UNECE highlights strategies to ensure equal treatment and dignity for people suffering from dementia

Dementia affects some 44 million people worldwide, according to current estimates, with numbers of newly diagnosed cases on the rise due to ageing. This is particularly true in UNECE member States which enjoy some of the longest life expectancies in the world.

Dementia is a long-lasting chronic condition, still without a cure, which entails a progressive loss of cognitive capacity and eventual disability. Persons with dementia can live 20 years or more after the diagnosis, experiencing gradual changes in their functional and clinical profile.

People with dementia are particularly vulnerable to discrimination and violation of their dignity since their ability to express needs, preferences and feelings is constrained by their illness. Dignity is extremely pertinent to the topic of dementia, since the way in which affected people are treated influences their own experience of the disease. Maintaining dignity can sustain people with dementia through the challenges posed by the disease. Conversely, the denial of dignity can contribute to the decline of a person’s quality of life, autonomy, health and well-being. However, this aspect has often been overlooked.

The latest UNECE Policy Brief on Ageing  focuses on ways to ensure the dignity and equal treatment of persons with dementia.  It provides member States with recommendations and good practice examples on how the dignity of persons with dementia can be ensured throughout all stages of the disease.

The Policy Brief emphasizes the importance of timely and accurate diagnosis of dementia, reorienting care services towards dignity-focused approaches, supporting participation of persons with dementia both in social life and in the labour market as well as the development of dementia-friendly environments (including legal, physical and social surroundings). It also stresses the importance of further research.

The Policy Brief highlights four levels of factors influencing dignity and non-discrimination of persons with dementia and recommendations are provided for each level:

Ensuring the rights and dignity of persons with dementia should be a principle built into public laws and regulations at all levels of government and in the full spectrum of policy sectors: health and social care, pension systems, transport, etc.

The complexity of dementia should be reflected in the organization and financing of care systems.  Dementia has high financial and social costs: OECD evaluations suggest that USD 600 billion are spent every year globally on dementia care.

The financing of healthcare systems in the UNECE region is often based on systems that do not take into account the specificities of dementia. While national health and/or social care plans are common in the UNECE region, national strategic plans for dementia are relatively new or non-existent. Examples of comprehensive dementia plans include those recently launched in Norway and Switzerland, while Austria is in the process of developing a strategy.

Dignity can be protected through the maintenance of an active and meaningful role for people with dementia in the community and in the labour market.

Positive examples such as the British writer Terry Pratchett show that being diagnosed with dementia does not need to put an end to an active and engaged lifestyle. After learning he had Alzheimer’s disease, Terry Pratchett continued working on his novels, started an intense fundraising campaign for dementia research and worked with the BBC on a successful two-part documentary about his illness.

The participation of people affected by dementia in social activities also needs to be promoted, since social interaction is of particular value.

Discrimination and loss of dignity can also be a consequence of inadequately-designed physical environments. As the disease progresses, affected persons develop their own special needs in relation to safety and privacy.  An example of a policy contributing to the creation of dementia-friendly environments is the housing adaptations policy in Sweden, which facilitates adapting some 73,000 houses every year.

Dementia can go undiagnosed for several years. On average it takes 2.8 years after the first appearance of symptoms for a diagnosis of Alzheimer’s disease to be given. Access to a timely and correct diagnosis is therefore extremely important. 

As the severity of dementia advances, the affected person requires increasing support from the social and health care systems.   Care services need to be adequately funded, dedicated services available and staff adequately trained.  Research has shown that inadequate and/or low quality care might lead to an inappropriate use of health care resources (e.g. antipsychotics) and malpractices (e.g. use of physical constraints).

France and the UK have worked extensively to reduce the use of antipsychotics and demonstrated the link between a high quality of care and the decreased need for antipsychotic (neuroleptic) treatment. The awareness of such a link should inform strategies to optimize care interventions for people with dementia.  

Making the hospital environment more suitable to the needs of people with dementia is a challenge, but several good practices are available from UNECE countries.

Furthermore, the topic of ‘dying with dignity’ is important for those in the most advanced stages of the disease, as well as for their families and for health professionals. Research has demonstrated the importance of developing closer links between palliative care teams and specialists, both in hospitals and at the community level. People with dementia should have the possibility to choose the place where they wish to die. Access to palliative care outside a hospital environment, however, needs to be improved in most UNECE countries. In addition, the specific needs of people with dementia, as compared with those without cognitive impairment, must be better recognized and catered for in the provision of such care.

Dementia has been described as a ‘family disease’, because family members are generally the main, if not the only, caregivers. They often have to reduce or stop working and can themselves develop serious health conditions as a consequence of care-related stress and anxiety. Available evidence shows that they are exposed to an excess mortality risk compared with caregivers of older people with conditions other than dementia.

Dignity and non-discrimination can only be ensured when measures are taken at all levels and tailored to the needs of the individual. A multilevel and comprehensive strategy, such as the Dementia-Friendly Communities programme by the UK Alzheimer Society, is indispensable for coordinating the efforts of all stakeholders.

Archetype projects from many UNECE countries illustrate how policy recommendations can be put into practice. Dignity is best maintained not by immediately directing all possible services and provisions to persons diagnosed with dementia, but rather by carefully targeting services which correspond to actual need while explicitly recognizing, and capitalizing upon, the capacities and wishes of the individual.

All the briefs in the series suggest concrete policy measures, offer a checklist to policymakers and illustrate the strategies suggested with a series of real-life examples of good practice from across the region, showing how these approaches are already being used.