Tag Archives: Moving into care

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.


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.

Wealth Preservation Schemes – Part 2

2 Oct

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Wealth preservation schemes – Part 2


Following on from my earlier blog about Wealth perseveration schemes.   So far I’ve covered the points that they are challengeable, they may not save tax overall and may cost more, they may not save fees overall and they may not resolve a misdirection of assets and may even create one.


The other point that the leaflet I have been given raised was the Court will take over your affairs if you lose capacity.  Firstly the best thing to do is create Lasting Powers of Attorney, so that you can choose who manages your affairs if you are unlucky enough to lose capacity.  If you don’t then your loved ones can apply to the Court of Protection to appoint someone to manage your affairs.  So to be clear, it is not the Court taking over, they simply retain oversight of someone else managing your affairs.  Their role is to ensure your affairs are managed properly and in your best interests and that your money is used for you and not anyone else whilst you are alive, so that you estate can ultimately be dealt with in accordance with the wishes expressed in your Will.  The Court of Protection is not some malicious body dealing with your affairs, nor is it draconian in the orders that they make.


So in conclusion, will this scheme save probate, yes might well do, if you transfer enough assets into it, but it won’t save money overall.  Will it avoid Inheritance Tax, no, the Trust is taxable and subject to IHT.  Will it protect your bloodline, it probably will ensure that your bloodline inherit your estate, but what if you want someone who isn’t your blood line to inherit?  And what if someone new comes into your life?  Does it stop claims against your estate?  It can certainly make them harder, but whilst the Court cannot compel Trustees to exercise their discretion, the Court can make orders on the basis that their expectation is that they will exercise their discretion in a certain way.


Can the scheme protect from relationship failure, it can’t prevent the relationship failure, but it can put assets out the of reach of the family Court in some circumstances, so yes, it might well be able to do this in some circumstances.  It will protect disabled beneficiaries, yes it probably can do that, but if you do have a disabled beneficiary, then you should take specialist advice about protecting them.  There are some tax reliefs available for disabled beneficiaries.   It avoids Court of Protection control, yes it probably does, but Court of Protection control is nothing to worry about and depending on who the Trustees of the Trust are, Court of Protection control may be preferable.


Does it protect your estate from bankruptcy, it depends, if you gift your assets into the Trust and live for more than 5 years, those assets are no longer available if you become bankrupt, but any assets outside of the Trust are potentially available to the Trustee in bankruptcy.  But if you hadn’t given your assets away into Trust, then you’d probably never go bankrupt anyway, so whilst it will protect them after 5 years, the point is a bit of a red herring.


Does it protect your estate against care home fees?  It might, sometimes these schemes can work, and sometimes they are challenged, but not always.  It does depend on the circumstances and you would benefit from good advice.


Also, it doesn’t make cappuccino, nor does it cure old age, dementia or cancer!!


One final word, take good balanced advice if you are thinking of one of these schemes, understand the negatives as well as the positives, if it sounds too good to be true, it probably is!

Wealth preservation schemes – Part 1

25 Sep

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Wealth preservation schemes – Part 1


I’ve just been handed a leaflet about this fantastic scheme to preserve your wealth against the threat of dreaded care home fees.  This totally amazing scheme will also save you thousands in probate fees, save taxes and avoid any misdirection of assets – I’m surprised it doesn’t make cappuccino as well!!  It also says that the Court will take control of your assets if you lose capacity.


So to give a balanced view of these kinds of schemes, I’d like to say the following:  They might work, but they might not – there is no guarantee.  One of the important things to understand about these schemes is that they are potentially challengeable and depending on the sales tactics of the company selling them, they can be even more challengeable.  I have heard on the grapevine of a Local Authority that challenges every single scheme created by a certain company, as they are aware of the sales tactics used and consider every single one to be a potential deprivation of assets.


If you move your assets into a Trust, which is what these schemes are, then depending on when you go into care in relation to the date of the transfer of assets, the Trust can be undone.  So if you need Local Authority financial support within 5 years, the Local Authority can apply for a bankruptcy order to get the Trustee in bankruptcy to undo the transaction, not a nice thing to happen!  Even after 5 years, the Local Authority can still financially assess you as though you own it (although after that amount of time they might not).


It might save Inheritance Tax, but you would have to live for 7 years after the date of the transfer of assets, otherwise the IHT is still.  Even if you do live for 7 years, the Trust is taxable in its own right, so you will be paying tax and if you have transferred your house into a discretionary Trust and have not been granted an interest, then you could be paying tax on something that was exempt from tax.  The message is that there is potentially no huge saving on tax, in a good scenario there might be a saving, in a bad one, there could be more tax to pay!


Saving thousands in Probate fees.  The cost of getting the Grant of Probate is £215 if you are applying privately or £155 if you apply via a solicitor, so not thousands then!!  If you choose to appoint a solicitor to assist with the administration of the estate, then the fees will vary depending on the size and complexity of the estate and yes, they could be thousands.  But it will cost thousands of pounds to create this trust, so no overall net saving and it will cost hundreds or even thousands to administer the trust during its lifetime.  So yes, there is are no fees on death, which is at a time when you no longer need the money, but there are fees during lifetime, when you might need it.  This is a total red herring and hides what is really going on.


How about misdirection of assets?  For that to happen, then there will need to be no planning or poor planning, as in a Will you can direct exactly who you want to have your assets after death.  A Will also gives you options to change your mind as life and circumstances change.  Once assets are in a Trust, then they belong to all the various named beneficiaries, so what if someone new comes into your life and you want to include them?  Unless there is a clause that says that you can add a new beneficiary into the Trust, then you can’t benefit them, so the Trust may create a misdirection of assets. It might work in some circumstances, so if your surviving spouse remarries, you may not want their new spouse to benefit and you probably want to ensure that the assets ultimately return to your children and this could work well, but there are issues with this.  Good Will planning is essential and review the Will to ensure it is still relevant.

Dementia Friends – Part 2

8 May

Dementia Friends

Dementia Friends – Part 2

In the first part I’ve tried to briefly explain what Dementia Friends is, a social movement to raise awareness about dementia.


Why is raising awareness important?  There are over 100 different types of dementia, which is in part a loss of memory, but it is also a loss of functionality.  It is about loss, so it is not about an ability that you never had, it is a progressive loss of ability and memory.


Being a Dementia Friend is not about being an expert on dementia or being a carer, it is just about caring. It is about being willing to make a difference.


People with dementia are still people, they have hopes, dreams & fears.  Depending on the stage and progression of their dementia they can live very fulfilling lives.  They may need some help and understanding.  It is much better to help them to something or do it with them, than to do it for them.  That way they will retain their skills for as long as possible.


An important thing that I learned on the Dementia Champion training is their ability to remember emotions.  So if you were to go & cook a meal with/for someone and get cross with them that they’d forgotten how to make it & had made a mess of the kitchen, they won’t remember what they had eaten, but they will remember you were cross with them, the memory of the emotion will stay with them for much longer.


So Dementia Friends is about caring, it is about taking the time not to get cross with someone.  It is about accepting them for who they are, which is what all of us ever really want!!  It is about caring enough to make a small extra effort, it doesn’t have to be huge effort, but if everyone did, what a huge difference that would make.  If we all did it, then that would be around 67 million people, so to try to sign up just 1 million is a much easier job.


Most people know someone with dementia or someone who has had dementia, sometimes it is a close relative and they have hands on experience, but sometimes it is not so close.


We all want kindness from a friend or a stranger, how is that any different for someone with dementia.  Dementia Friends is therefore about having a tiny bit of understanding about dementia and a huge amount of compassion for those who live with it and their carers.


So please become a Dementia Friend, please care, please make a difference.  Your life will be enhanced if you do.


As a Dementia Champion, if anyone would like me to hold a Dementia Friends awareness session, please contact me.

Dementia Friends – Part 1

1 May

Dementia Friends

Dementia Friends

I was very pleased and proud recently to be able to attend the Dementia Champion training.  So what is Dementia Friends? And what is the difference between a Dementia Friend and a Dementia Champion?


Dementia Friends is an Alzheimer’s Society initiative and is funded by The Cabinet Office.  The purpose of the Dementia Friends is a social movement whose aim is to raise greater awareness and understanding of dementia.  They are trying to do this by having 1,000,000 (a million) people in England who are Dementia Friends by 2015.


So what is a Dementia Friend?  It is someone – anyone who has attended a Dementia Friends awareness session and agreed to become a Dementia Friend.  That person, that lovely new Dementia Friend will have agreed to do something positive to raise awareness around dementia.  It could be something as small as changing your language from “suffering from dementia” to “living with dementia” or it could be something much bigger, like running a marathon to raise awareness.


By why is this so important?  The numbers of people with dementia are rising and it is a huge cost to England (and the world) both financially and socially.  There are people with very severe dementia and it is hard to see how their lives can be improved, but they can.  For people who are in the earlier stages, there is a lot that can be done to help them.  Small changes can make a big difference.


At the dementia conference that I attended at the end of January 2014, the very lovely Angela Rippon interviewed 3 people with dementia and asked each of them how we could make a difference for them and the answers were: 1. Be nice, 2. Inclusion and engagement, 3. Every person has value & worth.


It’s not hard to do these 3 things, we should all be nice to everyone, not just people with dementia, then if they have dementia & we don’t know about it, then we will have been nice to them.  Inclusion & Engagement – just because someone is different, doesn’t mean they stop being a person, so talk to them & find out what they want or need, if anything.  And the final one, Everyone has worth, of course they do, they always have, we just need to remember this a bit more often.


So Dementia Friends (the movement) is about raising a level of understanding & acceptance of dementia and taking a small or big action to make the lives of people with dementia better.  A Dementia Friend (the person) is taking that small or big action.


A Dementia Champion is someone who has volunteered to present Dementia Friends awareness sessions.  I became a Dementia Champion in February 2014, so if anyone would like to contact me to attend a Dementia Friends awareness session, please contact me.

Paying for Care – Part 5 – NHS Continuing Care

30 Jan

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Paying for Care

Part 5 – NHS Continuing Care


Before consideration for Local Authority funding is made, an assessment for NHS Continuing Care funding should be made.

NHS Continuing Care funding is a complex area of assessment.  The easy part is the test, does the indivual have a primary healthcare need?  The answer is either yes or no, if yes their assessed care is paid for by the NHS, if the answer is no, then they are subject to means tested Local Authority funding. Simple!!  They can also qualify if they are “in the final stages of a terminal illness”.

When I’ve spoken to nurses, they tell me it is very hard to tell exactly when someone is going to die, they can be very unwell and rally and anecdotally I’ve had loads of clients do that.  So in order to be sure that they are in the final stages of a terminal illness, they wait until they are pretty sure that there is no chance to rally, so this funding in reality is granted for usually just few days in my experience.

So what is a “Primary Healthcare Need”?  It is very hard to tell and even the CCGs don’t agree.  I’ve got a case going at the moment, where one CCG has awarded it, but as the person was in another CCG area beforehand, they have asked them to pay and the other CCG don’t agree.  The argument between them is taking months, in the interim; my client has to wait for them to sort it out between themselves!!

The National Framework is the document used by the CCGs to work out if someone is eligible or not, including the process of how the process should be managed.  The National Framework says that the CCGs have to consider the Nature, Intensity, Complexity and Unpredictability of the individual.  The decision is not based on diagnosis, so it cannot be because of any specific condition such as dementia or Parkinson’s.  It is all about how the symptoms of that condition present and are the symptoms complex, intense and unpredictable.  In practical terms, usually the most important one of these 3 is unpredictability (although the CCGs might not agree, but that is what I see all the time).

I’ve spoken with a nurse assessor who works for the CCG and he advises me that although quite a lot of people are represented with these assessments, 60% are represented by someone who doesn’t know what they are doing.  I’ve done lots of these assessments where families have tried to get the funding and failed, then I become involved and we get funding, so in my experience, having someone who knows how to advocate on their behalf makes a difference.

It is a difficult and distressing issue for families to deal with, but the costs are stake can be considerable with care fees IRO£25,000-£35,000 per year.  It is well worth getting help with these claims and worth getting someone with experience.  If you need help from me, contact details are at: www.nash.co.uk