Alzheimer's Society supports a rights-based approach to the treatment of people with dementia. People with dementia and carers should be treated with dignity and receive care and support that is based on individual need, rather than assumptions about the condition. In the community, the contribution of people with dementia should be valued.
Too often, people with dementia experience discrimination and treatment that contravenes their human rights. Poor care and support can breach the rights of people with dementia and carers to not 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 can face discrimination and treatment that contravenes their human rights for three key reasons:
· The stigma and discrimination associated with the condition
· Lack of capacity to challenge and report incidents that occur
The Society supports the Equality Act 2010 that makes it illegal for people to be treated less favourably because of their age, disability, gender, race, religion or belief and sexual orientation or transgender. The act requires public bodies to fully consider the impact that changes in policy, such as the closure of a service, have on people with “protected characteristics” such as disabilities. In addition, the act continues the duty of service providers and employers to make “reasonable adjustments” to ensure that people with disabilities are not disadvantaged.
Age discrimination that has a positive consequence may continue lawfully if it is “objectively justifiable”. This includes, for example, interventions such as free flu vaccinations for people over 65. Alzheimer’s Society supports this provision. In the case of dementia this will, for example, allow health and social care professionals to modify decision-making and feedback processes to allow people with dementia, who can struggle to communicate, to participate.
Despite the introduction of the Equality Act, people with dementia and carers continue to experience discrimination and treatment that contravenes their human rights. In many cases, discrimination is embedded in the design and delivery of care and support services. As a result, people with dementia are less likely to receive a diagnosis or post-diagnosis support, than people with other long-term conditions. There must be significant work to dispel the stigma of dementia to challenge this inequality.
2. What Alzheimer’s Society calls for:
- End discrimination because of reduced mental capacity. Lack of capacity can make people with dementia vulnerable to discrimination and treatment that contravenes their human rights. For example, people with dementia can be excluded from discussions about their care and support and lack the capacity to challenge this exclusion. Under the Mental Capacity Act, a person is presumed to be able to make their own decisions "unless all practical steps to help them to make a decision have been taken without success". Alzheimer’s Society campaigns for robust enforcement of this provision.
- End age discrimination towards older people. People with dementia are more likely to be over 65 and, in consequence, can face both ageism and the stigma associated with dementia. For example, older people are often denied access to the full range of mental health services that are available to younger adults. This particularly disadvantages people with dementia who are more likely to be over 65 and require mental health support. There is also widespread assumption that dementia is merely "getting old" rather than a serious disease. This has resulted in unequal treatment for people with dementia, including poor rates of diagnosis and a lack of appropriate services.
- End age discrimination towards younger people. Dementia is not just an older people's condition. In 2013, there were 42,325 people with early-onset dementia (onset before the age of 65 years) in the UK (Alzheimer’s Society, 2014). Younger people with dementia can face discrimination. They may be forced to give up work, excluded from dementia services with a minimum age criterion, forced to travel considerable distances to access appropriate services or left without support. For more information, please see our position statement on younger people with dementia.
- Improved support for people from black, Asian and minority ethnic (BAME) communities. The number of people with dementia from BAME communities is expected to increase seven times by 2051. However, people from BAME communities are less likely to be diagnosed or receive post-diagnosis support (All-Party Parliamentary Group on Dementia, 2013). People from BAME groups face significant barriers when accessing support. 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. Alzheimer’s Society calls for increased awareness, better focus on preventative services, local community action and improved access to services for people from BAME communities.
- Improved care and support. The importance of good quality care is highlighted in dementia strategies and action plans in England, Wales and Northern Ireland dementia strategy. However, there is currently unacceptable variation in the quality of formal care provided to people with dementia. The Society believes that Poor care and support can breach the rights of people with dementia and carers to not be treated in an inhuman or degrading way, the right to respect for private and family life and the right to liberty. For more information, please see ourposition statement on formal care.
- Robust action on abuse. Abuse is a serious infringement of the Human Rights Act. People with dementia may be subject to mistreatment and abuse in the community or in care homes and hospitals. This may include psychological, financial, emotional, sexual or physical abuse, including the inappropriate prescription of anti-psychotics. For more information, please see our position statement on abuse and mistreatment.
- Fairer care funding. Alzheimer’s Society has campaigned for many years to end the “dementia tax”. At present, two-thirds (£17.4 billion) of the cost of dementia is paid by people with dementia and their families, either in unpaid care (£11.6 billion) or in paying for private social care (Alzheimer’s Society, 2014). This is in contrast to other conditions, such as heart disease and cancer, where the NHS provides care that is free at the point of use. For more information, please see our position statement on charging for care.
- Continued action on inappropriate prescription of antipsychotic drugs. People with dementia are often, and inappropriately, prescribed antipsychotic drugs used to treat schizophrenia. This is extremely harmful. Inappropriate prescription of antipsychotic drugs contributes to 1,800 deaths a year death (DH, 2009a). For more information, please see our position statement on antipsychotic drugs.