The Dementia Challenge Conference

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On Tuesday I was thrilled to be on the panel at the Dementia Challenge Conference in London where a brilliant range of speakers educated us about various dementia related topics. Here I pick out some of the points that I found the most interesting and encouraging:

Alistair Burns could not be with us but sent us a video in which he informed us that diagnosis rates are improving – up from 42% to 61% in the last year. We are also making huge inroads with Dementia Friendly communities and in particular the Dementia Friends project which has now attracted 1 million ‘friends’.

Sally Warren, Deputy Chief Inspector for CQC, illustrated ways in which CQC is looking to improve on the findings of their “Cracks in the Pathway” report which looked into transitions from hospitals to homes. They discovered that 90% of care was variable and there were few examples of cases where people with dementia had encountered good practice every step of the way. They have launched a campaign called ‘Good Enough for Mum’ which emphasises that all care must be as good as we would want for our dearly loved relatives. CQC has also introduced a section into all hospital reports titled ‘Meeting people with dementia’s needs’. Read More

People syphoning money

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Last week You&Yours (Radio Four) had an interesting article led by a listener who had discovered that over many years his sibling had been withdrawing large amounts of his mother’s money out of her savings account, probably without her knowledge and/or consent. The piece highlighted the difficulties in addressing this kind of financial abuse as the police are often reluctant to get involved with what they perceive to be a family dispute. I spoke to a caller once who had experienced a similar situation – expecting to inherit about £50,000 when his mother died he was disamyed to discover that the savings account was empty. An investigation revealed that five years earlier his sister had taken their mother to the bank and got her name onto her mum’s bank account through what is called a Third Party Mandate. The caller was sure his mother had no idea what this change to her account meant and would have been horrified to learn that it had enabled his sister to tranfer large sums of cash into her own account. Read More

Employers for Carers publish new research paper

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On March 25th, Employers for Carers published a research paper titled ‘Supporting employees who are caring for someone with dementia’, the conclusions of which echo that of the Institute for Public Policy Research’s 2013 paper ‘The sandwich generation: Older women balancing work and care’. Essentially there are many many people who are working and caring for relatives who have memory problems. The strain that this places on employees is huge and can lead to them reducing their hours or leaving work altogether. Read More

Whistleblowing – abuse of powers of attorney

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There was a brilliant edition of Money Box Live on Radio Four yesterday when Alan Eccles, the Public Guardian, answered enquiries from the public about the workings of his office (Office of the Public Guardian – administrative arm of the Court of Protection). He highlighted a helpine for people who want to report attorneys they believe are misusing their powers in any way. The number is 0115 934 2777 and he assured listeners that their identity would remain confidential if they needed to ring that helpline. Read More

State of Caring Survey supports our mission

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This month Carers UK published the results of a survey undertaken with 3000 carers titled ‘State of Caring’. Here is some information and statistics from that survey which highlight why our work to support carers through our talks and seminars is so important:

“Caring is becoming part of life for more and more of us as our ageing population and the fact that people are living longer with disability and ill-health brings changes to family life.
Our survey of carers looked at a wide range of issues affecting carers and their experiences to build a picture of the current state of caring, reflecting wider social, economic and political trends.”

“Of carers responding to the survey:

Over half (56%) of carers who gave up work to care spent or have spent over 5
years out of work as a result

More than 4 in 10 (44%) of carers surveyed have been in debt as a result of caring

84% of carers surveyed said that caring has a negative impact on health

The difficulty of juggling work and care came out clearly in our survey; nearly two thirds (65%) of carers in work have used annual leave to care while nearly half (47%) have done overtime to make up for taking time off to care.”

More evidence that we need to empower people with information about planning ahead and help people prepare for a future that may involve caring responsibilities.

Welfare Reform Bill

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The Lords are debating this Bill this week and so far it’s not looking good, the general view from disability groups is that it will be bad news for people who get Disability Living Allowance (DLA)  which is being replaced with ‘Personal Independence Payment’. (PIP).

Eligibility to receive DLA, like Attendance Allowance, brings with it access to other assistance which will be lost with PIP. The qualifying period is longer and advisors are concerned that the tighter criteria will mean less people get the benefit full stop.

For more information please click here: link

Confidentiality and the diagnosis of dementia

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You&Yours are keeping me busy today! Another article discussed the issue of people with dementia and patient confidentiality. Again this question demonstrates the unique experience of dementia – some people argued that GPs should communicate the diagnosis to wider family members due to the fact that people cannot always recall the details of their diagnosis or any advice they had been giving during an appointment. Others argued that there were ways around this – inviting a relative to the appointment for example.But not everyone will want their family to know the formal diagnosis and not everyone will have someone they trust to take to their surgery.

I have not given this area much thought as I was not aware it was up for debate but I can see both sides of the story – legally our GP cannot disclose our medical information to third parties however this is not necessarily in the best interests of the person if they have memory problems. If the patient has drawn up a Lasting Power of Attorney for Health and Welfare this means that someone has been nominated to make care decisions on behalf of the patient but it isn’t much use if the attorney is not aware that it’s time to start using it. Further thoughts welcome….

Local authority subsidised care home places

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An article on You&Yours today explored the situation in Staffordshire where the local authority was threatened with a Judicial Review if it continued to offer residential care home payments at less than the cost of care.

This has been the case for years: care homes win a contract with the local authority to provide beds for local authority referred residents. The local authority however uses the fact that they have block bought beds to pay less than the amount a self funder would pay. Of course this riles self funders and their families and quite rightly – why should they pay more than the person sitting next to them who is receiving the same care, food, heating and laundry services? They are essentially subsidising the people whose costs are being paid for by the local authority.

The Staffs local authority representative denied that the Judicial Review was what has prompted them to make a change and asserted that they had been considering amending the system for some time. He added that some homes might not welcome a change to the status quo as the local authority would start to look at quality of care before awarding contracts to homes if anychanges go through. I fail to see the disadvantages of this and imagine any decent care home would too. Any updates on this story will be posted as and when…watch this space.

The ‘shadowy’ Court of Protection

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Amelia Hill in the Guardian on Sunday questions the motivations and efficacy of the Court of Protection whose role it is to take very difficult decisions for people who lack capacity. I am always divided when these comments surface – on the one hand the Court operated for years in a shroud of secrecy and was guilty of failing to communicate properly with the public. However, it has worked tirelessly to address this, particularly with Martin John at the helm as the Public Guardian (head of the Office of the Public Guardian – the department that manages all the paperwork for the Court).

The article also highlights one of the main issues that occurs in every walk of life where the authorities make decisions that can override what a family wants – that when the Court goes against the family the family declares it draconian, but where the Court supports the family it is applauded. This is human nature but does not mean the Court is either inherently good or inherently bad.

I sympathise with anyone who needs to use the Court of Protection as they only engage with it when someone they know and probably love has experienced a serious accident or debilitating illness, however I am wary of scare mongering and suggesting that there is a malevolent force at work rather than a government body with a very difficult job on its hands.

To read the article please click here.

Care Home resident starves themself to death

By | End of Life, Media | No Comments

There is an article today in the Daily Mail (link below) which tells the story of a lady who consciously decided to starve herself to death because she felt her quality of life in a care home was far too low. As long as someone has capacity to make this decision they are legally allowed to refuse food and water until they die.

This adds an interesting angle to the assisted dying debate which has been highlighted extensively by Terry Pratchett and the Dignity in Dying lobby over the past three or four years.

It had never occurred to me that someone would have the ability to continuously refuse food and water and subsequently die. According to the article the doctor’s legal responsibility is to relieve suffering through rather than force a patient to eat or drink (which confuses me re hunger strikers who HAVE been force fed as far as I’m aware, but anyway..) So it begs the question – if people can voluntarily starve themselves why can’t we introduce assisted suicide here as it exists in Switzerland? It would seem a more human way to allow someone to die rather than have them starve themselves to death.

The article raises this and other huge questions but most important of all for the whole debate is one line halfway through where the author (and daughter) states “We needed to be certain that my mother was doing this for herself, not for me.”This has to be uppermost in the minds of legislators if/when this country one day agrees that people can decide for themselves when,where and how they should die.

To read the article click here link