Alzheimer's Society still campaigning for 'free nursing care' for people with dementia

Barbara Pointon cares for her husband, Malcolm, who has Alzheimer's disease.

Alzheimer's is a progressive disease of the brain that is severely debilitating and eventually terminal. It is not merely a symptom of old age. As the disease progresses people with dementia need high levels of care. The government's definition of free nursing care is defined so narrowly that people with dementia are still having to pay for their own care. Moreover, the artificial division between nursing and personal care is undermining the provision of good quality care for people with dementia.

People with other terminal illnesses such as cancer are not required to pay for their health care.

Mrs Pointon's case highlights the inadequacy of 'free nursing care' for people with dementia. Barbara, a member of the Society, has been caring for her husband Malcolm since his diagnosis of early onset Alzheimer's in December 1991 at the age of 51.

Malcolm is now 62 and in a very advanced stage of Alzheimer's.

He can do nothing for himself nor hold anything in his hands. He has no mobility and cannot wash, dress or feed himself. He is also doubly incontinent.

He has no speech and cannot understand the speech of others. He is losing his sight and is often unable to understand where he is in space and so thinks he is falling, flying or upside down - which results in quite violent panic attacks. He is gradually forgetting how to swallow, which leads to choking.

Malcolm is a large man - weighing over 13 stone - and his carers need to move him, using a hoist, into different positions several times a day to avoid pressure sores developing.

Barbara Pointon has been told that the 24 hour, seven day a week care that she and a professional carer give to Malcolm is not nursing care, only personal care, and therefore the NHS is refusing to contribute to its high cost.

Notes for editors

• The Alzheimer's Society is the UK's leading care and research charity for people with dementia and their carers.
• In 1999 Barbara and Malcolm were the subject of an acclaimed television documentary, directed by Paul Watson, called Malcolm and Barbara - a love story. The fly-on-the-wall documentary followed Malcolm and Barbara for four years as they coped with Malcolm's Alzheimer's disease.
• Over 700,000 people in the UK have dementia. More than half have Alzheimer's disease.
• Dementia affects one in 20 people over the age of 65 and one in five over the age of 80.
• For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336.