Dementia Rights

People with dementia and their carers (family members and friends) have the same human rights as every other citizen.  However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these. This charter aims to empower people with dementia, those who support them and the community as a whole, to ensure their rights are recognised and respected.

Nature of the illness

Dementia is an illness that over time affects the capacity of individuals to make some or all decisions about their everyday lives, including their money, health and welfare.  It gradually affects their ability to communicate, reason and act in their own interests.  The illness severely compromises their ability to protect their own rights; because of this people with dementia are often at greater risk of violence, injury or mental abuse, neglect or negligent treatment, maltreatment or financial exploitation.

Inadequate and inappropriate services

There is evidence from research, inspections by scrutiny bodies and consultations that people with dementia and their carers do not receive, for the most part, the proper support, care and treatment they need to continue to live fulfilling lives. Services for people with dementia across Scotland are generally poorly resourced, patchy and often inappropriate, sometimes commissioned and provided by staff with very little knowledge of the illness. This is not due to any lack of models of good practice and high quality services in Scotland but to a systemic failure to mainstream dementia care and ensure that a comprehensive service is available to all from early diagnosis to end of life care.

Attitudes in society

People with dementia still face stigma and discrimination in society as well as lack of equity of access to high quality dementia care services. Awareness raising campaigns to increase public understanding are beginning to change attitudes to dementia.  However, changing attitudes and practices to ensure that the rights of people with dementia are fully recognised continues to be a major challenge for bodies responsible for the provision of health and social care. In addition to distressing accounts from carers and people with dementia, there is a growing body of evidence to support the view that the rights of people with dementia are being overlooked, neglected or in a few individual cases, deliberately breached. 

Unmet needs of carers

Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness and may have a profound social, emotional, physical and financial impact on carers, including increased risk of stress related illness such as depression.  Many carers feel that their views and needs are overlooked by health and social care professionals and that their right to support as partners in the provision of care is not well recognised.

The Cross-Party Group in the Scottish Parliament on Alzheimer’s, therefore believe that a Charter of rights is needed to;

• empower people with dementia and their carers to assert their rights in any in every part of their daily lives and wherever they are;
• ensure that those who provide health, social care and other services understand and respect the rights of people with dementia and their carers;
• ensure the highest quality of service provision to people with dementia and their carers.