Equality, discrimination and human rights
People with dementia face widespread discrimination for a number of reasons. There remains significant misunderstanding about and stigma attached to dementia that manifests itself in widespread discriminatory attitudes. Because most people with dementia are over the age of 65, they can also face issues of age discrimination. People with dementia are also more at risk of discrimination and infringements of their human rights because they may not have the capacity to challenge abuses of their human rights or to report what has occurred. This means that many people with dementia and their carers face a poorer quality of life than the general population.
Alzheimer's Society exists to champion the rights of everyone with dementia and those who care for them. People with dementia and those who care for them should be treated with dignity and respect, and should have access to high quality care, that is based on an assessment of personal needs and preferences, rather than prejudiced assumptions about dementia. For people with dementia to be able to play a full part in community, society must prioritise the eradication of discrimination and tackle the stigma attached to dementia.
Poor quality care and support breaches the rights of people with dementia and their carers. These include the right not to be treated in an inhuman or degrading way, the right to respect for private and family life and the right to liberty. People with dementia and their carers are also confronted daily by discriminatory attitudes about dementia, including assumptions about the quality of life possible with dementia, fear of dementia and ageism.
3. Reasons people with dementia are at particular risk of discrimination include:
- Attitudes towards dementia
People over the age of 55 fear dementia more than any other condition, including cancer. Yet public awareness about dementia, its symptoms, the importance of getting a diagnosis and the help that is available for those with the condition is limited. An Alzheimer's Society survey found that half of all UK adults believe dementia remains a condition plagued by stigma.
There is a widespread lack of awareness of dementia, its symptoms, its scale and its impact on families. There are also a number of misunderstandings about dementia - that it is a natural part of ageing, that it only affects older people and that nothing can be done to help people live well with it. This lack of understanding and awareness results in fear and, ultimately, the lasting consequence is stigma. This means that while in principle people are sympathetic to others living with dementia, the usual behaviour when confronted with someone with dementia is avoidance. People with dementia and carers often refer to the stigmatising effects of diagnosis, the attitudes they encounter towards dementia and the profound effect this has upon them and their families, resulting in them becoming socially isolated.
The fear and stigma that surrounds dementia can also deter people from talking to their GP about symptoms or to try to cover up their symptoms. Sometimes close family members may also try to cover up the fact that the person with dementia is experiencing problems.
- Impaired mental capacity
The impairment in mental capacity caused by dementia can make people with dementia particularly vulnerable to discrimination and infringements of their rights. For example, they may be excluded from discussions about their care because their views and preferences are not seen to be valid or perceived to be a result of their condition, rather than a legitimate preference. When this occurs, the person with dementia may also be less able to object, or to challenge decisions that have been made on their behalf. Under the Mental Capacity Act a person must be presumed to be able to make their own decisions "unless all practical steps to help him (or her) to make a decision have been taken without success". This must become a reality for people with dementia.
Age discrimination inevitably impacts on people with dementia. The prevalence of dementia increases steadily with age, with the proportion of people with dementia doubling for every five year age group. Poor support and unjust treatment for older people mean many people with dementia are hit twice as hard. For example, research shows that older people are denied access to the full range of mental health services that are available to younger adults. This particularly disadvantages people with dementia who are often over 65 and in need of mental health support. There are also widespread, mistaken assumptions that dementia is merely "getting old", rather than a serious disease. This has led to unequal treatment for people with dementia, including poor rates of diagnosis and a lack of appropriate services.
4. Instances where people with dementia face discrimination and infringements of their human rights include:
- Poor quality care
People with dementia can live well with a high quality of life for many years following diagnosis, provided the right care and support is available to them. To date, there has been a failure to deliver the services and support that people with dementia need to have a high quality of life. A series of reports have found highly variable standards of care in people's homes, in hospitals and in care homes. Health and social care professionals have not had the specific skills or knowledge required to understand the particular needs of people with dementia. In many cases, services for people with dementia are non-existent.
The Society believes that poor quality care in itself is a breach of the human rights of people with dementia. This may include rights to live free from inhuman and degrading treatment, rights to respect for privacy and family life, and the right to liberty and security. Inequality is a daily reality for people with dementia, with serious restrictions on the ability to enjoy a high quality of life created by poor quality and non-existent services, considerable stigma and low levels of acceptance and awareness.
- The system of paying for care
The current system of paying for services and support is inequitable for people with dementia. The majority of the package of care that people with dementia receive is typically provided through local authorities and is means-tested. This means people with dementia end up paying significant amounts towards their care, often for a long period of time. This system is essentially a 'dementia tax' on those with dementia and their carers and penalises people unfortunate enough to develop the condition. It is a great inequality that people with dementia are penalised by this system but those who develop a condition treated by the NHS receive their essential care free at the point of need.
Alzheimer's Society have welcomed the recent publication of the report of the Commission on Funding of Care and Support in England. This is the biggest opportunity in a generation to address the current woefully inadequate social care system, and there must now be an open public debate about the future funding of care and support. Alzheimer's Society will be considering the recommendations of the Commission and what they could mean for people with dementia and their carers to ensure that their views are represented in this debate.
Abuse is a serious infringement of the Human Rights Act and has a severe impact on quality of life. People with dementia are particularly vulnerable to abuse. Impaired mental capacity increases the risk of abuse and a person's dementia can make it harder to detect when abuse is occurring. Abuse can occur across all care settings, including by care workers and professionals in formal; care settings and by unpaid carers, family members, neighbours and strangers in informal care settings. It can take the form of psychological, financial, emotional, sexual or physical abuse. The Society believes that poor quality care must also be recognised as a form of abuse.
- The over-prescription of antipsychotic drugs
The widespread over-prescription of antipsychotic drugs to treat the behavioural symptoms of dementia is a serious breach of rights. Antipsychotic drugs have serious risks for people with dementia including excessive sedation, accelerate cognitive decline and increased mortality. The failure of the health and social care system to respond safely and effectively to dementia is a major barrier to people with dementia and their carers accessing safe and effective interventions. Anti-psychotics should always be a last resort, used only at times of severe distress or critical need. Alzheimer's Society supports the Dementia Action Alliance's call to action to ensure that anyone with dementia who is receiving antipsychotic drugs receives a clinical review by March 2012.
- Age discrimination towards younger people with dementia
Over 17,000 people in the United Kingdom have young onset dementia and are strongly affected by mistaken attitudes that dementia is solely an older people's condition. This creates serious barriers to diagnosis for younger people with dementia.
Discriminatory assumptions also have a severe impact on access to services and service quality for those with young onset dementia. There is a chronic shortage of age-appropriate services for those people who develop dementia before the age of 65. This means that it is particularly difficult for younger people with dementia to access care and support that addresses their specialized concerns. For example, younger people are more likely to have dependent children at the time of their diagnosis, may experience greater difficulty rationalising loss of skills at a younger age and may have greater capacity for physical activities. However, the majority of dementia services are aimed at older people and are not always appropriate or satisfying for younger people. The result of this is that younger people with dementia and their families are particularly at risk of becoming socially isolated, as young-onset dementia is less common and not well understood.
For further information please see our position statement on services for younger people with dementia.
4. The Equality Act 2010
The Society welcomed the introduction of the Equality Act 2010 which replaced previous discrimination laws, bringing them together under one piece of legislation. It makes it illegal for people to be treated less favourably because of their age, disability, gender, race, religion or belief, sexual orientation or transgender. The Equality Act was introduced in October 2010 and most of it came into force in April 2011, although some parts will not come into force until 2012. This includes the provisions concerning age discrimination and health and social care, which the Society will be monitoring closely.
The Act will make it legal to discriminate on the basis of age but only where this is 'objectively justifiable'. This is to ensure that age discrimination that has a positive consequence, for example free flu vaccination for people over 65, can continue lawfully. The Society feels objective justification is appropriate and necessary because it is important that decisions regarding exceptions in care and treatment are based on clear, objective principles. This is particularly true in the case of dementia as:
- The effect of dementia on communication and capacity create a higher risk that people's preferences are overlooked by professionals in the decision-making process.
- Negative and mistaken assumptions about quality of life for people who have dementia rooted in ageism make the need for clear, objective principles crucial and will ensure the law achieves its aims.
Despite the introduction of the Equality Act, Alzheimer's Society remains concerned that people with dementia and carers will continue to experience discrimination. The inequality experienced by people with dementia is multi-faceted, influenced not only by discriminatory attitudes towards age and disability, but also the stigma attached to their condition. This has affected the historic design and delivery of care and support services resulting in variable quality of care and limited access to support for people with dementia. There must be significant work to increase understanding of dementia and dispel the stigma attached to the condition, so that people with dementia no longer receive poor quality care and can participate fully in their community.
The act incorporates a general duty for public bodies to fully consider the impact that change in their policy will have on anyone with a 'protected characteristic', such as a disability. This is especially crucial where there are threats to local authority services for vulnerable people. It can ensure that the consequences of the cuts in services for people with dementia are fully considered.
The act also continues the duty of service providers and employers to make reasonable adjustments to make sure people with disabilities are not put at a substantial disadvantage. This can range from making reasonable adjustments at work to cope with the effects of dementia - to a property management company's installing key locks to enable better access to visitors of people with dementia.
The provisions of the Act, apart from a few exceptions, only apply to Great Britain and will not change equality law in Northern Ireland. In recognition of the need to streamline and modernise Northern Ireland equality law and to keep pace with developments in Great Britain, the Equality Commission for Northern Ireland has put forward a number of proposals for urgent legislative reform in this area. Alzheimer's Society will be monitoring progress in this area.
5. Findings from Dementia does not discriminate
In July 2013, the All Party Parliamentary Group on Dementia published a report on the experiences of people with dementia from black, Asian and minority ethnic (BAME) groups. Findings from the report, Dementia does not discriminate, reveal that people from BAME communities are under-represented in services and they are often diagnosed at a later stage of the illness, or not at all.
People from BAME groups face significant barriers when accessing support to services. There is a lack of culturally sensitive dementia services and families can be reluctant to use services that do not meet cultural or religious needs. Even when the burden of caring is considerable, there may be family and community pressure to continue carrying on alone. Previous experiences of hostility, racism may also deter people from seeking help.
It is also important to note that the number of people with dementia from black, Asian and minority ethnic groups is expected to rise significantly and society is not geared up to respond to this pressure. Current estimates suggest there is nearly 25,000 people with dementia from BAME communities in England and Wales and that this number is expected to grow to nearly 50,000 by 2026 and over 172,000 people by 2051. This represents nearly a seven fold increase.
Report recommendations include a real need to raise awareness, better focus on preventative services, ensure local community action, and improve access to services for people from BAME groups.
6. Alzheimer's Society campaigns for:
- A public information campaign to increase understanding of dementia, its symptoms, the importance of getting a diagnosis and the help that is available for those with the condition.
- High quality care, based on:
- Individualised care and support, which builds on a person's abilities and strengths
- Treating people with dignity and respect, offering choice and safeguarding privacy
- Staff who are properly trained in caring for people with dementia and who are fully supported in their role
- An open public debate about the proposals made by the Commission on Funding of Care and Support in England, and similar debates in Wales and Northern Ireland about a fairer funding system for social care, which shares the costs of care beyond those unfortunate enough to develop a medical condition such as dementia and that delivers good quality care at a fair price.
- All people with dementia who are receiving antipsychotic drugs to receive a clinical review by March 2012 in England and for the government in Wales and Northern Ireland to prioritise the reduction of use of antipsychotic drugs for people with dementia.
- Full implementation of the Equality Act
7. References and further information
All-Party Parliamentary Group on Dementia (2013) Dementia does not discriminate. London: Alzheimer’s Society.
Alzheimer's Society (2009). Counting the Cost. Alzheimer's Society: London.
Alzheimer's Society (2008). Home from Home. Alzheimer's Society: London.
Alzheimer's Society (2008). The Dementia Tax. Alzheimer's Society: London.
Alzheimer's Society (2008). Out of the Shadows. Alzheimer's Society: London.
Alzheimer's Society (2007). Dementia UK, a report to the Alzheimer's Society by King's College London and the London School of Economics. Alzheimer's Society: London.
Commission on the Funding of Care and Support (2011) Fairer Care Funding: the report of the Commission on Funding of Care and Support, chaired by Andrew Dilnot
Commission for Social Care Inspection (2008). See me, not just the dementia. Commission for Social Care Inspection.
Healthcare Commission (2009). Equality in later life - a national study of older people's mental health services. London.
The King's Fund (2008). Paying the Price: the cost of mental health care in England. King's Fund: London.
Last updated March 2012 by Tess Saunders, Policy Officer
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