result of this trend, two thirds of people in care homes have a form of dementia.
5. People with dementia are also substantial users of hospital care. In total older people account for 60% of hospital bed days in the UK. Of those, 40% of older people in hospitals have dementia. This means that in total approximately one quarter (24%) of hospital beds at any one time are being used by people with dementia.[iii]
Human rights of people with dementia
6. The Alzheimer's Society has been campaigning for many years to improve the experience of people with dementia in hospitals and residential care which both remain an area of consistent concern for people with dementia and their families. Despite some areas of progress in recent years, our view would be that services continue to respond very poorly to the needs of older people generally and people with dementia specifically. In many ways it is not simply a case of progress stalling,
but actually of a serious deterioration in respect for the human rights of people with dementia. The inability of health and social care staff to respond to the complex needs of people with dementia mean that people's rights in these settings are not being met on a day-to-day basis.
7. Evidence on the numbers of people with dementia who suffer abuse or have their human rights violated cannot be reliably quoted. However, the Alzheimer's Society through contact with thousands of people with dementia and their families hears daily of instances where people with dementia are subject to neglect or other forms of abuse.
8. It is helpful to begin by stating that most of the abuse that the Alzheimer's Society hears about is abuse that occurs in families by family members. However, lack of respect for human rights is endemic in our health and social care system. The more widespread forms of abuse are not necessarily physical, financial or sexual. It is neglect in respect of people with dementia that is of the most concern.
9. In the context of the Human Rights Act, the Alzheimer's Society is especially concerned that the rights of people with dementia are not being respected with regards to Article 3 (right to freedom from torture or inhuman or degrading treatment), Article 8 (right to respect for one's privacy and family life, one's home and correspondence), Article 6 (right to fair and public hearing by an impartial tribunal), and Article 14 (right not to be discriminated against in access to these rights...). This submission gives more detail on these issues.
What are the main challenges to the human rights of older persons receiving treatment in hospital and residential homes? Do the same problems arise in both settings?
10. The challenge of promoting human rights for people with dementia is even more pronounced than for older people as a whole. As someone develops symptoms in dementia, their ability to communicate their wishes and challenge human rights violations falls.
11. Personal care on hospital wards is of particular concern. Hospital staff often do not recognise that people with dementia need help with eating, washing and using the toilet. As a result people with dementia who go into hospital often come out far worse than when they went in. On average, people with dementia can stay twice as long in hospital as other people who go in for the same procedures[iv].
12. Problems with continence are experienced by many older people. However, incontinence is particularly pronounced for people with dementia.
13. We regularly receive reports on our help line of people with dementia in hospitals and care homes being found by carers soaked in urine and of long delays before the issue is remedied. In some instances carers report having to change someone's clothes themselves or clean them up, without assistance.
14. There seem to be a number of reasons why continence is not handled well:
· On busy hospital wards the personal care of older people often seems to be low priority. Emphasis is placed on treating the condition that the person entered hospital needing attention for, but not taking into account the wider mental health needs of the person.
· There sometimes seems to be confusion about who has responsibility to carry our personal care tasks on wards. Increasingly nurses do not have the time or do not see it as their role to provide personal care and suggest that a healthcare assistant needs to be found to help.
· People with dementia need to be reminded to take a trip to the toilet or be helped to do so. If this does not happen then it is likely that they will wet themselves. No one takes responsibility for ensuring that people with dementia are reminded.
15. Another issue is the availability of suitable continence aides. In care homes and community settings continence pads are provided by the NHS. However, NHS continence pads are large, bulky items and can be very uncomfortable. If the pads are unsuitable for the person in question there are no publicly provided alternatives. The only choice is for an individual or their family to pay privately, if they can, for a better alternative. If they cannot afford an alternative the only option is to make do with uncomfortable pads.
16. Forcing someone to use uncomfortable incontinence pads or allowing them to languish in soiled clothes are two of the clearest examples of degrading and inhumane treatment that currently go unchecked. In addition we have heard examples of people being made to wear incontinence pads rather than being helped to use the toilet. Clearly this is unacceptable.
Nutrition and hydration
17. Good nutrition and hydration are essential to ensuring that people live in good health with dignity and respect but quite often it seems that these requirements are taken for granted. This is particularly true of people with dementia on hospital wards. In many care homes by comparison, the staff are much more aware that people need help to eat and drink and will help by cutting up food and reminding people to take fluids. However, the same is not true on hospital wards where we regularly receive reports of people losing significant amounts of weight during stays in hospital because they have not been adequately nourished. This also makes people with dementia more susceptible to hospital-acquired infections.
18. Recently Age Concern England took the extraordinary step of calling for an army of volunteers to come forward to go into hospitals to help people at meal times. This seems to be a sensible suggestion in the current context, but it is unacceptable that this is the situation we find ourselves in.
Discharge planning and community support
19. When someone with dementia is ready to leave hospital they and their relatives are often faced with a chaotic scramble to find a care home place or to get them back into their own home. This approach has been exacerbated by the delayed discharge regulations. The result is often that people with dementia are placed in care homes when they could be supported in the community if a limited support package could be put in place. Alternatively people are placed in completely inadequate care home placements.
20. Many care homes now refuse to take people with a diagnosis of dementia. This creates further restrictions on choices. Given that the majority of people who live in care homes have a form of dementia this is an unacceptable position. This situation would be improved if all homes were required to have staff trained in dementia care.
Aggression, behavioural symptoms and the use of sedatives
21. It is quite common for people with dementia to experience mood swings, to become disorientated and frustrated. Often these symptoms are as a result of being unable to understand, unable to adequately communicate their opinions or of being startled or frightened by unfamiliar people or environments. In these circumstances it is quite common for people to be aggressive and sometimes to lash out at others.
22. The response to aggression in dementia is often to prescribe powerful sedative neuroleptic drugs that can help to calm the person. However, these treatments have very damaging side effects. Medications such as Haliperidol, Risperidone and Olanzapine are being routinely prescribed to people with dementia in hospitals and care homes. A recent study found that 40% of people with dementia in care homes are being prescribed neuroleptic drugs.[v]
23. Neuroleptics are not licensed for use in dementia care but have become a convenient staple as part of routine treatment, despite known evidence on the risks which such 'treatments' pose to quality of life and the increased risk of death. The Committee on Safety of Medicines stated in 2004 that Olanzapine and Risperadol should not be prescribed to people with dementia because they increase the risk of stroke and heart attacks. In addition these treatments, which are actually chemical restraint, can reduce someone to a zombie like existence where they can no longer live as autonomously as they would have been able to.
Pain relief and palliative care
24. Although this inquiry is not specifically covering end of life care and decision making it is worth stating that inadequate attention is devoted to pain relief in the later stages of dementia. A recent study by the patient association found that 40% of people in care homes have experienced constant pain and that in many cases there was a limited poor response that did not meet their needs.[vi] Another study looking at a hospital ward for older people with mental health problems in the UK showed that patients with end stage dementia did not receive effective palliative care. In particular analgesia was used infrequently.[vii] The Alzheimer's Society is working with the National Council for Palliative Care on new guidelines for palliative care in dementia that is feeding into the Government's end of life care strategy.
25. The Alzheimer's Society has long argued that charging people for care that is a direct result of their medical condition is wrong and that there needs to be a reform current policy on charging. The clearest example of where human rights principles have not been followed is in relation to disputes about fully funded NHS continuing care. People have been forced to battle to get access to NHS funded care and independent reviews of continuing care decisions have been conducted in a manner that is far from independent and transparent.
26. In addition the treatment of older people in care homes who are in large part funded by the state creates serious questions about human rights principles. For example, the £20 a week personal expenses allowance for people to spend on everything apart from the package of care provided in care a care home is an inhumane amount to "allow" people to spend on clothes, entertainment and family expenditure.
Are there discriminatory restrictions of the rights of older persons to access healthcare without adequate justification, for example in relation to criteria used for rationing of finite healthcare resources?
27. The stipulation in the NSF for Older People that age discriminatory policies should be weeded out and abandoned has meant that policies that explicitly allow for such discrimination do not exist in the way that they once did. However, this does not mean that discriminatory practice has been removed. There are still a significant number ways in which older people and people with dementia are disadvantaged compared to younger people.
28. The biggest example of age discrimination is in the provision of community services. Local authorities and the NHS will put in place large packages of care for younger people with disabilities to support them to live in their own homes, which are, on average way in excess of levels of support that will be offered to older people. We regularly hear about social services deciding to move someone with dementia into a care home with little consideration being given to how a small amount of additional support at home could help someone to maintain their independence in the community for far longer.
29. It is not unusual for a local authority to pay on average £400 per week for an older person to be cared for in a care home, whereas the same authority may pay up to £1700 for the residential care of a younger person with disabilities. The justification that may be put is that the care home meets the person's needs, so the amount spent does not matter. Unfortunately it is quite clear that many people in care homes are not receiving the quality of care that could make a significant difference to quality of life.
30. It is sometimes impossible to disentangle when services are being restricted because of inaccurate assumptions about age from when they are being restricted because of inaccurate assumptions about dementia. In either case however, plenty of examples persist of services that respond poorly to need and therefore restrict access, infringing people's rights.
31. For people in care homes access to primary care services can be problematic. Given the range of conditions which people in care homes typically experience it would seem sensible for residents to have regular check ups. However, this is often not the norm. The inadequacy of community chiropody, physiotherapy, optometry and dentistry are of particular concern. For example, chiropody can help people remain mobile and prevent falls and broken hips. Eye tests can alert people to the need for new glasses and of cataracts. For someone with dementia, these symptoms can be developing, without the person requesting help. Proactive screening needs to take place to pick up symptoms early. Unfortunately we regularly hear about people in care homes developing very serious symptoms and conditions, such as cancers that could have been picked up and treated far earlier.
What barriers face older persons, and their families, seeking to voice their concerns about possible abuse, neglect or discrimination in healthcare?
32. Inability to speak out
Dementia gradually robs people of their ability to speak out about abuse, neglect and discrimination. This makes people with dementia especially susceptible to abuse. If someone with dementia is sitting in soiled clothes, hasn't eaten for 24 hours and has been handled roughly to get them out of bed, they may not tell anyone about it. Reporting of distress is far more likely to happen if the person with dementia has someone such as an articulate relative who can speak out for them and when the care providers encourage feedback. This is why the role of independent advocates is crucial in supporting people with dementia to make their views and preferences known.
33. Ignorance and low expectations
Very often people will act as grateful recipients of services and as such don't feel in a position to question or request additional or different help. It is very common for people to respond that they 'don't want to complain because they know that the home or the ward is short staffed and that they are all doing their best'. It is also clear that people do not have enough information to be clear about the standards of care that they should be entitled to expect. For example the Alzheimer's Society Dementia Helpline regularly takes calls from people asking what their rights are to be involved in decision making about health and welfare decisions.
34. The new rights which come in under the Mental Capacity Act this year will significantly improve and clarify people's legal rights to be consulted about care and involved in decision-making. However, cultural change to embed the principles of the Act will take longer and may require litigation before we see significant improvements in areas where the worst practice persists.
People with dementia and their families can be fearful of complaining because of the ramifications that it can have. An Alzheimer's Society outreach worker was recently supporting a family that had requested that bedding be changed more frequently. The response from the care home manager was that "if they didn't like it, they could find somewhere else".
36. Will it make a difference?
When people with dementia or their families do complain about poor treatment their experience is very mixed. Sometimes complaints are handled very well. For example, we have heard of cases where carers have been invited to come and speak to ward staff meetings about the needs of people with dementia, following complaints. However, we have heard of far more instances where a complaint results in a very weak apology with no offer to try and improve standards in future. This poor experience of complaint handling leaves many people with the view that it is not worth doing so again.
Could older persons receiving treatment in hospital, or in residential care, be informed about human rights principles? If so, how could better information and involvement be achieved?
37. Human rights principles do not come easily to older people who often view the Human Rights Act as a legal tool that is used and abused. It is also perceived as being a legalistic approach and this discourages people from making use of human rights arguments. Beyond the populist reaction, human rights also seem alien to people unless particularly violent forms of abuse such as physical or sexual abuse take place.
38. A question in this context would be whether it is useful to frame the discussion in terms of 'human rights' if seeking to encourage older people to make more use of their rights? Typically the Alzheimer's Society seeks to inform and encourage people to make use of their 'rights', rather than 'human rights'. The term 'rights' seems to have more immediate meaning for people with dementia and their families. With knowledge (and in some cases suspicion) about the Human Rights Act and what 'human rights' actually means being limited it seems more plausible to think in terms of encouraging people to use human rights principles in the context of their rights, rather than always highlighting 'human rights'.
39. However, increased emphasis on human rights would be of significant benefit to older people. There are a number of respects in which this could be achieved.
· The public sector and voluntary sector can do more to emphasise the human rights principles for older people. This could be achieved by focussing on areas of particular concern such as information and support for families, informing people of their rights on entering a hospital or care home and during discharge from hospital.
· An opportunity is presented by the Mental Capacity Act to inform people about human rights principles. The Act itself is a good example of human rights based law and publicity on the Act should emphasise that the Act is a major advance in delivering improved rights for people who may lack capacity.
· The new Commission for Equalities and Human Rights will have a major part to play in encouraging public bodies to recognise their positive duties under the HRA. The CEHR must consider how to promote the rights of particularly vulnerable groups such as people with dementia.
· Regulators could be clearer about requirements under the HRA.
· People should be encouraged and supported through the complaints process as necessary. Too often the way that complaints are handled discourages people from complaining.
· Tackling the question of the care home exemption from the HRA is a fundamental requirement.
What examples are there of healthcare professionals or other workers, or advocates for older persons, using human rights principles to secure dignity of older persons undergoing treatment for physical or mental illness?
40. Advocacy schemes are developing across the country and while they vary in their design and purpose are built on human rights principles. Some advocacy services are accessible to older people with dementia and some are not. An example would be the advocacy support worker in the Gateshead branch of the Alzheimer's Society who helps people with dementia and their families to make decisions about moving into care home or their care preferences. We would like to see more emphasis on these types of support. The current arrangements for Independent Mental Capacity Advocates (IMCA) under the Mental Capacity Act are welcome but vastly inadequate in terms of meeting unmet need.
41. Some hospitals employ dementia nurse specialists who can provide advice to others about how to care for people with people with dementia. They can be called upon to give on-the-spot training or advice. Ideally all staff that come into contact with people with dementia should have dementia care training. However, the development of more clinical leads can be very helpful.
42. In care homes we would like to see more emphasis on involving families in the development of care. Many homes have relatives and residents groups that are consulted about how the home is run and how people are cared for. This type of activity ensures a positive ongoing dialogue about changes that are required.
43. Alzheimer's Society outreach workers and carers will often go into hospitals to talk to ward staff about the needs of people with dementia. This can help nurses and care assistants to better understand needs and ensure that good standards are upheld.
What are the main practical, management and resource considerations facing those working in healthcare settings, including residential homes, when seeking to protect the human rights of older persons in their care?
44. A serious consideration of human rights in hospital and care home settings will require a cultural change that will put consideration of rights at the centre of care. There is a great deal of positive practice. However, when nurses do not have enough time to look after holistic needs on hospital wards and care workers in care homes do not have basic training to be able to understand the needs of people with cognitive impairment, care which follows human rights principles has been a low priority.
45. The following issues need to be tackled as a matter of urgency if we are to see a fundamental change in the position on the human rights of older people:
· recognition of the importance of personal care tasks as part of person centred care. For example, moving someone with the use of a hoist or helping someone with intimate personal care tasks must be done in a sensitive way.
· dementia care training should be a core and substantial part of training for nurses.
· dementia care training must be mandatory for healthcare assistants. We would recommend that the National Minimum Standards for Care Homes should include specific requirements for dementia care training and reference to human rights principles.
· practical steps must be taken to identify neglect and to learn from it when it does occur.
· the Mental Capacity Act must be used as a vehicle to drive up standards.
· more advocacy support must be put in place to ensure that people's preferences are reflected in care plans and practice.
46. Some of these issues do have serious resource implications. However, many are about providing on-the-job training and leadership to deliver cultural change. Regrettably it may take sticks as well as carrots in the form of litigation before we see the cultural change that is required on a more fundamental level.
Do NICE and the Healthcare Commission take sufficient account of the human rights of older persons in their work?
47. The National Institute for Health and Clinical Excellence (NICE) have a very important role to play in the management of public health resources. The Alzheimer's Society supports the existence of NICE and the function it has to perform. However, we have serious misgivings about the way that NICE fails to consider human rights in its work and the implications that this has for people with dementia.
48. The Alzheimer's Society has been campaigning since 2005 when the National Institute for Health and Clinical Excellence (NICE) said that no one with Alzheimer's disease should be able to access Alzheimer's drugs on the NHS. Although NICE reversed their decision on access to treatment for people in the moderate stages of Alzheimer's, we remain concerned that thousands of people in the early and late stages of the disease will be refused treatment and that is why we are involved in Judicial Review proceedings against NICE. Through the appraisal process we have been concerned that NICE's process does not take account of human rights in a number of key respects.
49. Failure to consider carers and families in evaluations
Older people and people with dementia are often very reliant on family carers. One of the key criticisms of NICE in the appraisal of Alzheimer's drugs is that they have failed to adequately take account of the benefits of treatment to carers, as well as people with dementia. Stated health and social care policy is to consider the health and well being of people in the context of families. NICE have argued that there is insufficient trial evidence on carer benefit to introduce an element into the evaluation. However, documented evidence from thousands of carers and eminent clinicians is substantial enough to argue that NICE should have placed more emphasis on evidence from patient groups in the absence of trial evidence.
50. Failure to consider the use of powerful sedative treatments
In the Alzheimer's drugs appraisal the Alzheimer's Society argued that if the treatments were not available, clinicians would make more use of sedative neuroleptic drugs, which, as described above, can have a very detrimental and dangerous impact on quality of life for people with dementia. Therefore NICE needed to a.) include a cost estimation in the evaluation for the substitution cost of neuroleptics if Alzheimer's drugs were not available, and b.) allow for an assessment of risk, given that the knock-on effect of restricting access to Alzheimer's drugs. NICE refused to consider these questions arguing that the use of neuroleptic drugs was not in the original appraisal scope and also that to introduce an element of harm would be a mistake. This position is at odds with recognising the human rights of people with dementia.
51. Discriminatory impact of strict reliance on diagnostic tools
One of the key criticisms of the recommendation made against the NICE in their Final Appraisal Determination on Alzheimer's drugs is that they recommended reliance on a diagnostic tool which scores people on a scale called the Mini Mental State Examination (MMSE). NICE has stated that only people who score between 10 and 20 on the test can access treatment. However, the test is a verbal reasoning and memory based test that is not sensitive to the varying levels of education that people have or their ethnic background. As a result, reliance on the MMSE as a diagnostic tool, which does not reflect clinical practice, discriminates against people whose first language is not English, and people who have learning disabilities or who have a high level of education.
52. Reliance on the QALY, without wider consideration of factors
Making judgements about quality of life in dementia is an issue that health economists have struggled with. Although research is developing there are currently no tools that enable researchers to systematically map quality of life against interventions for people with dementia. In their appraisals NICE employ a health economics tool called the Quality Adjusted Life Year (QALY) to assess whether treatments are cost effective. In the case of dementia this tool is not especially helpful and this is why the QALY was not used for the 2001 NICE guidance on the Alzheimer's drugs.
53. In the 2004-2006 appraisal Nice decided that the QALY would be used, despite recognising its deficiencies. The Alzheimer's Society, Royal College of Psychiatrists and others have pressed NICE to consider giving stronger weight to patient evidence about quality of life benefit in the absence of reliable data. This is something that NICE has refused to do. This inflexibility means that the experience of thousands of people with dementia, carers and clinicians has been ignored.
54. A further concern in the context of this enquiry is that the QALY methodology has an in built bias against older people in two key ways. Firstly, because QALY assesses benefit on the basis of the number of years lived, older people, who tend to have a shorter life expectancy than younger people do not fare as well. Secondly, because older people have a higher level of co-morbidities and are very likely to suffer from a range of disabilities, the potential to increase quality of life is naturally lower than for someone without co-morbidities. We would argue that either, a.) There needs to be a way of correcting this imbalance built into QALY, b.) Another tool needs to be developed which recognises mental health needs and those of older people better, or c.) The QALY needs to be treated with caution and other evidence such as patient experience given more weight. In the current context option C would seem the best option available.
55. Paper on social value judgements.
The social value judgements paper which NICE produced in 2005 was a watered down version of a highly controversial proposal that age discrimination could be appropriately used as a tool for rationing treatment where it is an indicator of benefit or risk. It now states that age can be taken into consideration. The Alzheimer's Society is very concerned that this approach runs counter to Standard 1 of the National Service Framework for Older People that states that there must be no policies in the NHS that discriminate on the basis of age.
56. The Healthcare Commission is more explicit in its treatment of Human Rights, having produced a statement of intent in 2005 emphasising its commitment to the inclusion of human rights in its work. Their statement includes a specific action plan that they have committed to completing which covers both the operation of the Commission's work and the intention to check that healthcare organisations are delivering on their public obligation to promote human rights. Time will tell whether this positive intention is being achieved. We would recommend that the Commission consider reviewing human rights practice amongst healthcare organisations on a regular basis and producing specific public reports on human rights in healthcare.
57. The human rights of people with dementia in care homes and hospitals are receiving scant attention and there is a widespread failure to deliver care that meets people's needs.
58. The Alzheimer's Society is particularly concerned about the neglect of people with dementia in hospital and care home settings and the limited skills which many health and social care professionals have to support people with dementia.
59. We welcome the interest of the Joint Committee in the human rights of older people and hope that the Committee will be able to deliver some recommendations on how we can move forward.
[i] Prince, M and Knapp, M et al, Dementia UK, 2007. Institute of Psychiatry at King's College London, Personal Social services Research Unit at the London School of Economics, Alzheimer's Society.
[iii] Holmes J, Bentley K, Cameron I, 2003, A UK survey of psychiatric services for older people in general hospitals. International Journal of Geriatric Psychiatry 18: 716-21
[iv] Who Cares Wins, Royal College Psychiatrists, 2005
[v] Margallo-Lana, M et al (2001) Management of behavioural and psychiatric symptoms amongst dementia sufferers living in care environment. International Journal of Geriatric Psychiatry
[vi] Pain in Older People - A Hidden Problem, Picker Institute, 2007
[vii] Lloyd-Williams and Payne, 2002