Tag Archives: Dementia Awareness

Best Interests Meetings

23 Nov

 

Best Interests Meeting

 

These meetings take place when someone is receiving treatment and there needs to be a discussion about how they will be cared for in the future, when they are cognitively impaired and cannot make that decision for themselves and there is no attorney who directs what happens, as the person has not created Lasting Powers of Attorney.  They can either be a multi-disciplinary discussion as the case in complex and it is easier to decide what should happen going forward when everyone is in one room and there can be a full and frank conversation about that person’s various and complex needs.  Additionally and alternatively they can take place where there is a dispute about how someone should be cared for, particularly if that dispute is with the family.

 

These meetings are aimed at being constructive rather than too formal, but where there is a minute taker and a room full of health professionals from various disciplines, they are very intimidating.

 

Families know their loved one well, they know what they would want and have a good idea about how they will react to certain situations, however they are usually not healthcare professionals and can struggle to feel that they have been heard.  These meetings take place around a highly stressful situation, when a loved one is unwell, that’s enough stress to deal with on its own, then adding what is perceived to be an intimidating meeting can often be too much to be able to sit rationally and articulately and be understood.

 

The purpose of the meeting is to make a decision in that person’s best interests.  In accordance with the House of Lords post legislative scrutiny of the Mental Capacity Act 2005, which was published in 2014, the Lords said that in general health professionals are paternalistic and social services are risk averse.  This makes it hard for families to assert that their loved one would prefer an outcome that involved more risk that the health care professionals are comfortable with.

 

I have supported many families in these kinds of meetings, to ensure that they feel that they have been heard and are supported so that they don’t feel quite so alone and do not understand the process that they are involved in.  If you need any help with this, please contact me.

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Dying and Bereavement

26 Oct

 

Dying and bereavement

 

When a family member is terminally ill, everyone deals with that information in different ways, that includes the person themselves.  The Kubler-Ross model has 5 stages: Denial, Anger, Bargaining, Depression and finally Acceptance.  These stages can work for all parties involved.

 

Family members can therefore choose to be very involved or not at all and this difference of grieving process has an impact on family relations, at an already difficult time.

 

Some people are afraid of dying and don’t want to do it alone, they will hang onto life for as long as they can.  Others accept it and at the end willingly go there, rather than cling to life.  Some terminally ill people don’t want their family to witness their death, they consider it personal.  So for family’s who are on a 24 hour vigil, the 5 minutes in which they leave the bedside to have a comfort break will be the 5 minutes that person chooses to pass away.  Others want their family there, will white knuckle the hands of a loved one, rather than let go and feel alone.  Either situation has its emotional impact on all parties.

 

Some family members will communicate with the others that turn up and let them know that if there is anything they can do to help, they will, yet when asked, are always busy with something more important.  They just can’t deal with facing the situation.

 

Some family members want to be involved with everything, do as much as they can, which might be more than is required and might be an invasion of the privacy of the dying person.

 

So what is the answer?  There is no “one” answer and there is no “right” answer.  Everyone deals with death and grief in their own way.  It is important to remember that, however anyone else deals with it, they might not understand how you do and vice versa.  So just give everyone a bit of slack.

 

When in doubt, imagine yourself in a week, a year and a decade and do the thing that means that you won’t have regrets, whatever that is.  And whatever you choose, know that you are not the only person in the world that has felt that, grief is universal, even if you feel alone in the moment.

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.

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.

GPS Trackers for people with dementia

6 Apr

GPS Systems for people with Dementia: The Human Rights Issues

 

Background

There are a number of GPS systems available on the market.  Some are simple GPS trackers (which work with a SIM card, like a mobile phone), others have additionally functions, such as phone, panic/distress button or watch.  Some devices are similar to pagers and some are like watches that can be worn on the wrist, amongst the designs available.   Some devices have a location service associated with them, which has a pre-set protocol that will be agreed upon when the device is set up with the company, others may just work from an App and the individual can be located whenever the carer (App user) wishes.

 

It has been agreed by search and rescue organisations that this would be helpful in the scenario that a person with dementia (or possibly a learning disability or other cognitive impairment) gets lost and needs to be found by the emergency services, thereby protecting their Article 2 – Right to Life.  The issue relates to the process of tracking an individual and their legal rights to wear it or have it put on them, their Article 3 right – Freedom from degrading treatment, their Article 5 – Right to Liberty and their Article 8 – Right to Private and Family Life.

 

Mental Capacity

The Mental Capacity Act 2005 indicates that an individual is assumed to have capacity to make a decision unless it is proven that they do not.  The capacity to make any decision is specific to the complexities of that decision and the time at which the decision needs to be taken.  The Mental Capacity Act 2005 indicates that if an individual lacks capacity to make a decision, but will regain the capacity, as capacity can fluctuate, and the decision can be postponed, then it should be.

 

Scotland

Within Scotland, the legislative framework is the Adults With Incapacity (Scotland) Act 2000, a different legislative framework than England & Wales with the Mental Capacity Act 2005.   Within the Scottish legal framework, the principles discussed in this paper are consistent to the Adults With Incapacity (Scotland) Act 2000.

 

Consent to wearing a GPS Tracker

In the situation where the individual has capacity to consent, in accordance with the test of capacity of the Mental Capacity Act 2005, then they can consent to wearing it themselves (or not if they so choose).  In the scenario where the individual has a Health and Welfare Attorney or a Health and Welfare Deputy, then the Attorney or Deputy can consent to them wearing it.

 

Refusal to wear a GPS Tracker

If someone has indicated that they do not wish to wear one, then if they have capacity then it should not be placed on them.  If they lack capacity, but have expressed the wish not to wear a tracker, then their previously expressed wish should be taken into account in making any best interests decision.  It is therefore unlikely that it would be in the best interests of someone who has expressed the wish not to wear a GPS tracker for one to be placed on them, after the lost of capacity.

 

The Issue

The remaining issue then relates to someone who lacks capacity, and is without an Attorney or Deputy for Health and Welfare.  What is in a person’s best interest will always turn on its own set of fact and will be an individual decision in every case.  However some general guidance can be considered.

 

Firstly there should be a protocol, which reflects the Principles of the Mental Capacity Act, that anything done should be the least restrictive of their rights and freedoms.  Clearly the least restrictive is to do nothing, but this could cause serious harm to an individual at risk of wandering, which may be a risk to their Article 2 – Right to Life.  Therefore any protocol for wearing one of these devices should be on the basis that it is worn and used the least restrictive manner (in accordance with Principles of the MCA), which would therefore indicate that it should only be used when the individual is at real risk of being lost and in danger and not simply to check up on them.  Therefore once they are located and it is considered that the location is safe, then no further enquiries should be made and the individual should not be necessarily removed from their location. The individual is entitled to have their Article 11 – Rights of Assembly and Association respected.  If the individual is in a place that the carer does not consider safe, then they can be located and their safety established and if necessary returned home or to hospital or to wherever is appropriate in the circumstances.

 

There is a risk that this could be used for an oppressive level of either monitoring and/or control over the life of an individual.  A person with dementia is still entitled to live as well as they can and to make unwise decisions, if they have sufficient capacity to make such decisions, even if the carer does not agree with their decision/s.

 

The individual with dementia should therefore be entitled to live their life freely, go where they choose, associate with whomsoever they choose and should only have their location told to their carer, when the balance between the risk to their life is so great that it take paramount precedence over their right to their many freedoms.

 

The issue still remains, is it acceptable that a carer makes the decision that a person with dementia should wear a GPS tracker?  MCA s.5 indicates that any act done in the care of an individual for their care is lawful if it is considered to be in their best interests.  MCA s.5 is primarily aimed concerned at medical decisions, however does include the wording “care or treatment” [emphasis added], which could extend to the wearing of a GPS tracker for safety reasons, in the same way that “piper alarms” can be used in the home and considered part of their care.

 

Alternatively, it could be considered under the Research sections of the MCA (s30-34).  These sections relate to “intrusive research”, as part of a “research project”, which would need “approval” by the “appropriate body”.  These Research sections are primarily aimed at clinical trials, however on the basis that the research is the individual’s location, then these may be the applicable sections.  In which case, in order for the research (into the individuals location) to be lawful, it would have to have approval by the Secretary of State in the case of England and the National Assembly in the case of Wales.  If therefore opinion is such that these GPS trackers are considered Research rather than Care, then approval for them to be worn should be sought, on the basis of a defined protocol, that they would only be used to the extent that the risks to life outweigh the risks to rights and freedoms.  The remaining issue is that of a “research project”, however if a protocol can be agreed, then the body making the application for approval can do so on behalf of individuals and companies for this research project.

 

The potential problems

The 2 main issues are firstly that someone with dementia will wander and have a serious accident or will be killed.  Just because someone has dementia, they should still be allowed to take a certain amount of risk.  It is about balancing the risk, but to be too risk averse just because someone has dementia would be to interfere too much with their privacy and freedom.  If it is important to the person with dementia that they can have freedom to roam, then there must be an acceptance that is the price they pay to retain that freedom is a certain amount of risk.

 

The second issue is that the carer will use the tracker too oppressively.  A good example of this is a husband and wife, if one of them were to roam and have an affair, then s/he should have freedom to do so, even if their spouse and carer, doesn’t want them to. Having an affair isn’t illegal and the spouse should not use the GPS tracker to interfere with their freedom of association, to do so, would be a breach of their human rights.  But it’s very hard for the spouse / carer not to interfere, as there is a conflict in their role of carer and the role of spouse.  The issue may not be an affair, but the person with dementia has freedom of association, so should be allowed to go where they want and meet with whomsoever they want, as long as it isn’t illegal.

 

Summary

It is likely to be lawful for a person with dementia, who lacks capacity to consent to wearing a GPS tracker, to have one placed on them by their carer if the protocol for locating them is followed and it is considered to be in their best interests to wear it.  Approval by the Secretary of State or Welsh National Assembly may be required.  In every case, it still has to be considered in the best interests of that particular individual with dementia to wear it, by their carer.