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13 May 2021

Hundreds of thousands of people are still being forced to pay a 'dementia tax'

An Alzheimer's Society campaign says that people with dementia and their unpaid carers are unfairly shouldering the burden of care costs

Alzheimer's Society has launched a campaign to 'Cure the Care System', urging the government to transform the social care system for hundreds of thousands of families living with the effects of dementia.

The charity is calling on the government to introduce high-quality dementia care that is free at the point of use, similar to the NHS.

The 'dementia tax'

Dementia is a progressive, complex condition and the symptoms can make it increasingly difficult for people to carry out everyday tasks like washing, dressing or preparing meals. People with dementia often need support with these activities, either at home or in a care home - a type of help classed as social care.

Around 70% of people in care homes have dementia or severe memory problems. But unlike healthcare on the NHS, social care is rarely free.

According to Alzheimer's Society, the total cost of care for people with dementia in the UK is almost £35 billion a year. The charity says two-thirds of this figure falls to people with dementia and their families - either in providing unpaid care or paying for private social care. Unpaid carers supporting loved ones with dementia save the UK economy about £14 billion a year.

The system is unfair, says the charity, as many people with dementia are forced to pay (or rely on unpaid help from loved ones) to get social care support.

Medical treatments don't yet exist for dementia, as they do for other long-term health conditions such as cancer and heart disease, so people with dementia must usually access help through the social care system rather than the NHS. This disparity is often referred to by campaigners as a 'dementia tax'.

Calls to reform the care system

Nearly one million people with dementia and their families are struggling to get the support and care they need, according to the charity.

The 'Cure the Care System' campaign will run during Dementia Action Week 2021 (17-23 May) - a national event to urge the public to take action to improve the lives of people affected by dementia.

A dementia diagnosis affects more than just one person

It is not just the individual with dementia that is affected by the illness. Dementia can have a profound effect on friends and families too. Because although caring for someone with dementia can be rewarding, it can also be incredibly challenging.

To showcase the difference free care would make to families, Alzheimer's Society is highlighting the difficulties individuals who care for a loved one with the condition face.

Caring for someone with dementia

While there are many positive aspects of caring, looking after a loved one with dementia isn't easy. Every carer's experience is unique but if you're in this situation, you may find the following tips useful:

Get an accurate diagnosis

If you're concerned about your own memory or a loved one's, it's important to get a proper diagnosis from a doctor. Many other illnesses can cause similar symptoms to dementia so a health professional will want to rule out other conditions that might be causing confusion or memory problems.

And although the idea of dementia being confirmed may seem very frightening, an early diagnosis brings benefits for the individual and their family. Medicines are likely to be more effective at managing symptoms when the disease is at an early stage. A timely diagnosis can also help your loved one plan ahead, discuss their wishes and organise personal affairs.

Improve home safety

In the early stages of dementia, it's possible for someone to remain living independently at home. The condition can cause more difficulties as time goes on which makes safety more of a concern. But there are many aids and adaptations - from stove alarms to dementia-safe kitchen knives - that can help someone with dementia stay safe at home during the early stages of the illness.

Our article looks at the simple checks you can do to make a home safer for someone with dementia. We also explore the smart at-home technology that can help families affected by dementia.

Look into benefits

Caring for someone with dementia can also bring financial worries. Make sure you and the person you care for are claiming all the benefits you may be entitled to.

Unpaid carers can claim Carer's Allowance if they meet certain conditions. Watch the video below to find out more about who qualifies.

You can also find more detailed information in our guide to Carer's Allowance.

Take a break

Looking after someone is emotionally and physically exhausting. You may need to take a couple of weeks off to rest and recharge your batteries - or to take care of other commitments.

There are many different options if you need to take a short break from caring - this is called respite care.

Explore further support

As dementia progresses over time, your loved one may eventually need more support than you can provide for them. A care home is one option, but it isn't the only available choice.

Our article on planning dementia care takes you through all the potential care options and when to consider them.

The Which? Care services directory makes it easy to search for and compare care homes and home care agencies wherever you live in the UK. You can also find details of local support groups for people with dementia and their families - this information is provided by Which? in partnership with Alzheimer's Society.