Managing Risk for People with Dementia

21 Sep

 

Managing risk for people with dementia

 

We all take risks, we do it all the time.  We cross the road without looking carefully, eat too much, exercise too little, drink too much alcohol or smoke to name just a few of the things that all of us do.  And sometimes this has serious consequences, with the number of road traffic accidents there are a year, but there are far fewer accidents, than the numbers of people carelessly crossing the road each day.

 

People with dementia are still people, I have red hair (sometimes it is even referred to as being ginger!), but I’m not just known as that, I’m also a solicitor, resident of Plymouth and parent.  There are lots of different facets to me, but when dealing with a person with dementia, why is that the key facet that is seen?  They are more than that, much more.  So if I can take a risk, why can’t someone with a dementia?

 

From the human rights aspect, they can, they are still human and human rights are universal!  The overriding human right it the right to life, so as long as they are not seriously risking their life, everyone, including people with dementia should be allowed to make unwise choices.  We are all allowed a private and family life, freedom of religion, as well as freedom of assembly and association and freedom from discrimination.  We should all be allowed to exercise all of our human rights and it is only at the point that we risk our life, should our ability to exercise our human rights be curtailed and they should only be curtailed to the extent needed to protect our life.

 

In the Mental Capacity Act 2005, there is legislation regarding ensuring whatever decision is made on that person’s behalf, it is the less restrictive of their rights and freedoms.  The key word here is less, it is not least, to do the least restrictive would be to do nothing, but that might mean that it is too risky and becomes a risk to their life.  How many people with dementia say that they want to live at home with no help?  They might want to, but would be dead in a few days if they did, as they have no ability to care for themselves.  So the less restrictive might be to put in a daily carer, possibly even multiple times per day.

 

People with dementia are still people and like the rest of us, are completely unique, with their own views about themselves and the world around them.  They might be very risk averse or happy to take risks, even big risks.  All their characteristics needs to be taken into account when making a decision about someone with dementia, including what they say now, not just what they would have said when they were well.

 

The decision should be the less restrictive, let the person with dementia feel like they are still a person and not just a medical diagnosis and let them take a certain amount of risk as too restrictive a regime might be just as bad and dangerous for health as a too unrestrictive one.  Balancing risk is about seeing the person first, as a real person and not just their dementia.

 

And to all carers out there, from time to time, you may get it wrong, but mostly you get it right and just by caring, you get it right.  Keep up the good work.

 

If anyone needs advice in caring for a loved one, let me know, I understand.

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Mental Capacity – what does it really mean?

31 Aug

 

Mental capacity – what does it really mean?

 

When someone has lost their mental capacity, what does that mean?  With the Mental Capacity Act 2005, capacity is considered to be time and decision specific, but what does that mean?  Every decision that is made is made at a certain time, it might even be made each day at the same time, such as eating breakfast or getting out of bed, but each decision is made every day and tomorrow the decision to have breakfast is a new decision.  Capacity can be fluctuating, so if someone is very unwell today, they might not be tomorrow and their capacity can return.  This is why decisions are time specific.

 

What about decision specific?  Some decisions are much more complicated than others, such as the decision to move house, but a decision about what to eat for dinner is much easier, so someone with poor cognition may not be able to make one decision, but might be able to make another.

 

The statutory test of capacity at stage 2 of the decision making process is about understanding it, weighing it up, retaining it and communicating the decision.  So how does someone weigh up the decision?  The easy answer to that, is to ask them.

 

What isn’t part of assessing someone’s capacity is the “nice answer” or the “risk free answer”.  So whether someone with a cognitive impairment can decide to live with a relative or not, should not depend on whether the arrangement would work well or would be good for one of more of the parties.  Or just nice to see happen!  Ask them if they understand the proposition, look at the different aspects of it, how would an “average person” analyse the situation, unless you know they have skills in the area greater than an average person, then that’s the criteria to assess them by.

 

When deciding if someone has capacity to eat dinner, an average person would be unlikely to know how many grams of saturated fat they have eaten today, or how many calories.  An average person knows they are hungry and what they might fancy eating and that it’s approximately dinner time.  There is no reason to make the decision more complicated than it needs to be.

 

One of the key aspects of the Mental Capacity Act is the presumption of capacity, that someone is considered to be able to make a decision until it is proven that they can’t.  Capacity is often a balancing act and it is only when someone is in a coma or other minimally aware state that there is a total lack of capacity, even people so impaired that they are non verbal can refuse to eat or drink or have care undertaken.  And they might refuse to eat their meal, but agree to eat their pudding or sweets, because they know the difference and have a preference.

 

The ideas behind the Mental Capacity Act were about enabling and empowering people to make as many decisions that they can for themselves.

Lasting Powers of Attorney

17 Aug

 

Lasting Powers of Attorney

 

Following retired Senior Judge Denzil Lush’s comments regarding Lasting Powers of Attorney (http://www.bbc.co.uk/news/uk-40887323), I thought it worthwhile exploring the situation more.

 

Denzil has said that there are risks associated in appointing someone to look after your affairs, for both financial and health & welfare decisions.  He is right, there are risks, however he has said that there are issues with 1 in 8 Powers of Attorney, which means that in the vast majority of cases, families care for the loved ones with diligence and compassion.  For those unfortunate to be involved in the cases of fraud or careless decision making, it can be devastating, both financially and from the family relations perspective.

 

Denzil has also said that he would not create LPAs and would rely on the Court of Protection to appoint an attorney, if he were to become unable to manage his affairs.  What he did not discuss in his article is the cost of doing do and the time it takes.  Deputyship orders can be done in person, but they are complicated and I often see people who have tried and given up.  The legal costs for a simple application for deputyship is IRO£1,500.00+VAT plus the Court fee of £400 (total around £2,200)* and this does not include the cost of the Bond or the ongoing costs of supervision of the Deputy, which can run to thousands of pounds a year.  The result from the Court will be a supervised order covering the daily management of the donor’s financial affairs, but it is unlikely to include health & welfare decisions, as these are rarely granted.

 

If there is anything that changes in that person’s affairs, then a further order to the Court of Protection might be required for a more complicated matter.  This is likely to involve significant legal fees, including those of the Official Solicitor to represent the donor and can easily be IRO£10,000 and upwards.

 

Lasting Powers of Attorney by contrast, can have restrictions added to them for protection and cost £600+VAT plus the registration fee of £164 (total £884)*.  This cost would cover both financial and health and welfare decisions, so would cover far more than the Deputyship order in all likelihood.

 

At Nash & Co Solicitors, if the LPAs are done for people who have capacity and are not expecting to use them for a while, we will hold onto the original and release it or certified copies of it at the direct request of the donor or with evidence of loss of capacity, if this is the donor’s original instructions, to add an additional layer of protection.

 

There are risks to creating Powers of Attorney and Deputy’s can commit fraud too, although hopefully the Office of the Public Guardian would realise, but this can take a while.

 

Lasting Powers of Attorney are a great tool to allow someone to be taken care of, at a time when they really need help.

 

 

 

 

*current prices for Nash & Co Solicitors

Caring for someone with a dementia

3 Aug

 

Caring for someone with a dementia

 

There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating.  There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace!  And importantly, eventually it will be terminal.

 

It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen.  Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer.  And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered.  The carer will facilitate the best outcome that can be achieved.  In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.

 

There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.

 

Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness.  These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.

 

The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these.  Music seems to be quite powerful to many people.  Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans.  Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm.  When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.

 

Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away.  85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.

 

A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to.  It takes the carer and the understanding of a whole community to do it well.

 

If you need help caring for a loved one with dementia, let me know, I understand what it is like.

Suicide – The aftermath

20 Jul

 

Suicide – The aftermath

 

The politically correct way to discuss suicide is to describe it as “taking their life” as the phrase “committing suicide” refers back to the time when it was criminal and is therefore a shortened version of “committing the criminal offence of suicide”.  Taking your own life is not a criminal offence, aiding, abetting, counselling or procuring (ie helping or encouraging in any way) are all still are criminal.

 

Taking their own life, is the biggest killer of men under the age of 45 in the UK.

 

So when someone takes their life, the friends and family that are left behind are hit by the tragedy.  Before they took their life, options are possible, there are choices, even if that person doesn’t see them for themselves.  Afterwards, those options have gone.  And they are never coming back, so nothing will ever be the same again.

 

If someone attempt to take their life unsuccessfully, then the options are still possible and those around that person are on notice that they need help, even though they might not have asked for it.  It can entirely change the situation, as the person may have done serious harm to themselves in the attempt and their life is irrevocably changed by the new situation.  And the person, their family and healthcare professionals all must deal with the outcome and the new situation.

 

If someone is successful at taking their life, those who are left behind are firstly numb, then the questions start.  What could I have done differently?  What opportunities were missed?  And by whom?  And all whilst this is going on, there is sadness.  Sadness for the life that could have been.  And a sense of loss of the missed opportunities and lost life.

 

The family and friends will be bereaved and have stress to deal with and may well become depressed.  The families that I deal with when their loved ones took their own life really struggle, they are confused and their speech can get confused, it is all a sign of their stress and anguish.

 

When someone takes their own life, it is sad for the survivors, but they did it because they saw it as their only choice out of their pain.  It is not an easy decision, it is not the decision of what to eat for dinner or what colour shoes to wear.  It is a big important decision and it takes a lot in the moment to carry it out.  For the family who are left behind afterwards, you have my sympathy, living with the aftermath is very hard.

 

#MentalHealthMatters

 

Do Not Resuscitate – Completing a TEP

29 Jun

Do Not Resuscitate – Completing a TEP

 

Firstly, what on earth is a TEP?  Many of us will have heard of DNR orders, but have no idea what a TEP is, it stands for Treatment Escalation Plan and is the NHS document regarding end of life and resuscitation.

 

It has 3 sections; part A looks at whether this patient is at the end of their life with a poor prognosis and starts the question “Would you be surprised if this patient died within the next 6 – 12 months?”.  When I talked to healthcare professionals about death and dying, they will often say that they cannot predict when someone is going to die.  They can try and they will often get it right or close to being right, but not always.  People can unexpectedly rally and recover and continue to live for months or years.  I had a client who was Catholic and approximately annually the priest was called in the early hours of the morning to give her last rites and asked not to wait until office hours as she wouldn’t survive until then.  She finally succumbed in the 4th year, having survived last rites 3 times!

 

The next bit of section A looks at any advanced decisions that person made and whether they have the capacity to participate or make the decision themselves and if they haven’t, it allows the doctor to decide whether or not to resuscitate in the event of cardiorespiratory arrest.  In other words, is someone going to do CPR (chest compressions and restart their heart if it stops).

 

Part B then looks at a slower less dramatic decline and considers the circumstances “If the patient is currently very unwell or in the event their condition deteriorates”.  There is a series of boxes to tick Yes/No including some that are only relevant in hospital (aka acute setting).  The 5 questions for outside of hospital are:

  • Is admission to acute hospital appropriate?
  • Are IV fluids appropriate?
  • Are antibiotics appropriate?
  • Is artificial feeding appropriate?
  • Is De-activation of Implantable Cardioverter Defibrillator (ICD) appropriate?

 

TEPs are important documents, they are life and death decisions.  They are not however written in stone and can be changed by a doctor at any point in time that circumstances change.  And when circumstances change a new TEP is completed and placed in the patients notes.  Until it is changed, the current TEP will be followed by the healthcare professionals looking after that person, including doctors, nurses and paramedics.

 

I’ve seen lots of these completed, I’ve even been part of conversations around end of life in vague non-specific terms, but I’ve yet to see a doctor complete one in full consultation with the family, so they clearly understand what a tick in each of the boxes will mean.  It does have to be completed by a doctor, it is their signature on the form, but even when there is a health and welfare attorney with authority to make decisions about life sustaining treatment, the doctor still doesn’t fully consult with the attorney, or at least I’ve never yet seen that.  This means that they can get it wrong!  Not every family member wants to discuss this in detail and if they don’t that’s fine, that’s their choice.  But they should be given the option!

 

Part C is about organ donation, so is only relevant at the time when the other decisions are all over!

 

TEPs can be scary, they deal with circumstances that family members don’t want their loved ones to be in – very poorly!  If anyone needs support in dealing with a TEP or understanding it, then let me know.  I’ve been involved in others and I understand.

 

 

 

 

 

 

 

 

 

 

 

 

Plain English

15 Jun

Plain English

 

There has been a campaign in recent years for legal advice to be in plain English and long may it continue.

 

Sometimes the complexities of a legal case or legal argument may be hard for the layperson to understand and in which case it is the role of the solicitor to explain as best they can, but so they do understand.  Some unsophisticated clients just want to know that their case is being handled in a skilled manner and don’t feel the need for a detailed explanation of the situation.

 

Any case law or arguments in legal language should be a discussion between lawyers and should not involve the client, unless they have the requisite understanding, as some sophisticated clients do.

 

Historically the language of law was constructed to ensure that lawyers were seen within society as highly skilled and educated.  The process of becoming a lawyer was intentionally hard to keep the numbers in the industry small, the skill level high and in a really historic way, the province of rich white men!!!  This historic construction of the industry meant that lawyers were well paid and usually well respected in society.  Today we are still reasonably well paid and hopefully reasonably well respected.  We are closely monitored by the Solicitors Regulation Authority and are required to have training every year to ensure that our knowledge is up to date.  It is still hard to become a solicitor and as one there are lots of outcomes we are required to follow to ensure that we at all times act in the best interests of our client.

 

Some lawyers take extra exams to distinguish themselves from other lawyers and better qualified, most lawyers I know take a huge amount of pride in their work and go to great lengths to ensure that the advice that they have been given is of excellent quality, myself included, I’ve passed my Solicitors for the Elderly (SFE) exam and my Society of Trust & Estate Practitioners (STEP) exam.  In my area of law the only other exam I can take is the Associate of Contention Trusts and Probate Specialists (ACTAPS), but as I don’t litigate, it seems fairly pointless.

 

There is a LOT less Latin in the legal language than there used to be, but still some, it must be said, which is a good thing, as I never did Latin at school!!!  The detail of some legal arguments can sometimes still be hard to follow, but that should not put off the solicitor from trying to explain it to their client in a language that their client will understand.  By using plain English we are helping the client to understand that we are on their side, that is what all the regulation of the legal industry is about, the SRA has little or no sympathy for a lawyer or law firm that has not treated the client fairly.

 

So long may it continue, long may we used plain English to demonstrate to the client that we are on their side and hopefully we will be rewarded and respected for the great quality of the work that we do.  I know that’s always what I strive very hard to do.