This week's report published by the Alzheimer's Society has highlighted the growing number of people living with dementia and the impact of dementia on their lives and the lives of their families.
Two particular issues arise. First the unfair 'dementia tax' on those with the disease and second the lack of support for family carers.
There is a big question for policymakers - why should people with dementia not get the level of support and care that people with cancer for example get?
Many of those people who leave reviews on Good Care Guide (www.goodcareguide.co.uk) are those coping with dementia in a member of their family so we see first-hand the difficulties they face. One of these difficulties, along with the utmost pain of seeing a loved one disintegrate into a shadow of themselves is the large bills they need to pay for their care, whether they live in their own home or in a care home.
The government argues that they are introducing a cap on care costs in 2016. But that cap is a con.
Set at £72,000, the cap will only cover care costs for people with high needs (not the full cost of residential care) and in many instances it will take at least five years before reaching the cap as families rack up huge bills. Even then, families would still face more bills once the cap has been reached.
Those most penalised by this policy will be older people with dementia who in essence are being asked to pay a dementia tax because they have been unlucky to get the disease. Care funding needs to be sorted out properly by the next government.
The other people paying the price are the family carers looking after people with dementia. Often they struggle on with little or no support.
So what could be done to make carers' lives easier? Here are six starters:
- Good advice and information and being able to talk to other carers facing similar issues
- Good health and care services from the GP making an initial diagnosis to specialists, and well trained care staff experienced in dementia care
- Respite support to provide breaks from caring and opportunities to live a normal life
- Employers who are understanding about carers' responsibilities, particularly in emergencies
- Better financial support for those carers who can't work or have to give up work
- A local network of support and services that carers can rely on
A new national strategy for carers should contain these six elements as a minimum.
If we don't support 'people helping people', our society will be considerably weakened. The challenge of dementia and supporting carers is growing by the day. It demands action now.