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A fairer system of charging for care

Evidence on how charging affects people with dementia

Alzheimer's Society believes that radical change is needed to the system of charging for care, based on the experiences of people affected by dementia today. 

The Dementia Tax 2008

In 2008, the Society published The Dementia Tax, which described how charging affects people with dementia and their carers. The Dementia Tax 2008 found:
  • Although unpaid carers deliver the majority of care to people with dementia, many people also need significant amounts of care and support from care services arranged through social services, often for a long period of time. Individuals pay significant amounts towards the cost of this care
  • Charging affects people from all kinds of backgrounds, including those on low incomes because of the means-test thresholds
  • Services for people with dementia are limited and vary considerably in quality
  • The state has a responsibility to make a significant tax-funded contribution towards the cost of dementia and people are only willing to make a contribution if good quality care can be guaranteed.

The Dementia Tax 2011

A further survey with over 3,700 people with dementia and carers in 2011 asked for people's experiences and views in relation to insurance for social care. It found that just three per cent of people with dementia have long term care insurance. The Dementia Tax 2011 report also found that:
  • A quarter of people with the condition said they would have bought insurance if it was more affordable
  • 52 per cent of carers said they or their loved one had to contribute to the cost of their care
  • Nearly half of all people surveyed (44 per cent of carers and 49 per cent of people with dementia) said on reflection, they did not wish they had taken out insurance
  • The main reasons people did not take up insurance were: not knowing it exists; not anticipating care needs; not knowing that people have to contribute to care costs.

Alzheimer's Society consultation responses

  • Alzheimer's Society response to the 2009 Welsh Assembly Government Green Paper on the future of paying for care in Wales
  • Alzheimer's Society response to the Dilnot Commission on Funding of Care and Support call for evidence in December 2010.
  • Alzheimer's Society response to Health Committee Inquiry into Social Care in 2011
  • Alzheimer's Society response to the Draft Care and Support Bill in 2012
  • Alzheimer's Society response to Draft national elgibility criteria for social care in 2013
  • Alzheimer's Society response to the Department of Health's 2013 consultation on 'Caring for our future', which gives more detail on the implementation of Dilnot proposals

Find out more

Further information on all our consultation responses