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Looming incapacity dementia crisis

New report warns of looming incapacity crisis

A new report from SFE (Solicitors for the Elderly) and independent think tank, Centre for Future Studies, reveals the UK is leaving medical and care preferences to chance. The report looks at the ever-increasing number of people living with dementia which, combined with the failure to plan ahead for mental incapacity, exposes a looming crisis.

The study found 97% of people in the South East have not made necessary provisions, should they lose capacity from conditions like dementia. A further 36% admit to having made no provisions at all for later life, including a will, pension, funeral plan or LPA.

In response, a coalition of organisations, led by SFE - the specialist organisation that connects older and vulnerable clients with legal experts in older client law - are joining forces to encourage people to tackle the taboos around end of life planning, in order to prevent an incapacity crisis.

The research found that 75% of people are worried about dementia and losing the ability to make decisions for themselves, but 80% have not spoken about, or even considered, personal medical and care end of life decisions.

Planning ahead is surrounded by worrying misconceptions, especially in relation to health and care preferences.

A staggering 68% of people in the South East incorrectly believe that their next of kin can specify what they would have wanted if they are no longer able to and 64% believe their spouse has the power to do so. 75% of the people in the South East would like a family member to make medical and care decisions on their behalf, but this is not the case. These decisions are out of a loved ones’ hands if a registered health and welfare LPA is not in place.

66% believe that being on the NHS organ donor register ensures that organs are donated following death, however this is not the case. It’s crucial for people to discuss organ donation preferences with family and friends, otherwise it may not happen.

Without the necessary provisions in place, potential life-changing medical and care decisions are taken away from loved ones.

There are currently 928,000 Health and Welfare LPAs registered with the Office of the Public Guardian (OPG) across England and Wales, compared to the 12.8 million people over the age of 65 who run the risk of developing dementia – a difference of nearly 93%.

The forecast shows the disparity will continue, leaving millions in limbo. By 2025, it’s calculated that 15.2 million people will be at risk of mental incapacity and it’s estimated that 2.2 million health and welfare LPAs will be in place. This shows that the health and welfare wishes of 13 million people will not be taken into account.

Only 3% of people in the South East surveyed by SFE have a health and welfare LPA in place. 

SFE is urging the nation to act now to avoid this incapacity crisis by planning ahead in case of mental incapacity.

It is crucial to have a conversation with loved ones in order to make specific medical and care wishes known – such as, where you are cared for, whether you wish to be an organ donor and whether or not you would want to be resuscitated – otherwise there is a risk your preferences are not taken into account.

The campaign calls on people to act now and start a conversation with loved ones about end of life topics to remove the stigma surrounding the discussion. 

Lakshmi Turner, Chief Executive of SFE, said: 

“Most of us do not like thinking about, let alone talking about, death, disability or disease, despite the fact that it touches all our lives – but it is essential that we do so.

“Whilst it’s great that more and more of us are putting wills in place and establishing plans for finances and assets, far too few of us are planning ahead for our health and care needs and wishes, leaving this to chance.

“It’s time to set the record straight. Planning ahead by talking to family or friends shouldn’t be seen as doom and gloom, it’s about having a positive conversation about welfare, empowering your loved ones and making the decision-making process easier for everyone.”

Professor Ilora, the Baroness Finlay, states:

“With decades of experience working and campaigning around palliative medicine, the low numbers of health and welfare lasting power of attorneys is of concern. 

“When a person loses capacity to take decisions, it is sad to see families and professionals struggling to try to determine what a person would have wanted. Delays and distress can be avoided by appointing someone to speak for you when you can no longer speak up for yourself.

“Discussing medical and care wishes ahead of time ensures that care can respect an individual’s wishes, with the respect they deserve – even when it comes to fulfilling wishes after death, such as organ donation.

“It’s important to have an open discussion about future illnesses and possible incapacity. I urge the millions of people who haven’t given loved ones the opportunity to listen, to act now.”

Jeremy Hughes CBE, Chief Executive of Alzheimer's Society

“We welcome this initiative. Lasting powers of attorney for health and welfare too often get overlooked.

“People with dementia have the right to make choices about their care, just like anyone else. Making someone they trust their attorney for health and welfare is one of the ways people can do this. A health and welfare LPA provides reassurance to them and the act of creating one can start useful conversations about the future with family and friends.”

To download the report, a short video and infographics, visit sfe.legal/the-incapacity-crisis-a-nation-unprepared