Dementia is the loss of higher mental functions; it involves the impairment of memory, personality and the ability to plan and carry out complex tasks. The main cause is massive cell death in nearly all parts of the brain and it is a gradual, progressive and irreversible disease. The most common form of dementia is Alzheimer's Disease, which accounts for 55% of cases. At present there is no known cause, although a great deal of research and investigation into the disease is being done. As a result of some of the research it has been realised that, as people age, they become more vulnerable to Alzheimer's Disease. Multi-Infarct Dementia is the second most common form of dementia. This represents 25% of cases. It is caused by a series of small strokes within the brain and the course of the illness fluctuates with each small stroke. The rarer forms of dementia account for 20% of cases. These types include Huntingdon's Chorea, Aids-related Dementia, Fronto Temporal Lobe Dementia, Lewy-Body Dementia and Pick¹s Disease. Diagnoses of the different forms of dementia are difficult and complicated and involve undergoing a through assessment by a specialist doctor. True diagnosis of Alzheimer¹s Disease can only be made after death by post-mortem, when the presence of "neurofibrillary tangles" in the brain confirm it.

SIGNS OF DEMENTIA

The first stages of dementia include forgetfulness, withdrawal, exaggerated independence, suspicion and bewilderment. From there it progresses to short-term memory loss, disorientation, loss of inhibition, confusion and loss of ability to perform common everyday tasks - eventually to mental darkness and total dependency on others to take care of the person¹s needs, if it reaches this stage. Dr R L Symonds described dementia as "A dismantling of the human being, starting at the most organised and complex part and proceeding with the failure of the central nervous system components. It involves brain cells death; if no other illnesses were to supervene, it would cause death. It follows that dementia is a form of dying". Dementia has yet to be recognised as a terminal illness. There is a great need for this recognition so people with dementia can be part of the terminal care provision which is now available to other groups of illnesses.

PUBLIC RESPONSE TO DEMENTIA

The attitude of society today is that, although dementia affects people in middle age, it is much more prevalent in the elderly and, because this group of people are nearing the end of their lives and are just waiting for the natural process of death, they can be ignored. This attitude is criminal. It leads to a belief that, because the person with dementia has nothing to offer in any way to the everyday life of those around them, better care would be given to them in an institution. We must recognise that dementia is not a disgrace but a disease and that people who have this tragic disease have very special needs and feelings. Instead of offering a crisis level of service provision we should examine the possibility of offering a collaborative package of care which is not only flexible but which is also appropriate to each individual.

THE EXPERIENCE OF DEMENTIA

The impact of the illness on the individual is unknown. However, whilst they often remain physically very active, they typically display a gradual mental decline which can lead to total isolation from their own environment and social network the decline is often exacerbated by intense loneliness. One carer described the illness as "watching the sparkle fade slowly from the eyes. His eyes reflect nothing - only blankness, terror and confusion. He is no longer the respected and loved husband and father - instead the grey shell of person surrounded by impenetrable gloom, totally dependent on others for his every need". Another carer says it is "a form of living death. It is a bereavement which, is constantly stressed and irritated by the fact that the body has not departed. The body is there as a constant reminder of the person who was loved; it is a hideous momento of what you have lost". People with dementia suffer a total breakdown in human contact and relationships and no one can fully comprehend how they feel. They are locked in a bewildering world of their own, unable to communicate their true suffering. However, although the person with dementia may not be able to communicate their feelings verbally, experienced staff and carers learn to understand the people they care for.

WHAT ABOUT THE CARERS?

The carers themselves face a formidable task - not only in coping with their personal bereavement in the loss of their loved one - but also in coming to terms with their own sense of isolation, social status and identity. They too are locked in a world of caring and this can often lead to depression, feelings of anger, guilt, rejection and worthlessness. Being unable to share their anxieties and frustrations with family or friends who have trouble understanding the illness, carers usually have to carry a demanding and unbearable burden.