Tag Archives: Dementia

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.

Caring for a dying relative

4 May

A coffin with a flower arrangement in a morgue

Caring for a dying relative

 

This is a very hard subject.  We don’t like to think about ourselves or our loved ones dying, but it is nevertheless an important subject.

 

If our loved one dies instantly, it is a huge shock, especially if we have not been expecting it.  If you have not had a conversation, then the next stage is commonly a state of shock before you can move into a more active mode of sorting out the arrangements.  This state of shock can last varying amounts of time, we are all different and how we deal with grief is different.

 

The death needs to be registered, the funeral arranged and then afterwards the estate can start to be sorted out.

 

If our loved one dies fairly quickly, this may give us an opportunity to say goodbye, to thank them for being in our lives and to let them know that they can go, if that is the right thing to say to them.  Saying thank you and goodbye is something we do for us, for them too of course, but letting them know that it is OK to go is something we do for them and a bit for us.  How we do that and whether we can do that will be different, sometimes we are not ready to let our loved ones go, especially if they are still young and we think that they have not finished their lives.  We can then have a little time to process the situation and try to emotionally deal with it.  And we cling to hope.

 

If our loved one dyes a lingering death, then we have that time to say thank you and goodbye and assure them that it is OK to go (assuming that it is).  We are upset and then process how we feel about it, however we cannot live on the adrenalin that this heightened state of anxiety will give us, so we get slightly used to it.  During this period of waiting, our loved one might rally, so we are given hope, perhaps only a glimmer or maybe a shining light, but we have hope.  And then they deteriorate and our hope dies.  If they have a fluctuating presentation, we can cycle through these emotions of despair and hope and we start living slightly on edge all the time, just waiting and not knowing.  This is very hard to watch as we see our loved one slowly slip away.

 

What happens if our loved one experiences a painful death?  Pain is something most of us fear.  We often wish we could trade places with a loved one in pain, but we can’t.  We can hold their hand, talk to them, feed them, play them music and lots of other things to try to comfort them and us, but we cannot take their pain.  Pain can be managed with drugs, but often it cannot be eliminated, watching a loved one in pain, whether or not they are dying is a horrible experience for both them and us.  I have been involved with many families when they are dealing with a loved one dying and a “peaceful” death is preferable, even though the death is often dreaded.

 

There is a finality with death, our relationship is forever changed, we can still love them, just not in person.  Death may be the time we stop and grieve, but if we are involved in sorting out their affairs, we may keep ourselves busy with that and not grieve and it is only when that is over that we do finally stop and grieve, which can come as a huge shock to anyone not expecting it, particularly since the death was some time before.  Greif takes time, but we can get over it and move on with our lives.

 

If during any of these stages we need help, friends and family may be around, but if we are faced with administration, legal or advocacy issues, I am here to help.  And I understand.

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.

Being a carer

2 Mar

shutterstock_74083021 (36)

Being a carer

 

Carers are amazing.  They have a tough job, living their own lives, doing the best that they can (it’s what we all try to do) and then on top of that they have the responsibility of supporting another human being.  The responsibility of trying to make their lives better and keeping them as safe and well as can be achieved.

 

They often do this will little or no thanks from the rest of the family and not always with thanks from the person that they care for.  Depending on the level of insight that the cared for person has, they may want to take unreasonable risks and feel themselves restricted, for which they are angry and resentful.  They may have side effects to their condition that mean that they self-harm or harm others.  This can be incredibly distressing for carers to watch and be involved with or the target of.  And they still do their caring role, even in the face of all that.  I’ve met many carers who tell me a story along the lines that other family members come into the situation infrequently, tell them how they are doing everything wrong and then leave without helping out.

 

Everyone who has a loved one that isn’t well gets stressed about the situation and we all have different ways of dealing with that stress.  Some people deal with the stress by avoidance, anger or blame and hence the family members come along and complain that things are not going well, what they are usually really concerned with is that things are not going well for their loved one, because they are ill.  But it doesn’t make it any easier to be a carer on the end of a family member’s rage!

 

It is not surprising that carers find caring a tough role.  If that person has only recently become unwell, they may be grieving for the loss of the person that they knew and grieving for the loss of their earlier life when they didn’t have a caring responsibility.

 

Carers should be acknowledged for the hard work that they do, in the UK each year they provide £11bn of unpaid care and 150,000 years of unpaid care each year!

 

Whenever I have talked to carers and told them that they are trying their best, so this is all they can do and therefore should be congratulated for their efforts, their faces blossom into a huge smile, they don’t hear it often enough!

 

I love supporting carers through the issues that they have caring for a loved one, they make a difference and I can make a difference to them with the issue/s that arise.  I am on their side and they are not alone.

 

My message to all carers is: Well done, you’re doing a good job, you deserve to be acknowledged for your efforts.

Dementia – internationally

17 Aug

Brain aging and memory loss due to Dementia and Alzheimer's disease with the medical icon of a group of color changing autumn fall trees in the shape of a human head losing leaves as a loss of thoughts and intelligence function.

Dementia in an international environment

 

Dementia knows no boundaries; it does not respect race, religion, ethnicity, economic power, social position, gender or sexual orientation etc.  Age is the biggest risk factor, but I have been advised that the youngest person ever diagnosed with it was aged 8!  1 in 14 people over the age of 65 will have it and 1 in 6 over the age of 80, with 1 in 688 under the age of 65.

 

Dementia will affect every nation and how badly it affects it relates to the age demographics of the country.   Diagnosis rates vary from 50% to as low a 4% or no doubt even zero, which means that in some places it is a hidden problem, but just because it is hidden, does not mean it is not a problem.

 

Many of the things that make care relevant to a person are entirely transferrable, such as the pharmacological responses (medications).  There are also social care responses, such as dance therapy, singing and pet therapy etc.  These can have cultural biases and may not be so internationally effective.

 

The response to dementia also depends on the legal framework in a country and their human rights record.  There are plenty of stories about people being tied to things such as a tree, as those caring for them don’t know how else to deal with them.

 

Any hidden problem can have stigma and shame associated with it.  This can have an impact, not only on the person living with dementia but their carers as well.  Since carers are often family members, this will have an enormous impact on the wider family.  When one member of a family has a significant caring role (which usually become the responsibility of the women of the family), it affects their economic position and when women are economically affected, this usually affects the children, as women often spend their money on their children.

 

In the UK we have many advantages, we have human rights protection, so no-one living in the UK should be physically restrained as a means of care management.  We have cutting edge research into the causes and symptoms of dementia.  We also have care and support via the Local Authority if it is needed, to allow someone to live at home and as well as possible for as long as possible.  With austerity, Local Authority funding is limited, so they are looking for the most cost efficient forms of care, which can have mixed results.  The ability to pay privately for care allows someone much more choice, including having a live in carer. If it is appropriate.

 

We also very importantly have the framework to create Lasting Powers of Attorney, so that the person with dementia can appoint someone to look after their affairs if they need to.  They can make financial and care decisions (assuming they have created both kinds of LPA).

 

We are fortunate in the UK to have support for both the person with dementia and their carers.  There are lots of things here that are making life better, including the Dementia Friends campaign, which emphasises the living well with dementia.  But wherever someone lives, it is still tough to live with this deteriorating condition for both the person and their carers.

How to prepare for the future – part 2

7 Jul

Senior businessman showing a document

How to prepare for the future – part 2

 

Following on from the Big Conversation I spoke at in May 2016, it is important to take action on the things that were discussed.  This does not mean that your life becomes obsessed by your dying, as there is a risk that you will forget to live.  If you have one conversation a year with your family about it and all of the others tens / hundreds / thousands of conversations you have are about living, truly living, then this is likely to be enough for your family to know your wishes, as long as the one conversation has enough detail on your wishes.

 

So part 2 is all about creating Lasting Powers of Attorney (LPA), which will allow someone else to make decisions for you, if you need to have them made, when you are no longer able to do that for yourself.  There are two kinds, one dealing with finance and the other covering health and welfare, so I will take those in turn.

 

The Property and Financial Affairs LPA covers all financial assets that you own, not just the big stuff, but all the little stuff as well, such as your jewellery, photos, furniture and clothes.  It of course covers your money and house.  If you retain mental capacity, but become too physically frail to sort out your finances, then you can allow your attorneys to act for you.  During this time, their actions should be limited to your directions and they should not make their own decisions for you, they can do that when you lose capacity.  So it is worthwhile that if you have a particular view about your finances, that you tell your family.  Also the things that people row about is often the little things, such as a particular picture, piece of jewellery, chair or table!  So if you know where those things are to go, then make your wishes clear, it will save a lot of worry, hassle and conflict!

 

Also if you want to stay in your own home for example, if you become unwell, then let your attorneys know, have the conversation around the risks of you becoming unwell and not receiving 24 hour care, but 4 visits a day!  If you don’t mind going into care, then tell your attorneys the kind of home you want to go in to.

 

The Health and Welfare LPA can only be used once you have lost capacity to make your own decisions.  The generically important decisions tend to be end of life decisions and where you live, which means whether or not you go into care and if so, which care home you go into.  But it includes all medical decisions and all social care decisions, which includes what you wear, what you eat, what social activities you can participate in and as such have a huge impact on your life.  So if you have a view about any of these, then tell your attorneys.

 

Both kinds of LPAs need to be registered at the Office of the Public Guardian at a cost of £110 per LPA (subject to means tested exceptions) and registration can take 8-10 weeks depending on how busy the OPG are.

Disability Awareness and the House of Lords post legislative scrutiny

28 Apr

iStock_000030084784_Full - Copy

 

Disability understanding and the House of Lords post legislative scrutiny

 

I recently took a disabled relative for a night in a nice hotel as a birthday treat.  This person has moderate dementia and mobility issues.  When booking the stay, I explained the disability requirements and asked if this business could cope and I was assured that they could accommodate my requests and that we would have a lovely time.  There were 3 of us going and we all wanted to stay in the same room / suite, so that we could all support each other.

 

When I arrived, we checked in and then went up to the room, we had been offered a tour, but the person with reduced mobility would not have been able to wander around the hotel, she could go up to the room and back down later to the dining room (using the lift), but not walk further than that.

 

On arrival in the room, which was a suite, the lounge room was dominated by the sofa bed that had already been made into a bed, which left 2 other comfy chairs and a dining chair in the room.  The dining chair was not a comfy chair to “lounge” in, so with 3 people in the room, there were only 2 chairs to sit on and with reduced mobility, it meant we could not realistically leave the room & wander around the town or even round the hotel.  We did get a lovely view of the beach, so the person with reduced mobility got to appreciate the beach, which they have not done in years, by just looking at it.  The other 2 sat on their bed or the remaining chair!

 

This room is clearly normally occupied by 2 people, so in the bathroom there were 2 glasses to rinse with.  On each of the 3 beds, the towels were laid out and because the hotel has a spa, the guests are given bathrobes.  2 of the beds had a pile of towels and a robe, the sofa bed had only towels, whoever was expected to sleep there, it felt like was not expected to use the spa, which all 3 of us could have walked to, as it was within the hotel.

 

The hotel had a ramp and disabled parking spaces and it was clear that they had read the legislation and made some adjustments in accordance with what is now the Equality Act 2010, but what had been the Disability Discrimination Act 1995.

 

I was emailed about a special offer happening after the check out time and told that I was welcome to stay, when I inquired about late check out, even though no-one else was in the room that evening, I was told I would be charged £15ph to check out late.  What felt like was not considered was that unlike other guests we couldn’t wander around the town and pop back, if we stayed, we stayed in the room.  The Equality Act is clear (as was the DDA) that an organisation cannot charge for “reasonable adjustments”.

 

What was also clear is exactly what the House of Lords post legislative scrutiny of the Equality Act had found, that businesses consider the burden of disability on themselves and don’t think about it in terms of the person with disability, that’s certainly what it felt like in this case.  The House of Lords also found that the most of the adjustments that need to be made are either free or very low cost.

 

At this hotel, we had been asked what the occasion was, so a birthday card was left in the room, but no-one had discussed in detail what we were going to do and how the disability would affect the 3 of us.  It seemed like no-one had thought about what it was going to be like to spend 22 hours in a room that was dominated by a sofa bed that was only needed as a bed at night, that one party was considered unworthy/unsuitable to have their own glass, bathrobe or chair!  In other words, it felt like no-one had put themselves in our shoes and thought about it from our point of view.

 

If the sofa bed had been turned into a bed when went downstairs to have dinner, that would have made a difference and an extra glass and bathrobe would have also made a difference.  The changes to make the disabled person experience the hotel like everyone else as far as possible were small.

 

It felt like the staff hotel just hadn’t thought about disability and that they had had no awareness training, they didn’t understand what it is like to be disabled or a carer of someone disabled, so they failed to care for the party with a disabled member and also failed to comply with the obligations under the Equality Act.  People with disabilities are still people, we were not offered a discount rate, the money we paid is the same as someone able bodied, but it seemed like we weren’t treated the same, I hope disability awareness changes!