Dementia care by strangers for the millions who fail to prepare

18th July 2018
Dementia care by strangers for the millions who fail to prepare

Britain is in the grip of a dementia crisis, with a huge gulf between the numbers of people who will be affected by it and those preparing for it, a report will warn on Monday.

Dementia is the biggest single cause of death in England and Wales, responsible for 12 per cent of deaths in 2016, and the number given a diagnosis of the condition has risen by 54 per cent in ten years, it says. However, while three quarters of the population fear dementia or the loss of capacity to make decisions, 97 per cent have not made relevant legal provision.

About a third of people in the UK have made no provision at all for old age, whether through a pension, writing a will, saving for retirement, making funeral plans or creating a lasting power of attorney to cover their wishes on health and care.

By 2025, the report predicts, more than 13 million people who are at risk of mental incapacity will be unprepared, with no legal or medical plans in place for their future care.

A coalition of seven prominent national charities, led by Solicitors for the Elderly (SFE) and including the Alzheimer’s Society, Age UK and Dying Matters, has joined to warn of the crisis, using research from a think tank, the Centre for Future Studies.

They say that people are reluctant to discuss incapacity because of “taboos” around conditions such as dementia. Some 65 per cent of people incorrectly believe that they can leave decisions to their next of kin, without taking legal steps to ensure that happens.

There are currently 928,000 health and welfare lasting powers of attorney (LPAs) registered across England and Wales at the Office of the Public Guardian (OPG), compared with 12.8 million people aged older than 65 who run the risk of developing dementia — a difference of nearly 93 per cent.

The report highlights the case of Helen, 51, from Cheshire, who suffered a range of problems when her father was diagnosed with dementia. He had not registered an LPA and she spent more than two years fighting for his care wishes. She was not allowed to choose the location of the care home, or how her father was cared for.

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.

“At a time of crisis, families have to make huge decisions about a loved one quickly, while under a massive amount of stress, without knowing their wishes.”

Highly personal decisions were being left in the hands of strangers, she said, such as “whether we are resuscitated when we would not want to be; whether our organs are donated (even when we’re on the donor register); who cares for us and even what we wear.”

Baroness Finlay of Llandaff, a professor of palliative medicine, said: “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.”

Gary Rycroft, chairman of the Dying Matters forum, said: “Death and dying needn’t be a taboo topic. There is dignity to be found in dying, and one of the best ways of ensuring this is by specifying your wishes around how you would like to be cared for.”

 

In Northern Ireland, the law is slightly different……