Dementia: Rights and needs

Dementia is a group of brain diseases characterised by severe and progressive cognitive decline that interferes with daily functioning. These deficits may include memory loss, confusion, language difficulties, mood variations and personality changes.

Dementia is the major predictor of morbidity and mortality in the elderly, and it is estimated that around six million people residing in EU member countries have the condition. A recent study has found that, in Malta, one per cent of the population has dementia, a figure that is expected to double by 2035. It is therefore important that dementia care becomes a top health priority for present and future policymakers. This is also in view of the fact that, in developed countries, dementia costs the health services more than cardiovascular disease and cancer put together. According to the World Health Organisation (WHO), dementia contributes to 11.2 per cent of years lived with disability in people aged 60 years and over.

Due to the nature of the condition, there is a significant demand on the family core structure as relatives end up providing the major part of informal care, mostly at home. Community studies show that care-givers of dementia patients are under significant psychological stress, with most of them ending up needing psychiatric care.

In a recent conference on dementia held in Oslo, Norway, Alzheimer Europe adopted the Declaration On The Rights And Needs Of People With Dementia And Their Carers. As citizens of Europe, people with dementia and their carers have the right to the recognition of their needs.

Most importantly, people with dementia have the right to receive information about the disease, treatments and available support; accurate and timely diagnosis; equal and timely access to appropriate drug therapies; have access to specialised services to manage communication, psychological and behavioural problems that may arise during the illness; full involvement in decisions about their own treatment and care; freedom from stigma, discrimination and neglect; a voice in the planning and provision of services aimed for individuals with dementia; help to maintain usual interests, activities, social contacts and spiritual needs as long as possible; a range of home support appropriate to their needs at any stage of the illness; humane and individualised protection under the law when required because of diminished mental capacity and palliative care.

Carers and family members have the right to receive information about the illness, treatments and available support; information about disease prevention, risks, genetic characteristics of the disease and any related factors; recognition by professionals, service providers and policymakers about their social role at all the stages of the illness; involvement, with the consent of the person with dementia, in decisions about treatment and care; freedom from stigma, discrimination and neglect; identification of their own needs and access to services to meet these needs; a range of services that provide respite from caring; recognition of the social, economic and cultural value of their caring role; financial aid to support their caring role and a voice in the planning and provision of services.

Professionals, care staff and volunteers working with people with dementia and their carers have the right to information and education on dementia at all levels, including training to communicate better with people with dementia and their carers; equal status with those caring for people with other chronic and fatal medical conditions and remuneration and working conditions reflecting the importance of their work.

Alzheimer Europe, an umbrella organisation with the aim of improving dementia care in Europe, also supports the role of the media in raising public awareness on the prevalence of dementia and its impact on society as a whole.

Recognition by European and local authorities is also necessary to step up service provision in this area that eventually meets present and future demands. Making dementia a top health priority is a start; the rest is a challenge that we must all face.

Dr Scerri is a lecturer at the Department of Pathology, University of Malta, general secretary of the Malta Dementia Society and a board member of Alzheimer Europe.