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Damning dossier highlights discrimination of people with dementia

Published 14 November 2002

When 'free nursing care' was introduced in 2001 for people paying for their own nursing home care in England, the Alzheimer's Society said that it was 'unfair and unworkable'.

Over one year on, and after detailed consultation with carers of people with dementia, we now have conclusive evidence that government policy is actively failing people with dementia, one of the most vulnerable groups in society.

The report (Is free nursing care unfair and unworkable?) draws upon the experiences of carers of people with dementia over the past twelve months.

The evidence suggests that people with dementia are experiencing five main problems.?

1. People with dementia, a physical disease of the brain, are paying for their health care.

'My husband is in a nursing home, the full fees are £500 a week. I am trying to work out what our financial position might be. I am trying to plan for a period of, say, ten years. We are both aged 74.'
Carer

2. People with dementia are still not receiving the 'free nursing care' payment they are entitled to because care homes are retaining the reimbursement.

'My aunt is self-funding and has recently been assessed as needing medium nursing care. The Home is putting up the fees so she will end up paying considerably more, not £70 less. The Home even had the cheek to add a new charge of £5 a week for administering the new arrangements with the NHS.'
Carer

3. People with dementia are being placed inappropriately in the lower bands of nursing care.

'My Father has Parkinson's, dementia with Lewy Bodies, cataracts and is deaf. He was initially assessed as needing higher band of nursing care but has now been reassessed and put on medium band. The nurse now thinks that he is "stable".'
Carer

4. People with dementia are being told that they do not qualify for 'nursing care' despite having a degenerative, terminal condition.

'My mother is in receipt of nursing care in her nursing home but apparently does not qualify for the "contribution towards the nursing portion of costs" as the nursing is mental not physical.'
Carer?„

5. People with dementia who have highly complex needs, but who live in residential care or at home, are being told that they have 'personal care' needs only, not nursing needs. This group then have to pay for all their care.

'My sister is self-funding in a dual registered home. The Home has written to me to say that my sister now needs nursing as well as personal care.... I knew about the free nursing care and therefore expected the NHS to pick up the bill. My sister has had a nursing care assessment but was told that she does not need nursing care. My sister is padded, drugged, she can stand but can only walk a few steps. I have asked for another assessment.'
Carer

Julia Cream, head of public affairs of the Alzheimer's Society, said:

'Three-quarters of people in long term care have Alzheimer's or another form of dementia. It is clear that the government did not anticipate the implications of 'free nursing care' for people with dementia. We believe that it's vital that the needs of people with dementia are recognised by the NHS and a greater contribution made towards their health care.'

Notes for editors

  • The Alzheimer's Society is the UK's leading care and research charity for people with dementia and their carers.
  • 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.
  • There are 18,500 people in the UK under the age of 65 with dementia.
  • For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336.
  • The Alzheimer's Society is a member of the Right to Care campaign, which campaigns to get all nursing and personal care free at the point of use.
  • Our website address is: http://www.alzheimers.org.uk/