Alzheimer's Society welcomes statement on long term care

Neil Hunt, Alzheimer's Society chief executive, says:

'The Government's current policy on long term care is failing people with dementia. Our members tell us the system continues to discriminate against them. While people with other major diseases, such as cancer, receive free care on the NHS, people with dementia do not. Our members ask why they have to pay for their care when people with other conditions do not.

It is fundamentally unfair that the government's definition of "free nursing care" excludes most of the personal care which people with dementia need and which arises directly from their illness.'

The Alzheimer's Society believes the Royal Commission's original recommendations will put an end to the inequity and confusion of current long term care provision. The proposals would create a fair, workable and sustainable system of long term care.

'People with dementia are the largest group affected by this issue; 75 per cent of people needing long term care will have Alzheimer's disease or another form of dementia.'

Case studies

'My wife has Alzheimer's and I have been caring for her for 12 years, with the last eight being the worst, in that she has completely lost any abilities of movement, comprehension, is incontinent and requires 24 hour care, needing to be moved by hoist from one position to another. Because the care she requires is not categorized as "nursing", any care we receive at home for her is means tested. This situation is discriminating against my wife who is ill with an incurable disease.'

'Medical attention given in a nursing home qualifies for free nursing care but not apparently the care needed to sustain a minimum standard of a healthy normal life. In my search for answers as to what should reasonably constitute nursing care I have found no justification in dictionary definitions or in training manuals for nurses for the artificial distinction between nursing and personal care. In all cases, even though a particular role may have been delegated, the nurse is considered responsible not simply for administering medical treatment but for the total well being of their patient and this includes diet and feeding, toilet, washing and care to prevent bedsores, teeth, hair and nails. Discrimination is caused to dementia patients because the bulk of care needed is not defined as medical treatment.'

'We pay, from my mother's own resource, for her to live in a nursing home with a specialist elderly mentally infirm unit as she now needs 24 hour specialist care. The cost of this care is £1,416 per month (the sole government contribution to this is £335 per month Attendance Allowance). The quality of care in the care home is exemplary. At the moment the government thinks that my mother does not need "nursing care" and so, apart from attendance allowance, there is no contribution to her care... I wonder what would the public reaction be if similar methods of dealing with physical illness were employed.'

'My husband is 62 and was diagnosed with Alzheimer's disease 11 years ago. He is now in the last stages of the disease and unable to do anything for himself. He has no speech, cannot understand what is said to him, is practically blind, has no mobility, is doubly incontinent and his swallowing mechanism is faltering. He suffers from fits (part of his particular form of dementia), also any sudden movements provoke violent panic attacks. He has to be hoisted between bed and chair, changed, washed and dressed, and feeding him can take up to an hour. It is also a very skilled job communicating with him in non-verbal ways in order to meet his emotional and psychological needs.  The Government's artificial distinction between personal (social) and nursing (health) care is simply unworkable and discriminates unfairly against people with dementia and their carers¥Ã–_ This discriminates against most people with dementia, even in the last stages, despite the fact that they are suffering from an organic disease of the brain which is gradually shutting down all their abilities to function as a human being.'

Notes for editors